Reconstruction with Stage IV

Anonymous

Reconstruction with Stage IV

exbrnxgrl

coffeepleez,

In some respects I fit the criteria you’ve described but my situation was quite unusual. In order to try to understand your situation better please consider making your signature line, with details of your bc, surgeries, tx, etc.public, as this helps us understand your situation better.

moth

Coffeepleez, when you say de-bulk, are you talking about debulking a tumor from the breast? I think we need more info to even begin to try to answer or put you in touch with someone who was in similar situation. Where are your mets? How long have you been stage 4, what are your hormone markers etc. Systemic therapy can really affect surgical recovery so we need more info about what surgery you're contemplating and what systemic treatment you might be facing.

exbrnxgrl

Thanks for adding info to your signature line. The word debulking has got me a bit confused. Is your breast tumor large or distorting your breast in some way? The word debulk is often used in conjunction with uterine tumors but I am not familiar with its use in reference to breast tumors.

If what you're asking about is mastectomy and recon at stage IV then the best I can say is that opinions vary on it's usefulness as far as a tool for stopping or slowing down progression. A few doctors believe it can be a good thing and can lessen the tumor burden but (this is a guess based on anecdotes) most doctors will go with treatment of your mets and not push mastectomy. The thinking is that the horse is already out of the barn.

I had a bmx with one step recon but 6 weeks later, through an unrelated PET scan, a bone met was seen. It was biopsied and it matched my breast tumor. Of course it didn't crop up in those 6 weeks (indolent grade 1) but had simply been undiscovered. Personally, I would have skipped the bmx and recon had I known. I am sure that you understand that a mastectomy and recon are major surgeries with potential for not only complications but multiple surgeries as well. I know that this is the path that you wish to follow but I think you may have to shop for a doctor who is willing to go that route for you as many would consider it unnecessary surgery. Do you have a compelling reason for wanting the surgery? Perhaps if you do you might present the case to a doctor that way.

I am almost 10 years out from my surgery. I have been treated with aromatase inhibitors as well as 3 years on a bone strengthening drug. I belong to an all inclusive HMO and unless there were good reasons, the entire system would have said no to a mastectomy had it been known that I already had mets. I wish you the best and hope that you will consider the medical implications of a big surgery that you might not need. I don't mean to sound unsympathetic but without understanding why you want these procedures it seems that asking for a possibly unneeded surgery is a bit baffling.

Moderators

Coffeepleez, hi and welcome. We are sorry you find yourself here, but glad you found our community.

Based on this article, https://www.cancer.gov/publications/dictionaries/c..., debulking is defined as the surgical removal of as much of a tumor as possible (also called tumor debulking).

As described by the Mayo Clinic here ( https://www.mayoclinic.org/diseases-conditions/can...) Debulking: When it's not possible to remove all of a cancerous tumor — for example, because doing so may severely harm an organ — your doctor may remove as much as possible (debulking) in order to make chemotherapy or radiation more effective.

Is this what you are referencing? We don't have this term on our site, but are planning to add it in our next content revisions.

Feel free to share what the surgeon has proposed so we can best support you.

Anonymous

If you are Stage IV de novo (as in, you haven't had breast cancer before) there are a few ladies on the de novo thread who have had surgery and recon. However, most of the time it looks like it is usually done for the HER2+ women, or women who may have been classed as an earlier stage before scans came back. There is one person on the board I can think of who was de novo ER+ - Rosie24 - I believe she was offered surgery after over a year stable with her liver mets. Her story is in the de novo thread.

When I was diagnosed I couldn't figure out why they wouldn't go for surgery, however it was explained that the main focus was to "get a lid on the cancer" and "surgery may be discussed further down the line" which is British for "no chance". I was a total wreck at diagnosis and getting the bone mets under control was imperative. Now its been a little over a year on the drugs and the breast tumor has shrunk as well.

The risk of surgery is that you will have to be off meds, or could have complications that cause you to be off medication, resulting in the mets having a chance to expand further. Actually now I've gotten off the surgery focus and am hammering on about getting my ovaries out, which they are more than happy to do.

I guess one other question that could swing this in your favor - how many mets and to where in the bones? Do you have less than 5? That would make you oligometastatic and some doctors do believe in trying for cure with surgery/systemic therapy. Again - try the de novo thread, some of those ladies are that status and may be able to point you to an MO/BS.

moth

Coffeepleez, I think that will be tricky. Sounds like it would be a difficult surgery and if it's invading muscle, then the idea that it might confer some overall survival (OS) benefit becomes even more hard to predict. The studies that I saw on potentially some OS benefit referred to smaller, easily excised tumors and we've seen several studies which showed no OS benefit and a couple studies which did....which makes it hard to predict for whom it will be helpful. However any benefit that arises (like those in the 2020 study from China https://www.nature.com/articles/s41598-020-75119-0 median survival with surgery was 45 months v 28 months without) seems to depend on being able to remove the whole tumor... & also note that they report "Patients who underwent surgery after systemic treatment had better survival than those who underwent surgery immediately "

Have you approached a breast surgeon about this?

How many bone mets do you have & have mets to other organs been ruled out?

Systemic therapy is going to be necessary and I think you need to be clear eyed about how much that takes out of some of us. Your ability to continue certain things will depend on how you respond to systemic therapies. Is your oncologist recommending chemo or hormone therapies to start?

One strategy might be to try to shrink it with chemo and then try to surgically excise. What is your oncology team suggesting?

exbrnxgrl

coffeepleez,

I do understand your quality over quantity feelings. I am unclear on how having major surgery, with all the risks and potential complications that surgery and recon brings enhances quality. Ultimately, all medical decisions are yours. Whether a doctor who may be willing to perform your desired surgery is a maverick or not is questionable since the value in doing the surgery is itself questionable. I wish you the best as you navigate along your bc path

exbrnxgrl

coffeepleez,

I don’t think anyone is judging you. I would venture to guess that most of us are trying to understand your reasons for wanting this , that’s all. If you are simply looking for those who have done this or the names of doctors who are willing to do this, then perhaps you should explicitly state. You can state that you do not wish to hear information, opinions, or unrelatedpersonal experiences and will ignore those posts

We are a very supportive group and quite nurturing (as one might expect a female dominated site to be) group. We care, we question and sometimes we educate. However for the most part we don’t judge. I am sorry if you interpreted my comments or others as being judgmental. If we offered information about mastectomies and everything associated it was not to judge but to inform. Best of luck to you.

jhl

Hello Coffeepleez,

This is an evolving area of Stage IV treatment. You might want to contact Dr Khan at Northwestern to get more information. This is a publication from her from 2019: https://ascopost.com/issues/november-25-2019/when-...

The tricky part of having a mastectomy with a de-novo Stage IV diagnosis is the oncologist will want to get systemic disease under control first. Remember their oath to Do No Harm? A surgeon will not want to operate before systemic disease is controlled because the disease will kill you. Chemotherapy will make wound healing more difficult, but not impossible. So, it may be you would have adjuvant chemotherapy first and surgery second.

If I were in your shoes and with your determination, I would contact Dr Khan who might be able to get you in touch with people who can treat your disease in the manner that is most acceptable to you. I would also implore you to reset your approach in an effort to gain wider acceptance. None of us know you nor will those physicians whom you would like to treat you. We don't judge here nor do those of us who are in healthcare. Being belligerent and pugnacious will not sway those who can help you to do so.

I wish you the very best on your journey to better health,

Jane