Susan

On 1/31/13 I found a lump and the next day had a mammogram and ultrasound that showed no malignancy. However, my intuition told me I was a victim of a false negative mammogram and ultrasound. Even though two surgeons said to come back in 3-6 months, I did not wait. I found a surgeon who removed the lump on 2/28/13 via lumpectomy and got clear” margins, although he was surprised to find it was DCIS, stage 0 breast cancer.

Post surgery, I was ushered like a scared sheep to a “standard of care” radiation oncologist, but refused radiation therapy. I then was sent to a medical oncologist for tamoxifen, which I took, but was sick on the couch until I quit taking it 10 days later. I knew there had to be something better.

What radiation oncologists fail to mention is that an irradiated breast cannot be operated on again. Should something come up later, it would be instant mastectomy. In addition, they do not offer partial breast radiation (brachytherapy) as an option. Instead, they are quick to suggest the grueling 6-8 week radiation treatments as “standard of care.”

It was through hearing Sandie’s story that I learned of Dr. Lagios and his second opinion services. My pathology reports were sent to him. He gave me his interpretative report and I spoke to him. His suggestion was to have a RODEO MRI and re-excision. An MRI guided biopsy was performed in June, 2013 and a re-excision on 6/20/13. He reviewed that as well.

The pathology showed that after 4 months the DCIS was no longer confined to the one lumpectomy site and I now also had LCIS, which put me at higher risk for getting invasive breast cancer. Even after this re-excision, DCIS, which could eventually become invasive, remained. Although we tried to save my breast for many months, even after two surgeries my score on the Van Nuys Prognostic Index was still an 8. Since I was small breasted with not much more to work with, I decided to end the worry by having a prophylactic simple mastectomy on 7/2/13. Had Dr. Lagios not had my “back,” I am not sure if the margins would have been clear even after a mastectomy, since pathologists differ on what a “clear” margin is.

The word “carcinoma” in DCIS (ductal carcinoma in situ) was something I could not live with in my body much longer…watching for it to turn into a staged cancer. The word “in situ” means in place. However, it does not always stay in place.

Because of my mastectomy, I was able to skip radiation and taking harmful meds. Also due to my working out every day, my recovery was fast. In fact I was driving in less than a week and will be scuba diving again soon. My schedule now is having MRI/mammograms every six month for 2-3 years.

45421_10200328732717013_447405398_nMy photo was taken two weeks post mastectomy…can still wear my bikinis at age 60.

Fast forward to 2015. Since in 2013 my surgeon had performed a skin sparing simple mastectomy with reconstruction, I now decided to have delayed reconstruction. On June 19, I had surgery to insert a tissue expander, later followed by 4 fills to achieve my desired size. The final step was another surgery on August 13 to replace the tissue expander with an implant and breast lift, while also augmenting the other breast for symmetry.

What I should have done when I found I had DCIS, is have a bi-lateral mastectomy to not have to worry about any more mammograms and had immediate reconstruction at the time of that surgery. Delayed reconstruction is much harder.

However, I am happy with my final results. My reconstruction is such that while I may be 62 now, parts of me look 22. It is amazing what they can do to put us back together again…better than before.

No doubt in my mind, DCIS is not anything to mess with – trust your intuition, research and get second opinions always. We must all do what is best for ourselves.

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20 thoughts on “Susan”

  1. On 10/14/13, I had my six month follow-up MRI/mammo. All is clear, nodes too. Next one scheduled is April, 2014. In the meantime, I am going scuba diving and sea kayaking this winter continuing to keep my plant based, hormone free, no sugar/soy diet in place.

    • Susan,
      Awesome that all was clear for you at your 6 month follow-up. Keep up the good work with your healthy lifestyle and enjoy yourself scuba diving and sea kayaking. You rock!

    • In March, 2014 had MRI/mammogram and all is benign, nodes too. In April, 2014 went to Cabo – climbed boulders at Land’s End from Pacific Ocean over to Sea of Cortez carrying backpack with snorkel gear. Went snorkeling and saw sea lions in the wild underwater. The ultra-light flying was spectacular…almost 3,000′ above Land’s End Arch. Sea kayaking in the emerald green/turquoise waters was magical. Next screening is September, 2014 and staying optimistic…in the meantime staying with plant based diet and regular eating & sleep schedule.

  2. Earlier this year, I did not know if I would live this long, based on what some doctors told me. Currently, I am in Isla Mujeres, MX scuba diving every day. No limitations, no pain and body feels stronger than ever. Wearing my old triangle top string bikinis and no one can tell I had a mastectomy. I did not have reconstruction. Did target exercises to define waist and arms which made a huge difference. If anyone must go the route of mastectomy, show surgeon photos of you before surgery in swimsuit for proper scar placement.

