I have not posted a thread previously but have used the forums extensively as a support since dx and to respond to others where I’ve felt my experiences might have helped. So thanks to all those who take the time post. I now have a dilemma which I would appreciate some help in working through which I have not found help with in existing threads.
A brief history. Age 47. Dx and mx March 2008. Diagnosis - invasive lobular carcinoma. Tumour 6.7 cm. 9 nodes removed - no involvement. Last chemo nxt Tuesday followed by 15 rads and 5 yrs tamoxifen.
I’m now at a stage where I am thinking about my future - living with breast cancer -and have been giving thought to having a preventative mastectomy on my non affected breast with the hope that it might reduce the risk of developing cancer in that breast in the future. This is largely because of the research I have read that shows that there is an increased risk of this ocurring for those diagnosed with lobular cancer and because of posts I have read where women have said they have been told by their oncologists that its a when not if scenario for those with this type of cancer and of course in the main to give me peace of mind.
As this is a big decision bearing in mind the trauma my body has already gone through I would like to make an evidence based decision as far as possible rather than making the decision purely to achieve peace of mind. I have researched through the internet and found only a little evidence that shows a preventative mastectomy reduces the risk in these circumstances.
I also have some concerns about going down this route. Firstly, my oncologist looked at me as though I was mad when I mentioned this to him and suggested that early diagnosis through regular check ups was the way forward although he was open to discussion in the future. I am being treated at the Barts & London and question why an experienced, well regarded oncologist would not be immediately supportive. My other concern is that I have also read that cancer can develop in those who have undergone a preventative mastectomy. If this is the case it will develop in the chest wall, skin or lymph nodes and my thinking is that this will increase the risk of secondaries. I have seen no evidence to support this but wonder if perhaps I am best to leave well alone if this is a possibility.
Of course this is ultimately my decision and I am well aware that regardless of my relatively good prognosis and regardless of any preventative routes I might choose to go down that no one is immune from recurrence however I would appreciate others thoughts on this and to hear of any research that supports preventative surgery in these circumstances.
Thanking you in anticipation for your support and wishing you all well for the future.
I am also planning on having my other “healthy” breast removed (I had mx in June) not least because I hate being lopsided and have no intention of subjecting myself to reconstructive surgery.
I feel like a freak sometimes in that I have no emotional attachment to my breasts at all. I don’t link my sexuality or feminity or confidence to them in any way.
(I recognise some women - probably most women - do.)
What I find irksome is the presumption among most oncs and surgeons that all women feel that breasts must be preserved at all costs.
A mastectomy does not remove risk entirely but it does reduce it and that is all anyone who has had a dx of primary bc can endeavour to do - reduce risk.
The medical establishment believes strongly in its ability to detect changes through regular check ups. I don’t share their confidence.
I know too many women who have been misdiagnosed with mammograms etc.
I will be much happier physically (no more lopsidedness) and psychologically with the other breast gone.
It’s ultimately a decision only you can make - but I would say that oncs and surgeons see the world very differently. My onc got his knickers in a huge knot when he discovered my surgeon had removed my ovaries. God knows why. I won’t be having the conversation about prophylatic mx with the onc - I will go straight back to the surgeon.
Hi
I thought I might add my comments to this - I thought I was having a double mx for preventative reasons but on the day they decided to just remove the infected one. When I queried this my consultant said there was no evidence to support the fact that I would get the same type of breast cancer again and one should not remove healthy tissue for no reason. I hate being lopsided and would have preferred to be flat but on the other hand I am glad I have not had to endure the pain both sides. I think my consultant believes that if the cancer is going to come back it could come back anywhere and you can not remove everything just in case so why remove the other one for the same reason. He has a point, I think.
Not sure if this will help - hope it does
Penn1
I was treated at Barts and had Dr Graeme Mair as my oncologist. He told me the same thing when I thought I ought to have the other breast investigated after the lump I had didn’t show up on a mammogram. he said they don’t hunt unless there’s some symptoms. On the other hand, I did meet someone in Barts hospital who had a family history of breast cancer who had had bilateral prevenative mastectomies and reconstructions at 27. But she had developed a bad infection and had to have one removed so not entirely successful.
If you want to discuss things further you could try talking to a surgeon there or get a second opinion. operations do have risks so I’d avoid them unless there was good evidence it would make any difference.
For me, removing a healthy body part because it is potentially at risk from cancer, unless that risk is very high, does not make sense. As we grow older, we are at risk of cancer from all sorts of places - bowel, uterus, ovaries, prostate, testes, skin etc etc. I suppose you could argue that any organs that we could do without could be scrapped just in case, but would the benefits of avoiding cancer outweigh the risks of surgery and what would the costs involve? It is a very interesting, ethical question.
Karen,
Just to address one part of your post - I hope that anyone who thought their oncologist was saying that developing lobular in the other breast was a case of “when not if” was misunderstanding what the oncologist said. There is statistically a higher chance of a second primary in the other breast with this type of cancer (can’t remember the figures) but in no way a given that it will happen.
