Why do people choose MX's

Munmunmary

I am 5 days post exchange surgery. This is a truly personal decision. You gotta consider what you can live with. I had a very small tumor that was picked up on MRI. I have been been having mammogram since 35. After having a benign biopsy 5 years ago I have been getting yearly mmaogram and MRI. I understand that statistically there is no difference in survival, but I have given my husband and kids peace mind. There is no true guarantees and while I had stage 1 and DCIS on the left i also had ADH on the right. I felt like I was waiting for the other shoe to drop. I live in south Florida and I swear I hear more BMX in general. I hear its very regional too. Good luck on your decision

santabarbarian

I want the least possible intervention w/ the fewest side effects that will still give me a decently long life. With TNBC you have to get rads anyhow, so I am choosing a lumpectomy as survival is equivalent. Also w TNBC, it usually returns rapidly and metastatic or not at all. After 3 years the rates of recurrence plummet. So a long life after TNBC is something I might get lucky and get.

My surgeon was teetering towards taking all my level I and level II nodes, as I had a cancerous node upon diagnosis, but my recent imaging showed no cancer in breast or nodes. I asked if she could sample the one cancerous node and a few other nodes, and if there was any live cancer, she could go back for more. She thought this was a decent plan. Surgery is Fri.

I had a friend some years back with rotten Lymphedema. I do not want that! I'd rather avoid over treatment as long as my life is protected.

Also, I am not a worrier.

And Personally I would find little use to having a breast that did not have normal sensation, so if I have to get MX I'd forego reconstruction.

amygil81

I was dx with DCIS in Dec of 2000. I didn't get the choice of a lumpectomy. On biopsy, my tumor was multifocal (small bits in several places), so they had to take my entire left breast. Because I had the mastectomy, I didn't need rads, and because mine was er-/pr-, I didn't need tamoxifen. I was so, so glad not to need chemo. I'd had it for bone cancer as a teen, and it was awful.

Unfortunately, I had a chest wall recurrence of IDC nine years later, and needed more extensive treatment. But surgery-only for DCIS got me 9 good years, empty left bra cup and all. Best to you whatever you decide.

buttonsmachine

Strictly medical reasons aside (i.e. BRCA+, multifocal tumors), it's a very personal decision. I think it comes down to which set of consequences you are most comfortable with, and what YOU want to live with in the years after a cancer diagnosis.

Some people choose a mastectomy because they genuinely feel better being rid of their breasts. That is a totally valid decision. Other people choose a lumpectomy, which generally speaking, tends to have a lower impact on how our bodies look and feel after breast cancer. That is also a totally valid decision.

I've done both - for me, the lumpectomy was preferable. After the lumpectomy I looked like my usual self, and felt like my usual self. I had less pain, I still had sensation, and I had my usual function and range of motion. I still felt attractive, and aside from a small scar on my breast, no one would have ever known I'd had breast cancer. After the mastectomy... well, all of that was MUCH more difficult.

Importantly though, whether we have a lumpectomy or a mastectomy, we all have to live with the uncertainty of our cancer coming back, either locally or distantly. Unfortunately there are no guarantees either way. I had local recurrences after the lumpectomy AND after the mastectomy (which led to the chest wall resection, but that's another story).

My advice is basically this: get the surgery YOU are most comfortable living with, and don't make your decision based on fear of the cancer. Just my two cents and experience.

LisaK12

I had very dense breasts and had had multiple lumpectomies over the years, all of which turned out to be benign, but then last year I was bleeding from the nipple. A mammogram and ultrasound revealed nothing. Six months later another mammogram and ultrasound showed suspicious areas so they biopsied and I was diagnosed with stage 0 DCIS in my left breast. After two lumpectomies with "dirty" margins -- in other words cancerous cells were found on the margins -- It was clear they had not gotten it all. Because of that, the recommendation was a mastectomy. A second opinion recommended a third lumpectomy followed by weeks of radiation if the third lumpectomy had clean margins. After a couple of months of researching others' experiences I instead opted for a bilateral mastectomy with immediate, direct-to-prepectoral-implant reconstruction. I am thrilled with my decision because it allowed me to avoid radiation and further treatment, I have the security of knowing I am cancer-free and no longer require regular mammograms, my recovery was relatively uncomplicated and straightforward and I was back to international travel six weeks after my surgery, and my breasts are symmetrical and almost exactly the same size as they were before (I didn't have to go buy new clothes). The peace of mind is priceless.

