With 60,000+ women diagnosed annually with DCIS (Ductal Carcinoma In Situ), it is estimated that there are over 1 million women living with a DCIS diagnosis.
Fear, confusion and overtreatment are life-altering problems that many women diagnosed with DCIS feel totally alone with.
“The time is now to discuss a change in the approach to DCIS. We should be demanding change.” – Dr. Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Care Center, UCSF
“Strong consideration should be given to changing the phrase DCIS to eliminate the ‘anxiety-producing’ term carcinoma.” – Dr. Carmen Allegra, MD, Chief of Hematology and Oncology, Shands Cancer Center, University of Florida
The purpose of this site is to help alleviate the misconceptions surrounding a diagnosis of DCIS, also known as “stage zero” breast cancer. It also offers support and resources to empower women in making informed decisions as well as in being proactive with healthy lifestyle strategies for breast cancer risk reduction.
Please explore the website, comment, and share with anyone who may be interested.
Please “like” our Facebook page or “Follow” to join our Proactive Breast Health Club and receive emails alerting you to new blog posts about DCIS and healthy living.
Lauren Mancini said:
Sherry Mollo said:
I cannot figure out how to use this website to ask questions or give my personal story. I do not have Facebook or Twitter.
You can ask a question anywhere on the site where it says “LEAVE A REPLY.” You can leave you story by scrolling down to the bottom of “STORIES” and LEAVE A REPLY or send your story in 500 words or less to me at firstname.lastname@example.org and I will upload it as “Sherry” with a drop down menu under “STORIES.” Thanks for the feedback. We want to make it easy for comments and questions. May be best to comment or ask a question within the topic you are inquiring about. Please let me know if you have other suggestions or need more assistance. Thanks for visiting the site! We look forward to hearing more from you! 🙂 Donna
I’m a 46 year old female living in San Francisco, CA. On 11/1/2013 I was told I had grade 2 DCIS in my right breast. I’ve had no previous breast issues other than benign lumps which caused no issues, I also do not have a history of breast cancer in my family. On 11/11/2013 I had a lumpectomy with clear margin. I’m healing well no complications. On 12/2/2013 I had an appointment with an oncologist who told me the treatment, and my treatment for DCIS was radiation and tamoxifen. I’m pre menopausal, have no menopausal symptoms. I’m terrified of tamoxifen. Anyone out there on it and would like to share her story?
When I left the oncologist office I was left thinking I had no choice. The doctor did not give me any options or statistics, instead he referred me to radiologist oncologist for radiation, gave me a prescription for tamoxifen and told me to see him in three months. He made no mention to the horrible side effects of tamoxifen.
So, being that I live in San Francisco and UCSF is in my backyard I’ve decided to get a second opinion from Dr. Essermans group. My instincts are telling me I’m being over treated. I’m not looking for a doctor to say I don’t need radiation or Tamoxifen but rather give me statistics . Thank you for reading my story and please let me know your experience with tamoxifen.
Not all DCIS patients need radiation and taking tamoxifen is also controversial. The Van Nuys Prognostic Index (VNPI) is one way to calculate your risk of recurrence without radiation. A newer less tested way is also the Oncotype DX for DCIS.
In 2007 I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist,with a consulting service anyone can use. He calculated my risk of recurrence without radiation (after my lumpectomy) as only 4%. He lives in Tiburon which isn’t all that far from you. His website is: http://www.breastcancerconsultdr.com/index.html.
Dr. Lagios also does not believe tamoxifen is of much value for DCIS patients. Check out these links on his website:
Dr. Esserman on the other hand is a big proponent of tamoxifen. However,if she quotes statistics from studies, make sure you understand and ask for both the relative risk reduction benefit and the absolute risk reduction. A reduction from 4 to 2 percent might be a 50% relative risk reduction, but it is only a 2 percent absolute risk reduction.
Anyway you do have choices. Take your time in deciding what is right for you.
Dear Love Tennis60,
You are a true Angel. Thank You so much for providing me such valuable information. I’ve read his website and will use his services. I’m fortunate to have him in my backyard.
I’ll keep you posted. 🙂
Danielle in San Francisco
I used Dr. Lagios he will provide the pros and cons. Well worth it to talk to him! Radiation & tamoxifen is not always needed. Lagos cites trials where it does not work. Radiation reduces risk but again not always needed if you have negative margins and reoccurrence is low.
I felt the same way and had to obtain outside expertise to understand it as doctors push the standard radiation and medication which is not right approach.
Doctors are sometimes like Ford salesmen,they will never promote a GM car. We all have options,please research further more. I just had a lumpectomy for dcis stage 0. I decided i will not take any further treatment and guess what, the radiotherapy and hormonal doctors offices are blowing up my phone like those annoying courtesy call none of us want. I hope whatever decision you make will be made with full consciousness and not out of fear. Praying for you
I had the opposite experience. After surgical biopsy/lumpectomy my Rad onc said I didn’t need rads, I chose partial breast radiation. The onc doctor sent me away with her support to not do endocrine therapy.
Marianne, your doc has a conscience. My pulmonologist told me absolutely no radiation, he said it would definitely damage my lung. I haven’t had any additional treatment since my lumpectomy, all I have done is changed my diet and lots of prayers! I hope we all heal and never have to deal with this again.
Just an update to anyone that finds this helpful – I had a mammogram earlier this year in March 2022 (typically an MRI at beginning of each year followed 6 mos later with a regular mammogram check; this cycle began in early 2018 since my DCIS Stage 0 dx in 2017). While there have been different things throughout the 5 years that have come up such as a mucocele lesion, I have no had any other changes that have resulted in additional DCIS or worse being located. I’m not so rough on myself with respect to sweets although I am still very aware of sugar intake and make all attempts to only use natural sugar (mostly honey or coconut sugar). I am exercising regularly and trying to maintain a healthy diet….of course, always trying to come to terms with emotional baggage from childhood, life, etc.
Deidre, thanks for sharing your update, I also try to stay away from sugar and also use the natural raw sugar when in extreme. I also started using a steam sauna to break a sweat since I’m not into working out, which ever little I can do to release as much toxins as possible I’m on it. Wish you the best
Sue Bugansky said:
“Good news or bad news?” I was recalled for a second mammogram on 11/18/2013 after the first one (11/13/13) showed “suspicious calcifications”. (My previous mammogram was in August of 2012, on which nothing suspicious showed up.) Subsequently, I was referred very quickly to the same surgeon who, in January of 2010, had removed calcifications from my other breast via surgical biopsy (after core biopsy had already been performed) which were determined to be atypical hyperplasia. I saw the surgeon on November 25, 2013, and underwent a stereotactic needle core biopsy on December 2. On my followup visit to the surgeon on December 9, I received the same “good news/bad news” diagnosis that I had received for the 2010 hyperplasia diagnosis. However, this time the diagnosis was DCIS. Although I am usually a fairly calm person the word “carcinoma” is enough to send anyone over the brink–which is exactly what it did to me. Everything moves quickly in the realm of “standard treatment”, however, so I had the lumpectomy recommended by my surgeon on December 18, 2013. Since it was close to the holidays, my followup appointment is not until December 30; however, my surgeon said after the surgery that he would call me today (the 23rd) with the results. He did not call. I became more and more upset after reading various blogs, cancer sites, etc., so I called the surgeon’s office for my results. He called me back within 15 minutes with this information:
No tumor was found during the lumpectomy. He removed scar tissue and hematoma left from the needle biopsy and generally cleaned up the biopsied area. No cancer was detected in the sample because the small area that had existed had been removed by the core biopsy. There were no “good margins” because there was nothing left to excise. I asked if I would then be referred to an oncologist to which he answered that we would discuss further treatment during my followup on December 30.
