Surgery in stage 4?

Mae~ I hope whatever you decide to do, that it works wonders for you. Congrats again on your 5k. That is something alright! You're a strong beautiful woman! Keeping all close in prayer! I know I was so confused with them all talking about me like I wasn't there. I put an end to that though. I wouldn't have changed getting the surgeries, the AC chemo could stop a Train.to me the abraxane is also vicious. None of this is easy to deal with. The way they offer surgery also depends on your age in some venues. The aggressive chemo is hard to tolerate and some people have trouble recovering fully if they ever do. I think your amazing to even sign up for that 5k, and see it to the end. You're a strong person. I hope you continue to gan your strength,. I pray we all do.

~M~

Illimae, my thoughts are to tell you that my surgen wanted to do the lymph node removal and I said "No." And I was not a strong advocate for myself then so I really had to learn to stick up for myself.

I, too, was diagnosed stage iv from the start. MRI showed no lymph node involvement. I, too, worried about lymphoma. I, too, questioned the point of checkng the lymph nodes since the metasteses were already discovered.

You must do what you think right, make your own choice. I am glad I stuck to my guns. I am six + years stable on Arimidex now and cannot say if not having the node taken out is one of the reasons I am having an exceptional response to treatment. But I also felt like I did 't want my lymph system unnecessarily invaded. This is my personal experience only and I don't have any stats on any studies on the matter.

Best wishes to you on the choices you make.

Illimae, here is something to discuss with your doctors,

https://www.cancer.gov/types/breast/research/micromets-sentinel-nodes

Women with Breast Cancer Micrometastases in Their Sentinel Lymph Nodes May Not Need Axillary Dissection

"Some patients, especially those for whom radiation therapy plus chemotherapy and/or hormonal therapy is planned, may be able to avoid an axillary lymph node dissection.” 

When I read the article I was sort of miffed that I had to have so many nodes removed. But the study is for early stage, which may or may not apply to us. And of course, I have no idea if the fact I am still NED after all these years had to do with the ALND.

Lymphedema can also be caused by chemotherapy or radiation. I had a mastectomy and 19 nodes removed as well as chemo and rads so should be at high risk for lymphedema. (30% I was told 9 years ago.) I have a very slight form of it, which is more like fluid accumulation in response to some stressors (14-hour flights, carrying a heavy back pack on hour-long hikes, for example), which I can fix through self-massage and exercise. But for some people with a lumpectomy and one node removed, they still get lymphedema. They are still trying to find out why this is. Another mystery of cancer.

Also cancer can spread directly through the bloodstream and does not need to go through the lymphatic system. They even say mets can spread before tumors are formed, which may explain mets with unknown primaries. Another mystery for the books.

Hello all,

So glad to have found this thread. I've got a decision coming up and I'm struggling.

I was diagnosed last May stage 4 extensive mets to bones. Before staging, I met with the surgeon who recommended chemo to shrink tumor then removal (she did not specify at the time lumpectomy or mastectomy). After staging and it was determined I was already at stage 4 so they were not going to do surgery. I was started on Femara and have been on it since. I asked my oncologist if the surgeon had "given up on me?" She said "no, there just isn't any proof that removal of primary tumor helps overall prognosis". Ok, got it.

Now, a year later, my onc. Said I should meet again with surgeon. I've responded well to AI, tumors shrunk, mets under control. Ok, got it. I met surgeon and she offered lumpectomy with sentinel node OR mastectomy. I opted for lumpectomy. Pathology showed they did not get clear margins and 5 of 5 nodes were bad. Hmmm, not what I was expecting. Surgeon and onc presented my case to the tumor board and they agreed mastectomy is the course of action. Sigh.

I have worried about what previous posts describe as removing primary causing other areas to flare. I also don't feel good about a single mastectomy. I think I would lean toward double. I'm feeling frustrated with the back and forth and change of course, but I know in my head they just don't know and everyone is different...

