Need to Make a Decision Quickly!

[Joan S.]

With all the experience of you ladies out there, I thought you could give me some advice....I was diagnosed with stage 4 Her2 +++, er+. I had 7 months of herceptin, zometa and taxol(no surgery). Then continued with aromasin, herceptin and zometa till the present. Most spots disappeared with the exception of my back which was radiated. Now 2 years later, a new lump in my breast has returned(also her 2). So far it is small and localized. My onc is recommending lumpectomy, no removal of nodes and no RT but the surgeons are recommending mastectomy because of the proximity to the first tumor and scar tissue and if there is node involvement to do that. So my question is this....do any of you have any experience with this? Should I get a mastectomy even though it will obviously not "cure" my disease and is it crazy to consider reconstruction when it could raise the level of chance for infection and require another surgery?

[sarah]

hello,
since no one else so far has answered, I will give you my probably unhelpful but well meaning non-advice example.
in 1999, I chose a mastectomy over a lumpectomy because I believed that would get rid of it all. It being DCIS only in the breast at that time. They also removed some some nodes to check - they were clear. had reconstruction, no infection. no herceptin (available only for mets).
5 years later had a lump in same breast (yes same) which didn't seem cancerous but proved to be not only cancerous but now had spread outside the breast.
so mastectomy versus lumpectomy I think is a personal choice that you have to come to on your own.
that said, after the operation I would want to get herceptin and chemo (yes again) if I could to be sure no cancer cells were activated by the surgery or formed in the scar tissue.
remember, there are no wrong choices and many solutions. feel strong and powerful in knowing the choices are yours to make.
hopefully you have time to breathe and think about what you want to do and are not in a rush.
another thing, they took muscle from my stomach for my reconstruction and I found that unbearably painful, however others haven't. In France they consider that too painful and take it from the back but.....more decisions I'm afraid.
have you had some second opinions from other doctors? maybe that would help with your decision making.
good luck.
hugs and love
sarah

[Joan S.]

Thank you for your quick response. Yes, I have had several opinions. I have had opinions from three different oncologists and two surgeons and various physicians. The oncs say lumpectomy, the surgeons say mastectomy.
Thanks!
Joan

[Becky]

Dear Joan

There have been studies that show that Stage 4 women who deal appropriately with the primary tumor not only survive longer but can thrive. Appropriately means lumpectomy with radiation or masectomy.

http://cancerres.aacrjournals.org/cgi/content/abstract/64/6/2205
http://pt.wkhealth.com/pt/re/bres/abstract.00043940-200811000-00005.htm;jsessionid=KQQXLyvlhFnnNyVRWyygsh3v4Jbzc G5fBnn3cMsS0QRhJ8wKzKZT!-847254088!181195628!8091!-1

[Westcoastgirl]

Hi Joan, I had the decision to make; lumpectomy vs mastectomy. They had found a suspicious area in a mammogram that when biopsied was malignant. The surgeon wanted a mastectomy and the oncologist thought otherwise. I went with the surgeon as he was older, I thought wiser, and had had way more experience. I was later told that he was one of the most respected surgeons in the area. What I did find out however was in pathology they found another area in my breast that was precancerous and despite being in a very accessible area did not show up in mammograms. So if I had not had a mastectomy I would have been dealing with another cancer a few years down the road. As it is I will be doing radiation but I thank my lucky stars I had such a determined surgeon. He told me if I wanted a lumpectomy I would have to find another surgeon. Thank goodness I didn't. But then that is just my experience. I wonder if a mastectomy would cut back on some of the treatments you would have to do and that would always be a blessing. Such a difficult decision. I wish you all the best. Carolyn

[alicem]

Dear Joan,

I guess I'll chime in as well to give you one more opinion. I did read what Becky said and I agree that dealing with this appropriately means Lumpectomy with radiation OR a Mastectomy. It sounds like your oncologist is wanting a lumpectomy but with NO radiation? Is that because of your previous radiation to your back?

I had a similar experience as Carolyn (West coast girl) in that up until my mastectomy, my mammogram, biopsy, MRI and lumpectomy only showed DCIS. It wasn't until they did the mastectomy (because I only had 1 out of 6 clean margins) did they find a 2 cm tumor. It never showed up anywhere else. I am so grateful that I needed the mastectomy because I would not have known about the invasive tumor otherwise. Myself and about 4 other doctors never felt it either.

You stated . . . "is it crazy to consider reconstruction when it could raise the level of chance for infection and require another surgery?" I'm not sure why reconstruction would raise the chance for infection. I had the mastectomy and the reconstruction done all at the same time. I also had the DIEP reconstruction which used NONE of my muscles. The combined surgery only took a total of 5 hours and I couldn't be happier with the results. Since no muscle was used, the recovery was relatively easy. I had a hysterectomy 2 months earlier (the same day as the lumpectomy) -- that was much harder to recover from.

I got the feeling from my oncologist that he wanted me to try and keep as much of my original body intact as possible, and looking back I think it was more for psychological reasons than anything else. I don't miss the original "girl" at all. I feel like she turned her back on me and I don't miss her at all!!!

I hope some of this helps you in making a decision, but it is your own decision, not mine or anyone else's. Hopefully you will be able to make the one that is right for you.

[Debbie L.]