Ok–so here is my question: Do I opt out of the “standard treatment” of 5 to 7 weeks of radiation followed by 5 years of Tamoxifen because of the small-size, no-cancer-left results? I have convinced myself that the treatment will be recommended by both the surgeon and the medical oncologist because it is “standard-one-size-fits-all” and routinely given. Before I even had my surgery, I had decided on NO radiation and NO Tamoxifen to which my family physician responded negatively when I told her. I am a post-menopausal 66-year-old female in excellent health who is very active, strong, and mentally healthy (at least until this little bump in the road). I have no family history of breast cancer. Being tied to a daily treatment for 5 to 7 weeks would be difficult if not impossible for me. I also shy away from filling my body with alien substances such as Tamoxifen. I fear the side effects and end results from both treatments, as well.
Thanks for letting me vent even if there are no pat answers out there!
Sue…You sound just like me! I wqs 65 when I got the news”….I have not done the drugs nor the rads…..no decision….I just don’t “seem to get there” to be mapped! So I guess it is a decision. How are you? I am doing everything VERY healthy and trying to prevent a recurrence. I just think that rads is over kill…esp, if it comes back you are guaranteed a mastectomy. My thinking is that I will be vigilant and healthy and if it recurs, I still have the option….just Lord, let it not be invasive. The drs act like DCIS is not big deal….but then want to treat you like you are a full blown case of invasive. Would love to hear your response.
Sue Bugansky said:
Katrina, Hope all is well with you and you are content with your “decision”. I did succumb to the rads but not the meds. Why, you wonder? So do I! Certainly it was an inconvenience and perhaps not necessary. However, the surgeon and radiation oncologist (both men) recommended the rads to prevent recurrence just in case a small cell had escaped and would later do damage. The medical oncologist (a woman) encouraged me to enter a clinical trial, do the rads, and then follow up with tamoxifen. I went with the recommendation of the men. I went every day for 5 weeks, not 7 (took a stronger dose to shorten the agony) throughout an extremely brutal winter. Surely the stress of that (winter) and keeping an eye on my mother who lives 75 miles away were not good for my health. I had my 6-month check recently–all was well. Fingers crossed! Looking back, I am glad that it’s over and hoping I never experience anything like it again. If it comes back, I will not be able to do rads again, as you said. Guess I will deal with it then.
Wishing you the very best.
Joan Merwyn said:
Latest study verifies your work! My lumpectomy was probably unnecessary, as I suspected…
Sue Bugansky said:
And mine–and how many thousands of others? I might have acted differently if not pressured to do radiation as well… 13 more dehumanizing treatments to go…DCIS size was minuscule. And the bills keep pouring in.
Joan, thanks so much for posting the NY Times article!
Sue, the pressure is so incredibly strong to do radiation following lumpectomy. My husband told me he would have done it after our visit with the radiation oncologist. It was something I never actually could consider for myself. I researched and researched and couldn’t make sense of it. Nor could I consider mastectomy. I thought the Drs and the “standard of care” treatments of low grade DCIS were totally NUTS. My research confirmed my intuition. I found Sandie Walters (dcis without rads) and I felt better that I was not alone.
I totally can empathize with the bills pouring in on top of it all! The stress it creates is unbelievable…and can cause more inflammation in our bodies, lowering our immune systems to fight off any “abnormal cells.”
I am still continually pressured to have mammograms….NO WAY can anyone ever convince me that I should do this to my poor, damaged breast. If cancer ever were to develop in my right breast, it would be because of the harms done following a “suspicious mammogram”…which led to a “giant” needle biopsy with a titanium chip (unknowingly) placed permanently in my breast, excessive Dr. visits, way too many mammograms and 3 highly invasive lumpectomies (all leaving close or positive margins — which in itself is absurd). All of this “cancer treatment” was probably unnecessary)….thanks to succumbing to the pressures of having annual mammograms starting at age 40.
All we can do now is share our stories, share important studies and inform others.
Thanks for joining in the conversation and sharing your experience and feelings.
Blessings of health and peace, Donna
Carol D said:
I’m so glad I found this place. My story is similar. I’m 60, been getting mamms since I was 40. A few years ago, they thought they saw something, but on other ultrasound ruled it out. I might add I was getting one years ago before that where the tech accidentally had the machine go tighter instead of looser. I jerked and had a red mark across the left breast for a week or two. This breast has been aching for years since. Fast forward to this fall. I’ve moved to a new area and have a new dr. This time they saw something, did 2nd mamm, decided needed biopsy. It was contained in milk duct, clear margins. It was <1 cm. I never felt it, but had horrible pain in that breast after the ultrasound. When the dr did the needle location thought I was going to jump off table, THEY COULDNT FIND IT. The radiologist told me it shouldn't hurt because there are no nerves in the breast. She finally stabbed it. Next surgery was sentinel lymph nodes biopsy. Nothing there. Oncotype was sent off and low score. It was estrogen pos, I don't remember other results, but one was indeterminate.When I met with oncologist and told her I didn't see point of treatment since it was tiny and all rgone, you should have seen the look on her face. She told me that death from breast cancer was a horrible way to die, she told me that if it came back in my bones, there was nothing she could do, but then when I asked about radiation side effects, she said I would have to talk to the radiologist, since she wasn't one. She asked if I didn't want treatment, why didn't i have a mastectomy ? I told her they did not give me that choice, and I reminded her that the first time I saw her I told her the breasts could go if they were going to kill me. I had no children and they've never been used. ( I do wonder why our breasts are considered "sacred " and you must save them at all costs. ) I kept telling her that since I'm 60, the likelihood that I'm going to have more health problems as I age and the treatments she was advocating would probably take me down the path quicker. She was not happy with me. The last thing she asked me was why did I get mammograms all those years if I didn't want treatment? I tried to explain to her that I was trying to do what the medical community wanted me to do and I truly believed that everything was removed. I was never so glad to get out of that place. I feel fine except that I am 60 years old. I just can't see making me sick with treatments when I feel fine now. I've never been one for taking unneeded medications. I still have pain in that breast when I am stressed. I am still scared, but I'm more afraid of the treatments. It seems weird to be getting treatments for something that is not there on the off chance that it "could" be there.Would love to have any suggestions . Thanks in advance.
