Lumpectomy or Mastectomy, why did you make the choice you did?

clw1

I was diagnosed about a month ago with invasive ductal carcinoma, small and stage 1, estrogen and progesterone positive. I have had test after test as I am only 40 so they want to be sure on everything before a surgery. There is a pretty large chance that I will show genetic issues as every woman in my mother's family has either survived or died from cancer other than her (and she has other issues). But you never know, nothing may show up. Depending on the results from both that and another test on a possible second spot, if all shows OK I will be left with deciding between a lumpectomy and radiation or a mastectomy and reconstruction. As I was told that if it comes back and I had previously chosen lumpectomy and radiation I would no longer be able to choose implant reconstruction, that makes me wonder what to choose. I can hope that nothing comes back, but I am fairly healthy and active yet got diagnosed at 40, so something must have caused it and made me more likely to get cancer. I was wondering what others in this situation chose between the two options and why they chose that? Trying to gain some perspective while waiting for more rounds of test results.

Bengal

I chose lumpectomy because I thought I was taking the easiest way out. (emphasis-"thought"). The first doctor I spoke with was the surgeon. He said my tumor was tiny ("barely there"!) and he would pop that thing out of there, I might need a little radiation and I'd be done with it. He said as far as survival rates there was little difference statistically for lumpectomy vs mastectomy so why subject myself to a major surgery when a minor one would do the job. I chose lumpectomy. After the surgery the first word out of the oncologist's mouth was chemo; a year of chemo! I was flabbergasted. She explained that upon examination post surgery my tumor was larger than originally thought, putting me over the line and she strongly recommended the full chemo regimen, plus radiation, over a year of treatment. I have since had two additional surgeries on the affected breast. One to remove a benign cyst. The other after a needle aspiration to remove considerable fluid buildup came back from the lab "questionable" so I had a surgical biopsy that turned into a rather extensive lumpectomy. Would all this have been necessary if I had just had a mastectomy to begin with?

When I questioned my choice, my surgeon, in whom I have great confidence, told me, in his opinion, if you've had a mastectomy and the cancer decides to come back where does it grow if you have no breast? Possibly your chest wall or elsewhere where it is much harder to arrest. I had never heard that before and it really made me stop and think.

As for reconstruction, IF I had had a mastectomy I would never opt for reconstruction. Enough pain and suffering without adding to it. Good riddance! I know many women do not feel that way but it's my opinion.

I think you should continue to consult with your doctors, do your own research and try to come to a decision which best suits you.

ChicagoSandy

As I had a small IDC tumor in a large breast, I chose lumpectomy, which necessitates radiation. I had no family history of breast or reproductive cancers. Perhaps I did this bass-ackwards as my oncologist (whom I first saw post-surgery) was the first to ask about my ancestry. When I told her “Ashkenazi Jewish” she immediately scheduled me for genetic counseling, which led to testing.

Fortunately, I tested mutation-negative. Had I tested positive I’d have gone for a bilateral mastectomy, without hesitation. The radiation I chose—16 high-dose treatments to the tumor bed—makes it possible to radiate again if there’s a same-breast recurrence. It’s not true that irradiated breasts can’t be reconstructed—only that they can’t have implants. “Flap” reconstruction
using one’s healthy tissue from elsewhere on the body is possible.

And chemo has nothing to do with the choice of surgery, but with the stage, grade and lymph node involvement. Chemo is a systemic therapy—it’s used to kill any stray cells that may have escaped into the body before they settle into distant sites as metastasis. My OncotypeDX score (using those factors) was low enough to make chemo unnecessary (and probably ineffective) for me.

Sometimes, though, a larger tumor will, instead of surgery, first be given “neoadjuvant” chemo to not only shrink it enough to remove by lumpectomy but also to see if chemo (and that particular protocol) would work to produce a “pathological complete response.”

