2nd cancer after 17 years. Double mastectomy???

I was just diagnosed with stage 1 low grade 1.8 cm breast cancer. It is on the same side as I had my breast cancer last time (same diagnosis). The first time around I had a lumpectomy and radiation. I didn't take any hormone therapy drugs, although suggested to me, as I was 33 and still wanted to have children. 17 years later (and one adorable 11 year old son), it is back in the same breast, but a different location. It is now suggested that I have a mastectomy.

I have very dense breasts and over the past 17 years have only had one "clear" mammogram. Therefore, I have been alternating between having a mammogram and then six months later having an MRI. BTW...the cancer was not found due to testing, but rather self examination (the same way I found the first lump). It is very stressful to have to go for testing every six months, and then for me to discover the lump on my own and not by the testing was very frustrating.

Therefore, I am seriously considering a double mastectomy, or removing my other breast as well even though it is cancer free (prophylactic mastectomy). I do NOT have a strong family history of breast cancer, nor did I test positive for the BRCA gene.

Has anyone else been in the same situation, and if so, what did you decide? I feel like if I get the double mastectomy it will elivate the stress that comes with the semi-annual testing.

They aren't giving me a solid answer either way. They say they understand the stress of the unknown and I need to decide what is best for me. I was wondering if anyone else had a similar situation.

LMVP - my situation was not identical to yours but after my Pagets and DCIS diagnosis in October I chose to do a BMX even though my right breast was healthy. I also had very dense breasts and was constantly going back for ultra sounds and biopsies that were always benign. After the stress of the DCIS diagnosis (not picked up on mammogram or US) and the MRI showed the DCIS under the pagets as well as two other masses on the healthy side (thankfully benign) I just did not want to go through that stress again. I also have no family history and my genetic testing was negative.

I was able to do direct to implant but knew that would be a game time decision day of surgery and was fine going expander route if need be. My recovery was pretty easy all things considered. Off pain meds in 4 days and feeling great by week 6. I just know my personality and knew I didn't want to be second guessing every little thing.

Hi LMPV, it's a difficult decision that you face. I have a somewhat similar background to yours. I was also diagnosed originally at age 33. I had a stage 2 lump in my left breast. I underwent a lumpectomy, chemo, radiation and Tamoxifen. Nearly 5 years later, while on Tamoxifen, I had a second primary, stage 1, but it was also in my left breast. Since I'd had radiation already, my doctors recommended a mastectomy. I inquired at the time as to whether I should have a double. I also had no family history and no BRCA gene. Largely due to those facts, I believe, I was advised that notwithstanding my history, I was no more likely than any other healthy woman to have another breast cancer in my right breast and therefore my doctors did not recommend a double. Also, I may have had a false sense of security that any third cancer, unlikely as it seemed that I'd be struck again, would also be caught early and could be successfully treated. At that time, I was 37, single and worried about trying to date and find a partner if I had no breasts. Not necessarily an issue as it turns out but I thought it was at the time. So, I had only a left side mastectomy and was fortunate to have a nearly side-effect free, very good reconstruction. I was monitored with mammograms annually on my other side.

Fast forward 15 years and I began to experience swelling of my right breast just a few months after a clear mammogram. Of course, I googled it and learned that it could be a common symptom of menopause - hormone fluctuations etc. I “watched" it for a month or two. I learned, for the first time, about Inflammatory Breast Cancer (IBC) but much of what I read suggested comparing changes in the suspect breast with the other breast. Having had a mastectomy of the “other", that wasn't useful for me. I also read about how extremely rare IBC is and other than swelling, I didn't seem to have any other 'typical' IBC symptoms, until one morning I awoke to an inverted nipple. I knew then I had to get into a breast specialist immediately so made an appointment and saw my doctor. Within a week, I was having full body scans and within 10 days I had a liver biopsy. I was diagnosed with stage 4 IBC with metastasis in my liver and spine. IBC is rare, aggressive and fast growing but it's been another 3 years since that diagnosis and I've had a great response to treatment though it's been a lot of treatment (chemo x2, radiation x2, surgery and infusion every 3rd week). Anyway, my doctor recommended a mastectomy in hopes we can continue to keep the cancer away but I'm on treatment for the rest of my life - however long or short it may be.

I was a rare case when diagnosed initially at age 33 with no family history and no known genetic predisposition. I'm a rare case again with my IBC diagnosis - my 3rd primary. Of course, I wish I'd gone ahead with the bilateral mastectomy a long time ago as I may have avoided the metastasis and I ended up with the bilateral mastectomy anyway. With IBC also invading my skin, it wasn't recommended to have reconstruction so I'm now asymmetrical. Someday, in order to even things our, I may get a 3rd mastectomy - that'd be another rarity 😉 . Some women experience metastasis despite double mastectomies and sometimes it is many, many years later but I'll never know if it would've made a difference for me. What I do know is that I made the best decision I could, based on best medical opinion at the time and where I was in my life and that's all any of us can do. There is no right or wrong answer but if I were to make my decision today, knowing what I now know, I'd err on the side of bilateral mastectomy but that’s easy to say now. Only you know what you want to do in your gut and that's what you should do - listen to your intuition. Good luck and best wishes,whatever you decide.

I too wanted to have both breasts off the first time, and was told by my breast surgeon that there was no reason to remove a perfectly health breast, and that the chances of me getting it in the other breast were minimal.

Five years later and I had it in the other breast, and I was so angry. First time around it was triple positive, second one was triple negative. So I had to undergo aggressive chemo for the second time in five years. I now have liver problems, heart damage and so many other issues from the chemo, I sometimes wonder if the treatment was actually worth it.

I love not having to worry about putting foobs on if I want to go flat. Having one breast made me very self conscious of being lopsided if I didn't put a foob in, but not having any has given me freedom.

Thank you ALL so much for sharing your stories with me. I have also been able to talk with two women at my work who just recently went through something similar. It is comforting to hear from so many different women with different perspectives. I am starting to realize how individual this decision is. I will make my final decision in the next couple days, but I am leaning towards the double mastectomy. I really would like the comfort of skipping some of the semi-annual testing.


I will keep you all in my thoughts and prayers.