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Preventative mastectomy following bc diagnosis at young age?

14 REPLIES 14

Re: Preventative mastectomy following bc diagnosis at young age?

I was diagnosed in Dec '11, was having the biopsy a day before my 35th birthday. It took nearly 5 weeks to know what it was, but had a mastectomy week before xmas, was hard as i have two sons, they were 6 and 22 months at the time. Had to have full node clearance in Jan '12. I think that i dealt with it better because i had the kids to stay strong for. I had chemo 3 Fec & 3 Tax, also 15 rads which involved me staying in hospital as it was too far to travel every day so that was hard, but I came through it. I think that I cope really well with one breast, but I am wondering what to do to have recon or not. I am like you, paranoid of the other breast, and as the nurses said my bc wouldn't necessarily show on mammogram as i had lobular, I am now waiting for the results of an MRI which I had two weeks ago, fingers crossed x

Re: Preventative mastectomy following bc diagnosis at young age?

I was diagnosed Dec '11, seems a long time ago now!! Had mastectomy and lode clearance, 3xFEC & 3xTAX plus 15 rads. I worry constantly just like you and wonder if asking for the good side to be done would be best. I am like you, first young person in the family, I was having biopsy day before I was 35. There were 7 of my family that died of cancer of some sort but I cannot be tested either for some reason, would like to for the sake of my younger family. I am trying to get used to my body like this but am wonderng what to do whether to have recon or not??
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Re: Preventative mastectomy following bc diagnosis at young age?

Hello,
I was diagnosed in May 2012 at age 35 have two girls a 4 & 2 year old think when dr told me i was in denial and kept expecting the hospital to call me to announce it was all a big mistake an administrative error and that it wasnt me,instead after about five different sample tests i was adviced to have a bilateral mx as left boob had tumour and right boob had dcis which i was warned was too risky to keep so its been 9 months that i have been living breast free,i was told immediate recon or expanders or anything was not possible due to me having to have rads aswell. I would say the operation and recovery is pretty staright forward and that the winter months are fine as you can hide away under thick jumpers etc its only now as summer approaches and bikinis are in every shop window display that i feel the loss of them and get upset when i see women advertising bras and cossies etc. I dont feel like a woman anymore and cant bring myself to look in the mirror as its just something i dont want to see but im sure if i had kept my right boob i would be obsessing and checking it all the time but even with a bilateral mx it doesnt change how you feel i spend my days just constantly worrying that it will come back somewhere else and what things can i do to reduce the chances. Its a very hard descision to make but if you feel it will put your mind at ease then go for it unfortuantely once you have been hit with something like this it feels that that feeling is never far away.

Re: Preventative mastectomy following bc diagnosis at young age?

Hi rz
I too decided to have both off at the same time, five years ago now. I have not gone for recon, couldn't face anymore surgery, I am happy as I am. I have found that Genie bras, the ones that have the inserts are magic! Take out the inserts and pop in your prosthesis(ses?) and voila perfect. I am 36C and they work fine for me, you just carefully ease your boobs in the pockets and off you go, comfy and natural looking. They don't seem to fall away from your chest when you bend forward as much as other bras. Another big thing for me is the fact they don't cut in along my ribs where I had rads and am still a bit tender. Hope this helps.
Jennie

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Re: Preventative mastectomy following bc diagnosis at young age?

I am 35 and chose bilateral surgery last year after bc diagnosis. I am 100 % happy and relived with my choice.
Immediate reconstruction was not possible as I was to have radio so having had time to think I may not bother. I check along my scars every week which gives me great comfort as so far no suspicious lumps which is fingers crossed never going to happen as my risk of bc reoccurring in the breast is very low as I now don't have any!
I have come to the conclusion that the mental rather than physical effects of cancer are way more tricky to deal with. So if you feel more at ease and can reduce your worry of bc returning by having both breasts removed go for it!
9 months on from surgery I have no pain just some numbness but to be honest being a young working mum I don't give my self too much time to think just live and enjoy 🙂 Although if anyone can recommend decent bras and swim wear please let me know. One positive is no need for bras or boobs when running anymore!!
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Re: Preventative mastectomy following bc diagnosis at young age?

Hi I can't help immediately but just to say that I have just come to the same conclusion. I had BC 4 years ago and chemo, herceptin. I still think about it every day and got in a real state about my mammogram just gone - so much so they got it checked while I was there. I am thinking of having a preventative second mascetomy also - I see my consultant next in March so want to get it booked in . However my first mascetomy was with implant and it has slipped - not a good look - and I went through process of booking in to have it changed by a DIEP reconstruction, then got scared by the hugeness of the op. So now thnking of having implant recon in both again. Be v interested to know what you decide.
susyp
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Re: Preventative mastectomy following bc diagnosis at young age?

