Lumpectomy vs Mastectomy - can't decide

Hello,
I was diagnosed with triple neg bc last September and completed my last EC chemo 10 days ago. It’s been one hell of a ride with numerous complications including neutropenic sepsis and having developed both Type 1 diabetes and Adrenal gland insufficiency from the two Immunotherapy treatments I had last Oct/Nov (it was stopped after the second dose)
I had an ultra sound in Jan and MRI in March, both coming back negative for any tumour and was told there was complete resolution of the tumour.
I’ve now got surgery ahead before radiotherapy.
Originally at diagnosis I just wanted my breast off and to get rid of it and the cancer.
Now I’m done with chemo, I’ve been given a choice of lumpectomy or mastectomy. And I honestly don’t know which to go for.

I never expected to have a choice. I assumed that that decision would be taken away from me. But now I have a choice, I am so lost as to what to do.

My heart says lumpectomy as, in all honesty I don’t want to loose my breast, more so my nipple. But my heads saying to do the sensible thing and have a mastectomy. Lower risk of recurrence, less trauma if they don’t get it all out and have to go back in, and I’m only a 34A anyway so I’m not loosing much. But my crazy head is really struggling with loosing my nipple. And I just can’t make the choice. I don’t want reconstruction as there isn’t enough fat/muscle on me to do it naturally, and I don’t want anything fake put into my body, so I would end up flat.

So my question is to those of you that were offered the choice … how did you decide and what brought you to this decision?

It’s ridiculous but I just can’t get my head around it.
I know I’m the only one that can make the choice for my body, and I want to make the best informed choice I can to give me the best chance for the future, but I’m struggling so badly mentally with it and just don’t know which way to go.

Thank you in advance for your answers :blush:

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Hi ktmamma62

I understand the mental turmoil you must be feeling. It’s so much harder when you are given a choice and have to make a decision.

My diagnosis was very different to yours - 30mm high grade DCIS and I had two different surgical opinions. In the end I chose mastectomy over lumpectomy for a number of reasons. Firstly with my particular DCIS, I was told that the likelyhood of reoccurrence was high and possibly further surgery may be required in future and I didn’t want the anxiety of living with this quite likely outcome … I also did lots of research and found that mastectomy is not nearly as drastic as we tend to think - I did chose for reconstruction surgery with an implant but my surgeon used a polyurethane implant which he deemed the safest and he has written many publications on breast surgery and I trusted him. It’s given me a natural look and everything was completed in one surgery. I also was keen to avoid radiotherapy with I would have needed with lumpectomy.
Like you, I struggled with the thought of losing a nipple - I had a skin sparing mastectomy and breast tissue was taken through the nipple. This was done in June last year and I’m due to have my nipple tattoo next month - very exciting!!
It’s all a big change but you’ve been through so much already, this may help to bring you some closure in a way (as best as possible)
Good luck with your decision, as you say, only you can make this call but you’ll know you made the right one …
Sending good wishes to you!

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My dear Ktmamma 62

So so sorry to read your post what a lot you have been through.

What a big decision for you to make, I have had a mastectomy and a lumpectomy, my lumpectomy was much easier to deal with, the recovery time is a lot quicker as you have already been through so much, maybe the easier option would be better for you (Only my opinion)

I do wish you well going forward fingers crossed for a good outcome, also the breast cancer nurses on this site are very caring and understanding this would also give you another opinion maybe give them a call

With the biggest hugs Tili :rainbow::pray::rainbow::pray:

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Hi ktmamma62

Tough decision I had 2 lumpectomies but couldn’t get clear margins so had mastectomy with skin sparring and implant unfortunately had problems with implant had to have it removed I am flat one side have got used to it now if I had the choice I would have lumpectomy but saying that recovery from mx wasn’t to bad pain wise or recovery , speak to your team about all the options sometimes they can spare your nipple good luck take care xx

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Hi,

I had a mastectomy back in October 23. I didn’t have a choice as I had 3 tumours but there was a time when I only had 2 and they were considering 2 lumpectomies vs mastectomy so I understand a bit about how you feel!