PaulineJ

I guest ther surgeon/doctors decide for me and kept me in the dark about making choices all my life.I had surgery twice in a month on lumpectomy and lympnoyds.

Dawsonsmom

The decided on bilateral mastectomy because I have the BRCA1 mutation and recurrence risk is 85% for both breasts. Seemed like a no brainer to me and was highly recommended by my team. No regrets.

junie1

In 1994, I was DX with Stage 1 breast cancer, I was 44yrs old. At that time there was no testing for BRCA, and my surgeon did a lumpectomy. I did chemo and radiation.. All went well,, In 2014 I went to the doctor for annual check up, and my GYN noticed my left breast looked a little odd, Which I had started to notice also,, and was going to ask her about it. She referred e to a Breast Surgeon, and he ordered another mamo,, ( I had one a month before going to the GYN)), Nothing showed up in either breast. Thank goodness my surgeon was proactive,, and ordered an Ultra Sound and MRI..Ultra Sound showed something in left breast. but couldn't actually get a good definition of what it was. The MRI defined it clearly,,. a tumor was hiding behind the lumpectomy scar.. So when I went back to the surgeon to discuss surgery,, I told him, that if he had to take the left breast off,, he was going to remove the right one also. I was 64 yrs old in 2014,, and decided that if it came back ,, I was going to have both removed,, and we did, The day of surgery, the doctor injected the dye into the right breast,, just because nothing was showing up there, but he wanted to be sure. I"m sure glad I chose to have the right breast removed. Although the breast itself was untouched,, several of the lymph nodes on the right side showed positive signs of cancer!
I went from being dx with stage 2 breast cancer, to Stage 4 Breast cancer in a matter of minutes!!'
I had more chemo,,( not good ) and more radiation.
All was going good,, till 4 1/2 yrs, and the cancer came back ,, a lump in my neck showed up!
More chemo,, no radiation at this time,, but now im on Hercepton and Perjecta. Not sure for how long,, they said a year,, but it may be extened.
I have been tested for BRACA,, and I'm BRCA 1,, my 2 daughter's have been tested also,, One of them has BRACA,,, the other daughter has the PLBH kind
I don't mean to scare anyone, i'm just telling my story.
I have chosen not to do any reconstruction, and i'm ok with that,
Good Luck to all

tlalex

My cancer was stage 2b-and was later down graded to 1-I choose lumpectomy because i was told the outlook would be about the same, I wanted the possibility of avoiding chemo, less evasive easier recovery, and I just didn’t want to have to deal with lopsided ness, I wouldn’t have done reconstruction. The trade off was that I didn’t have to have chemo-very low oncotype score-but did have to have 6 weeks of radiation. I could have skipped both chemo and radiation If I’d had the mastectomy but i wouldn’t have known that for sure until after surgery and lab work-catch 22. Take time to think -if anxiety will let you-talk all options out with your drs so you completely understand them-and with significant other if that’s an option. Ultimately the choice is yours-you’ve got this!

msesq

I had 2 lumpectomies, the second to get clean margins. I am 6 years NED is April. I trusted my surgeon that the size and location of my tumor made a lumpectomy a good choice. The work she did was great very little scaring (radiation was worse on my breast than surgery). I'm happy with my decision. I spoke to my surgeon, oncologist and did my own research in medical journals and all agreed lumpectomy was the way to go.

Jesse0218

My surgeon said he'd like to do just the lumpectomy but after all the tests, etc, before surgery he said he really felt the mastectomy was the way I should go. So, I went with his recommendation. He knows more than I do.

