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Topic: What made you decide on a mastectomy?

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Sep 24, 2021 09:30AM

TazMom wrote:

Hello All,

I was recently diagnosed with IDC grade 1 (3.2cm) in the left breast and atypical ductal hyperplasia (2.6cm) in the right breast (ER+/PR+/Her2-). I've seen 1 oncologist who basically told me that if I have a lumpectomy then I will have radiation and if I have a mastectomy I won't. Either way I will have 5 years of hormone therapy. I have an appt for a 2nd opinion on 10/4/21. I had a breast MRI and according to the surgeon yesterday, the results show that there does not appear to be any other spots in either breast or the lymph nodes. The surgeon's opinion was to do the lumpectomy because she didn't see the need to have a mastectomy. The idea I guess being that you can always take more, but you can't put it back. She said though it was very common, especially in younger women (I'm 45), that they opt for a mastectomy due largely to the anxiety of it returning. Well, I would be in that category too. So now all the tests have been done and I'm left with making a decision, one that I didn't think would be so hard. My first reaction to the diagnosis was to just take them. Now, I don't know anymore. Depending on when I make my decision on surgery type, I could have the surgery within the next 2-3 weeks. I'm really struggling with this. I know many women that have had lumpectomies, but I don't know any that have had a mastectomy (let alone double) that can help give me any insight. So I pose this question to all of you that have had a single or double, what made you chose that? Was it anxiety based or did it have something to do with they type of cancer you had? Everyone has told me it has to be my decision and I get that, but it might help to understand what drove other women's decisions.

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Sep 24, 2021 12:13PM - edited Sep 24, 2021 12:34PM by Messenger77

I had decided when I was in my early 20's that if I ever got breast cancer I would do a double mastectomy. This was due to my mother and her mother having breast cancer (no genetic correlation whatsoever). In 2018 I was diagnosed with extensive DCIS and a HER2+ tumor (3mm) all in left breast. I did that plus Herceptin and chemo. I was thinking that the removal of both breasts and the treatments would lower my risk for recurrence substantially, as did the doctors. My risk of recurrence was 1-5% (I did not have reconstruction).

However, just a few short months ago I found a lump on the left side chest wall and sure enough the cancer had come back. I guess I'm that low percentage that has a recurrence even after “doing all I could". Honestly it's just a role of the dice with cancer. I still would have done the same thing.

Best wishes on your journey! Keep us posted

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Sep 24, 2021 12:38PM LivinLife wrote:

I had to have a mastectomy b/c I'm postmenopausal and could not have radiation due to having scleroderma. I had Grade 3 DCIS with comedo necrosis - initially a 6 cm area. They expected to find invasion though did not find any. I had decided prior to meeting with my 2nd opinion surgeon I wanted a BMX. I have healing issues so didn't want to undergo any reconstruction and didn't want any additional surgeries if I could help it.... I already had several call backs on my right breast and two biopsies - all benign. This was my left breast. I realize there are no guarantees though it was the right decision for me. I go flat and have never had any regrets. I was also large breasted so it really has been freeing - everything is easier..... It is truly a personal decision - you have to do what you are comfortable with - what feels right to you... at the same time reading other people's stories helped me decide.....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 24, 2021 01:12PM TazMom wrote:

Wow Messenger! All that and it still came back. That's one of my biggest fears is that it'll come back in either breast (if I opt for lumpectomy) or in the chest wall (if mastectomy), or anywhere else in my body regardless of surgery type. I think choosing to do a double is fueled by my anxiety and fear of that possible recurrence. Like you said though, there's no guarantees and it could still come back no matter what you throw at it. I don't have any family history of cancer, so I was blindsided by the whole thing.

I agree with you LivinLife, I too want to just have one surgery. I don't want to go back and remove more if they didn't get it all, or have another surgery if it comes back. I have been reading other people's stories and noting their individual diagnosis. I have no idea of my stage (and won't until after surgery), but my grade is low which leads me to believe that my chances of it spreading is minimal. I've noticed a lot of people with grade 2 and 3 or Her2+ that have had to deal with recurrences but not many in the grade 1 category. I'm not especially large breasted (about 42/44D), but I think that is in part due to my weight since I am overweight.

My supervisor was not given the option of mastectomy and she is larger breasted. In a way I wish they didn't give me the option since it's made this whole situation/experience that much harder. My breast tissue is also considered extremely dense, so my other fear is that it does come back in the remaining tissue and they won't be able to see it.

So, I guess another question to ask those of you who have had mastectomies is, "How do they monitor for recurrence if they can't do a regular mammogram?"

