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gwynedd profile image

Hello all, I'm new here and have found reading your posts very helpful. Thank you.

I'm about to have my last cycle of chemotherapy after being diagnosed with HER2+ cancer. I have a tumour and cancer cells so the surgeon is advising a full mastectomy.

I'm trying to make a decision about whether to have my other 'healthy' breast removed, and I'm struggling. My surgeon was very clear that it wouldn't reduce my risk of cancer in that breast area because I've already had cancer now. I can see the advantages of both decisions, so I would be really interested to know how any of you have made this difficult decision. I keep changing my mind. I would really appreciate hearing your stories and how you came to a decision. Many thanks

13 Replies

This is a hard question and very difficult for us breast cancer survivors to give a view. We are all different. This is my story, since you asked.

I had the same kind of cancer as you but the radical mast(one side) came first, followed by chemo with herceptin then radiotherapy. So my treatment was different from yours.

What I decided, when I was first diagnosed, was that my surgeon and oncologist were kings /queens, that I would do everything they said, that I would not look at a website other than the ones the oncologist showed me. (From memory, these were NICE, an oncology one that was too difficult for me, plus the breast cancer charity ones like Macmillan.), This meant that I (and my husband was with me all the way on this) did not have to make choices where choices need not be made. This took a lot of pressure off us both. You know now that the less pressure the better you can cope.

I am now six years past the mastectomy and very well and happy. Hope this helps, and I wish you well.

gwynedd profile image
gwynedd in reply to Happyrosie

Thank you for sharing your story Happyrosie. They have said it's up to me if I have a double mastectomy, so it's my decision. It does feel like a lot of pressure. Part of me feels it would be more convenient to have both removed ( no bra with inserts needed), but I'm also wary of unnecessary surgery.

Hi, hope your doing as well as can be expected, I only had 1 breast removed,I did question about having the other side done as well, but like you was told, it wouldn’t reduce my risk, so I had a mastectomy, with an expander fitted, that was inflated gradually, and about 5 months after had an implant put in, and the other side reduced to match it,( I was rather big busted).This is only my experience, but hopefully to put your mind at ease, there was no pain at all, I left hospital with pain killers, only used paracetamol twice, the worse part was the drains,( as I wasn’t in pain,I kept forgetting to pick them up and take them with me, I ended up, putting them into a shoulder bag to stop the seals blowing, and the only other thing was constipation, that was uncomfortable, so get something to help, before you have the operation.

Good luck, with whatever decision you make, and I hope all goes well.

gwynedd profile image
gwynedd in reply to Parker1438

Thank you Parker1438 , you've put my mind at ease about the operation. I've not been thinking too much about the pain, but I realised that's because I've been scared.

Hi GwyneddI had to make the same decision and went with a single mastectomy back in 2013. It was quite radical as the cancer had spread into my lymph and chest wall but it felt ok despite not looking great! 2 years later I had reconstruction following radiotherapy and chemo (determined to see my daughter married as my first surgeon told us to bring the wedding forward!) Please try to focus on getting well and make that a priority if you can. I was single so only had myself to consider but focussed on my kids and grand children - rid yourself of the cancer lovely and look forward to the rest of your life xx

gwynedd profile image
gwynedd in reply to Caswell

Thank you Caswell. I think I'm leaning more towards having one removed, my thinking being that I can always ask for the other to be removed at a later date if I want. I have a strong family history of breast cancer, so they are giving me the option. It's good to hear that you've recovered well and are enjoying your family!

I think it’s always such an individual choice and no history in my case. Good luck and always happy to chat x

Hi Gwynedd, Glad you are able to talk about this decision. As I was a nurse I made a decision to have a simple mastectomy. No skin saving or reconstruction. I am heading towards seventy. Not needed for breast feeding. Felt it was my decision to get rid of the growth which I saw at my 1st biopsy. Had a discussion with my daughter before I had my results. At my results I needed a further biopsy. They thought that there was another growth. I ask for a mastectomy and was given a date for op. My husband was upset with the decision at first consultation but after the second result meant a mastectomy was right. My op. was great. Couldn’t believe I went home 4 hours late. No drains. No pain. Occasional paracetamol. Post -op did need to have chemotherapy or radiotherapy. Seen in oncology and started on Tamoxifen. A year has gone by now. Kitted myself up with bras. You get a good replacement breast from Breast clinic. Feels natural to touch. Have even knitted some knockers. Lol, Bought a silicone breast for swimming. Didn’t consider removing other breast then , but it would go if another growth appeared. Recent mammogram clear👍. All good wishes for the future.

gwynedd profile image
gwynedd in reply to Sheppie

Thank you Sheppie. It's amazing how quickly you went home! It's very encouraging to hear how well you coped with the mastectomy. I'm about to haven't last round of chemo, then the op in January, followed by radiotherapy. I've been told that out of all the treatment the chemo is the hardest, so I'll be glad to finish. I do have a warm attitude towards the chemo though, it's literally saved my life so how could I not be happy. 😄

Sheppie profile image
Sheppie in reply to gwynedd

Glad your doing so well. Fingers crossed all goes well in January. They should keep you well away from Covid. I am keeping away from Jo Puplic.Husband at high risk but now back at work. Trying not to catch Covid which has been on shop floor weekly since going back. Hope all goes well for Christmas 🎄. Keep safe.

Dear Gwynedd, my story is a bit different. As soon as I was told that I had cancer and the radical mastectomy is needed, I asked that the other, healthy one is removed so I don't have a fear to have a cancer there. Was denied, so one side mastectomy, following hard chemo. When my surgeon changed, I asked a new one on opinion to remove the other one, and he found that a good idea since not enough is known (yet) of the cancer and I am not even 50. So it was approved, removed the other one, did tissue expansion and later silicone on both side.

Recovery is not that difficult, is a bit log (some weeks), and I am very happy I did that. I am a person that likes to reduce risk (was that all my life with everything) if possible, and with that reduce a stress related to fear. What ever you decide, I am sure you are right. There is no crystal ball to tell you what future brings. Do not fear anything, all will be fine. Big hug

gwynedd profile image
gwynedd in reply to JCwarrior

Thank you JCwarrior , as you say we have no idea what's going to really happen today , let alone next year! I spoke with my oncologist yesterday and she feels that it won't reduce my risk of further cancer by having the healthy breast removed either. But she's told me to talk it through again with the surgeon,. Thank you for sharing your experience. Warmest wishes to you 💕

JCwarrior profile image
JCwarrior in reply to gwynedd

Forgot to say, mine was ER+ PG+ HER-, so it's a bit different story.

Be good, and do not worry, fear is the worst enemy. Takes away a hope and a force that we need to fight cancer!

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