Surgery for Stage IV at DX?

[Mtngrl]

I was diagnosed at Stage IV and was immediately started on Taxol and Herceptin. When I asked my oncologist if I would be having surgery she said probably not.

This week the leader of my support group posted an abstract of a study that found that resection of the primary tumor did not improve survival in advanced breast cancer. Here's a link to the abstract: http://www.ncbi.nlm.nih.gov/pubmed/21775141

I'm relieved I won't have to go through the time, expense, downtime, risk, etc. of surgery and reconstruction, or face lympedema, but I'm interested in knowing what other people think. What is your experience?

(By the way, I don't know how the stupid icon got on this message, but I can't seem to get rid of it, or delete the post and start over.)

[her2 newBEE]

My wife is also stage 4 with liver mets (also dx in April), and this was one of my key questions. What role does surgery play at this point? Our oncologist seems to feel that surgery will likely be in the future, but he was quick to point out that oncologists may disagree on this point.

Our surgeon has said that she would take a 'wait and see' approach. In her view, the surgery hinges on how the liver tumors respond to further treatment. If the liver mets were responding and shrinking, surgery would probably make sense. Otherwise, surgery might not be in the cards.

[Ellie F]

Hi
I think you will find that this issue gets mixed responses both in the States and also here in England.
Some oncs believe that removing the breast tumour 'reduces' the disease load and also the 'source' of the cancer therby giving the immune system more help making treatment more effective,whilst others disagree
Most if they are being honest will admit that research on this subject is thin on the ground.
An anecdotal trend I seem to be noticing here is if the mets are confined to one organ or area then the oncs seem to recommend mastectomy.
Hope this helps
Ellie

[Mtngrl]

The book, Anticancer; A New Way of Life describes research done by Judah Folkman on metastatic cancer. He thinks the original tumor prevents the metastases from growing very large, so that removing it can actually aggravate the metastasis. (It's on page 52, if you have the book.) The inhibiting substance is called "angiostatin."(The footnotes are on p. 233).

If that's an accurate description of what's going on, then it's a good idea to leave the primary tumor in place, and concentrate on eradicating the mets.

In any case, I have no discomfort from the tumor and, as I said, I'm happy not to be side tracked into surgery at this point.

Breast cancer certainly is mysterious. It seems that for some people, "catching it early" does result in a cure, while for others it doesn't. The signature of at least one of our members indicates she was diagnosed and treated at Stage 0 and is now Stage IV. Many of us were Stage IV at diagnosis. A member of my support group found her own enlarged lymph node a month after a clear mammogram, and was Stage IV at diagnosis.

I'm learning to avoid over-generalizations, and to be skeptical when others make them.

[Ellie F]

Hi Amy
I think you have probably summed it up. I also read the chapter you're referring to. One of the problems as my onc always points out is that everyones cancer is individual, as is everyones response to treatment! Hence why large scale population studies do not give us the complete answer and why some small 'curable' tumours metastasize yet some very large tumours don't! I guess in cancerland you can make some predictions like you have a better chance of a cure if its early stage but what i've learned is there are absolutely NO guarantees! We also have some stage 4 sisters who have not had a mastectomy and have been NED for some time then the bc has returned in it's original site.
There are no easy answers!

Wishing you all the best for getting these mets under control

Ellie

[Unregistered]

I was stage IV from the beginning. After my mets responded very well to chemo (became NED) my oncologist strongly encouraged me to have a mastectomy, although she acknowledged that there was not conclusive evidence that this would help, just retrospective studies. In addition to believing that it could help extend survival, she also thought we wouldn't have to worry about using up chemo treatments treating recurrences in the breast or dealing with the consequences of uncontrollable breast tumors. Also, because I have inflammatory breast cancer, recurrences in the breast can be particularly awful. It is now about four years since my surgery, and I am still (NED).

I researched this a lot four years ago, and there were a fair number of retrospective studies on this topic. Unlike the abstract you posted, most found surgery had a benefit. A few reached the opposite conclusion.

[Kmswilson]

I have been stage IV with mets to bones and liver since the beginning. Both my surgeon (whom I saw originally before we had scan results back and knew it was stage IV) and my oncologist have told me that they would recommend the mastectomy once I get my mets under control. If it's possible to look forward to surgery, I do, because it means my docs are comfortable with my mets and their response to the chemo! I know some people might consider that strange, but my boobs have always been huge, and I look forward to giving my back a break and getting rid of a chunk of my cancer!

[Vicky]

When I was diagnosed stage IV in March both my onc and the surgeon I saw took a wait and see approach about mastectomy. But since my liver mets disappeared and my the one met in my spine shrunk after 3 treatments with TDM-1, I am a better candidate for surgery. Truly however, the driving force behind the decision is that my tumor has ulcerated my skin and although it often scabs over, it most often breaks open and bleeds leaving me with an open wound. Friday, although I am nervous, I am also happy and relieved to be getting rid of it altogether!

[Becky]

http://www.dslrf.org/breastcancer/content.asp?CATID=27&L2=3&L3=7&L4=0&PID=&sid=132&cid=1279

I was under the impression that recent studies show that removing the primary tumor prolongs survival so I found this and it references other studies.

