Decisions on surgery

KimF

Hello

Thank you for accepting me. I've just been diagnosed with ER+, PR+, HER2-. Absolutely devastated and am in shock. No signs, no symptoms, nothing on the breast on the mammogram - only 2 lymphs showed and were biopsied and confirmed, nothing on the breast MRI or PET, and only a slight shadow on the ultrasound.

I've started taking an AI, and am now trying to work out the surgery options. Oncologist and surgeon just want to do a lumpectomy and take out the lymph nodes, then chemo (depending on the tests) and radiation. They both said that the was no real difference in the outcomes between lumpectomy and mastectomy. I'm thinking that I want a double mastectomy to really reduce the chance of a reoccurrence in the future. I also don't think I'm going to have the mental strength to go through this again - I'm really struggling at the moment.

My questions are around how you made your decisions on the surgery options. Are there any resources that can help me - I've looked but just keep going down dark holes. Will a DMX really reduce the chances of the cancer returning? 

I'd be very grateful for any guidance, feedback or experience you have.

Thank you!

Cath62

Hi @KimF, I am sorry you find yourself in this situation. It is so overwhelming at the start and so hard emotionally. This is a great supportive community so it's good you have written in. 

I had ER and PR positive and Her2 negative, aggressive cells, grade 3 and high chance of return but caught early. I had discussions with my surgeon and he was very confident a lumpectomy was the way forward. That was 2020. I went with his advice and I am so very pleased I did. I had surgery, chemo and radium and now take AIs. 

The decision is entirely up to you. We are all different but I think for me, recovering has been great. I had my breast reshaped with my lumpectomy as I was very big breasted. I reduced my non cancer breast to match the other one so my breasts look pretty good although scars which I am proud of really.

For me while there is alot to deal with emotionally processing breast cancer  having breasts still has been a good thing too  I do get scan anxiety every year but I think I would get that anyway regardless for all the check ups. 

I am sure there will be some information on the bcna website about decision making but my advice would be to trust your medical team and their recommendations.

AllyJay

You really should discuss this fully with your medical team, but at the end of the day, you have to push for what feels right for you. I was diagnosed back in 2016 and a lot of statistics were presented to me, and the most mentioned was that if the existing cancer was to recur, it would either be a so called 'local recurrence', that is bits were left behind and started to grow again or remaining cells would have metastacised and spread to distant parts, most likely the bones, liver, lungs or brain...very rarely to the other breast. At that time, the statistics for breast cancer were 1 in 8 (which is 12.5%)...now it's 1 in 7 (which is 14.2%). I presented my case to my surgeon that according to the statistics, the chances of a brand new, totally unrelated to my present cancer, chances of cancer in the other breast was 12.5% which was too high for me and my mental health. I told her I understood fully what she had explained about spread from my known cancer, but that I was looking at my chances of developing a future breast cancer in the 'healthy' breast. Mine was also hormone positive and she was telling me that a 3-5% improvement of long term survival from taking hormone suppressants, (for ten years), was significant...and (quote)..."Every percentage point with cancer is significant". I turned her words back to her and said "So 3-5% is a high number in the cancer world to prevent it coming back, but 12.5% to prevent a new cancer is insignificant?...That makes no sense to me". She threw in the towel and agreed to remove both, and a good thing too, as the pathology on the removed 'healthy' breast showed numerous areas of cells which have a strong history of 'going bad'.

Afraser

@KimF

As you can see above, there’s no simple answer to your question. Many face the same dilemma, and make different choices. My surgeon recommended a mastectomy, which I had. A later discussion with my oncologist about the possibility of having the other breast removed elicited his opinion that cancer might as easily appear elsewhere in my body as my other breast. I’ve stayed with a single mastectomy  - I’m comfortable with that but the following may be worth thinking about.

Have you discussed your anxiety with anyone? It’s pretty natural at this stage but if your anxiety is particularly high, or you are prone to it, that’s worth taking into account.

Do you plan to have reconstruction? If so, what are your options and surgery implications? 

A lumpectomy now does not preclude further treatment when you have had more time to consider all your options and become more accustomed to your diagnosis. It’s always a shock, in spite of the stats, and making big decisions when you are in shock is rarely a good idea. Whatever you decide, it’s best to have no regrets.

Best wishes. 

Julez1958

Hi @KimF
This is a hard one and only you can decide , with the guidance of your medical team .
I had a large tumour so was heading for a mastectomy not a lumpectomy.
It was my breast surgeon who raised the question with me if I wanted a double as I was planning DIEP reconstruction .
I had never thought of a double but talked it through with my GP, breast care nurse and spoke to a friend of a friend who had a double mastectomy and double DIEP flap reconstruction and in the end I decided to do it.
The main reasons were the anxiety of wondering if I would get cancer in the other breast and have to go through the whole roller coaster again ( my surgeon said the odds were 10%) and also that you can only do the DIEP surgery once.
If I was only having a lumpectomy or getting implants ( or going flat) that may have changed my thinking.
I didn’t have any genetic predisposition to breast cancer.
The arguments for and against are completely valid and that’s why it is a hard decision.
I am content with the decision I made .

KimF

@Cath62 Thank you for sharing your story. Gosh, I wish there was an instruction book for this! I'm big breasted as well, and you've highlighted another option - to get the second one reduced to match the first one - something I hadn't thought about. I don't want to be totally unbalanced. And I'll also have a look on the bcna site for some more info. Good luck on your journey.

KimF

@AllyJay Thank you for sharing your journey. I like the way you turned the stats around! It's what my gut is saying, but I'm wondering if it's a knee jerk reaction - "just get rid of both". I'm concerned that because they haven't conclusively found the primary source on mammograms, ultrasounds, PET and MRI, then it's likely that they won't see anything in the other one. Gosh, it's so difficult. I hope your journey continues well.