I can empathize with your DCIS experience. They found my DCIS when I was 58. Although my journey wasn’t as painful as yours, all the doctors I talked to in my hometown wanted to do what I thought amounted to overtreatment.
In my opinion some of your oncologist’s comments were not only inappropriate but down right unprofessional and just plain not true. You might want to talk to another oncologist who doesn’t try and scare you into doing something you obviously aren’t comfortable with. Standard of care allows for lumpectomy alone for some DCIS patients. In fact a few oncologists are suggesting active surveillance for non-high grade DCIS.
Although your Oncotype DX score was low, which indicates your risk of recurrence is low without radiation, you could also ask a radiologist what he (she) thinks your personal risk is without radiation.
In 2007 I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service anyone can use, to determine my odds of recurrence without radiation. He used the Van Nuys Prognostic Index to determine I only had a 4 percent risk of recurrence. Since radiation only reduces your odds by 50 percent, a 2 percent reduction was not worth it to me. (see my personal website: http://dciswithoutrads.com/).
There are also much less toxic things you can do to reduce your odds, such as eating right and choosing specific cancer inhibiting foods, exercising more, limiting alcohol, taking certain supplements, balancing your hormones with bio-identicals, etc. (Check out our prevention pages: https://dcisredefined.org/integrative-solutions/natural-risk-reduction/).
Also feel free to email me anytime at email@example.com.
Thanks for sharing. Keep the faith. You are not alone.
I have read the website and forums concerning DCIS without radiation or tamoxifen. I feel in my heart this is what is right for me. Thanks to Donna’s website and this one, i have requested the Oncotype DX test and Van Nuys. My oncologist encouraged me to visit again with the radiation oncologist. When I questioned her and voiced my concerns/issues, she was so defensive.
One of my concerns is the damage caused by radiation, the unknown side effects that may surface later, and the immediate side effects. I have a fabulous trip planned for this summer which has basically kept me going. When I asked her about how this would affect my trip (fatigue, sun exposure, etc) she literally said, “You need to get your priorities straight.” and walked out the door.
I was dumbfounded. This is a dr whose job is to be patient and listen/answer my questions and concerns no matter how trivial she thinks they are.
At this time, I will continue to fight for my gut feeling which is NOT to go through radiation or drug therapy.
One thing I don’t understand and she mentioned over and over was my age. I am 46. She said that all the studies and the women to do not undergo radiation are older and that my age was the primary reason to do radiation. She consulted several colleagues who all agreed… of course. Why wouldn’t radiation oncologist prescribe the same remedy?
Is there anyone out there who is in their 40s who has had DCIS removed (lumpectomy) and did not opt to have the radiation/tamoxifen? And who is successful with no recurrence.
When I was diagnosed with DCIS in 2007, I was 12 years older than you are now. I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use. After my lumpectomy, he used the Van Nuys Prognostic Index and calculated my risk of recurrence at only 4 percent, without radiation. Because you can only use radiation once, I opted to save it in case I ever got invasive breast cancer. The typical 50 percent reduction would have only been 2 percent for me.
Your gut instinct to request the Oncotype DX and Van Nuys Prognostic Index tests is right on. What you need to find out is what your personal risk of recurrence is if you too decide to opt out of radiation.
Additionally there are other less toxic ways to reduce your risks. These include diet, exercise, limiting alcohol, certain supplements and making sure your hormones are balanced.
Keep searching until you find what is right for you. Because DCIS is non-invasive, it can not kill you. You don’t need to rush into anything.
Please also feel free to read more of my story at: http://dciswithoutrads.com/.
Terri H. said:
I am waiting to hear back from pathology for results regarding my lumpectomy. I was given the diagnosis of DCIS. It has been difficult waiting. I should know tomorrow the results of the surgical biopsy. Would I have to do rads and tamoxifin (?) even when there is so much inconclusive research on whether it helps those with DCIS? Are there healthier alternatives? Thanks for your replies!
Terri H. said:
Thanks fosr all the sharing! I am a 46 yoa, and I am in the process of deciding whether I will receive rads and tomoxifen, my gut is telling me no! I think the treatment is worse the cure, which the medical community does not have yet! But I do believe the homeopathic world does… I just went through 2 lumpectomies… waiting to hear I have clear margins now…
I need advise how to ward off the doctors, cause we are not convinced this is good medicine! I have three friends who told me if they could do it again they would of skipped the rads because it did them no good in the end… I am looking into essential oil, cleansing my body and my spirit and continuing to exercise…
Sounds like you are on a wonderful health-promoting, cancer prevention path! Your gut led you here and I hope you explore the site and find some excellent resources and support. I would also recommend looking at my blog http://www.dcis411.com.
Both Sandie and I would highly recommend a 2nd opinion from Dr. Michael Lagios, a 30 year expert DCIS pathologist who offers consultations http://www.breastcancerconsultdr.com/ While he may or may not recommend radiation treatment for your personal situation (after examining the tissue, images and calculating all the factors using the VNPI), his expert opinion truly provides peace of mind no matter what you decide. He also sees no benefit to Tamoxifen and sites studies for his perspective.
Please keep us posted and let us know if you have more questions. Be well, Donna
Kim Davis said:
I stumbled upon your site as I was dx with DCIS on September 23, 2014. I felt that day to be the worst day of my life…I cried for two days, because all i heard was the word “cancer”, which for me is such a mean and evil disease.
I have been reading testimonies on your site all morning and would love to recieve other information.
I am researching my options before I schedule my first appointment…however after reading some of the stories I do not need to act as aggressive as I was told…
I have a few questions:
Is surgery necessary if my dx is grade “0”?
If so…does that mean I need surgery within the next week?
Most of the success stories stated they opt out of radiation…please shed light on reasons why radiation is not necessary.
Are there foods I should remove from my diet?
Should I eliminate alcohol as well?
I am so new to this I could go on and on with millions of questions.
Thanks so much for sharing your life journey.
Kim from Texas
Hi Kim, Glad you found our site. Your questions are similar to the questions we have all faceed. We have articles here with studies on radiation: https://dcisredefined.org/choices/rads/ as well as diet: https://dcisredefined.org/integrative-solutions/natural-risk-reduction/diet/. Please see the posts on Van Nuys Prognostic Index: https://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index/ and https://dcisredefined.org/dilemmas/sandies-dilemmas/. Please read through everything that you can….There is a lot to take in, but the important thing to know that you have TIME and there is NO RUSH to have surgery. More health tips and what to eat/eliminate can be found here: http://dcis411.com/health-tips/. Please know that we have all been where you are and it will get better. It is so overwhelming in the beginning. Hope this site helps! Much love and blessings, Donna
debbie sullivan said:
I just found this website and I’m so thankful! I was diagnosed with dcis in 2013 and was shocked to find out the standard treatments for stage 0 cancer! I didn’t have time to do much research and felt I was being pushed into a much too aggressive treatment. I decided on my own to have the lumpectomy and to refuse radiation and tamoxifen. I was fortunate to have a surgeon brave enough to back me up. He now schedules my mammograms for me. I have been ridiculed on one forum, and even my pcp thinks I’m crazy! When I read about all the women who choose mastectomy for dcis , it breaks my heart.