That being said, if there was a way I could have had a lumpectomy I would have had that (I was told that a lumpectomy + whole breast radiotherapy had same results as mastectomy in terms of recurrence).

My mastectomy recovery hasn’t been too bad in the grand scheme of things, but I have been left with a fair bit of scar tissue which is effecting the mobility in my shoulder. Admittedly this was complicated by also needing a lymph node dissection after a positive sentinel node biopsy.

I have been seeing the physio though who’s doing a great job at releasing it all and now i’m nearly back to full mobility.

Cosmetically the surgeon did a good job (I also didn’t have any reconstruction), and I adjusted quite quickly to the loss of my breast. The only thing that continues to annoy me is always needing a bra/difficulty finding clothes I can wear without a bra and things like mastectomy swimwear!

I hope this helps :slight_smile:

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Hi @hippohippo
Regarding swimwear after mastectomy I found Asda do a good range at a reasonable price , I also got some aqua swim prosthesis from knitted knockers which are free it’s a lovely charity for women who have had lumpectomy’s / mastectomy’s , I have got used to being flat but sometimes I struggle as you say getting right bras x

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Thanks for the tips! :slight_smile:

Amoena do swimwear and summer tops as well as bras, breast forms etc. You can order online or if you live near Eastleigh Hampshire you can visit their shop. They do pre bookable afternoon appointments if you want measuring for size. Big hugs to all you lovely ladies.

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Hi @ktmamma62

So sorry to read that you are having this difficult decision.

I have been through this a few times now, I had a lumpectomy in 2020 which successfully treated a large area of DCIS, my decision was based on really wanting to preserve my breast if possible as I felt it would be a better outcome for my mental health at the time. This proved to be the correct decision for me and i was perfectly happy with my wonky boob.

Unfortunately my 2023 annual mammogram picked up a small area of DCIS in my other breast, tge treated breast was still clear. I opted for another lumpectomy based on my previous experience, this time it was unsuccessful so I opted for a re-excision still being very keen to preserve my breast. The re-excision wasn’t successful as a new area of DCIS was identified, this time i was advised that a mastectomy would be the best option but they were willing to try a 3rd excision. I decided to opt for a mastectomy with a DIEP reconstruction, the reasoning being the pathology of the re-excision was a new area of DCIS that wasn’t picked up on the mammogram, my surgeon and the multi disciplinary team weren’t confident in getting all of the cancer or how good the outcome would be. I did ask about MRI scans or further tests which they were willing to do but it would have involved another 6 week delay, plus the likelihood of a further biopsy leading to the same result,
so I decided not to pusue this option.

I had further dilemmas and decisions ending up with me have a bilateral mastectomy and DIEP reconstruction 3 weeks ago. I would say there is no wrong decision, I have had 3 surgeries this year the last one being 10hours but I don’t regret any of my decisions.

Make sure it is right for you, I would say a lumpectomy is much less traumatic mentally and physically, so i am pleased i did take the opportunity to try and save my breasts even if it didn’t work out. Equally I am now happy having had a mastectomy and knowing the cancer and risk are gone, but I am looking forward to getting some nipples again :wink:

I hope this lengthy post helps you a little bit with your decision, all the best with your decision xx

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I had to make that decision after 2 failed excisions. After much research, a pros and cons list and lots of thought I decided to go for the mastectomy which I had 4 weeks ago. I began my journey in July 23 and I couldn’t bear the thought of undergoing another failed excision, waiting for further surgery and the results. I did, however, have to consider how I would feel following mastectomy if they could have cleared the margins.

I got my results yesterday and it turns out that they would never have been able to get clear margins. They have now cleared a total of 70mm of mainly invasive cancer, (having an original estimated size of 9mm) no chemo needed, radiotherapy unlikely but oncologist may change that as a precaution due to the size. Probably just letrozole for 10 years.

We are all different but I thought that a positive story of opting for mastectomy might help. I am really struggling with my new body image, reconstruction wasn’t an option, and confidence but the important thing is that I am cancer free.

Good luck whatever you decide. It’s one of the most difficult decisions I have ever had to make. x

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