Hi Joan,

You ask excellent questions. But there is not one best answer to the question, which is why you're getting conflicting advice from experts. You could get another opinion, if you are truly not sure what feels right to you. You are in a fairly unusual situation and so you're not going to find any evidence to support either choice, for your situation. You can use logic to infer what might be true, from studies that looked at lumpectomy/rads vs. mastectomy for primary bc (no difference), but you're (alas) in uncharted territory. So you have to go with your gut, or maybe with the MD that your gut trusts the most. It will be the right decision, for you.

Becky cited some studies that have shown that when stage IV is the first diagnosis, it seems to help to remove the primary breast tumor - and I've seen several of those studies. But for some reason that I do not know, all oncologists are not on board with that plan. I think that there must be some quibbles with the studies and they are waiting for more evidence. It's not that they're not aware of the studies, yet they still are not always recommending breast surgery for de novo stage IV diagnoses. Maybe they are concerned about other studies that have shown that surgery can increase metastatic activity. I just don't know.

All that said, I also want to urge you not to rush. There is no urgency here - you have plenty of time to consider your options, and to get another opinion if you think that would help. Don't let them rush you.

If you choose mastectomy and want reconstruction - again that is a personal decision. No single best answer - just YOUR best answer. And again, you can take the time to gather information on which to base that decision. Not months and months of time, but certainly weeks. Take your time, consider the information that you gather, and see if you can tell what feels right to you.

What happened to the initial primary? It disappeared with chemo/Herceptin? And where was the mets? Bone only, or was there organ involvement? Not that those answers make any difference to your current choices - I guess I'm just curious. This new lump is ERPR+ also?

Let us know how you think this through, and what you decide. We'll have you in our thoughts.

Love,
Debbie Laxague

[alicem]

Debbie,

I just want to take a moment to thank you for your post. As always, I find your responses so well thought out. I have gained a lot of knowledge from your great wisdom.

So glad you are here!

Alice

[hutchibk]

Joan - maybe talk to your doc about what the upside or downside would be of systemic treatment first (a new chemo/targeted agent regimen) to maybe shrink the small tumor before either lumpectomy or mastectomy, (or I suppose in some cases, maybe neither). I am not advocating either way, but it's one of the many questions that I would ask my doc, if for no other reason than to be more informed and to learn more about the differences between surgical treatment, localized radiation treatment, and systemic treatment, how each is different when they stand alone, and how each is synergistic (or maybe not) with each other. I may be off base and it might not apply to recurrence breast tumors, but I think its worth the ask.

My first recurrence was discovered on the muscle of my reconstructed breast. It was a micro-sized spot, about 1mm and we found it during a caspsulectomy to replace my implant and remove uncomfortable scar tissue that formed around the implant. My surgeon unknowingly removed a tiny spot of new tumor with the scar tissue (too small for him to even see) that pathology alrerted him to. We treated it only with systemic chemotherapy (carbo/taxol/herceptin, which I did not have as my initial chemo regimen) and no radiation, and it has never recurred locally again. I have had recurrences in other places since then, and we have fought them back successfully with different treatment plans, but no other signs of it in my reconstruction area. Due to my staging at original dx, and some research I did early on, I chose not to have radiation on my original mastectomy site or node area. It was a personal decision for me as my original dx did not absolutely call for it.

The question of mastectomy vs. lumpectomy/rads is still on the radar of researchers who study and debate it year in and year out. There is not one correct answer, but there are case studies that can explain the pros and cons of of each school of thought. We often hear these divergent opinions at SABCS each year. This link may be of particular interest to you: http://www.breastcancer.org/treatment/surgery/new_research/20081006.jsp

I don't know if this helps you at all, but it never hurts to come up with a long list of questions to ask your doc. Mine has become accustomed to all of my harebrained questions :)LOL

All the best, and we are here for you. Keep asking questions!

[Darlene Denise]

I wrestled with this same decision and learned in the process, there is no clear cut medical data that supports treatment protocol.

My onc felt it important to remove the primary tumor after initial chemo results. I wanted the bitch out of there, for sure. He had no preference as to type of surgery. My breast surgeon explained both lumpectomy and mastectomy as options. Had I been early stage, I would have gone mastectomy route. Since I was already Sage IV, I decided to attempt the lumpectomy since my tumor did shrink dramatically from chemo and the surgery was being used for loco-regional control, not curative. I felt if clear margins were obtained, the auxila was removed and I had radiation along with the fact I would be a lifetime recipient of Herceptin that odds of another occurrence was small and that I could avoid a major surgery event and the reconstruction issues. If I have recurrence ( I still get mammograms every 6 months and onc does exam every 3 weeks) I can then have a mastectomy. We got clear margins, the lymph nodes were all negative (from chemo) and I completed radiation. The radiation onc wasn't initially receptive to giving radiation since I was stage IV, but after a consult with my surgeon he agreed it could offer potential benefit since I could have some longevity with Herceptin.

It's been a year since the surgery and I am comfortable with my decision. It was best for me. That should be your ultimate decision test, what makes sense to you and what are you comfortable with. There is no guarantee that either will eliminate future occurrences. I just prefer to address things only if or when they present, just like we do with our other sites of mets and with the least stress on my body.

I wish you peace of mind and a successful surgery.

Darlene