Forum Discussion
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
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26 Replies
- Hi Mia I did not have a choice when it came to having a mastectomy and many women don't unfortunately. Just as we don't have a choice about getting cancer in the first place I guess. But it helped me to think that I did have other choices. Helping myself by exercising and eating well while I was having chemo. Choosing to share my journey on here and hope that sometimes I might be able to help someone feel a bit better. There are always choices even if it just how we deal with what life throws at us. Take care too. :) Deanne xxx
- You have such a great realistic attitude, Summer. You made me smile with that quip about the questions! I can imagine. At least you will know more after your appointments. Hope that the news is as good as possible for you. Let us know how you go. Thinking of you. Deanne xxx
Hi Deanne and other network friends
One very important thing you have said is "realise that there are no guarantees with BC".
Personally, I think that is why the 'specialists' don't commit to too much in this day of litigation. There just isn't enough concrete data to be able to tell us one way or the other.
All we can hope is that we all have the best possible outcome and we all get to see our Golden Wedding Anniversary. Being a 'late starter' this is highly unlikely for me but at our wedding 12 years ago we did commit to 40 years and whilst that is now in doubt it is still my hope.
I have appointments with my surgeon and (yet to meet) oncologist tomorrow so you can imagine all the questions they will have to try to answer !
Wish me luck - and all the other ladies who are still in 'no man's land'.
If I am not on-line tomorrow you will understand.
Thoughts to all :-)
Summer XXOOXX
- I just checked the intial info I received from my surgeon. It was general info she gives to everyone and there was a flow diagram that clearly indicates that radiotherapy is part of the process for lumpectomy option and even sometimes (as was the case for me) after a mastectomy. BCNA are pretty clear with this in both their on-line info and the My Journey Kit too. I guess some people may not read this and you certainly don't take everything in when you are in appointments. I think there is also a fair bit of info out there now that indicates that a local recurrence is more common after a lumpectomy than a mastectomy. I don't know what the statistics are but I am sure that doctors would be able to tell you if you asked. That is the thing, doctors will only give you stats if you ask because some people actually prefer not to know. When it comes right down to it all we can do is encourage women to ask lots of questions and find out as much as possible before that initial surgery. I know some women have multiple surgeries to try and achieve clear margins too and sometimes wish they had just had a mastectomy to begin with. I think all we can do sometimes is offer support because this is one journey where things can change unfortunately. There are no crystal balls and we just have to choose the option that we feel comfortable with and realise that there are no guarantees with BC.
