Please help! Was my mastectomy necassary?

oh dear.. and you live in the USA, where healthcare is supposed to be good.

Well, people make mistakes.. your med team made a dramatic mistake.

Anyway, having read many articles, the entire bco stage 4 community threads right at dx in 2012.. I can say

Even with a secondary cancer, some MOs prefer mastectomy to get rid of the cancer load. And even if that wasn't so, they could have dx'ed you as primary patient and do the mastectomy anyway.

As far as I know, you may insist for reconstruction.. as you were mis dx'ed and operated on. Still, is it worth it?

Quality of life is above everything else and many in fact don't end up happy with their reconstruction.. never is as good as orijinal.

My aunt had it, after a couple of months of which they found c-buggers on the reconstructed breast and had it removed a second time.

Each operation is to be considered carefully.. sometimes being stage 4 from the start is interestingly easier to deal with.. then start with earlier stages and and have recurrence..

each of us have our own journey and noone is living forever.. having one boob less didn't effect my self confidence, my dh's love or etc.. hope you swallow the news asap and have a proper treatment plan with your med team..

ı may sound a bit too taking-things-easily.. trust me my friend this is a very bumpy road, yet managable, if you accept the rules from day one. That is do whatever medicine offers and thank God each morning you are still alive

Hugs

Ebr

I am tempted to think that you may not live in the US as we don't, generally, refer to metastases as secondary cancer, but I may be wrong about your location. In the US reconstruction is covered for all mastectomies, whether it was prophylactic or due to presence of disease. As to whether the surgery was necessary, no one can say as there are varying opinions on whether it is a useful treatment ofr those who already have mets. Please let us know where you are.

Cosmo - It's not a bad thing to have a mastectomy. As you have heard, it is something we consider if the metastasis is not extensive. I've declined mastectomy so far, but it's on the table.

However, given that multiple mistakes were made in your treatment, someone should pay for reconstruction. I would lawyer up if needed because those are pretty egregious errors. It takes a lot of nerve to tell someone whose boob was removed in ERROR that they cannot have reconstruction.

And the idea that you won't live long enough to warrant having a full set with your diagnosis is both laughable and abusive. You are more than likely to outlive the nitwit who told you that.

Sorry you are dealing with this. Like we don't have enough going on.

>Z<

Cosmogirl, even if you sue them, the law is so elastic that it would take very long to conclude you are right. And then what? But of course I feel and agree how devastating this is..

as I mentioned before, getting rid of the cancer lıD is preferred by many MOs even if one is dx ed MBC from the start, and they remove the boob anyway. The operation helps the patient live longer, as examplified in various researches.

It's still hard to swallow, I and eveybody else on stage 4 forum understand, trust me. Noone but we do. Because we all have our own bu ps down the road, if you read past the threads you'll see..

new babies born with no cancer lose arms to wrong vaccines.. people get hit walking down the street.. that's life. It is when it happens to you, than you realise the devastation.

You need good state of mind, positive mood among anything else. Do read scuttler's story I suggest. And Nancyh who we recently lost. There are so many rock star ladies here who look ahead..

huge hugs,

Ebru

hi again..

You see these hundreds of pages each having tens of pages of views, comments and real data.. read them all. I did. And it worked wonders. Btw please be careful practicing any exercice be it yoga etc.. which stimulates the lymphatic sustem, as it is the highway of these c-buggers.

My MO, strictly forbid me do anything other than sswim and walk. And she is a teaching professor at a top notch reseach university.

About the lost boob, I have no more cents left, I am sorry. Hope you find the solution fast.

Best,

Ebr

No one can say for sure that your mastectomy was necessary but I have read recent studies that seem to suggest there is often a survival benefit to removing the primary tumor.

I am sorry to hear that you are considered ineligible for reconstruction. Is that for health reasons or because of insurance coverage? In the US there is a law that women are entitled to reconstruction regardless of stage. I did not reconstruct but that was by choice - I'm sure I'd be pretty upset if I was led to believe I could, only to find out I couldn't. I would at least get a second opinion to see if it is an option, if it's something you really want.

I can really relate to your diagnosis delays. My doctor ignored/dismissed the breast lump I found and wouldn't even do tests on it until many months later. It did turn out to be cancer but was considered "early stage" - however, they never did full body scans to see if it had spread. Then I finally got a full-body scan 2.5 years later due to pain, and I was told it was "all clear." However, several months later I found out that it was NOT all clear, that the scans had shown a bone met but no one told me and I wasn't officially diagnosed as metastatic until 6 months after that scan!! I can't help but wonder if things might have turned out differently or if I'd at least have made different decisions if there hadn't been so many diagnostic delays. It is incredibly frustrating and upsetting and I'm so sorry you've experienced something similar. HUGS

I second what zarovka says about lawyering up. Make sure to get copies of all your medical reports if you do not already have them. Do not be put off by how long this would take in the court system. You will gain some satisfaction that you are advocating for yourself and that you were wronged by several medical professionals dropping the ball when it comes to your case. At the very least, you should consult a lawyer about your situation, most will discuss the matter for free and then advise you whether you have a case that they are willing to take on. Many also work on contingency so they are paid only if you win.

Don't be shy or meek about it. Stand your ground. It sounds like serious mistakes were made. By bringing legal action, these doctors and hospitals may put better measures into place for better communication among them so this type thing does not occur to others.

I sought legal action after being turned down for disability payments. Yes, totally, completely different from what you are dealing with. Still, I wanted to share that with you. I had never consulted a lawyer before and was scared to do it, but I was angry enough that quack Dr. Denial said a scan report likely showed I only had arthritis and was probably only stage ii. After many months, I was notified that my disability was approved. I felt vindicated and glad I stuck up for myself.

And even if I had not been approved, I would have been satisfied that I at least did what I could to leave no stone unturned.

Cosmo girl, there is no reason to not do reconstruction. I was stage 4 at the get go too, w/bone mets in my spine. I did chemo for a large, misdiagnosed breast cancer. Bilateral mastectomy after chemo & then radiation. 6 months after radiation a PET scan showed spine was clean, but I had mets to the right intermammary chain of lymphnodes. More radiation and a few months later started reconstruction. I was 49. I had doubts that I wanted to go thru reconstruction, but my female surgeon convinced me I would feel better in the long run. I did saline implants, followed by nipple reconstruction, never did areolars, don't miss them either, but am glad to have cleavage. I am coming up on my 9th year anniversary of breast cancer Dx. Su