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advice needed for prophylactic mastectomy

12 REPLIES 12
KatieK
Member

Re: advice needed for prophylactic mastectomy

Great, thank you...

Moderator
Community Manager

Re: advice needed for prophylactic mastectomy

Starting new thread HI annieanne

I hope you don\'t mind but I am going to start a new thread with your post as I think it would be more likely to get more replies.

Kind regards
Moderator
Breast Cancer Care

KatieK
Member

Re: advice needed for prophylactic mastectomy

Advice Needed Please Hello, I wonder if I could ask for some advice. I’m 32 yrs old, with a strong family history of breast cancer and have been thinking about preventative surgery for a while.

My mum passed away Oct 04 aged 56, and there are several of her aunties who died aged 40+ from breast cancer (her own mum died aged 31 unrelated and therefore we don’t know if carried gene). We were referred to the Genetics team in 2000 and mum’s DNA tested with no BRCA mutation identified. Mum’s DNA was re-tested last year and again no BRCA mutation identified. I know this is good news, but with the strong family history of breast (and other) cancer I still feel like a moving target, and having been there through mum’s determined battle I know I am not brave enough to face it again.

I know that I am in a lucky position to have a choice to be deliberating over, but its still a dilemma as to what to do. I’ve had a few lumps tested since age 25, all `benign fatty lumps’, and had my first mammogram in 2004 when a shadow was inconclusive on a trial 3D ultrasound scan. Because there is very little screening for my age group, and my next mammogram I believe will be age 35, I am considering surgery now. I have discussed this with the Genetics Counsellor and my Consultant (who was also mum’s Consultant) and he advised me to have children asap if that’s my intention, and then afterwards we will look at preventative surgery and reconstruction. My dilemma is, why wait? I’ve read conflicting reports about whether breast-feeding actually does significantly reduce risk, and as pregnancy causes mammary gland cells to divide and differentiate which increases risk at that time I wonder if I am in a better position now to consider surgery?

I am not eligible for BRCA testing myself and have thought about funding a private test as I know that if it proved positive I would definitely have the surgery, but if negative I still think I would be continually wondering whether I should have surgery anyway as there obviously is a family history – and who’s to say if more genetic links/proteins will be identified in the future which predispose to breast cancer. I am thinking of going back to my consultant privately as I feel so selfish taking up his time talking about my dilemma over the decision, when I know how it felt sat with mum at appointments and a waiting room of patients that don’t have the luxury of choice. The Genetics Counsellor says she knows it’s a real dilemma, but suggested after childbirth may be better, as my risks are higher from 40+ because of the age of an affected relative.

I really don’t know what to do? It’s been a rollercoaster since mum died, a lot has happened, and a friend said I should wait as its all too soon. But I know I’ve been thinking about preventative surgery since I was in my late 20’s, so its not a knee-jerk reaction. I was very involved with mum’s illness and support from the start and made myself aware of what was out there and what questions to ask, so I know I’m the sort of person who goes straight to the issue rather than avoids it. I just find at the moment I have a bad week where it’s burning at the forefront of my mind, then I ease off, then before I know it its back there and I just don’t know if I can have it hanging over me.

Having looked on these really helpful forum pages I know that the surgery is not without complications, and I realise that I have a lot to find out about the surgery & reconstruction options before I make a final decision. I know I would have to opt for reconstruction at the same time for psychological reasons (mum had seven operations over six years to include a chest re-section, and in the last year developed a terrible fungating wound to the whole area which was awful to watch her suffer through). I haven’t been able to face self-examination since my first lump and mum becoming ill in the same year, and although my consultant examines me every six months its not a scan or enough reassurance.

If anyone has any advice about which way to go, or where to get info I would be really grateful to hear. Sorry for rambling on.... and just to finish by saying my heart truly goes out to everyone on this website.

myplek
Member

Re: advice needed for prophylactic mastectomy

Thank you once again Thanks to you both for all your advice! I\'m going on a short break before the op but I will definitely let you know how I get on afterwards.

suefab
Member

Re: advice needed for prophylactic mastectomy

Hospital Hi Myplek,

Can\'t really add much that Sandra hasn\'t covered but would definitely agree with front-buttoning pyjamas. I also took my mp3 player in so that I could listen to music if I was too tired to read, and took my own soya milk & margarine in as I didn\'t think hospital food would be good for vegans!

I was surprised at how pain-free I felt after the op. I came out of hospital on the Wednesday and started doing bits of work again the next Monday (I work from home).

All the best & let us know how you get on.

Love
Sue

smugergirl
Member

Re: advice needed for prophylactic mastectomy

Hi Myplek A few ideas to take into hospital are button up pj\'s, some wet wipes, a mini hand held fan/cooling mist spray, a roll on deodarant (as you wont be able to use a spray) crossword book. What hospital are you having you operation at? I had my done at Guys in London
Take care
Sandra x

myplek
Member

Re: advice needed for prophylactic mastectomy

Thanks again Smugergirl Its encouraging to hear that you didn\'t need much pain relief. I realise though that everyone is different. I will take in a sports bra then. I hadn\'t thought about a sports bra!

