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

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.

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

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

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

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

Does anyone understand? | BCNA Online Network

26 Replies

Deanne
Member
11 years ago
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
Deanne
Member
11 years ago
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
June1952
Member
11 years ago
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
Deanne
Member
11 years ago
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.
JessicaV
Member
11 years ago
Dear Deane,

One vital issue that bothers me about the information given to women choosing between a lumpectomy and a mastectomy is that we are told that both have the same outcomes in survival rate. But only a few sites, like the Susan Love cancer page, will tell us that part of the deal with the lumpectomy option is that you almost always have to have radiotherapy (unless it is under .5cm, or for certain less-common breastcancers) And the other part of the deal with lumpectomy option is that even with radiotherapy, there is an important increased risk of local or regional recurrence with lumpectomy that does not exist with the unilateral mastectomy option. But these are generally picked up in the 3monthly checks by surgeon or oncologist, or in the annual breast ultrasound and mammogram before they develop too far, and are quickly treated with further surgery (generally a mastectomy because the radiation cannot be repeated so you cannot have a second surgery plus radiotherapy on the same breast as your first one) and/or chemotherapy/hormone therapy/targetted therapy. So the lumpectomy option is: definitely have the lump removed, may need a second surgery if the margins are too close, definitely need radiotherapy, and significant risk of further round of treatment including mastectomy if a local recurrence happens.

My concern is the distress and most of all the loss of hope that hits the women who find themselves having to have a second round of surgery and treatment because they have had one of these local recurrences after lumpectomy and radiotherapy and maybe chemotherapy. In fact, they really are not on a downward path anymore than anyone else who has had BC and currently no evidence of metastases.

But they do not realised that this is a factored-in risk, and that they just got unlucky, and ended up back having a bit extra treatment for their primary breast cancer.It feels like they have had to go back into hell and are once again confronting their own deaths. And the second time round is harder to dismiss.

I wish there was some way to get this info out there. The three women I have met in this situation were all angry, despairing and believed they would have cancer to deal with for all the rest of their lives. And it was not any more true for them than for all of us post initial diagnosis of BC
JessicaV
Member
11 years ago
Dear Deane,

One vital issue that bothers me about the information given to women choosing between a lumpectomy and a mastectomy is that we are told that both have the same outcomes in survival rate. But only a few sites, like the Susan Love cancer page, will tell us that part of the deal with the lumpectomy option is that you almost always have to have radiotherapy (unless it is under .5cm, or for certain less-common breastcancers) And the other part of the deal with lumpectomy option is that even with radiotherapy, there is an important increased risk of local or regional recurrence with lumpectomy that does not exist with the unilateral mastectomy option. But these are generally picked up in the 3monthly checks by surgeon or oncologist, or in the annual breast ultrasound and mammogram before they develop too far, and are quickly treated with further surgery (generally a mastectomy because the radiation cannot be repeated so you cannot have a second surgery plus radiotherapy on the same breast as your first one) and/or chemotherapy/hormone therapy/targetted therapy. So the lumpectomy option is: definitely have the lump removed, may need a second surgery if the margins are too close, definitely need radiotherapy, and significant risk of further round of treatment including mastectomy if a local recurrence happens.

My concern is the distress and most of all the loss of hope that hits the women who find themselves having to have a second round of surgery and treatment because they have had one of these local recurrences after lumpectomy and radiotherapy and maybe chemotherapy. In fact, they really are not on a downward path anymore than anyone else who has had BC and currently no evidence of metastases.

But they do not realised that this is a factored-in risk, and that they just got unlucky, and ended up back having a bit extra treatment for their primary breast cancer.It feels like they have had to go back into hell and are once again confronting their own deaths. And the second time round is harder to dismiss.