  3. I omitted in my story that when women/men are ushered in like scared sheep for radiation therapy for DCIS, they do not mention IORT (interoperative radiation therapy) either. This procedure allows a lumpectomy to be performed, a radioactive device placed in the incision area in the operating room while patient is under after the surgeon and pathologist both determine clear margins have been received, the device is placed in the incision area, the radiation treatment is done right there in the operating room, the radiation device is removed and the patient is sewn up. This can eliminate the grueling 6-8 week standard of care radiation treatment doctors recommend after a lumpectomy. Since this is done only to the area involved, should something come up again in the future, it would not be like the standard irradiated breast that cannot have another surgery again, thus forced to have a mastectomy. Had this choice been given to me during my original lumpectomy, perhaps my DCIS would not have become extensive throughout my breast, but still not invasive, in a very short time, thus being able to save my breast from mastectomy.

    • Susan,
      Thanks for highlighting the IORT (interoperative radiation therapy) option. Although there are risks with all radiotherapy, initial studies show it to be just as effective as whole breast radiation. Intuitively you would think the harms have to be less as well.

  4. Here it is January, 2014, a year after finding my tiny lump on my own in the shower. I am currently in Isla Mujeres, MX and have been scuba diving twice a day the past three days. I do not feel impaired and always workout to peak physical condition prior to leaving home. Had I listened to the false negative mammogram/ultrasound back in January, 2013 and them telling me to come back in one year, they would probably be recommending chemo by now. Intuition, quick action snd second opinioning that pathology is everything. By continuing scuba diving, it makes me feel I have conquered this “beast” even more…for now.

  5. In March, 2014 had my six month MRI & mammogram. Am thrilled the results were all benign. The mammogram six months prior to that on existing breast revealed “area of enhancement”. At that time, I decided to clean up my already clean diet to plant based seeing what it could do, so I truly believe fresh, whole food, no “fake foods” are helping me. I recently received a call from the radiologist who told me I was no longer considered “high risk” and to come back for MRI yearly, instead of every six months, but to continue mammograms every six months.

  6. Thanks for sharing your great news and great diet Susan! You are an inspiration!
    🙂 Donna

  7. In October, 2014, I had my six month MRI & mammogram. The report is benign. Celebrating going scuba diving soon.

    • Wonderful news Susan! We are so grateful for you sharing your story and on-going updates here! It truly helps everyone to hear the positives!!.Keep up your great spirit and lifestyle and enjoy life both under and above water! In peace, love, health, truth and light, Donna

  8. Thank you, Donna! On this Thanksgiving Day I am in Isla Mujeres doing what I love…scuba diving. I feel blessed and thankful not just this day, but all days, to be here at DCIS Redefined and being able to share my story with all my “sisters”. Susan

  9. After having another clear mammogram and MRI in April, 2015, I have decided to go ahead with delayed breast construction on June 18, 2015 with tissue expander and implant, with a lift/augment to contralateral breast. Plastic surgeon stated that this process will take two surgeries and should be complete in 4-6 weeks…still time to enjoy the summer if all goes well.

  10. My April, 2015 mammogram and MRI were clear. I have decided to proceed with reconstruction June 18, 2015 with surgery of tissue expander insertion. Plastic surgeon said the whole process should be completed in 4-6 weeks with two surgeries involved. The contralateral breast with have a lift and be augmented at the 4-6 week window, along with the implant exchange at that time. If all goes well, everything should be finished in August, 2015.

    • Awesome news that your April mammo and MRI were clear. Congratulations.
      They can do some minor miracles with breast reconstruction. Hopefully you will be very happy with the work your plastic surgeon does for you.

  11. On August 13, 2015, I had tissue expander removed and implant exchange surgery with contralateral anchor mastopexy/implant using teardrop cohesive gel “gummy bear” implants on both sides for symmetry. This was done in outpatient and I was home early that afternoon. The recovery has been tougher this time because I had to have general anesthesia, but optimistic for excellent results when bandages are removed tomorrow. I cannot wait! This is the final surgery. I will continue to get a mammogram every six months on my non-mastectomized breast and continue to get annual MRI’s until further notice. Cannot believe it has been just under two months from the beginning of reconstruction to the end of reconstruction.

  12. On August 13, 2015, I had my bandages from reconstruction removed. I could not have asked for better results had I been in the operating room giving the surgeon instructions myself. So happy to be put back together again…and start really living life!

  13. Susan Powers said:

    It has been awhile since I last posted. On November 5, 2015 I had nipple reconstruction using skate flap technique. It is just amazing I hardly have a mastectomy scar now and it looks so real. As my bi-annual MRI approaches and I start to get a little worried every time, I often wonder out there this question: if we have annual or even bi-annual MRI’s and/or mammograms…how are so many being diagnosed with staged cancers within a 6 to 12 month range? I am so perplexed by this and often wonder if it due to radiologist reading errors. Anyone?

    • Dear Susan,
      It is perfectly normal to become anxious every time prior to your breast imaging. I don’t know anyone who doesn’t feel this way. I believe the reason breast cancers are discovered between imaging is that these cancers begin 20-25 years before. They have been there for years, but can’t be seen with our current imaging until there are more than a billion cells. Also mammograms, ultrasounds, MRIs and thermograms do absolutely nothing to prevent breast cancer. This can only be done by changing the conditions in the body that caused the original cancer in the first place.

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