ILC recurrence

I had a double because I had no desire to put myself through the follow-up that would be necessary if I kept the breast (frequent mammos and biopsies). I had been scanned with every possible technology prior to my surgery and all docs were sure my right breast was clean. It wasn't. It was full of stage 0 this and that and my surgeon said it was good thing I had been so adamant about getting it removed.



However, my cancer was locally advanced.

Same here. I didn't trust scans to find anything early and didn't want to have to worry. Ended up they found LCIS on the left side, so I do believe I made the right decision.

Also, I talked to a friend who had a UMX and she really regrets not going BMX. I didn't want to be lopsided.

Nanka; We all know how difficult a decision this is.  I also opted for a bilateral mastectomy even though my one breast was completely healthy.  Given the how sneaky ILC is and how difficult it can be to diagnose, I did not want to have to go through an MRI every 6 months to see if it had occurred in my healthy breast.  To me the anxiety associated with this option was overwhelming.  I felt that it was the best decision for me and I know you will make the best decision for yourself. 

Please don't hesitate to reach out with any additional questions or concerns.  One of my favorite quotes is "talk to those on the road coming back".  We are all on that road... 

Fondly, Heather 

Hi Nanka,

This is a really difficult decision, and I firmly believe there's not one right answer for all of us.

I had a lumpectomy on the right side in January 2008.  I did radiation and have been on arimidex. I have a breast exam, mamogram alternating with MRI, every six months.  It is definitely stressful, especially the MRI, but it has been doable.  I have been about 4.5 years without an issue, but I recognize I will always have to be vigiilant.  I seriously considered a BMX and proposed it to my surgeon and oncologist. My surgeon recommended starting with the lumpectomy and then talking about doing more surgery when "things calmed down."  I probably should add that I am not a good patient and found the idea of more surgery disconcerting.  Before breast cancer, my only dealings with the medical community had been for childbirth. 

 Sending warm hugs and good thoughts your way as you figure out what will be best for you.

Nanka -

I had ILC on the right. Went to surgery with the plan of having a BMX with recon. Positive lymph nodes changed the plan and I had Rt MX then on to chemo and radiation.

A year later, I met with my PS to plan my Lt MX and proceed with bilat recon. After giving it thot for a week, I changed my mind and decided on a BMX without recon. I am happy with my decision. There was no cancer found in the Lt breast.

The factors that influenced my decision: 1) I am Stage 3 with high risk for recurrence, I had 14/15 positive lymph nodes - not the results you want, 2) I am 58 (not old but not young), 3) I just wanted to be done with all the treatment and 'stuff'. 

My final surgery was last month and I am very happy. I had large breasts so being flat was a big change. I don't plan to wear foobs and like the idea of never wearing a bra again.

Just think it through and make the decision you can live with.

Nanko - I initially had a lumpectomy and my 0.9 cm ILC was extending from LCIS.  My margins were clear. I always knew that I would have a BMX and reconstruction but waiting until after chemo and radiation to do it. The decision to wait gave me time to fully research where I would go and what type of reconstruction I would have. It was the right decision for me. My "good" breast did have ADH and I'm very happy with my choice. It is a personal choice and what's most important is that you are comfortable with your decision. The planning stage is the most difficult time! Wishing you peace with your decision.

Hi Nanka,

I did have LCIS in the right breast.  In fact that was the original diagnosis when I went in for the lumpctomy.  The invasive disease was found in the pathology, and I had to have a second surgery two weeks later for the SNB.  Margins were clear and oncotype was 16.  Hugs.

Maureen

an alternative view--I had a lumpectomy, chemo and radiation (had an intermediate oncotype score).. that was almost 4 years ago.... no one on my medical team suggested a mastectomy or a bi lateral--- I have an MRI, then 6 months later a mammogram.  Have had one scare-- turned out to be a cyst--- but otherwise, these things have been uneventful.  

It is hard--- but I have been very comfortable with this decision (and having all that treatment also helped me feel good about my decision).  Now that I know what I know, I would still do the same thing--- remember, most people do not have a recurrence...but it is all about what you are comfortable with...  

I regret not having a BMX. Now all I do is worry every 6 months after mammo and scans.

When I was diagnosed I was going through a difficult divorce and 3 years prior I was diagnosed with Stage 3 colon cancer.

I wasn't thinking clearly and decided on a lumpectomy, breast reduction and radiation.

 Not only do I worry about breast cancer returning I worry about colon cancer. The good news is that I am now a five year colon cancer survivor so according to my surgeon I am considered cured. 

Now my doctors are recommending a total hysterectomy thanks to tamoxifen. Has anyone else on this board have a hysterectomy? Thanks for listening and any advice will be truly appreciated. Blessings to all! 

MissTW, I had a hyster, although it was not total. We left the cervix and the neck of the uterus. This way I could go straight on an AI and skipped the tamox. Besides, I don't have to worry about ovarian cancer.