[Mtngrl]

Vicky--you are definitely in the category of patients for whom surgery is indicated to improve your quality of life. I'd be just as anxious as you are to get that taken care of.

Becky--thank you for that link. I was hoping to get more information on this. As the article points out, with retrospective studies we see correlation but can't really draw any conclusions about causation. There'd have to be a controlled, double blind study (and then a long wait) to understand more about who might benefit and who would not.

[Joan S.]

Dear Amy,
Everyone has a different experience. I was also diagnosed initially with Stage 4 in April '07. I had 6 1/2 months of taxol, herceptin and zometa. I responded so well that my onc recommended we take a wait and see approach with the surgery. The next year I had a recurrence in the same breast but everything else was stable so it was recommended that I have a mastectomy. They thought that it would give me better control of the disease but the research was not definitive. Since then I have had two local recurrences so who knows? I strongly believe that it is VERY important to get a second and even a third opinion before you make any decision. Hope this helps.
Joan

[Mtngrl]

Today my in-person stage 4 support group moderator sent out two studies. One found no benefit to surgery. It was especially useless for triple negative patients with tumors larger than 5 cm (who were Stage IV at diagnosis), but in footnotes it mentions five studies that do find an overall survival benefit. Another study, from a single hospital in Spain, found a pronounced overall survival advantage. Timing of surgery was unimportant. Hmm. Maybe I'll get surgery after all. We'll see what my PET scan shows.

Inbox me if you want me to email you the studies.

[Mtngrl]

Here's what one of the reports says about the two competing theories about resecting the original tumor. On the one hand, it might exacerbate the mets (although they might then be easy to eliminate with chemo because they're growing so fast). On the other hand, the main tumor might have an overall immune-suppressing effect that goes away if it's removed.

Other theories have been proposed regarding the effect of surgical removal of the primary tumor on the growth kinetics of micrometastases. Retsky et al. found that surgical removal of the primary tumor accelerated relapse in premenopausal node-positive patients, which may have resulted from the removal of angiogenic inhibitors with resection of the primary tumor. In contrast, others have shown that a surge of angiogenesis in distant metastatic disease sites may allow for a highly chemosensitive state in the rapidly growing metastases and account for the prolonged survival seen in patients with metastatic cancers who underwent adjuvant chemotherapy soon after surgery.

Another theory focuses on the primary tumor's modulation of the immune system. Danna et al. demonstrated that a primary tumor may influence metastatic disease progression through the release of immunosuppressive factors. The restoration of immunocompetence after removal of the primary tumor may be due to a quantitative decrease in the production of immunosuppressive cytokines or due to a qualitatively less efficient immunosuppressive cytokine production by metastatic colonies. Nonetheless, removal of the primary tumor seems to restore immune competence by removing a potentially dependent relationship between the primary tumor and its metastases.

[tricia keegan]

I also read the report Becky posted some time ago and thought this was the latest findings on this????

My friend had a large tumour in rt breast having had a mast done on her left, while still fighting brain and bone mets she did find it upsetting to see the tumour growing so large so it may be worth talking to your onc about this again!

[Vicky]

I have to say retrospectively, I couldn't fully appreciate the emotional and psychological boost having the tumor removed from my right breast would give me. I would feel for changes in the tumor several times a day. My doctor was also prone to measuring and feeling for changes and we spent a lot of time and energy monitoring the tumor. Now that it is gone, I feel like a burden has lifted. This is of course something that can't be measured very well in a study :)

[Mtngrl]

Vicky, I hear you. I'm sure that's a huge benefit for you.

In my case, there are no tumor markers in my blood, so besides scans the only way to monitor my progress is to watch the tumor (plus pay attention to how my lungs and liver appear to be doing.) The report from the second scan in August merely said the tumor "showed effects" of treatment, but without giving any measurements or other description of those effects. I hope they will be more forthcoming in my PET scan report. (I'm scheduled for a PET scan next Monday.) I will specifically ask for that.

For me, so far, the tumor appears to be stable or shrinking. There was never a palpable lump, so the only signs of cancer were that the tumor breast felt slightly more dense and was slightly larger than the other one. For awhile after chemo ended, maybe up to a month, that breast felt kind of achy off and on. It didn't hurt the way it did when I first noticed something was wrong. (The underwire from my bra pressed on it, and it hurt). It also seemed to be a little larger again. But now both breasts feel and look the same again. I hope that's a good sign. It seems as if it would be.

Only about 4 or 5% of breast cancers are stage 4 at diagnosis, and it's considered incurable. It seems to me that a randomized, double blind prospective study of this question just isn't a high priority. The results would come too late to help me, but it would be worthwhile for future people.

[Vicky]

Amy,

Oh I do hope too you will get a better idea of the tumor based on your PET scan. Hopefully you will gain some clarity about your next steps! You are being prudent and thorough in exploring all the options. I concur that the studies need to be done, and I think you make a valid point- with only 4 to 5 percent being diagnosed stage IV from the start, it most likely isn't a huge priority right now for research.

You'll have to come back and update us on your results.

Vicky