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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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  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    As you probably know, I didn't have a mastectomy, I had a lumpectomy. I completely get what you are saying though. From another perspective, my family had a hard time understanding why I didn't get the whole breast removed. They just couldn't understand that I didn't need to. I will admit that before I met with the surgeon I was wanting the whole thing gone. But I had a choice and I know not everybody gets a choice, I asked a lot of questions and I mean a LOT, and I made what I consider to be an informed decision. I put a lot of faith in my surgeon and you are right, they are the ones to be listened to. I can understand your frustration with the misinformation being given, decisions need to be made but ladies need the proper information before they make the decision. I hope you don't mind that I responded re the mastectomy, but my point is, that my family were ill informed and trying to get me to change my mind. I have my genetic testing coming up in late October, I am hoping I don't have the gene but if I do I won't be rushing any decision making until I have all the facts. I don't consider your post negative at all, what I find worrisome is that there are ladies out there who are ill informed and taking drastic action when it is not always needed and won't be the insurance they think it is. You have been a great support on this network and helped so many people, I, for one appreciate it, take care, 

    Hazel xx

  • Deanne's avatar
    Deanne
    Member
    11 years ago
    I certainly don't think anyone means to give people the wrong information. Everyone shares what they think, have heard or read to be helpful but that information may not have come from a good source. Reading the info I got from the BCNA booklets and My Journey Kit helped me to ask the questions of my doctors about my situation. I think a lot of doctors working in this field are understanding of each situation being unique and that for some women a prophylactic mastectomy might be the best choice. But I am sure that they make it very clear about what this means as far as recurrence and chance of a new cancer is concerned for that person. It is sad to think that some women still don't seem to 'get it' and then perpetuate the very same misinformation that caused their fear. Thanks for always being such an enthusiastic support. :) Deanne xxx
  • Deanne's avatar
    Deanne
    Member
    11 years ago
    Yes our doctors are definitely the ones to listen to. I was very fortunate to feel that I could trust their advice and ask about anything that concerned me. We can all share our experiences and what we have learnt about breast cancer to help others on here and within our own circle of family and friends. Take care. Deanne xxx
  • June1952's avatar
    June1952
    Member
    11 years ago

    I've not been on the net until now so only just read your excellent post re prophylactic mastectomy.

    As has been said, it is right for some people but others are simply doing it because they have heard of a 'star' doing it.

    Personally, when I was told I needed a mastectomy as 63% of my breast was involved I was shocked but at no stage was it mentioned that it would be a good idea to remove both breasts.  If it was a good idea I am sure the surgeon would have made the suggestion.

    I am trying not to think at all about more cancer coming along in either breast but sort of figure if it does then we look at the options of the times.

    Thanks for all your support to lots of ladies on a range of subjects.

    Summer

  • Deanne's avatar
    Deanne
    Member
    11 years ago
    I am so glad to hear that what I have posted has helped someone to feel more comfortable with this. If it were not for my very patient and caring oncologist taking the time to explain the reality of my situation to me I would have been insisting on a prophylactic mastectomy at the end of my treatment. But I know that I have had the treatment that will give me the best chance of staying cancer free. I will stay on tamoxifen, walk and exercise everyday and use the thought of recurrence as motivation to stick to healthy food choices. These are the things that do make a difference. Thanks for the encouragement, I was just feeling like I was speaking a foreign language on here. Best of luck with your recovery. Take care. Deanne xxx
  • 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.