Debbie. I would love to know your age and or anyone that chose no radiation or Tamoxifin diagnosed with DCIS in their early fourties.
Glad you found our site! My personal story and choice for NO RADIATION and NO TAMOXIFEN can be found here: http://dcis411.com/donnas-journey/
I have found this site through dcis411, which I started going through thoroughly yesterday evening and still keep on going.. 🙂 but decided to post as I have just been diagnosed with DCIS stage 0, non-invasive, though highly graded & progesterone-receptive and have already had a whole treatment laid out by my breast surgeon, though with not enough information given to me (other than a huge book I won’t even dare to open) and rushing me to go through treatment as soon as possible. And the more I read the more questions I have.. and my BS just keeps on saying I need to see other specialists. Which is fine and I understand and I’d also want to get rid of the “fracker” as soon as it’s possible, but as many of you say – I want it to be an informed decision..
1. my DCIS, even though stage 0 & non-invasive, is highly graded and multifocal, so – with my B cup bra, the suggestion is to go with a mastectomy of my right breast. I first thought of just a lumpectomy, but understand in my case the results (cosmetic) would not be satisfactory. Plus it’s highly graded. I’m fine with that, it will spare me radiation. However – I would like to be able to have a skin & nipple sparing mastectomy (I’m only 37), and my BS tells me we can’t do nipple sparing, as there are some calcification close to the nipple.. we’re not sure if they are cancerous (they were not biopsied, just discovered post-biopsy), but have to be removed as well.. I’m still not sure about it – is it not enough to have a “foreign” object in your body (implant), I have to get rid of my nipple – I want my nipple – that’s the least they can do for me (!). So my first question would be – if there is no actual cancer in the nipple – is it worth getting a second opinion about sparing it?
2. my BS told me that during the mastectomy she’ll remove sentinel node and biopsy it. My friend just told me that that means removing all active nodes – is that true? And is there a way to biopsy the node without removing it? I’m worried that they may not find any cancer in it, but you can’t just put it back in? Do you know if this is standard practice for DCIS? (I’ve had MRI done & it didn’t show any loose lymph nodes (not sure if this is exactly how she said that, but that’s how I’ve heard that)) Once again – I’d prefer to keep my lymph nodes..
3. I’m really torn because of the second opinion. I live in VA & currently being treated at INOVA hospital in Loudoun cty, but my friend referred to me the team that treated her at Georgetown University Hospital. I’m thinking of scheduling an appointment, but what if I’m only going to be more torn as to with whom to go for treatment afterwards? I know it’s my decision only, but it’s about my health, my life, & my boobs – and that’s why taking the right decision is so darn difficult. Has anyone of you used either hospitals? Is it always better to go with a university hospital?
4. Since my DCIS is progesterone-receptive, my BS did say she’d want to put me on tamoxifen. I’m not doing it, I’m 37 and I’ve been fighting infertility for the last 6 years, I want to at least consider having children a possibility. And I don’t believe tamoxifen would be a good fit for me. Does tamoxifen work as progesterone inhibitor as well? And if it does – is there a natural safe alternative for childbearing age women?
5. Even though the lobby of reproductive clinics is very strong and you cannot get a definite answer as to whether the fertility treatments increase a woman’s chance of getting a breast cancer, it is a no brainer to me – sadly – post factum. I’ve been on progesterone and estradiol over the last 1.5 years, even though my hormone levels were fine – it was just the clinic’s standard procedures. I strongly believe it had it’s hand in my DCIS. Just like they did finally agreed that hormonal replacement therapies increased women’s risk of getting breast cancer. Have any of you had breast cancer dx after fertility treatments?
I’m sorry about this very long post (hope I won’t lose it before I click send). Please also forgive me if I’m posting it in a wrong place..
Since the dx I’ve had better days and worse days, it was a blow, just like my infertility and loss of my only pregnancy in August this year.. all happening at the same time. I feel like I need to move to some remote place in the world, distress, relax, and find out why all those things are happening to me. I have a huge will to live, but I’ve had some very scary moments lately as well, of really dark thoughts, and I’m trying to do my best to keep them at bay..
Big kudos for this website, and dcis411, both gave me a huge boost of hope and made me feel just a little bit less alone in this scary DCIS world..
I am so sorry, it seems your post got lost and I did not see it so it never posted until I just “approved” it now. I hope you are doing well and wonder what your status is. Would love an update. How are you doing??? Blessings and my apologies again, Donna
Over half a year later, I’m doing fine, thank you. 🙂 I’m still.. searching for my happy place in life, but at least I have a goal. 😉
I’ve had my mastectomy (with expander, replaced by an implant later on) in December ’14. They didn’t spare my nipple, even though I got a second opinion from a specialist in nipple-sparing mx, and she said we could go with it. My original BS scared the c..p out of me saying she’s confident the disease was in the nipple.. after hearing that I wouldn’t have been able to sleep at night if I went on with a nipple-sparing mx. Histopathology results showed no disease in or near the nipple, the two tiny calcifications closer to the nipple were benign.. well, nobody will put my nipple back on. I’m planning on a nipple reconstruction later this year, and then a tattoo.
I also hit a wall w/r to the sentinel node biopsy.. apparently nobody does just a biopsy, as this seems a difficult procedure? Maybe not reliable?.. not sure, but the standard is to remove the sentinel node(s) during the surgery and do a resection. That was the part that I was really angry with, though for the sake of my sanity ;), have come to accept. They removed 4 sentinel nodes, and as the 5th was stuck with the 4th, they removed altogether 5 nodes. All clear. I was not happy about it, but didn’t have much say in it..
After a long talk with my oncologist (who, by the way, is the most wonderful oncologist I could ask for), I’m skipping Tamox. In my case it may result in more hurt than benefit, plus maybe I’ll still try to get pregnant.. for the time being I’m still rebuilding my strength ,emotionally, and not rushing anything in my life..
I’m happy I was spared radiotherapy.
I realize DCIS only turns invasive in 30-50% of cases (according to doctors I talked to). Mine, however, was highly graded, with comedo necrosis, and bifocal. That made my decision to do a mastectomy rather easy. If it was just one spot and DCIS was low grade.. I may have decided to do a lumpectomy, only, opting out of radiation and tamox..
Oh, btw, to correct my original post. They found positive estrogen receptors in my DCIS, not progesterone (if it was the other way around, it would indicate an error in results).
All the best to all the women going through DCIS dx and treatment. I believe the most important part is to remember that DCIS is not an invasive form of cancer. It does not spread. It is curable. 🙂
Thanks so much for your detailed update Kas.Wishing you much peace, love and happiness.