I wish there was some way to get this info out there. The three women I have met in this situation were all angry, despairing and believed they would have cancer to deal with for all the rest of their lives. And it was not any more true for them than for all of us post initial diagnosis of BC
JessicaV
Member
11 years ago
Dear Deane,

One vital issue that bothers me about the information given to women choosing between a lumpectomy and a mastectomy is that we are told that both have the same outcomes in survival rate. But only a few sites, like the Susan Love cancer page, will tell us that part of the deal with the lumpectomy option is that you almost always have to have radiotherapy (unless it is under .5cm, or for certain less-common breastcancers) And the other part of the deal with lumpectomy option is that even with radiotherapy, there is an important increased risk of local or regional recurrence with lumpectomy that does not exist with the unilateral mastectomy option. But these are generally picked up in the 3monthly checks by surgeon or oncologist, or in the annual breast ultrasound and mammogram before they develop too far, and are quickly treated with further surgery (generally a mastectomy because the radiation cannot be repeated so you cannot have a second surgery plus radiotherapy on the same breast as your first one) and/or chemotherapy/hormone therapy/targetted therapy. So the lumpectomy option is: definitely have the lump removed, may need a second surgery if the margins are too close, definitely need radiotherapy, and significant risk of further round of treatment including mastectomy if a local recurrence happens.

My concern is the distress and most of all the loss of hope that hits the women who find themselves having to have a second round of surgery and treatment because they have had one of these local recurrences after lumpectomy and radiotherapy and maybe chemotherapy. In fact, they really are not on a downward path anymore than anyone else who has had BC and currently no evidence of metastases.

But they do not realised that this is a factored-in risk, and that they just got unlucky, and ended up back having a bit extra treatment for their primary breast cancer.It feels like they have had to go back into hell and are once again confronting their own deaths. And the second time round is harder to dismiss.

I wish there was some way to get this info out there. The three women I have met in this situation were all angry, despairing and believed they would have cancer to deal with for all the rest of their lives. And it was not any more true for them than for all of us post initial diagnosis of BC
Deanne
Member
11 years ago
Thank-you for responding. I have learnt so much from other ladies on here and I know for me the biggest thing has been how things can change with new information. The media is not a terribly good source of info and until we are diagnosed this is often our only experience with breast cancer. The learning curve is a steep one and at one of the most scarey and emotional times of our lives. I was fortunate to have good support and this helped me to just take a breath and find out more. My ideas about what was right for me did a complete 360 at times. Even when I read back through my posts and comments on here I sometimes go 'what was I thinking!' If I just prompt people to slow down and ask more questions then it might help them to be more comfortable with what is right for them. We can't change the fact that we had breast cancer but we can help each other to achieve a better quality of life post diagnosis and treatment. A very important part of that is feeling satisfied that the right decisions have been made. I'm so glad you are feeling good about life again. Take care. Deanne xxx
Mia1965
Member
11 years ago
How are you all???

When I went for my very first visit with my surgeon. I was terrified that I would have to lose my breast, especially with hair loss a reality too with chemo!!!

He asked me if I wanted a Mastectomy right off the bat & I was in such a shock just thinking about it! I said no definitely not!!! He said that it was fine by him. it was such a relief to hear him say that. But a friend of mine endured three operations, each time taking more & more of the breast due to the spread of the cancer. It took her 11 years to have a reconstruction done. She was traumatised to having had a Mastectomy through force & not choice!!! So as for women who have a choice, it can't be a very easy one can it? Living with a choice would have to be easier than living with no choice in my opinion. But every woman has to decide for themselves. I commend any lady who makes the choice to remove one or both breasts. But as far as I went with my choice...I commend anyone who decides not to as well!!! All the advice & knowledge in the world are one thing, but making the choice is another.

All ther best to any lady going through this process at the moment & good luck with the future.

Take care everyone Mia XOXO
Christine_Marie
Member
11 years ago
I really do understand what you are saying, I think some ladies just get really fearful & scared & sadly others have no choice but to have mastectomies... Deanne we ladies on this forum are really lucky to have someone like you educating us, so don't stop because you are really good at getting your point across... I was first told I had no choice but to have my breast removed, so I went for a second opinion, my surgeon explained the lumpectomy really well & at first I was really scared, but I think it was mainly because of uneducated people saying comments like these!! "I wouldn't mess around with this just have them off" "If that were me, I would have both removed" & "just think you could have brand new perky boobs" & so on I am happy with my choice I just wanted to save as much of me as possible;) & I must say he has matched me up quite well....... listening to your team of doctors & educating yourself is defiantly the way to go:) Take care care:) Christine:) x