KimF

Hello everyone

Thank you for sharing your journey - I really appreciate your openness and the questions you've posed. I've got lots to think about, and will carry on the discussions with my surgeon and oncologist.

Hugs and thanks again

Christabel03

Hey @KimF , so sorry that you find yourself here. I have just finished my active treatment for Stage 3 HER+ I wished I had pushed harder for a double at the time of meeting my surgeon as I was feeling the same as you, unable to cope if I had to go through it again, petrified of it turning up in the other breast etc, but I had so much cancer apparently the priority had to be given to the affected breast and lymph nodes without the possibility of the other or "good" breast being removed and then perhaps causing a problem or a delay with treatment. I am now just about to see my surgeon to have the other one removed by choice because I really dislike having one breast only.  I have tried to accept the prosthesis and have done pretty well with it since having to start wearing it but I just find myself wanting more than anything just to have them both gone and to at least look even (not sure if thats even the right word but you know what I am trying to say I am sure). 

I did wonder if at the time of diagnosis and the talk of surgery whether or not I was just having a knee jerk reaction just get rid of them both, but I did also know from my scans etc that there was a lot of disease and we had already touched on the fact a lumpectomy wasn't going to be an option, so I had time to process while going through chemo. I have to say it is something I haven't changed my mind on though, the whole way through, even when they told me they would only do one at a time, I just parked it and made all the queries I could about when I could have the next surgery. 

It is all so overwhelming and everyone will have a different story to share. It is really important to take the time you need and to make the decisions you want under the guidance of your medical team. Big hugs to you as you navigate all this xx

TonyaM

Hi @KimF, so sorry to hear you’ve had to join us but you’ve come to the right place. I will say that age can play a part in these bc decisions. In my 40’s I was horrified at the thought of losing a breast so opted for a lumpectomy and radiation. In my 50’s when it came back in the same spot,I was ambivalent about losing my breast- it had to go and because of previous radiation I couldn’t have an implant. For 12 yrs I’ve lived lopsided but now in my 60’s,I’ve recently had the other one off- don’t care about boobs,gone flat.The intimacy side of it was important in my 40’s but it’s not so much in my 60’s. Having my breasts off 12yrs apart means each side looks abit different- a roll of fat under my arm on one side.I find this abit annoying but it’s great not ever having to have a mammogram again!
Hopefully I’ve cut my risks of getting bc again and I NEVER want to go through radiation and chemo again-especially not in my 70’s!  So yes,age can influence your decision but ultimately go with your gut and with what feels right for you now.You can’t predict your future. If you can’t decide,then go with what your team recommends. Big hugs xx

KimF

Afraser Thank you! You've posed some very good questions. I've got a psyc appointment in a couple of weeks and I'll have a good chat to her about how I'm feeling. I hope that I can come to terms with this soon. And you're right - make the decision and have no regrets.

KimF

Julez1958. Thank you for sharing your journey. So much to think about. I don't think I'll go down the DIEP route - but I should give it some thought. I don't think I could cope with being on this terrifying rollercoaster again. Good luck on your journey.

KimF

Christabel03 Hi! Thanks for sharing your story and thoughts. My team are saying a lumpectomy is preferred, with a couple of lymphs taken as well, but at the back of my mind they the primary source still hasn't been identified, although on the MIR, there is something that is of interest - nothing has shown on the PET, mammograms and ultrasounds, and my thinking is that if they can't find the source and they're looking the the right place, have other cancer areas been missed. It's all so difficult, and I really appreciate hearing your thoughts. Good luck on your journey, and thanks again.

KimF

Hi TonyaM. Thank you so much for sharing your thoughts and story. I'm in my 50s and feel that both gone would be fine - husband is very supportive, so apart from the psychological issues, I think it'll be okay. Just got to try to convince the team, but when I meet with them again, my husband will be with me, and he's very persuasive and cool headed! I haven't been through chemo and radio yet, but I'm already sure that I don't want to go through it more than I have to. I've admired everyone who has got through it once, but to do it again - you're a very special person, with incredible strength. Thank you again for sharing, and I wish you all the best on your journey. Big hugs to you as well! 

Keeping_positive1

If you want a bilateral mastectomy and the medical team only feel only one breast needs to be removed, then you will most likely have to push for it.  We had another member here who I and a few others supported and stressed the importance of her telling her medical team that psychologically she will not cope with only one breast being removed! 

I cannot recall who it was now, but you may come up against resistance for them to remove a perfectly healthy breast unless you stress you will not cope well otherwise, if that is the case for you. 

It is great that your husband will be there, but it will be you that needs to persuade them to remove both breasts if that is what you want.  

All the best and I hope you have all the love and care you need surrounding you. xx

Keeping_positive1

Sorry, just read your original post.  Even so, if you only need lumpectomies, but you prefer both breasts off you will still need to push for that.  I went with bilateral lumpectomies, but if they had said I need only one breast removed, I already told them I will want both removed.  

It isn't an easy decision either way, but for me I chose the lesser surgery, but probably similar to what @TonyaM has expressed on similar threads, it gets terribly anxiety producing at mammogram time of the year.  There isn't a right or wrong way/answer, but do what you feel is best for you.  Every mammo time of the year I wonder if I should have had them removed.  It of course doesn't mean the cancer won't return, but can be the right decision for some.  I wish you all best, and sorry you find yourself in this "club".  But we are here to support you, and you are in good hands here, so you can toss ideas around here and nobody will judge you nor your decision you make for yourself.