Yes, I\'ve been told that I will be in for 5 days, so I\'ll remember to take in reading material. Any other ideas for the hospital stay?

I\'ll definitely let you konw how it goes. Thanks again.
Lou

smugergirl
Member

Re: advice needed for prophylactic mastectomy

Hi Myplek Thats what we are all here for to help one another, I only wish that I had found this site before I had my double mastectomy.
My surgery was straight forward, and I did not need hardly any pain relief, my wounds were only slightly swollen and bruised, and the drains were only uncomfortable of a night when I went to sleep, as I could not turn over on either side, the breast care nurse advised me to take in a comfortable sports bra, and on the last day that I was in hospital she fitted me with comfy\'s (a soft breast like shape thats fits in your bra) you will be fitted for a proper prosthetics after your operation, as your wounds need to heal, and it would be too uncomfortable to wear them before anyway. i was in hospital for 5 days, so make sure that you take in some good reading material, although I must admit I met some lovely ladies, and I think we done nothing but chat all day long. Make sure that you take it easy for the first couple of weeks, I felt very tired at first,but was fully recovered after about 6 weeks.
Nothing sounds silly when you are going through something like this, and you need all the help and information that you can get. If you need anymore questions answered please do not hesitate.
Good luck with your operation, and let us know how you are doing.

myplek
Member

Re: advice needed for prophylactic mastectomy

thank you! Thank you so much! It is so reassuring to have 2 people really understand where I\'m coming from. Although I have thought about this for a number of years, I never really discussed it with anyone other than my husband. I think this is why friends think it is a sudden decision. As you say, I want to be around to see my children grow up too.

I am also not having an immediate reconstruction. My surgeon tells me that because this is elective surgery it is fairly straightforward and recovery should be shorter. How did you find the recovery? Did you need much pain relief initally?

Also, I have been told that the prosthetics nurse will visit me in the hospital. Was this the same for you? Do I need to take a bra along for the prosthesis fitting. I presume the wounds will be swollen and chest drains in etc this could be difficult. Apologies if these sound silly 🙂

Thank you again for your posts.
Lou

smugergirl
Member

Re: advice needed for prophylactic mastectomy

Hi, I had a prophylactic bilateral mastectomy in September 2003, and dont regret my decision for one minute, I must admit it took a lot of soul searching, but I felt that I could no longer live with the constant worrying, and checking. I too have a strong family history of breast cancer, and lost my Mum and 2 sisters to this awfull disease. I too felt like you and did not know what to say to people, but at the end of the day it is your decision that matters, and you that has to live with the fear of getting breast cancer. When I did tell anyone, the reaction that I kept getting was \'you are brave.\' but I felt that it was my sister who was brave going through the treatment for cancer at the time, I had my double mastectomy. Just be positive and say that you are doing it for yourself, this is the one time that you can afford to be selfish. I told everyone that I wanted to be around to see my girls get married, and have grandchildren, something that my sisters never had the chance to fulfill. I did not have reconstruction at the time, because I just wanted rid of my \'boobs\' but after 2 1/2 years found the prostetics too hot and heavy to wear especially in the summer, so in March of this year I had becker implants put in, another good decision.... So just go ahead and do what is right for you, and I honestly feel that a great big weight has been lifted off my shoulders.
Sandra xx

suefab
Member

Re: advice needed for prophylactic mastectomy

Prophylactic Mastectomy Hi Myplek

Our situations are quite different - I had my first mastectomy after being diagnosed with bc, then had a second prophylactic mastectomy when I found out I carried the BRCA1 gene. Everyone I spoke to about it understood entirely that I didn\'t want to go through again what I\'d been through already.

I know some people think it\'s drastic to go down the mastectomy route. The problem with screening though is that it will only find cancer when the cancer has already formed, and then surgery and treatment (chemo, rads) will be necessary. By going through preventative surgery, you\'re cutting the chance of that down to a minimum.

If I could turn back the clock and had the chance to have preventative surgery before diagnosis, I\'d do it without a second thought.

Also, since having my second mastectomy, I find I spend less time worrying about recurrence so am more able to get on with my life again.

Hope this helps a bit - and all the best for your op. Let us know how you get on, and if you have any questions before you go in.

Love
Sue
x

myplek
Member

Re: advice needed for prophylactic mastectomy

advice needed for prophylactic mastectomy I am scheduled to have a prophylactic bilateral mastectomy next month due to a very poor family history of bc. I am finding it really difficult to tell close friends and family - having to explain the decision etc. Anyone else found this really difficult and how did you deal with it?

myplek
Member

advice needed for prophylactic mastectomy

advice needed for prophylactic mastectomy