What made you decide mastectomy vs lumpectomy

dtr123

Hello TNBC friends! I was diagnosed with triple neg 2/8/13 , tested neg for Braca gene mutations; have 2 lymph nodes involved. I'm currently in chemo, finishing 6/14 then surgery in July. I have heard from 2 breast surgeons that same results with lumpectomy or mastectomy...pretty much have to go with my instincts. I will also have radiation because of lymph node involvement. I am 56 years old with two children...16 and 11 years old...I usually have strong instincts but this decision is so overwhelming for me. The one thing I know if mastectomy I don't want DIEP....too extensive and the can only use my belly muscle/fat for one breast. I'd either go with implants or prophylactics. Also if I do implants it would be 6 months to a year after radiation but I feel I need to make up my mind by July surgery...so what helped you with your decision? And can you have mastectomy without expanders then later after radiation sometime have expanders and implants inserted? I'm meeting with surgeon in a few weeks but thought us ask you all what made you make the confident decision. Thank you! By the way by physical exam the chemo has reduced my lump..cannot feel at all and my tumor was 1.9 cm and its at the very tip of my breast near underarm.

curveball

I am not triple negative, but also had a hard time picking my surgery. It was a very difficult decision for me because I wanted to avoid radiation, but had to choose a surgery without knowing whether the cancer had grown into my skin or fascia--if it had, I would have had to have RT even with a mastectomy. I think if I had known in advance, as you do, that I would have to have radiation in any case, I would have gone with the lumpectomy. Your description of the lump location sounds similar to where mine was--way around the side almost in my armpit. With lumpectomy, reconstruction may not be needed, and that would allow you to avoid the whole problem of how to do reconstruction after RT. Ask your plastic surgeon, but I believe that using tissue expanders after radiation often runs into complications.

dtr123

Thank you curveball! My instincts are saying lumpectomy right now! Of course subject to change..ha ha! I'm not adamant about reconstruction so I'd be ok with that if mastectomy is my choice or my surgeons suggestion. Last time i Spoke with her she said I have to go with my instincts but did say I have alot of healthy tissue...perhaps her hint toward lumpectomy. It seems mastectomy if not necessary is for peace of mind which I think is important to many....and I will also speak with radiation oncologist about whether radiation is more effective or can be more intense if I don't choose reconstruction. Did you have mastectomy without radiation? Because of my lymph node involvement radiation is for certain. Thank you so much, I appreciate your opinion!

curveball

@dtr123--that's right. The location my lump was in, there was not much there but skin, tumor and fascia, so the cancer could easily have gotten into the adjoining tissue on either side and then my treatment would have included RT even though I had a mastectomy. However, as it turned out, the margins were clean on both sides, so I was not advised to do radiation. Huge sigh of relief on my part!

NavyMom

dtr123:  I chose BMX.  I had 3 nodes affected and at the the time of DX,  (2009) rads were not recommended unless there were 4 or more nodes involved.  I did the TE and then had exchange 9 months later.  My lump was 2 cm in the top portion of my right breast.  It took me about 24 hours to make up my mind regarding the lx vs mx decision. And if I could have it done the following day I would have.  I knew the suvival stas were the same, I was 49 at dx and had a ton of stress in my life. (thank goodness things are a bit better now...quit a rotten job and DH got his act together,and young Navyson doing fine) I just felt that removing both breasts would be the better option for me, mentally. 

You know, now that I just wrote that......I really wonder what my choice would be if I were to have to make it today......hmmm. 

TifJ

dtr- I was given the choice of either even though I had 2 tumors and extensive DCIS. I chose the MX simply because I wanted to make sure it was all gone. The pathology after surgery stated that there was DCIS also present in another area- so it was good that I had the MX. Now, had I had a single lump and a small amount of DCIS I would have chosen the LX in a heartbeat! I had a tissue expander placed at the time of MX as well a small lift to the other side.

Babs37

My doctor gave me the choice at first, even if I had 3 lumps in my breast and 2 positive nodes. But in the end, after chemo, there was still a bit of cancer left in my breast so mastectomy was the way to go for me. My doctor explained to me that if i had LX, he would have to take too much of my breast out and because I dont have very big breast to start with it wouldn't be nice. So I went with right MX (doc told me to wait before recon... but I dont want it anymore. Doing just fine with foob ). Then I had rads on MX site and nodes site. I'm 2 years out since mx. Good luck with your decision. It is a hard one to take, I remember so well... 

dtr123

Thank you all for replies...Babs37.. I think I will tell my surgeon to start with lumpectomy and if while in surgery she thinks a mx would be more beneficial then I'll pre authorize her to go ahead. I truly am not feeling one way or another about reconstruction and will live with a foob for awhile...just want this wicked witch out of Me! Happy for you being two years out! I cannot wait to say that!

Pattysmiles

My doctor had recommended lumpectomy, and since it would have left me lopsided I was also offered a reduction in the other side and a loft of both breasts.



I was very happy with my results. However, I had one margin that was not as wide as they would have liked. Turned out the MRI had not picked up on 3 tumors. (Small, but still!)



So she wanted to go back in and get better margins.

Also turned out I would need chemo due to the "aggressiveness" of one tumor, and I believe because I was multi focal. Chemo to be Followed by radiation.



I took all that information in and at the doctors office said, lets do it.

BUT, on the ride home with my hubby I started thinking about those missed tumors, and if MRI is so accurate for dense breasts, then how were they missed!

