Stage IV Bone Mets and Bilateral Mastectomy?

TexasJ

So this has been on my mind since I my appointment this past Tuesday. I wanted to to get some insight for my fellow warriors on here and see if any of y'all have been through this same experience.

My surgeon stated since I have stage IV there was no reason for me to do a mastectomy of both breasts since I pretty much have incurable breast cancer. She said that taking the other breast would not "Increase the quality" of my life. So pretty much she thinks its a wast of time to take the other breast and won't help my situation. Its funny though because at the beginning she recommended a bilateral mastectomy with DIEP flap reconstruction when I first saw her. Now since Im "Incurable" she's making it as if its a chore to even try to help me.

Let me give you a bit of back story though. I'm 27 and have stage IV with bone mets to my sternum. I have no genetic mutation for breast cancer and no family history of it. So the percentage is pretty slim anyways. But if I sum how got breast cancer with the odds being that slim what are the chances of it recurring in my other breasts if the tissue is not taken out as well? I'm really scared that if I don't get the tissue from both taken out there will be a higher chance of recurrence?

My oncologist though is stating I'm doing really well on chemo and that my body is handling it better then expected he even states I could go back to work if I choose to. These all seem like good signs that going through with a double mastectomy would be ok. The mass has diminished quite a bit in size. Also surgery is estimated to take place about 3 months after chemo since my doctor is allowing me to take a trip with my family to Thailand in late October before surgery.

The question for y'all is, have any of y'all gone through or known anyone who's done a bilateral mastectomy with or without DIEP reconstruction? If so did you have issues with the doctor or did they recommend it from the get go?

Thank y'all for reading this I really just need some insight, this has been weighing heavily on my mind recently.

blainejennifer

TexasJ:

Some studies are indicating that removing the primary mass leads to longer longevity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC39223...

If you decide to go for the mastectomy (and it is your choice, so if your surgeon isn't on board, it's time to go surgeon shopping!), keep in mind that a simple mastectomy is pretty easy to recover from. It's when you start getting into reconstruction that the surgery/recovery starts getting more complex. I opted for no reconstruction, but you are young, and the flat life might not be appealing to you. Once again - it is YOUR choice. But, between implants and DIEP, the latter is harder to recover from as it requires moving your tissue around.

Best wishes,

Jennifer

illimae

Texasj, I am 42 and stage IV with a single bone met on my hip. A lumpectomy was recommended for me with a reduction and lift since I had plenty of breast tissue to work with. If I were you, I would push back on the bilateral mastectomy and reconstruction, if that's what you want. I think having only one breast or unmatching breasts at 27 is absolutely a quality of life issue. Just say "this is what I want, do I need to find another surgeon?"

TexasJ

Jennifer:

Thank you for your response I really do appreciate it. I will definitely start surgeon shopping just to get second opinions.

Illimae:

To correct myself I have a single bone met to my sternum they haven't found any other ones thank goodness also my doctor is hoping that chemo and radiation will diminish it. I think I'm defiantly going to push for what I want. Ive gotten a lot of feedback from friends and family and feel surgeon shopping/second opinion is my best call. I will be seeing a plastic surgeon soon so I'm going to bring it up to him and see how he feels as well. But your absolutely right about my quality of life. Thank you for your insight and advice, this really does put my nerves at ease.

Casun19

I am so happy this thread is here! I was just about to ask the group if anyone had done DIEPsurgery when stage IV? Following along.

I had bilateral mastectomy with reconstruction, however i ended up with an infection and the expanders had to be removed. After I finished chemo I was supposed to go back in to get it corrected but they found out I was stage iv and cancelled everything

P.S. I would absolutely find another plastic surgeon that seems more interested!

TexasJ

Casun:

So I just saw my plastic surgeon today he said I'm a great candidate for DIEP and wants proceed he said since he's good friends with my current breast cancer surgeon he would relay the message over about how he feels about me going through with it so pretty much I'm giving her a second chance. Also my oncologist agrees with him and thinks it would be ok to do the procedure since I'm tolerating chemo very well so he will be talking to my surgeon too. Even though I'm stage IV such as you they do believe the emotional part plays a big role in the healing process and if I feel that doing both will put my mind at ease then they want to proceed with it.

I will be undergoing the DIEP procedure mid November also from what my plastic surgeon say if I were to get implants there is a chance of them becoming compromised due to radiation that I have to receive. Also radiation causes your skin and tissue to tighten and shrink. From what he told me so he said we would make the breast that is to receive radiation a bit bigger so it will even out to my other breast. Since I've already had a C-Section too he will be using my same scar when cutting my belly fat so I will have minimal scarring. Also after surgery in our follow up appointments he says if I don't feel like my breast are as full as id like them he would graft fat in them.

Also another big thing is if your on hormone blockers you have to be off of them 1 month prior to the procedure because it can cause blood clots and when they do a DIEP they cut a small amount of blood vessels from your abdomen and don't want your body to reject the transfer. I myself have to stop taking mine mid October since I'm waiting to do surgery after my big Thailand trip with my family.

I can keep you updated on my procedure and everything they tell me so if you do plan on doing DIEP you will know what to expect.

Tigwin

Casun119,

Iam not sure where in CA you live but if SoCal, The City of Hope in Duarte is amazing. Dr. James Anderson was my surgeon. If you want a second opinion, I will call him and get you an appointment with him. He is so gifted and as do not know the regulations for having TRAM in stage IV, I do know if there is anyone that can get it done for you, it his him.

Please feel free to Send me a private message if you are interested and we can chat over the phone if you would like.

Second opinions are always suggested and Dr Anderson's special gift is correcting surgeries that have not turned out well or rejections.

All the best !

Casun19

nice TexasJ! This is good to know. I have an appointment with my oncologist tomorrow and will ask again about reconstruction. I think he is the one that is putting the hold on it because he wants more scans and doesn't want me to come off meds.

Tigwin, thank you! I am in Northern California and have an amazing plastic surgeon who has always been ready to reconstruct. I think it's just a matter of getting all the docs to agree reconstruction is a priority.

I started following along this thread was because I never considered the Diep flap before but since my body rejected implants the first time or I had that infection, I wanted to see what other stage iv gals have done. My plastic surgeon gave me a long list of things she could do. And this was one of them!

Tigwin

Hi Casun19

It is a hard recovery. I did it in 2008 when I had stage II. Now with stage IV we heal much slower so make sure you take that into consideration. You only have one met so I am assuming your body can heal very well. I have a lot of mets so it would be difficult for me to do now. If you ever want to chat. Private message me and I will answer any questions you have. Best of luck!!

Mary85

Hi TexasJ,

When I was first diagnosed, I was already at Stage IV and my onco agreed with my breast surgeon that the best course of treatment was a bilateral mastectomy. Not all docs treat in the same way though so it never hurts to get a second opinion.

Wishing you much luck with your treatment--take care!

CBerg

Hello. I am in a similar situation as yours, with Stage 4 Cancer that has spread to my bones. Because I have responded well to treatment, my surgeon is recommending a single mastectomy, but she is leaving it up to me whether I do both breasts. I am very confused and I need to make up my mind soon as my surgery is in a week. However, my reconstruction will not happen for some time as they want my body to completely heal between surgeries as the surgery itself can cause the cancer to flare- apparently. I was wondering if you would mind sharing what you had decided to do

ABeautifulSunset

CBerg, I was diagnosed stage 4 to bone, from the get go. I only needed one breast removed, but out of fear, I asked for a bmx. I wish I hadn't. I miss my breasts. What I wouldnt do for one real breast right now. Both the surgeon and my MO said I didn't really need it, but it was personal choice. Just my story

Stefanie