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Sep 24, 2021 02:23PM DaughterOfBarb wrote:

I was diagnosed earlier this at age 46. 1cm right breast only and I opted for double nipple sparing mastectomy. I’m currently in the expansion phase of implant reconstruction, with exchange surgery scheduled for November. I come from a long line of all types of cancer patients on both sides, including BC (mother and both grandmothers). My genetic testing came back negative, but I believe that is simply a matter of science not yet having discovered the gene. Though I always assumed I’d be diagnosed with BC, I held onto a silent hope that I was wrong so it was still a tremendous punch in the gut. Lumpectomy was an option, but I didn’t want radiation or the constant follow ups, biopsies, etc. I also had dense breasts and my BC is lobular, making it more difficult to find with mammograms. Despite all that, it was not an easy decision and the process has been very emotionally taxing. Moreso that’s physically. I often wonder how difficult a decision it must be for those with genetic mutations who are considering prophylactic mastectomy. Such courage those women have. I figure if they have the balls to do it, so do I. Although the risk of chest wall or other recurrence isn’t zero, it is much less than with lumpectomy and when I finally decided on double mastectomy, it brought such peace. It hasn’t been easy, but I have no regrets. That said, there is no right or wrong answer. It’s such a personal journey. Best of luck with your decision.

Kaycee (a/k/a DaughterOfBarb) - Dx at 46, Oncotype Score 7 Dx 5/24/2021, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2021 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 11/16/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 24, 2021 03:18PM Spookiesmom wrote:

I told my surgeon from the start they both had to go. No second opinion. I didn’t know stage or grade. Wasn’t going to do this again. He did. No recon either.

4 years on AI. 7 years later I found a pea size lump on the other side in axilla. Yep. It was back. More surgery and rads.

Now I’m looking at possibility of bone mets.

After bmx, no more mammogram. Nothing to squeeze. A plus!! It’s a crap shoot if it will come back. Some are fortunate it didn’t. I seem to be a magnet. I’ve even had several skin cancers taken out.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Sep 24, 2021 04:09PM TazMom wrote:

DaughterOfBarb, my first oncologist told me there was no indication or that it wasn't necessary to do any genetic testing at this time (even though I don't know anything about my father's history). I was a little frustrated with that response. If that's the case, at least explain why, not just that you see no reason to. That's one of the reasons I asked for the 2nd opinion. The fact that there are questions that cannot be answered until after surgery makes this decision harder. Perhaps if I knew chances of recurrence, I might choose one over the other. Like you, I'm not keen on the idea of radiation especially since it's the left side. I also don't look forward to mammos every 6 months, wondering if they're going to find something new and subject myself to more biopsies and then waiting weeks for the results, going through all the multiple doctors appointments, and the list goes on and on. So in that respect the mastectomy is a very appealing option.

Spookiesmom, I'm so sorry to hear it's come back. It's been my fear and I too feel like, "Just get rid of them!" The idea of it coming back in the chest wall or the axilla is a scary prospect and not one that can be anticipated or prevented. Were they doing regular ultrasounds or imaging of any kind on either side to monitor if it came back or did you discover it yourself by touch?

I took for granted the fact that there was no family history, so like an ignorant fool I never did self exams and waited 5 years longer than the doctor's recommended to have my first mammogram. The fact I found this one was a total fluke, maybe divine intervention? While I realize every experience is different and I don't have it nearly as bad as others here (and I do not mean to diminish the hell that every lady here has gone through with this disease), the last 2 months have been hell for me. I'm a fairly positive person, usually upbeat, good spirits, etc. I have been nothing like my normal self, my nerves and anxiety have been through the roof, and I've said on more than one occasion that my family needs to have me committed. I hate this feeling, and I don't want to feel it anymore or ever again. Just when I think I've figured out what I want to do, there's something else that throws a monkey wrench into the works and makes me question it all over again.

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Sep 24, 2021 04:31PM Beesie wrote:

Read here:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX https://community.breastcancer.org/forum/91/topics...


And here:

Lumpectomy vs Mastectomy: How to Choose http://www.melbournebreastcancersurgery.com.au/lum...

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Sep 24, 2021 04:42PM Spookiesmom wrote:

No scans, u/s or anything after the first time. I still have my port, so was seeing MO regularly. The second time I found the lump myself.

This time, the bone spot was seen on mri for a different problem.

The first time rads was on the left side. RO assured me the beam would be stopped before it got to my heart. I have zero heart issues from.rads

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Sep 25, 2021 01:15AM WC3 wrote:

TazMom:

I posted my reasons for choosing a bilateral mastectomy in another forum but I will repost it here even though I've had reconstruction.

I chose the bilateral mastectomy for a few reasons. My cancer was initially missed. I had very dense breasts and there is a history of bilateral breast cancer in my family so I was afraid of the possibility of developing cancer in my other breast and it being missed during the curative treatment window.