I came home and wrote my pros and cons for lumpectomy vs. masectomy.

(Based on the extensive readings I had done on these boards) and my own comfort level with this whole thing and the follow ups I would be doing etc.

Masectomy "won" and I have made my 99% sure decision based on all of this by writing down and sorting out the good vs. the bad, so I won't be thinking I made the wrong choice.



In my particular case I will NOT need radiation if I have a masectomy.



Regarding DIEP...I do not know if you are confusing that with a TRAM flap.

A TRAM flap uses abdominal muscle and fat.

DIEP flap does not use muscle. There are less surgeons that do this surgery as it is a specialty. My plastic surgeon did not even offer it as a choice because she does not do it. Thankfully I have read these boards, because I have decided DIEP is what I want.



I also looked at the various options and weighed them for reconstruction.

Implants not for me-seems like maintainance and they "feel cold" in cold

TRAM flap, uses abdominal (aka core) muscle and I have a bad back and have been told for years to strengthen my core to keep my back "healthy".

DIEP uses microsurgery to transplant your own fat to make new breasts. No muscle involved. (They take capillaries, veins etc that is why it is microsurgery)



I was told for TRAM, (I listened to hear what Dr, had to in case she might change my mind) that I only had enough for 1 breast.

For DIEP I was told I had enough for two. By two different doctors.



I am opting to do both breasts, I feel "I am young enough" (47) to handle all this now (though on the DIEP boards there ARE older woman doing it without issue.i want to move on with as much less worry as possible. My breasts are VERY dense, I don't want any more surprises if I can help it.



Just an FYI, these specialty surgeons that do DIEP flaps can also take fat from other areas of the body to make breasts. I've read of hip, buttock, upper back and recently had read someone talked about arm.



There are some great threads to read about DIEP and the other "fat transfer" surgeries, There is the DIEP thread, NOLA (a hospital in New Orleans that appears to specialize in these surgeries) and a Charolette thread (another hospital that specializes in these surgeries)



Also read on the reconstruction threads as well for implants. There is even one there that discusses the proper sizing or something like that based on your own personal height etc.!

I LOVE that there is so much to read, because there is so much to learn. We each have to tailor our own journey based on what we know, why not learn as much as we can without relying on one or two doctors potentially limited knowledge.

Have a notebook to write things down so you can ask questions of your doctors.



Sorry this got lengthy. All the best on your journey.

Pat

mcgis

I chose a BMX. I had 2 tumors in my right breast. BC doesn't run in my family. My body just makes it. One tumor was BRCA+ but not the other. They did the gene test but they need to run more tests for mine  came up as "Uncertain Clinical Signifigance". So, because I wanted to limit the chance of it coming back after a lumpectomy or showing up on the left side I chose a BMX.

I hope you can feel good about what you choose for yourself.

dtr123

Wow Pattysmiles you are a wealth of info...and now I'm flip-flopping in my decision. I will definitely consider writing down the pros and cons. I also have very dense breasts so perhaps the MRI I'm having next week possibly will not pick up on something. My oncologist doesn't feel content with MRI's as he has had some patients show clear but then while in surgery they see differently but I think it's a baseline of sorts. Many thanks for opening up my mind!

Pattysmiles

Dtr123

Not trying to persuade you.

I use the pro/con for most major decisions.



I will, at times assign an importance number on a scale of 1-10 to each item.

In the end it helps me to see what was swimming in my head, in black and white, rated with importance to make my decision.

At one point I started to waiver again about the masectomy, then pulled out my sheet of paper with the pros and cons and remembered why I decided what I did!



This is just a sample of my list (not complete) and is my own opinion.



Lumpectomy: Masectomy

Pro. Con. Pro. Con

Smaller surgery- Recurrence risk? Decrease risk. Major surgery

Maintain feeling Radiation. No radiation. Loss feeling

Follow up testing. Less follow up testing

No rads if recurrence Younger can handle "easier"



Then I did the same with columns for the various reconstructions I learned about through this board. Although there was only one con with the TRAM flap for my case it was a screaming 10! So that left me with implants or DIEP....

If something isn't clear after making my pro/con list I will go back and assign those numbers of value as to importance.

To me, it removes the "emotion" of attempting to make a decision and the "what if" or "what would you do"....that tends to run around in my head. Naturally I might ask others opinions so I know I considered all the pros and cons.



I've used the pro/con decision making process for moving, car buying and other decisions that can drive me nuts!



If you will be having the masectomy with a immediate reconstruction see if your breast surgeon would do nipple sparring (again, a lot of thought goes into that decision too). Not all doctors will do it, not all patients are candidates. There truly is so much to learn here.



Good luck with your research.

Pat

Luah

dtr123: You may want to do a search on this topic, as many have struggled with this decision. I chose a Lx from a very competent surgeon I trusted completely. I was 52, with 2 lumps in my left breast, but close enough together that she could take all. 

Why did I choose Lx? Medical evidence suggested no significant dfference in outcomes, my breast was large enough to have a good cosmetic result, I am not BRCA+ (though I didn't know it at the time), I didn't want to lose my breast if I didn't have to, wanted to maintain feeling (though it took some time to come back due to nerve damage), it was the least medically invasive, offered faster recovery time and less risk of surgical complications. (And I trusted my surgeon an dher recommendation.)

Those were my reasons, but everyone has to sort out their own and then the decision becomes clearer. Good luck.