SoCalLisa

I had a lumpectomy. Chemo and then they found a tumor they had missed so i had a mastectomy. But whatever you do. Get 2 opinions.

NoteRed

I had also lci and my initial decision was mastectomy even before my surgeon suggested it. Turns out i was right. Cause I had a “sick”left breast as he said after the diag

Mncteach

I chose bilateral mastectomy because I had already had 3 biopsies and really didn’t want to go through all the testing and worry every time I had to get a mammogram. I had immediate reconstruction and even though it hasn’t been the easiest recovery, I feel like it was the right choice for me. And therein lies the truth- unless you are told you must have one procedure, it is personal choice and how you feel. I got a second opinion and spoke to a therapist about what I was feeling and options. I even changed my mind about 10 times before I decided. After I decided I felt at peace and that was important for me. Every person is different and no one should judge another because you are not them!

LisaK12

Forgot to mention that after the double mastectomy the pathology report showed precancerous changes (never found on any previous imaging) in the tissue of my "healthy" breast in addition to extensive DCIS throughout all four quadrants of the other one (also not found on previous imaging). Family members who were originally concerned that I was treating it too aggressively now agree that mastectomy was the right choice for me. I hated not knowing when or if my DCIS would become invasive. But there is no one correct answer for everyone.

Meow13

It is good to note plastic surgery is really light years ahead of cancer treatment atleast in my eyes. My DIEP essentially "fixed" my mastectomy. Having stomach area tissue and skin is just as acceptable as breast tissue in my case. Looks and feels great.

dtad

Meow13...I totally agree! As I've mentioned before my dear cousin died of BC almost 30 years ago after battling the disease for 10 very difficult years. When I was diagnosed I was stunned how little treatment and procedures had changed. We should be much further along at this point in time. Very sad.

Runrcrb

jessie123,

As others have said it is a personal decision. Age at diagnosis, tumor characteristics, family history are just a few of the considerations. After your MRI and any subsequent biopsies, I encourage you to discuss options with your breast surgeon (more than one if you aren’t fully confident in the one you’re talking to). Meet with a plastic surgeon or two, a medical oncologist and a radiation oncologist. If your relationship warrants it, talk to your PCP.

I was diagnosed with low likelihood of recurrence. Too many quadrants of tumor location for lumpectomy. I still had 35 radiation sessions. Contrary to many women, I didn’t believe removing the healthy breast would make a difference in recurrence risk. It would have doubled the surgical risks, both for the mastectomy and the reconstruction. I am one year post DIEP reconstruction and 2.5 years post diagnosis. I have no regrets with my decisions.

Good luck

jessie123

Rcunrcrg -- thanks, that's what I have started doing. I will see my surgeon on Friday to discuss her recommendations. I really want a lumpectomy, but worried about radiation so today I called the radiation oncologist that treated my husband 17 yrs ago. He never forgot my husbands case because it was so awful. He totally reassured me about the radiation dangers and also recommended a good Oncologist at the teaching hospital where my surgeon is. He even said that there is talk of not requiring radiation after lumpectomy for stage 1 women 70 and over. I turned 70 the day after Christmas. He wants me to call him after the lumpectomy or mastectomy tissue exams. I do feel now that I have an Oncologist whom I know who will help guide me. He acted like the MRI is not that necessary which is kind of the same reaction my surgeon had. If we could only have been born 50 yrs from now they'd probably already have a simple pill for breast cancer --- then no hard decisions for us.

Arya44

My situation was like tdat-had 3 cm tumour on left and days before surgery surgical oncologist reaxamined original mammogram and found something suspicious on right side so ordered new ultrasound/biopsy/mammogram which they were unable to determine if cancerous even up til day before surgery so decided to go for double rather than cancel surgery and wait what would have been a month to reschedule while we find out more. After surgery was told the cancer was in fact bilateral so now feeling even more vindicated by the decision for bmx.

Although oncology surgeon says the recurrence and survival rate are no different either way it seems logical emotionally that there is zero chance it will recur in a breast that has been removed. I know I won't be going through this again at least for breast recurrence.

Also my understanding is that it;s unlikely I will need radiation-which is possibly a daily treatment for many months- and may avoid chemo if not in lymph nodes ( still waiting for results), and will not have the anxiety of follow up mammograms on a regular basis for years to come.

It's an emotional decision and if 'fingers crossed' not in lymph nodes -its also in my opinion much more convenient not to have to go through rads etc.