By the time my cancer was diagnosed, the tumor was large enough in comparison to the size of my breast that a lumpectomy would have removed a large percentage of my breast tissue and due to the shape of my breasts, symmetry achieving reconstruction would have been possibly more involved than a bilateral mastectomy. Also, if I had a lumpectomy I would have needed radiation, which was non ideal for me because my skin is thin and fragile in that region and I think I've had enough radiation for a while.

I'll also add that like Messenger77, due to the history of breast cancer in my family, I had acknowledged from a young age that I may someday lose my breasts and had already processed that.

I am three years out and have no regrets yet about my decision. My surgery went well and I'm happy with the outcome of my reconstruction so far. However my surgeons have told me I was a very challenging case. I had a skin sparing mastectomy but because my skin is so thin there was a real possibility of skin necrosis. Thankfully that did not happen but I was prepared to go flat if reconstruction failed.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 25, 2021 10:34AM JanetM wrote:

I decided on a BMX after being diagnosed with DCIS last October. I had previously been diagnosed with LCIS in the same breast 10 years ago and had a lumpectomy so that breast was already somewhat deformed. Since the DCIS was in that same breast it was easier to do the mastectomy on that side as opposed to another lumpectomy and radiation on that side as recommended by my surgeon. The other breast also showed some atypical cells during an MRI guided biopsy. So that sealed the decision for me. I was 65 when I had my BMX last November and in pretty good health and figured it would be easier to recover from BMX and DIEP reconstruction then rather than later. The DIEP reconstruction failed during surgery so I ended up the expanders. I finally just had my exchange surgery yesterday so hopefully this chapter will soon be over

DCIS 10/2020 Bilateral Mastectomy Lumpectomy 5/24/11 - LCIS, ALH and ADH and SAH/BSO - 8/10/11 Dx 5/25/2011, LCIS, Left, 0/0 nodes
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Sep 25, 2021 11:49AM Serendipity09 wrote:

Beesie provided some good links to help guide you, but ultimately, and obviously, the decision is yours. It's not an easy decision to make.

From the moment I was dx'd, deep down I was opting for a BMX, but was questioning that decision right before I had it done. I was 46 with very dense breasts. A mammogram not 8 weeks prior, didn't catch the lump. I have no family history. I knew my anxiety would've been out the roof every time I felt a bump/lump, not to mention having to play the waiting game for results from the mammogram every 6 months.

I was told if had I had a lumpectomy I'd have to do rads. BMX and immediate reconstruction with TE's was done in Sep 2020, during surgery it was determined that it had spread to my lymph nodes (luckily just 1), rads had been put back on the table. After another visit with my RO and a 2nd opinion, it was determined rads was not necessary. I had expanders in for 10 months. Had my exchange to implants this past July and was dx'd with a recurrence four days later from a. biopsy done on a "blemish". I'm currently doing 25 days of rads. I have no regrets about doing the BMX; I don't know if the lumpectomy/rads originally would have changed my outcome.

I hope you find peace in whatever procedure you choose to have and that all goes well for you!


Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 25, 2021 12:37PM SuQu31 wrote:

TazMom,

I'm sorry you are here, but as you can see, you have a lot of company. I was diagnosed with DCIS in my left breast, grade 3, comedo necrosis, ER-/PR-. MRI showed possible lymph node involvement as well as possibly something else in the left breast. My surgeon recommended mastectomy and left the decision about the right breast to me. The surgeon I saw for a second opinion recommended lumpectomy at first, but after seeing my MRI, also recommended mastectomy. The first surgeon I saw (who did my surgery) said that with ER-/PR-, there aren't as many tools in the toolbox if there is a recurrence.

I followed the recommendations and elected to have both breasts removed with immediate reconstruction. There was no lymph node involvement. I do not recall anyone telling me that there was a possibility they could remove my entire breast for a relatively small area of DCIS and still not have good margins. (If I had done more reading, I would have discovered this myself, so I'm not blaming anyone). I had a close margin near the skin, and elected to have a re-excision rather than radiation. My reconstruction went very well and I am quite pleased with the way it looks.

Because of my close margin, I am having annual mammograms for five years. We are hopeful that if there is a recurrence, we will be able to catch it earlier this way. My understanding is that because of my ER-/PR- status, a recurrence, if it happens, is most likely within that time frame. Although most people with mastectomies do not have mammograms, there is no reason why they can't. At my last mammogram, the surgeon noticed something she is watching and I will have a four-month follow-up.

The only thing I might do differently is consider radiation rather than re-excision for the close margin. I did not want radiation and although I think that the slight healing issues I had on the re-excised breast would have been exacerbated by radiation, I think radiation may have given me more protection from recurrence.


Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Sep 25, 2021 06:13PM Cancersux2021 wrote:

SuQu31

Hi I have a question did you do chemo? Or just surgery and reconstruction! Cause if you do a Bmx and no node involvement. I appreciate your input.

