Mastectomy or Not

mmdj43 · August 2009

'm hoping to get input from others as well as I need to make a critical decision fairly soon. I was diagnosed with Stage IV right out of the gate with mets to spine and liver. Those spots are gone and there is what the report indicates as 'minimal activity' left in the breast. I met with my primary breast surgeon who had said (prior to my scans) to see if the scans are good and if so, to do the mastectomy shortly after my last chemo tx (which was last month). His reason is that recent studies are showing an improved survival outcome by removing the primary tumor. Then we met with a second breast surgeon at Duke who recommended that we hold off on doing the surgery for at least a year, possibly two. Their reason is that they are afraid of going in and 'stirring things up'. Meaning that if there is any cancer still left, that the surgery could stir them up and they would scatter around to find another home in my body. And a third surgeon suggested to do the surgery. Now we've read studies that ultimately indicate a better survival outcome. However, after speaking with some other friends that have been in my situation, they indicated that their docs recommended not to do the surgery.

So my question is this.............do you decide on having a mastectomy or not? Does it tend to provide a better survival outcome for Stage IV women?

Any suggestions, input, advice, etc. would be greatly appreciated.

Thanks!

Mary

Dx 2/16/2009, IDC, 4cm, Stage IV, Grade 2, ER+/PR+, HER2+++

rkt · August 2009

Dear Mary,

I think the jury is still out on whether mastectomy with stage iv helps. My surgeon said that until a randomized clinical trial to study the issue was proposed, carried out and completed, it is hard to say 'yes it helps' or 'no it doesn't'. Much of the literature says it appears that there is a benefit, but they can't conclusively say it is due to the mastectomy - it may be due to selection bias in that those who were doing well were offered mastectomy and might have done just as well without the mastectomy.

I was like you - diagnosed stage iv at outset June 2008 - extensive mets to bones. Had clear PET scans in December and March, and had mastectomy May 2009. Pathology showed residual tumor clusters in breast (biggest 1.5 mm) at original tumor site and DCIS throughout remaining breast tissue. I am glad I had mastectomy. Went in July for followup and had bone scan and blood work - seemed ok. I am currently in week 6 of 6.5 weeks of radiation (recommended by surgeon who said she was treating me as if I were a patient who presented with original tumor same size as mine which responded to treatment and no mets). I gathered a lot of papers from the journal literature that discussed stage iv and mastectomy - my surgeon is one of the proponents. She said she was going for curative intent. My bone mets are not active (at least not large enough to be seen on PET scan as active) and my bone scans are improving each time. I go back in November for next visit and will have bone scan and PET scan - so hopefully won't find that the surgery stirred things up! I would be happy to send you pdf files of the articles I collected if you PM me your email address.

Regards,

Becky

vhqh · August 2009

I was stage iv from the get go also and had to push a little to get a mastectomy done. I'm glad they went along with me though as they found much more extensive flecks of IDC that the doctors had no idea was there. I knew it was though as it ran right across where I had felt a ridge of thickening that faded away during chemo, they also found ALH and DCIS.

donnabee · August 2009

I, too, was stage iv from the start. My onc, in consultation with a ton of surgeons has decided to do nothing about the primary lump-at this time. It's shrinking due to tx (no chemo, just arimidex and herceptin). The studies that indicate that there is possibly a better result if the primary tumor is removed are looking at data after the fact. There is a possibility that the people who opt for surgery at stage iv are healthier candidates from the get-go, so the findings wouldn't necessarily hold true for all individuals.

That being said, I really wanted the damn lump out. However I realise now that surgery and 7 weeks of radiation aren't exactly a picnic, so I am just waiting and watching along with the rest of them. good luck to all of you--donna

camdenandmo · August 2009

I was diagnosed Stage IV from the beginning last September. All three doctors I saw said leave the lump. My Sloan Kettering doctor (my current doctor) said we might revisit it later. Her plan was to monitor the lump as another diagnostic tool. The lump shrank tremendously and is barely palpable. Initially I was very glad that I had not had the lump removed. I could feel that my treatment was working and when it stopped shrinking rapidly, I could feel that it was not growing. The lump had, ironically, become my biggest comfort.

But...of course there has to be a but, on my last doctor's visit she seemed to notice no difference in the lump and my tumor markers doubled. We are assuming progression and I am having scans tomorrow. If it is progression, the lump didn't really do it's job. And if it isn't going to do what we left it for, I'd rather have it removed. I am waiting out my scanxiety with research. I am going to take some of the research and discuss it with her again.

I have found two theories I find really interesting. One was basically that the metastatic cells would return to the primary site to refuel, so the primary fed the outliers. The other was that metastis was similar to colonization and that the primary would not let the outliers out grow it. That metastatic cells grew more when the primary was not there. Of course they completely contradict each other. They both may be completely bunk theories, but I think they are interesting points for discussion.

With all that said, I am glad I waited. I feel like I am in a much better place to make a decision right now. When I was diagnosed I knew nothing about cancer. I wanted the lump out because it was there. But it did provide some comfort in the last year. And I really don't think it did any harm. And now I can look at it from a somewhat less emotional standpoint. Or I can at least consider different sides.

camdenandmo · September 2009

I saw my doctor about a week after my last post. I was very surprised when she brought up having the primary removed. I see a surgeon on the 14th. She said that survival rates are without a doubt higher but, like others have said, women that have surgery may be likely to survive longer anyway. I want to be in that group, whatever the reason.

I am curious about Stage IV women's experience with surgery and reconstruction. I've tried reading the forums, but it is all really overwhelming. And I feel like it is different for someone that is Stage IV. I worry the doctor will feel like I don't need reconstruction because I am stage IV. I am 34 and active and I want reconstruction.

leggo · September 2009

camdenandmo, I am Stage IV. I didn't choose reconstruction myself, but it was certainly an option. I'm in Canada, however, so I have no idea how insurance companies in the U.S. work. Here it's automatically covered, regardless of your stage. I hope that is the case for you.

Mastectomy or Not

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