MzKindra

I was diagnosed at 35 with DCIS in 2013. No history of cancer in my family and my identical twin sister doesn’t have it. The first doctor said do everything radical, but once I did my own research, I saw that mastectomy and chemo didn’t decrease my recurrence chances. We are young and the majority of research is done on post menopausal women. I was upgraded from DCIS to stage IIB after the biopsy, but I still opted for a lumpectomy. I had a second one in order to get clear margins, then had lymph nodes removed, then radiation. I’ll be 7 years NED in June 2020! Given your family history, you have more to think about, but I have dozens of BC Survivor friends who are older who have gone through reconstruction and would NOT repeat it. Some have had their implants removed because they started literally being poisoning by them. If you are considering lumpectomy because you want to conserve as much as your natural breast as possible, like I did, and then see what happens, I don’t see the harm in that. It is hard to make these decisions and deal with what we deal with, but I wish you well.

MidgeB

I chose mastectomy. I asked my doctor what he would want his wife to do and he didn’t even hesitate, mastectomy. Two weeks later it was done, he got it all and I didn’t have to have radiation or chemo. Three months later I had reconstruction on that side. Five months later I chose to have a second mastectomy with reconstruction surgery and I’m very happy with it! My reason was just one less thing to have to worry about. I have lynch disease which puts me at a higher risk for cancer so I see my oncologist several times a year for blood work.

legaljen1969

I elected to start my journey with a lumpectomy, as this seemed the least invasive way to go. I was told from Day 1 that it was my choice if I wanted to go ahead with a mastectomy. All of my care team is fairly conservative in treatment approach, preferring to try the least invasive approach first. With a lumpectomy there would have been radiation 5x/week for 6 weeks. I thought "Well that's better than chemo."
Within 5 days of my lumpectomy I found out the DCIS was much more widespread in my breast than anticipated. They thought they had gotten clean margins, but the pathology showed otherwise. I had already told my surgeon that if she got in there and she had to take my breast to get the margins, that was okay with me. She proceeded with lumpectomy. The results of the lumpectomy resulted in a good bit of disfigurement of my breast and there wasn't much more they could take without a significant disfigurement. I was advised to proceed with mastectomy as the areas of DCIS were so much more widespread than thought. Radiation was now off the table.
I had a lumpectomy and subsequent mastectomy in a little over a month. The PET scan and MRI in between showed no evidence of disease in my right breast. If there had been even a spot, I would have gone for bilateral mastectomy right then. They did the sentinel lymph node biopsy and sent tissue off for my Oncotype DX. No evidence of lymph node involvement and Oncotype score was very low. My oncologist said there was little to no benefit to chemo.
I know there is no certainty in this life, but if a future mammogram shows evidence of disease in my right breast and a biopsy deems it cancerous- It will be straight to mastectomy for me IF I am even given a choice. I don't even know how that works. Can you even try the least invasive thing if you already have a personal history.The anxiety and emotions with taking it step by step "Wait and see, " bad results from biopsy, bad pathology at lumpectomy- it was too much for me. I have complete trust in my surgeon and all of my care team now.
I agree with others who have said to take time and think if you can be rational and not let anxiety take you over. I did have plenty of time to think. My mammogram was in early November 2019. Biopsy was in early December. Due to big birthdays and holiday plans, we tabled all discussions until after the first of the year.
I am generally one to try the least invasive approach first to see if it works. Well, it didn't work out this time. Knowing what a train wreck I was, I do intend to go to mastectomy right off the bat if I have any trouble with my right breast.

legaljen1969

I don't know if everybody everywhere gets this book, but definitely everyone who is diagnosed with breast cancer where I am gets the Breast Cancer Treatment Handbook by Judy Kneece. I think it is very informative and helpful. It appears you can order it from Amazon. You may find that someone in your care team has it and would let you look through it if you don't already have it.
My radiation oncologist (when I first thought I was going to have a lumpectomy and radiation) gave me a lot of helpful information as well. You may well wind up with a library full of materials.

Here is my first and main piece of advice. EVERYONE has a different journey. Everyone has a different experience. Your breast cancer is YOUR breast cancer. It never hurts to ask questions and find a supportive community. However, sometimes with so many different experiences you get overwhelmed.
Read what you need to know about where you are right now. Look maybe a step ahead. Don't try to eat the whole elephant at once.