Thank you

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Sep 25, 2021 08:16PM SuQu31 wrote:

Cancersux2021, I did not have chemo. I had DCIS only. It is my understanding that chemo is only required for invasive cancers and not all of those, but I am certainly no expert.

Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Sep 29, 2021 11:23PM Rrobin0200 wrote:

diagnosis was on the left side…obviously near my heart… and I did not want radiation anywhere near there.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 30, 2021 03:05PM TazMom wrote:

Rrobin0200, I feel the same way. The lump is in my left breast, but it's closer to my armpit and not my heart. I had the same concern and asked the first oncologist I met with about that. He told me that with modern technology, it's targeted more and there are ways to avoid the heart. Did they say the same thing to you? Or like me, did you decide you didn't want to take the chance regardless? The only thing that worries me is that I decide on the BMX and the sentinel biopsy shows it spread and they'll have to do radiation anyway. I see the second opinion oncologist on Monday.

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Oct 4, 2021 06:26PM Janewhite wrote:

I had a substantial area of DCIS on my left side and initially tried lumpectomy with bilateral reduction and lift, and the procedure went OK. However, pathology revealed that there was a second area, quite small, that the scans had missed due to my dense breasts, and in the process of making a nice neat smaller breast, the plastic surgeon cut it in half. (That's a pretty unusual problem, but it is possible.) At that point, immediate mastectomy was the only safe option. The doctor offered reconstruction, but I chose to go flat due to faster recovery time. Right now, I'm happy with my choice.

Dx 6/2021, DCIS, Left, Stage 0, ER+/PR+ Surgery 8/5/2021 Lumpectomy: Left Surgery 8/24/2021 Mastectomy: Left Hormonal Therapy
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Oct 8, 2021 05:00PM julesAI wrote:

Tazmom: My diagnosis was Infiltrating Ductal Carcinoma (IDC) - Right, 3cm, Stage IIA, ER+/PR+, HER2-.

I choose a mastectomy because it sounded like the most complete option to get the cancer out. Was glad I did because it turned out the tumor was slightly larger than they thought once they got in. But clean margins and all that good stuff. I was able to through the surgery without additional chemo or radiation.

At the same time, everything happened so fast, I didn't know that going flat was an option and so didn't pursue that. I knew from the beginning I wasn't going to do reconstruction, so going flat would have been a sensible option for me.

Dx 3/17/2017, IDC, Right, 3cm, Stage IIA, ER+/PR+, HER2- (FISH) Surgery 3/28/2017 Mastectomy Hormonal Therapy 4/17/2017 Femara (letrozole)
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Oct 15, 2021 07:27PM GalleySlave wrote:

TazMom: I feel like we are in the same boat. I too took breast cancer for granted since there was no history in my family; I also have “dense” breasts and delayed mammograms. I’m also an overweight 44D. And I too keep making decisions only to rethink them after each new bit of info. It’s hard to stay optimistic when you keep finding out that you were wrong every time you say “Oh, I’m sure it’s nothing.”

I went to 3 Breast Surgeons hoping one of them would say that a Lumpectomy was an option. All 3 agreed that a Mastectomy is the best and most practical therapy. But now, doc#3 found something in the right breast too. I am still waiting on that biopsy, but even if it comes back benign, do I really want to do this again? It's hard to feel like you are making the right decision when you don't have all the information—- like is there node involvement?; has it started to spread to other parts of my body already?; will I have side effects from the hormone therapy?; will the tumor pathology dictate chemo?

I am 59 and I do not want to spend whatever time that I have have left on this earth dealing with cancer. I realize that is naive because I will forever be a cancer patient or a cancer survivor, right? But still, I am seriously considering a BMX now if only to minimize my risk of having to deal with this again. (Plus, If I do opt for the double mastectomy, maybe I’ll end up with a couple of perfect perky B or C-cups!

Dx 8/24/2021, IDC, Left, 6cm+, Stage IA, ER+/PR+, HER2- (IHC)
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22 hours ago MEandJax wrote:

GalleySlave so sorry to hear that, I too took it for granted since I don't have it in my immediate family. I have had two other cancers, but this is a new one. I was at 4.8cm once the surgery was done; (prior ulta and mammo results said 3cm or 4cm) fortunately it was lumpectomy. I have decided not to worry about the 'next' issue in my life, since we can't control any of them; and that Fighting Cancer is my SuperPower.

My oncotype test came back on the higher side so along with my age (61), size of my tumor (4.8cm), past history of other cancers, and who knows what else; my oncologist has me on Chemotherapy before the radiation. This is a long, bumpy, road with potholes; but I know I will come out of it okay. Nobody is guaranteed tomorrow so I am just going to keep going.

Best wishes for your complete recovery whatever you decide to do.

Dx 7/2/2021, IDC, Left, 4cm, Stage IIB, Grade 2, 0/3 nodes, ER+/PR-, HER2- (IHC)

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