Samina Arfan said:
I would like to become a member of the breast health club please
Great — just go here: https://dcisredefined.org/2014/05/23/proactive-breast-health-club/
2 easy steps to join:
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I am 57, had a call back on a mammo for a cluster of calcifications, left breast. Left one has always had issues with cysts of all types. Grandma died of breast cancer, sister had breast cancer, same breast at age 40/mastectomy, other sister had biopsy same breast again- with calcifications that were benign. I guess our family has bad left breasts! So had ultra sound, then core needle biopsy. DCIS diagnosis. Breast MRI. While waiting for the doc to get back from vacay, I went and picked up my results so I could be prepared to discuss at my appt. in 2 days. I have ‘high grade’, and another word ‘comedo’. both the biopsy and MRI said malignancy. Estrogen receptor is 90%/strong. Also MRI wants me to have 2 lymph nodes looked at under ultra sound. Reading about these are freaking me out. They say stage 0…but now says malignancy. High grade says fastest growing, most likely to reoccur. Radiation does scare me.. feeling like a mastectomy is best option…I just want to be rid of it. I don’t want to trade one problem for another. If I have radiation and it comes back anyway…then it’s a more difficult mastectomy because of tissue changes after rads. Would appreciate any advice. Live in Nor VA. Thanks, Laurie
Did mine ever get approved?
Yes, Laurie. I would suggest a 2nd opinion from Dr. Lagios before making treatment decisions. The pathology is wring 25% of time. Look under “resources” on this site.He is amazing and can give the best, most personalized advice for your particular cells and situation. There is no rush with DCIS. Also see http://www.dcisredefined.org for info and resources. The mind can play tricks and the fear can take over. Important to empower with yourself with “alternative” info and know that even invasive cancers are being healed every day without drastic invasive standard of acre conventional treatments. Get as much info as you can and make an informed calm decision that makes the most sense for you. Are you on Facebook? There is a great “Alternative DCIS” group. Very helpful in the moment with quick answers and lots of support. Blessings, Donna.
Priscilla Thompkins said:
Cannot find a spot to join or enter email???
Click on “Proactive Breast Health Club.”
Priscilla Thompkins said:
Please add me to email
Mari Sherpa said:
It is so wonderful to see so many women taking their health into their own hands! I am a Family Nurse Practitioner and have been practising medicine for 27 years. On October 21, I was diagnosed with DCIS stage 0 high grade 3 ER-/PR- comedonecrotic in two sites in my left breast.
The recommendation, of course, was that I have a lumpectomy with radiation. I am in the Foreign Service and was leaving the very next day for my next assignment overseas where I am now (Philippines).
I contacted Dr. Laura Esserman who said “this is not an emergency…you could likely get by with lumpectomy and forego radiation”. I would like to send my original pathology slides to Dr.Michael D. Lagios, M.D. and see what he has to say. Does he only do post lumpectomy analysis? My biopsy was a stereotactic procedure that totally hammered my left breast. It looked like an eggplant for weeks. I still have a hematoma that is slowly shrinking. Right now I am taking a ton of supplements, eating a raw foods diet two meals per day and vegetarian dinner. Avoiding alcohol and other toxins, as best I can and waiting for additional products I ordered to show up in the mail so I can try my cancer killing protocol!
I am going to try artemisinin which has been found to be toxic to cancer cells but not normal cells and binds to transferrin to kill them. It is an antimalarial that has been used in China for years against breast cancer. I exercise daily doing water exercises. I also try to limit the stress in my life and laugh a lot. Fear is the hardest emotion to dispense of….But I start Yoga tomorrow. So I am trying everything in my power to make this go away….and once the hematoma is completely gone, will have an MRI to see where we are at.
I also have Type 1 Diabetes. I believe this diagnosis was thrust upon me (the DCIS one that is….) so that I could find a protocol that actually works for my n=1 study…and then let you all know! I can’t hate big pharma because I am dependent upon them to stay alive….ie; they make the insulin that sustains my life. So who better to give this DCIS dx to than me? I will fight it with every natural modality I can….and will publish my results. Then some of you out there that are scientists, and I, will write a book….and blow the lid off the multibillion dollar business that is Breast Cancer!
God Bless you and wishing you god-speed on your individual journey. Fear is the enemy. Do not let it sway you.
Mari Sherpa said:
I too would love to know of other women who are Stage 0 High Grade 3 ER-/PR- with comedonecrotic features who are not rushing to get to the surgeon and get it out! I am just wondering if sticking to a great diet, supplements, prayer and meditation will work! I am going to send my stuff to Dr. Lagious…but not sure if he will have enough tissue just from the stereotactic bxp and mammograms over the past 12 years to make a decision! I just really wish I didn’t have this…AND….it is hard for me to believe I went from BIRADS 1 to 4 in 12 months and now with all of this bad ju-ju!
Ellen Berman said:
Hey Mari. What’s the latest on your high grade DCIS treatment plan? I have the same. They say it is 2.8 cm but another suspicious area, too. 3 surgeons want me to get a mastectomy but a 4th suggests a surgical incisional biopsy of the area so I can get confirmation. Hoping for partial mastectomy with reconstruction. Would love to share!
I was stage 0 high grade comedonecrosis…docs recommended lumpectomy after biopsies with a variety of other non cancerous- busy breast issues. I went with the lumpectomy, but once they got in there it was changed to stage 1 because there was micro-invasion- my personal opinion is that poking a hole in for the biopsy caused some of the cells to have an escape route. Nodes were clear. But once I got the upgrade to stage 1, they said now you must have radiation and 5 yrs of pills. I started radiation, but was so upset, because I had asked for a mastectomy to avoid radiation- and they all said I was ‘over treating’. About 9 treatments in, I had enough worry and did a double mastectomy in Jan, delayed reconstruction in March- no chest expanders, just on top of the muscles, and I couldn’t be happier. Talking to a cancer researcher- he said- when you hear cancer- you treat it as aggressively as you can the FIRST time, because if /when it comes back, you’ll be in an uphill battle. My biggest regret was NOT listening to my OWN heart and let others decide what’s best for me. I like my new breasts, will do tattooing of nipples soon. It is what worked for me–
My name is Jenny. I’m 30 years old and I was diagnosed with breast papillary carcinoma. The tumor was small and removed April 28th, 2016. The also removed my sentenniel lymph node which came back negative. I had an appointment with my surgeon today and he told me that while he did my duct excision, he tested the areas around and was positive for DCIS Stage 0. He’s recommending a full mastectomy. I’m so lost. I’ve had 2 mammograms, 2 ultrasounds, and 2 MRI’s and now he’s telling me I have DCIS? I’m torn….only 30 years old. Please help. I made a breast cancer awareness video as well.
