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Deanne's avatar
Deanne
Member
11 years ago

Does anyone understand?

Not for one moment do I think that women should not have the option of a prophylactic mastectomy and I think it has been a hard won battle to convince surgeons that this the right decision for some women. I don't want anyone to think that I am trying to make it harder for them when they choose this for themselves. But I don't think that all of these women understand that the way they talk about this and give advice to others contemplating this surgery can be really upsetting and misleading. It is not about one person's cancer being worse than another's either. It is about the reality of recurrence. Some women (and yes I fall into this category) are unfortunately diagnosed at a more advanced stage of this disease. This does mean that they are unfortunately more likely to have a recurrence. This recurrence is also more likely to be a secondary cancer recurrence. I don't want to scare people but this is the reality for me. It has been something I have had to work very hard to learn to live with without letting fear of recurrence rule my life. Connecting with other women on here has helped me to come to terms with this. I would not be as ok with it without the support of the BCNA network. But I find it very hard to not get very upset when I read other people's comments about surgery choices. Yesterday I read "I can't help but think that if more people chose the drastic measure of removing both breasts there would be less recurrences". All women facing a breast cancer diagnosis want to do whatever it takes to get rid of the cancer and stay well. To suggest that women who do not choose to remove both breasts are not doing all they can to avoid a recurrence is hurtful and just plain wrong. The reality for all women is that removing a healthy breast will not change their chance of recurrence at all. The only thing it changes is the chance of getting a new primary cancer in that second breast. For most women this chance (of getting a new primary cancer in the other breast) is fairly low. I totally support a woman's right to choose a prophylactic mastectomy but please understand that it will not change the chance of recurrence for anyone. I feel living with the threat of recurrence is tough enough without having to read or hear other women perpetuating incorrect information. Sorry if anyone thinks this is a negative post but I feel very alone about this. Deanne
mastectomy

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  • rivergum's avatar
    rivergum
    Member
    11 years ago

    I certainly agree with you, and it has been your previous posts on this that help me feel more comfortable with this. It is incredibly valuable to have a viewpoint that speaks up at times when it might appear that there is a trend resulting from more publicity about prophylactic mastectomy. Remembering and valuing all the treatment options helps avoid a potential groupthink about the right way to manage recovery from an initial breast cancer diagnosis.

    As you say, for some, a prophylactic mastectomy is helpful, like the situation of a known heritable risk with the BRCA genes that Angelina Jolie's surgery made so well known and there will be other valid reasons for prophylactic mastectomy. But for many of us who do not have a strong family history, the option to be conservative is a good choice and for medical practitioners that would likely be their most ethical preference.

    I also have a risk of future metastasis but it most likely won't be in the other breast. I accept that the risk of a new primary in the other breast will be much lower because for starters I'll be on tamoxifen and ideally, I'll be taking up a good amount of exercise into the future.

    Exercise, improving my weight range, and listening to my doctor's advice will be my way of dealing with the fear of recurrence and my way of managing the uncertainty that a cancer diagnosis brings.