Nanak,

You will have to make your own decision. I had DMX because neither mammogram nor sonogram caught the cancer, while I was under continuous surgeons care until the tumor became big enough to change the shape of my breast. At that point, not only the radiologist noticed the tumor in my breast but suspicious nodes, as well.



The PET scan and the MRI reports showed 2 to 2.5 cm tumor and the surgeon suggested lumpectomy, as a possibility. However, under the circumstances I insisted on DMX. I could not see myself trusting the result of any mammogram or sonogram.



In any event, lumpectomy would not have been an option given that the actual tumor was 4+ cm and multifocal, not 2cm as originally thought. Also, not one but 4 nodes were cancerous.



No, I do not regret my decision and no, at the time, it was not easy to make. Good luck with whatever decision you make.

I went to a breast surgeon when I had a suspicious mammogram and needed a biopsy about 5 years prior to my diagnosis. The thing they were looking at turned out to be nothing special, just a cyst with a lot of black, tarry gook, but everybody had missed and kept on missing the growing cancer. Because my breasts were dense, the surgeon was ordering sonograms in addition to the mammograms and she was happy getting all those " all clear" results year after year. She was a breast surgeon and I was under her care for about 5 years. Unfortunately, during the entire time she never mentioned that with the dense breasts, cysts and pain I was high risk for developing breast cancer. I always thought of myself as low risk since I gave birth to two children and breast fed them. I simply didn't know that I needed an MRI.

Perhaps the outcome would have been different if the sonograms were performed by radiologists experienced with different kinds of cancers, rather than a tech.



As it is, I am stage III with 4 nodes involved. Thankfully, I am post chemo, radiation, Hercepting and doing fine. I am officially NED. Of case, I would feel much more secure and be an earlier stage if at least the mammo and sonogram done only 10 months earlier were done more accurately and diagnosed the existing cancer. As it was, they all concentrated on yet another cyst, which the radiologist declared not to require a biopsy this time. amazing thing was that once they knew (flattened breast) that there was something inside, they found the tumor on mammo, and the radiologist found a not only the tumor, but suspicious area on my node and ordered biopsy on both.



Now, there is no point stressing over it, but it is a valuable lesson for others not to rely solely on those tests.

Nanak, I had a right mastectomy with insertion of a tissue expander in November 2011. At the time I did talk to a woman who had bilateral mastectomies for DCIS on one side, she told me to ask my surgeon why she was not doing bilateral mastectomies on me. The surgeon felt that compared to the risk of the general population I was not at high risk for a recurrence there and that I could compromise my recovery on the right side. I think that I am generally a little conservative when it comes to testing and surgery and tend not to think the worst will happen. I had been recommended to do an MRI the January before my diagnosis and put it on hold as the nurse said a lot of people post MRI end up having unnecessary biopsies, maybe if I had been more diligent on that score I might not have ended up with a 10.5 cm tumor. Added to that my primary care physician examined me in July and even though she felt a dense area on the right did not raise any red flags or insist I do that MRI, all water under the bridge now.



Having said all that and now almost a year beyond it, I have to say I am happy that I did not have bilateral mastectomies. I just lost my tissue expander due to a cellulitis infection, second one this summer, and am now looking at a more invasive reconstruction down the road. My tumor was too large to do nipple conservation and so I am glad to have a breast that for me is still real. I realize that lobular is sneaky and I think screening will be MRI's going forward and I think I am ok with that. It is really about what you can live with. I am European and other women I know who have gone through this over there were not presented with this option, I think they tend to more conservative over there, could also be to do with the healthcare systems in different places.

Hope I didn't confuse even more.

I had a BMX with TE reconstruction. I just had this gut feeling that a BMX was what I needed to move on past this ordeal. I have anxiety over tests and scans and could not see myself going through that over and over again with mammograms (if I went w a lumpectomy or UMX). I did find it interesting that the Drs don't want to tell you what to do, they want you to decide.... The only Dr that told me "get a BMX and be done with it, you can't believe how many women we see back again" was my ob Gyn, who happens to be my aunt. When I told my bs my decision to do BMX, I swear I saw him visibly exhale. And he said he thought I made he right decision. I remember him saying that they had no idea what caused my breast cancer (no risk factors other than being a woman) but, that whatever my right breast was exposed to, so was my left one. My PS also said that in his experience (35 years) ILC has a higher rate of occurring in the opposite breast...

I don't regret it at all. It is a very personal decision, I'm glad my decision is over. Best to you!

BMX for me and no regrets. All my doctors seemed to encourage it. I also wanted to be symmetrical. I was large breasted, and I couldn't imagine having one of those "big, ugly things" hanging there. Big, ugly things was what my son called them one time when he was very young and walked in while I was changing.