So sorry for the delay in reply Jenny. I somehow missed a few comments. I hope you have found some solace. Can you please give an update and let me know if you have more questions. Sending you a hug, Donna
Jenny Chu said:
Here’s an update. On July 5th I did a nipple sparing bi-lateral mastectomy. The pathology report showed signs of microinvasion. Largest tumor was 3cm. Lymph nodes were negative. ER+ and PR+ and HER2-, BRCA- with no family history of any sort of cancer. My surgeon sent me to a medical oncologist and he doesn’t think that I will need to take tamoxifen.
I met with Dr. El Masry yesterday and she told me the chances of the cancer coming back is very little. Maybe 1%-10%. Tamoxifen would reduce it by 50%. Not sure if the risks outweigh the benefits. I’m 30 years old and i would like to have kids in a couple years. I’m leaning towards not taking the tamoxifen. I would like some feedback if possible and what you guys think I should do
Hi, I have been reading your comments and wanted to share the story of my mom. Last Feb 2016, my mom felt a lump in her left breast so she went to a breast cancer specialist here in the Philippines. She went through an ultrasound, mammogram and biopsy before she left for US. After two/three weeks, the biopsy result came out and doctor told my brother that there is nothing to worry as it is just a cyst but if my mom doesn’t want to be bothered by the cyst she has the option to remove it.
I have been reading articles about cancer and cyst and I know that not all cysts should be removed. I told my mother to ask for a second opinion but she decided to go back to Philippines and have the cyst removed. For some reason, my mom didn’t want to do the surgery in US. She said no one will take good care of her coz my brother and my father are working. We supported her decision though I was really vocal that she should get a second opinion.
Last April, my mom had a surgery which I later found out the procedure done was partial mastectomy. Doctor asked another biopsy from the mastectomy. Then after three weeks the biopsy result came out and found that my mom has DCIS.
My only concern is why was the initial biopsy didn’t show DCIS? Why did the doctor tell my mom there was nothing to worry about but still insisted to remove the cyst? Why did he perform partial mastectomy? I haven’t had the chance to ask the doctor but he told my mom to undergo chemo/radiation therapy. Why?
Is it possible that my mom was misdiagnosed? If she really has DCIS, what is best treatment to do? She already had a partial mastectomy before getting diagnosed of DCIS.
My mom will go back to US this May and I asked her to go to another doctor for second opinion. She has also changed her diet coz I believe cancer can be prevented by eating healthy and improving the immune system. Do you know a good specialist in LA or San Francisco? I would like to really know our options so I’ve been doing a lot of research and been praying to God that whatever we decide on the treatment will work with my mom.
Thank you. Hope to hear from you.
Sorry for the delay in reply. Sometimes biopsies do not show all that is there. This happened to me as well. I had a wide excision biopsy after needle biopsy showed only Atypical Ductal hyperplasia (ADH) — a non-malignant condition. I was told I needed to have a wide excision which is really not much different than a lumpectomy or partial mastectomy — they are really all similar surgical procedures. What is updated status? Has your mom had a 2nd opinion? What was the grade, size and margins of DCIS? UCSF is excellent. Hope all is well. Please let me know if you have more questions. Donna
Mari C Sullivan said:
Dr. Laura Esserman at UCSF and Dr. Mel Silverstein at The Hoag CA Center in Newport Beach to name a few….Both breast surgeons. Dr. Silverstein invented the Van Nuyes Prognostic Index for determining breast cancer risk…
Hi — I’m new to this site and was diagnosed with DCIS high grade ER+ PR+ with a 9 cm area. I am 45, peri-menopausal, overweight, pre-diabetic with a lot of fibroids (I’ve avoided a hysterectomy for 10 years). I think there is some other part of my diagnosis that I’m not stating and please let me know what else to ask about / look for.
There is no breast cancer in my family, cousins, aunts, uncles.
I was diagnosed almost 3 weeks ago. But what sticks in my mind most is not my diagnosis day — it was my treatment plan day. 2 weeks ago. I had no idea and did no research before my Surgical Onocology appt. Can you imagine my surprise Stage 0? But I’ve never believed doctors in my life when they say I need surgery so I was rather calm.
Since then, needless to say, has been the dilemma of not enough statistics, little true understanding of what actually advances, has been and is agonizing at best.
I will be in touch with Dr. Liagos and hope my insurance will cover it.
For me here is the kicker – If I lived before 1980, this wouldn’t even be an issue because mammograms for women before 50 didn’t happen. Women would get diagnosed with breast cancer and deal with it. This to me is NOT cancer. AND If I lived 40 years from now – there hopefully is a better non-surgery way to deal with this.
Just because I’m living in an age that is in a crisis with the treatment of DCIS is no reason for me to follow ANY protocol.
I am at a loss. But it is a good wake up call. I’m finally following a nutritionist that I’ve been trying to do her program for 10 years for my fibroids (and I’m doing it now!) — it helps balance hormones and blood sugar and should shrink my fibroids in my uterus. I don’t think it could hurt to get to thriving. I’m starting to exercise.
I’m starting to really thing positive and give myself positive messages.
I’m going to my surgical oncologist tomorrow for follow up appointment. I doubt it, but maybe she will surprise me and be my real doctor and not just surgeon.
I found you through my search for alternatives to surgery for DCIS. I too love Dr. Hwang and Dr. Esserman. I have a list of the small number of surgeons who are on the page we need them to be on.
I am looking for a doctor in NYC who can guide me, whether I want to watchfully wait, take tamox, or do a surgery. Does anyone know anyone that open in NYC?
From the bottom of my heart thanks for this website.
Maria from NYC
Sounds like you are taking a very intelligent approach!!! Here is one resource in NY: Sheldon Feldman, the chief of breast surgery at New York–Presbyterian/Columbia University Medical Center, describes DCIS to the newly diagnosed: “Your chance of dying from this disease with 40 years of follow-up approaches zero. The only way someone could die from DCIS would be either if it’s completely not treated and they’re not surveyed for a long time, and it turns into invasive cancer and then spreads—or if they have treatment and then they disappear, don’t have any checkups, and show up with a big lump many years later.” This is from an ELLE article: http://www.elle.com/culture/news/a28636/a-radical-idea/
Keep me posted! 🙂 Donna
Mari C Sullivan said:
Maria, My advice would be to do a FULLY RAW diet and get that weight off! I did this myself when I was diagnosed in OCT of 2015. Mine was High Grade, comedonecrotic with microinvasion (but actually that wasn’t there according to Lagios who re-read the pathology. I worked HARD on getting my health in order by converting to a totally plant based diet, taking a bunch of supplements, meditating and praying and I lost about 30 lbs before I had surgery. I then had surgery in March of 2016, 5 months later. I elected to have a reduction mammoplasty by an onco-plastic surgeon. I was SO GLAD I DID! The onco-plastic surgeon assured he got all of the DCIS by xraying it after he took it out….and he got clear margins. Then the plastic surgeon did the actual cosmetics. I came out of surgery with MUCH MUCH smaller breasts, 2 full cup sizes less and but they matched, were perky and cancer free! Now I am 5 months post surgery and still eat an almost fully raw diet, occasional piece of chicken, dozens of supplements and some experimental protocols….I did NOT take the AI’s as they made me feel awful but I take a natural substitute. You can do this! Do NOT RUSH! Take your time, talk to people and weigh your options. Do what is right for YOU. Make no decision out of fear….It is a long road and can be lonely but there are some great FB groups you can join for support: Alternative DCIS and Breast Cancer Alternatives to name two….Good luck! Mari
Hello, It’s taken forever for me to reply. Thank you Donna and Mari for your replies. It’s 2 and 1/2 months later and I can’t believe it. I think I’ve experienced a frustration break. I simply kind of checked out of DCIS work. I stopped researching, I just stopped.