So, what should I do ladies

Alcarroll~ I like you have a similar story. I did have surgery, in my mind I wasn't leaving any cancer in there that didn't have to be in there at all. I am still glad I did it. Because I feel Like it gave me more time. If there is more cancer in my body, doesn't that mean that there is a chance, that more could have the opportunity to keep spreading ? I have done well even though I also have bone mets and they were there all along. Just not able to be detected. I am doing much better than I was with cancer in my liver, that is now gone and I had 35 nodes removed and one breast. I hate it. But I absolutely hate cancer more. My tumor was 4 cm and was dissolving when I was done my chemo, but I had 13 of 35 nodes with cancer and they took them all. Two scans later thank goodness, the bone is where is remains. I'll take it. Follow your heart and what your gut tells you. get many opinions even, but never shut it down because it truly, I feel in my case has given me more time. I'll be sending prayers and strength as you make your decision, everyone is different, some stage four never have never had surgery or the heavy chemo. I had both, my docs wanted to be aggressive because I was diagnosed at 45, and in great health, they didn't want to give up on me as you said!! So don't give up on you. I'm glad still I did it Even though I miss my breast. But I don't miss the cancer at all! ~M~

Mae~ will be keeping you in prayer Ugh! I hate you cancer. Big hugs for you ~M~

yes - best of luck!

I was in similar spot and decided to go for the BMX they were talking me through once I finished 6 rounds of TCHP and was at a place of stability. My surgery was 3 weeks ago, and I've got another week before I start back with more chemo, but I am overall so glad that I took the opportunity - haha, I also realize how easy it is to say that on this side of things. I had ANLD on both sides - so far going slow with recovery but thankful to be feeling good.

Good luck with surgery!

wooo hooo. Here's to small cancer free breasts.

>Z<

Simila advice but different situation, maybe. Surgery was recommended for me but as part of my initial treatment. Was it offered to you earlier? Is there a surgical option that you would be less reluctant about?

I had inflammatory breast cancer so my initial plan was chemo, mastectomy then radiotherapy. However while on chemo mets appeared and they then told me the initial lung nodule was also a met, so I was actually stage Four de novo. Surgery was dropped, which I was pleased with, thinking I didn't have long and a mastectomy wouldn't save my life so why go through the physical and mental trauma? But I'm still here two years later, like many of you.

I would accept a lumpectomy but doubt it would be appropriate considering my nipple and areola involvement, but I will have to wait for the surgical consult.

iwillwinthisbattle- I'm new here, diagnosed as stage IV de novo. Because of that I'm on letrozole not chemo but I see you too werestage IV de novo yet you had chemo. Anyone know why some are on chemo and others hormonal therapy? Thanks-Jill

I was diagnosed de novo in March with one small liver met and extensive lymph node involvement (including supraclavicular and mediastinum). I had 6 rounds of TCHP. Liver met was indetectible after 2 rounds, and PET showed NEAD after 4 rounds. I opted for a BMX in August for my own peace of mind (I'm 31 and BRCA1 positive). My MO encouraged me to wait 6 months or so before surgery so we could see how I did on herceptin and perjeta alone, but I really wanted to go the "curative" route asap (surgery and radiation), and since there was no longer evidence of cancer in my liver, my surgeon was on board with surgery. Knowing my mind was made up, my MO has been supportive of my decision. I have no idea what will happen going forward, but I'm happy I'm doing everything i can while I'm young and healthy. Knowing the ticking time bombs on my chest are gone has been a huge relief. I'm currently receiving radiation treatmen, including to the mediastinum and supraclav, and hoping the H&P keep the liver met at bay.

Thanks MommyErin and illimae! I was 50 when diagnosed with adult kids so in a different situation. I know there are no guarantees with treatment, and you are right, we do have to do our best with the information we have at the time. It is reassuring MommyErin that your Onc also hopes to keep your mets at bay with H&P! I guess I just worry that I'm past 2 years Stage 4 and time is ticking, I don't want to waste it with recovery from surgery, radiotherapy and perhaps more chemo. But I guess I could view it as an investment in more years. I am terrified of lymphodema and know if I proceed I won't have surgery or rads to my axilla nodes, even though I know one at least is enlarged againand was positive on initial diagnosis. But I didn't mention that to the surgeon so unsure of her opinion. Anyway I will wait for my biopsy results and try to keep busy in the interim. Thanks again.

I have Stage IV and Metastatic Breast Cancer - spot on lung and in my bones. I am 64 years young.

My mother had breast cancer, then ovarian, liver cancer took her life at 78 years.

I have been on Ibrance and letrozole for a year.... Shrunk my breast tumors. Doctors are very impressed.

Now my Onco and BS want me to have a double mastectomy.

I fear having more surgeries, had several, THR, TKR, Bone Fractures, Bone Infection. Etc.

I also have lymphedema in my left leg.

My BS recommended a Plastic Surgeon, but he doesn't accept my insurance for Reconstruction.

That would entail more surgeries.

I don't know what to do.

Mastectomy without Reconstruction?

No Mastectomy? Just live out my life?