I’ve also been thinking of mx on the other side - more to even things up than for preventative reasons, the lobular was the second primary in the same breast, so I’ve kind of gone off them as a part of my body, and I wouldn’t be that sad to lose it.
Also, of course, because my lobular didn’t show up on mammo or ultrasound. So I’m not that impressed at the thought of follow-ups using mammo and u/s - I trust my own fingers more. But I’m also not that keen on yet more surgery!
I had cancer on the left and I chose to have my 'healthy breast ’ on the right removed as at the time i was undergoing genetic tests(still am), and the genetisist said by having it removed would reduce my risk by 90%.I was not going to let the fear of another op put me off,I gladly let them take it away a yr after my first op,and have never regretted it,and even before the op I found out I didnt carry the main 2 genes,but still wanted the op.So had right mastectomy,and tram flap recon at the same time and I think if i had kept my healthy boob it would not have matched my recon at all,so overall i am glad I had it took away.I do understand what your saying cathy,but when someone is telling me it will greatly reduce my risk i am not going to ignore it.Now I just need to worry were else the cancer might be…in yrs to come.
Thank you all for your comments. Your responses have given me a lot to think about before making my final decision. On the one hand I believe that fate will decide my future no matter what preventative routes I go down be it further surgery or changes to lifestyle. On the other I’m not sure if I can cope with the anxiety of just keeping my fingers crossed but maybe the fear will fade over time.
I also emailed the Dr Susan Love Research website to ask if there was evidence that this would reduce the risk of cancer developing in the other breast and the response, which was as follows, might be of interest to others: “Having a preventative mastectomy will reduce the risk of developing cancer in the other breast however depending on the age of the woman and the stage of the original cancer the odds of getting cancer in the other breast are fairly low and the chances of the other cancer spreading higher. Also taking an anti estrogen medication cuts the risk in half so getting cancer in the other breast ends up being fairly low (0-7%). But it is a personal decision and removing the anxiety and worry counts for many women”
I know its a generalisation but according to the above the risks with treatment appear to be a lot lower than I’ve read elsewhere and as the fear of recurrence will remain no matter what decision I make perhaps a prevenative mastectomy is a bit drastic. I’m sure my indecision will continue for some time yet as I’m still undergoing treatment and I also need to seek the opinion of a surgeon.
Once again thanks for your support and best wishes for the future.
No, I agree with you one hundred percent to have the other breast removed because your risk was unacceptably high and I would certainly do the same thing with those odds. My point was if the risk is very low or unknown then the risks of surgery/infection etc may not outweigh the benefits. As Susan Love points out also, you have to consider the psychological risk if someone is sitting there constantly worrying about developing cancer, is it better to remove the breast? There is no right answer in general and very much depends on the individual circumstances. Unfortunately, the medics are driven by evidence based practice, so if the statistics say no, the risk of removing a breast is not great then thats what they do and often ignore the individual.
im going through the same thing at the moment ,i had left mast 2006 with lobular stage 2 and have liver secondaries ,im having pain in right breast now and am having investigations on this side at the moment ,now i dont hold with mamogram results as it didnt find the first cancer and also ultrasounds ,mine was found only after i made a fuss after being sent away ,i knew my breast wasnt right the pain and the dimpling just wasnt right ,now im having pain in right side ,but noone can find the cause hence the mri on monday next , the surgeon said that some women experience extremme pain in breasts ,but i havnt untill now ,hes wanting to put a steriod injection into my boob if the mri is clear but surely this will hide any sypmtoms that may occur in the future .so i really dont know what to do ,i had asked for the right breast to be removed when i was opperated on first ,your right all the wondering if it will return does get to you ,im usually quiet a relaxwd person and never botthered with the doc unless i was reallt ill ,now it seems im never away ! anyone have any advice on this ? lynn x
Hi
I had mx and recon march 06 after lobular stage 1 and 2 tumours in breast showed up, i have been told that i can have the other breast removed within the time of my care programme (8 yrs to go). i am wating for genetic testing to be completed and i know that this will play a major part in making my mind up for me, its a tough call but some people feel that why wait to see if it returns and better to take the necessary steps before it does.
I know that for me it will be weird as my recon has not worked out and will be removed in about a year so i have gone from flat to inflated and back to flat, my breasts are important to me but peace of mind is too, surgeons do have a bit of an issue and seem to think that you cannot be feminine without them which for some women is rubbish
I know that since being diagnosed i have learnt to fight my corner and despite having to nag my surgeon for over two years he is finallly realising that yes this is my body and if i get it wrong then okay its my call,everyone is different and its a huge decision but no-one should be made to feel like they are wrong .
I have never been away from the doctors since march but they are there to support you, hang on in there lynn and make sure you have someone with you when you go to gp/clinic
take care
Debs x