I have been trying (again for the 12th time in my life) on working with a nutritionist that I’ve been trying to work with for years. It’s a program which gets your hormones back in order and helps you have a joyous pleasurable life. It a great program with online support – it’s videos with online support and phone calls. 7 chapters (each chapter has three videos (so 21 videos over three months) on biology, food as medicine and pleasure principle). It’s about one chapter every 10 days. You infiltrate new protocols each time you watch a video. And you take the 10 days to integrate it into your life.
Well since August 16th, since I had my first session, I’ve only watched one Chapter and could have been done by now.
I feel stuck. I haven’t really transformed my life the way I thought I would.
Donna, I did see Feldman. Shelly Hwang emailed me herself and ALSO gave me Feldman’s name. His suggestions were so much different than the NYU Doctor. Clarification NYU Doctor said Mastectomy was best b/c Lumpectomy would be disfiguring. Feldmna corrected her saying the 9 cm is not wide but long so it would be a thin sliver replaced by a piece in my back. He also said I could go on Tamoxifen for five years with NO surgery but would have to have ovarian oblation every month to prevent my fibroids from growing (since then blood tests have shown that I might be in menopause! And my acupuncturist said I could monitor my fibroids with sonograms so I could drop the oblation).
However, Feldman cut me off when I asked about biodential hormones and again when I asked about Saliva tests. He was somewhat rude. I was surprised. I go to a DCIS support group in NYC once a month – two women were so surprised that they had met the same doctor one of the women loved the doctor and used her and the other couldn’t stand her. Feldman is great. He is really alternative. I do recommend women try him if they can. I was just surprised I felt I couldn’t ask all my questions, so right after that I dropped the work on DCIS…
I have issues with following food programs my body needs. I’m a bit surprised the Cancer Scare didn’t motivate me more.
Now I want a further test on my breast to see how it’s doing. I have high grade 9cm. ER+ PR+ I will research my options here. So far Thermography, 3D Mammography, Van Nuys Prognostic index, and I have to research more.
Mari, I hear you about raw diet. I’m thinking about it but I have candida and damp heat and I get very bloated from raw food.
I’m working on staying positive and not being hard on myself.
I really appreciate this site and all who have shared. I’m 49 YO and in May 2017 was dx’d with DCIS, intermediate, 0.5cm…I had 2 biopsies in L breast to evaluate microcalcifications; one of the areas was ok. I feel the trigger was some strong emotional issues I was dealing with (sons custody/visitation with my grandchild) and I was taking progesterone bc pills for most of 2016. Fortunately I had stopped the bcsd pills prior to the dx. Immediately I started researching and know I need to treat my whole self. I’ve had a session in bio- reprogramming that I believe has allowed me to better come to terms with baggage, gotten a lot more food conscious, had a consult with a 2nd kaiser Dr. (not really beneficial), met with a nutritionist who noticed some significant deficiencies that I’m taking supplements for, and today met with Dr. Ewing at UCSF. Kaiser and UCSF are totally contradictory in approach.
I’m torn since I’m scheduled for lumpectomy next week at Kaiser, but feel considerable pressure to have radiation. It seems as if hearing cancer and your name in the same sentence isn’t traumatic enough all the talk about recurrence is piled on. While I’m not turning my nose up to traditional medicine, I’m very tempted to just work on me for the next 6 mos.until I can change my health insurance switched to one that UCSF accepts which would become effective January 2018. It all gets overwhelming. Has anyone just taken the course of active surveillance and what screening methods does anyone allow? Still OK with traditional mammos or MRI, or both?
Yes, after my lumpectomy (for alleged high-grade DCIS) I met with a radiologist and the whole time during my consult as she was explaining everything to me I knew I was going to reject radiation. I had found a surgeon in Atlanta who is willing to keep my actively surveilled via frequent mammograms. Go with your gut – sounds like taking care of your whole self, yourself, is the right way for you!!!
Ellen any updates?
I posted in 2017 about the start of my journey with DCIS and want to provide an update about the active surveillance approach I chose to take.
When I posted last I was waiting to change my health insurance so i could pursue continued treatment at UCSF in 2018 (when the new insurance would take effect). I had an MRI with and without contrast in January 2018 for both breasts (my concern was my left breast). Results were negative for any new findings or concerns.
Per the treatment approach discussed with my Dr (Dr. Ewing), I had a mammogram in July 2018 for both breasts. Results were also negative for any new findings or concerns. Since I’m alternating MRI and mammogram every 6 months, I have an appointment scheduled in January 2019 for another MRI
This is all great news and a relief to me; makes me think the lumpectomy I cancelled would’ve just all been healthy cells….who knows.
Per my doctors recommendation I met with an oncologist to discuss Tamoxifen but I chose to not go with that treatment due to possible damage to other areas of my body (I believe my eyes and uterus). I continue to strictly limit processed sugar as much as possible although I sometimes indulge in a treat. Although the oncologist gave me caution about the plant-based vitamins, I continue to take several supplements such as Xenostat, liquid vitamin B and D, and others recommended by my nutritionist.
I would suggest those who take vitamins and supplements to be particular about the source of the ingredients, I have found some actually contain sugar and/or fillers that are not good for you.
I know we all have different situations, but I urge all to make informed decisions and not do something based on fear. It can be very overwhelming.
Tina R said:
How did it go Ellen? Super scary when people don’t provide updates.
I’m doing active surveillance. Diagnosed May 31, recommended mastectomy, and actually had it scheduled, but bc of emotional baggage (mom died unexpectedly, etc.) I don’t feel well enough to face surgery. They tried to talk me into it anyway, then told me to take Tamoxifen for 6 months, when they’ll do another mammogram. I’m not even sure I’m actually going to take the Tamoxifen–I’m 45, in good health, and have completely switched to vegan diet. I’m in contact with a Chinese herbalist, trying to determine a formula for my 7 cm grade 1-2 ER/PR+ DCIS in my left breast. I’ve talked to many doctors and not one of them could speak from experience with active surveillance–they’ve never had a patient opt out of surgery like this. I’ve read so much online, and figure that one of the “cures” for cancer that has been suppressed by Big Pharma & the political machine probably would actually work for me. It’s tough to decide which route to go, though. It’s funny how, when they were trying to talk me into surgery, there was no other possibility. When I finally got them to wrap their minds around the fact that I was NOT going to do surgery, there was a drug I could take. Hmmmm….. And, they expect that for at least 6 months there won’t be any change either way! (The medical oncologist did say there is a less than 10% chance that with Tamoxifen alone the DCIS will go away completely. Wouldn’t that be nice?)