Beesie

"it seems logical emotionally that there is zero chance it will recur in a breast that has been removed"

Unfortunately that is not true. The odds of a localized (in the breast area) recurrence are in most cases lower after a MX than after a lumpectomy + rads however after a MX some breast tissue always remains and there therefore remains at least a 1%-2% risk of recurrence. It's simply impossible for the surgeon to remove every scraping of breast tissue up again the chest wall, against the skin and on the edges around the breast. For those who have large tumors, close surgical margins, or nodal involvement, the risk of recurrence after a MX can be higher. Similarly, even after a BMX, any woman can develop a new primary breast cancer. Here again the risk is low, but it does happen.

This is not to scare you, but to inform you so that you remain vigilant and always continue to check for lumps or any changes or abnormalities in the breast area.

See this discussion thread: Recurrence after bilateral mastectomy https://community.breastcancer.org/forum/88/topics/727538

KBeee

It is a very personal decision and there is no "right or wrong" answer...just what's right for YOU. For me, my reasons were:

Cancer runs all over my family...mom had it, aunt had it, cousin had it, etc. I had it 10 years younger than my mom. I wanted to reduce my risk of a recurrence. My mom was only offered unilateral mastectomy years ago, and did have a new primary on the other side 20 years later (after my diagnosis).

I hated my breasts. They were tiny (barely an A) and deflated from breastfeeding 3 kids. Picture 2 pancakes pinned on a skinny chest and you picture my chest. If they took the lump, they were taking the whole thing. They do not make pancake implants, so unless I wanted to go flat (which is a great option for many...but not what I wanted) they would have to use implants on both side. I did not want breast tissue and an implant on the other side because the implant and scar tissue could potentially obscure a tumor on imaging.

BMX does not guarantee that you won't have a local recurrence. As you can see, I had one. I was however vigilant and did self exams, so when I found a lump, I insisted on its removal.

There is no regular imaging after BMX. Though some people are glad not to have to go for imaging, not having imaging can be stressful too.

Just trying to give you info to help in your decision making. Again, it's what's best for YOU. Best wishes!

jessie123

Since I started this thread when I was in such distress making my decision I should let you know how it turned out. I was first going to have a BMX -- then changed it to just one breast removal. Then I learned that a lumpectomy has the same long term prognosis as a BMX --- so that made the decision even harder. I knew that a lumpectomy was safer surgery with a much shorter recuperation. Those two things still didn't completely convince me. I knew that I didn't want to lose my breast as I've had them all my life -- I thought the transition to no breast would be mentally hard and constantly remind me of my cancer. My decision took me almost 3 months --- then a member of this board said "start small and go big later if you have to" That made perfect sense to me. Had my lumpectomy 2/21/19 --- I was home by 11:30 that morning -- had zero pain - my incision was large -- they took out about 31/2 inches by 41/2 inches of breast tissue. I will be highly monitored for the rest of my life so if it returns it will be found early. If that happens I'll have the MX and the decision will be easy. I don't think that I will be as scared if it happens again.

Runrcrb

Jessie123 - congratulations on making the decision and thank you for letting us know the outcome. I'm always curious when members pose such questions what they ultimately decide. All the best.

Arya44

Beesie,

Thanks for the information, now I'm a little more informed about it being more than a 'zero chance' or recurrence. It's always good to be armed with more information. I was certainly surprised when I read the threads of the rare people who've had recurrence.

Lindzfay

I chose my smx because my area of DCIS was so large a lumpectomy would have taken a lot of my breast. I did the other side when I found out I had a chek2 gene mutation. I’m a worrier and having them both gone is a big relief for me. I also like that because I went this route I didn’t need radiation or tamoxifen. It’s such a personal decision and everyone has good reasons either way. I went with my gut

Margot62

so glad you made a decision that felt right to you! I’m still in the process of figuring it out.

Are you going to have radiation? If so, how do you feel about it?

Hugs to you

Margot62

did you have radiation

jessie123

Margot62 -- yes, I'm having the hypofractionated radiation (is that what it's called/) that lasts 3 weeks and then 5 days of boosts. A couple of my friends who had a lumpectomy and radiation have told me that it was easy. I was simulated today and that part was also easy. The only bad part with a lumpectomy is the constant monitoring which will be a reminder. I think that I will have imagine testing every 6 months for the rest of my life. But I still have my breasts and I didn't want to give them up and also didn't want to go through the major BMX surgery. It's a horrible decision to have to make. Good luck and let us know what you decide.