On another note, I had 5 mammograms, 4 ultrasounds, 3 biopsies, and an MRI all within 2 weeks. If my cells become cancerous, I will blame all of that radiation. I asked them about thermoimaging, and they didn’t really have much to say about it. I will be tested by ultrasound every 8 weeks, and physically ever 4 weeks. I’ll also have blood drawn to make sure the Tamoxifen isn’t messing too much with my liver function. Boy, I really hate drugs–any advice on whether to take the Tamoxifen or not would be most welcome!
It’s been a year, curious how the active surveillance worked our. Any updates as this is the direction I’m leaning to. Thanks
I’m wondering how you are getting on with your active surveillance of high grade DCIS… I’ve recently had a similar diagnosis and recommended treatment is a mastectomy. I’ve been given no other options, but I truly believe that there must be… I would really love to hear how things are going for you Teresa?
Teresa Milner said:
Just now saw the inquiries about my active surveillance. I should’ve given an update sooner.
Here’s what I did: I did NOT take Tamoxifan. I stayed whole food plant-based, sugar-, gluten-, and oil-free. I did not do a good job exercising. I did an even worse job at stress relief. About a year after my initial diagnosis, there was a noticeable lump. My husband had asked me to do surgery if it progressed to “real” cancer (Stage 1 or above), so I finally acquiesced and had my left breast amputated in August of 2018.
It wasn’t until several months afterward that I realized where I had gone truly wrong.
In switching to a whole food plant-based diet, I felt SO good–full of energy, never tired or draggy–that I didn’t pay attention to reducing stress and learning better management techniques.
About 3 weeks after my surgery (which was super-easy), my dad, who has Alzheimer’s and had been living with us, became extremely violent right after his dad (my grandpa) died. It was the epitome of stress for me. I moved him to a memory care facility.
So a few months later, after I’d finished settling the business of selling/packing/moving his house and getting the final details in order for the house my husband and I were building, I began to relax. I was no longer working, as I’d had to leave my job to take care of Dad. So as I began to notice this “new” way of being, and with the help of my naturopath, whom I found after my surgery, I got the stress under control.
I began to exercise regularly (minimum of 10 minutes per day on a rebounder) and to learn strategies for managing stress (which was more or less gone now that both my boob and my dad were gone).
I do still “blame” the many, many invasive tests I submitted to for the progression of my cancer, but I also blame myself for not truly understanding just how much stress I was under and not dealing better with it.
I would do the same thing again (active surveillance), only I would believe ALL the things the hundreds of “radical remission” survivors of cancer have said. It’s not just diet: lifestyle is HUGE for healing. And stress is too much a part of too many of our lives…and I didn’t even know what a big effect it was having on me until I looked back on it.
I love to hear success stories of active surveillance (not that I consider mine a “failure,” although I had to have the mastectomy). I’m happy to share any part of my story in more detail if it can help you.
You’ve got this!
I hope you’re doing well! Would you mind letting me know how you are monitoring your remaining breast? I am in the same boat as you…
How long have you been without a breast? I’m guessing that since you said you’re “in the same boat” that you’re not taking Tamoxifan or any other drug?
I’ve been seeing a naturopathic doctor every 6 months or so. She helps me tweak my supplements and monitors my overall health. I also do still go for mammograms (I’m conflicted about this, but there’s still enough of the fear in me and enough confusion on the risks/benefits of it that I’m still doing it!) every year.
I’m doing great! My physicals with my regular MD come out with great numbers on all bloodwork too. Nutrition, exercise, meditation/prayer, and stress reduction…can’t beat it!
Hope you’re having great outcomes, too.
Jackie Greenfield said:
Very happy to find this site!
Hi, there was an inquiry about those that have chosen to use Active Surveillance as a treatment approach. I’ve left prior comments about my experience (my initial dx was in May 2017). I just scheduled my annual MRI with and without contrast with UCSF. My procedures last year, MRI in February 2019 and mammo in Aug 2019, were both negative for any areas of concern. I continue to limit processed sugar, try to exercise 3-4 x per week, and take my nutritional supplements. In the last 6 mos I haven’t been disciplined on all my supplements with the exception of Xenostat. I feel it really reduces, and essentially limits, hot flashes and the effects of menopause. I’m 52 now and continue to have my cycle pretty regularly. Wishing you all peace as you figure out the best treatment and path for your unique selves.
Very enlightening and refreshing that those being dx’d with DCIS are really exploring all options. No matter the dx, I wish all a clear and relaxed mind as you consider the right path and treatment for you. If in doubt, don’t hesitate to get a 2nd opinion – don’t allow yourself to feel forced into something due to fear (I KNOW how scary this is).
I repeatedly told my surgeon I will not be taking Radiation on the 2nd surgery because “she didn’t get a clean margin” she decided without my consent or knowledge secretly deployed a clip for radiation, she or her Nurse practitioner has not said nothing to me about the clip I found this out by reading the Post-Op report. with my understanding I will need another surgery to removed I am devastated this will be #5 surgery to my right breast for DCIS. This truly an over treatment.
I had breast reduction on 2/6/23. DCIS was found in the rt breast in pathology report of tissue removed. It was 3mm in size, 2 foci areas, intermediate grade and some necrosis found as well as atypia lobular hyperplasia in rt and also left breast tissue removed. I had a clear mammogram 5 mos prior to the breast reduction. Still healing from the reduction, it went well. Nobody knows what the heck to do with me. I refused an MRI due to the gadolinium contrast being a heavy metal (I am allergic to metals). Also, there is now a black box warning by the wonderful FDA that says it can lodge in the brain. I also refused a PET scan since it is like having 7 arm xrays at once. I am 62 and very active. I am currently on this alternative medicine quest that is driving me crazy. Surgeons tell me to just have a bil mastectomy. I wonder if anyone else had DCIS discovered during breast reduction? No clear margins to be had, not really a lumpectomy so to speak. I am really relieved from the burden of heavy breasts, but not ready to have none at all. I have been very despondent about it all. Thanks for any reply.
Donna Pinto said:
Hi Susan, sorry you are dealing with such a dilemma. Nancy Riopel has a simialr story. She declined all the SOC recommendations (mastectomy) — and she is doing great and co-facilitating our FB support group “DCIS is NOT Cancer.” Please read her story here: https://dcis411.com/2019/09/20/the-importance-of-being-informed-treated-with-compassion-and-advocating-for-active-surveillance-nancy-riopels-enlightening-dcis-story/
And please consider joining our group! Wonderful women who are sharing holistic health strategies. https://www.facebook.com/groups/2705935319693424
Sending you a hug,