Hi I can't help immediately but just to say that I have just come to the same conclusion. I had BC 4 years ago and chemo, herceptin. I still think about it every day and got in a real state about my mammogram just gone - so much so they got it checked while I was there. I am thinking of having a preventative second mascetomy also - I see my consultant next in March so want to get it booked in . However my first mascetomy was with implant and it has slipped - not a good look - and I went through process of booking in to have it changed by a DIEP reconstruction, then got scared by the hugeness of the op. So now thnking of having implant recon in both again. Be v interested to know what you decide.
susyp

Re: Preventative mastectomy following bc diagnosis at young age?

Hello,both myself and my 28yr old daughter had double mx with imm recon.Mine was after diagnosis of bc and my daughter had hers after being tested positive for brca1.we are both happy with results,my daughters op was july last year,she is now back at work,has a little ache and some pain now and again but is mentally much happier now the risk has been reduced drastically,its a massive decision ,you need lots of advice and help to come to a decision which is right for you,good luck,
love Di.x

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Re: Preventative mastectomy following bc diagnosis at young age?

Hi ya I'm 36 now and I was diagnosed with BC when I was 32. I have two young girls aged 6 & 10. I know how you feel 100% and I wish you all the best and I can only tell u my experience and it is a frightening time but a time i have had to be strong for my girls and they keep me going every day. I had a re occurance after my first mastectomy, chemo and herceptin !! so i had an axillary clearance of my nodes and chemo every week for 12 weeks to make sure they got it all? Like you I was thinking please take the other one as I'm so scared every day and I can't cope very well with life and kids as well, but i had scans and there was no reason for me to have unnecessary surgery at this time, so I had reconstruction after a long think about it and its great but a hard recovery from the tummy tuck which is fine now !! So I had two boobs now and a flat stomach and life was great, then my sister called on boxing day 2012 and said she had BC !!!! I was so shocked but I was there all the way and she is now through the worst of it and recovering but doctors decided to give us the BRCA gene test and unfortunately we both tested positive so we have both just had our ovaries removed and we are have a preventertive mastectomy and immediate reconstruction in march 2013. I am hoping this will be the end of an era and the start of a great future. I wanted the double mastectomy from day one and when I asked they said "its not necessary at this stage" so I thoughit that was fair comment. If only we new back then five years ago it could have saved a lot of heartache and pain for me and my girls ! Please do what you have to do as only you can make that decision , good luck and keep us posted , we are here for you x

Re: Preventative mastectomy following bc diagnosis at young age?

Hi Beckster

So sorry you have been put in this situation at such a young age. It's easy for me to say that if I was in your position I would definitely go for the double - I'm 61, and don't have any young children or maybe the prospect of having more children. As everyone has already said, it is a decision only you can make. All I can say is if you are thinking about it more and more, maybe it would be the right move for you. How does your partner feel about this? I can only wish you luck, and hope that whatever you decide it will be the right choice for you. hugs and lots of love pg xxx
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Re: Preventative mastectomy following bc diagnosis at young age?

I am also considerng a bilateral mastectomy. I had DCIS at the age of 31, treated with rads and lumpectomy. 21 years later, I have a new primary in the same breast. It is much more aggressive, and has spread to my nodes. I have also found out that I had areas of ADH in my "good" breast, which was reduced in 2008 in order to achieve symmetry. I was not informed about this, although the general practice is to monitor closely. Am now considering going for bilateral so I can protect my lymph nodes on that side. Unfortunately, I'm not sure that reconstruction will be an option in my case, due to my previous rads and low body fat.

I fully understand where you are coming from, Beckster33. Whichever decision you come to, it has to be something you feel is your own, and one you can live with. If I had been brave enough to take the path you are considering when I was your age, I think it is unlikely that I would have ended up in the situation in which I now find myself.

Wishing you the best of luck,

Margaret

Re: Preventative mastectomy following bc diagnosis at young age?

Bc is a horrid disease, but I think especially so when you are so young (you are the same age as my daughter)- big hug!
I'm somewhat older than you at 55, and was dx January this year, but I chose to have a prophylactic mx alongside the one required for my bc, with immediate DIEP recon. I made this decision primarily in order to reduce my risk of getting bc again. Having bc once does increase your odds of getting a new primary - it's a 1:5 risk as opposed to 1:8.
Whilst I doubt I will ever stop worrying about my bc reoccurring, I don't worry about getting a new primary. Although I do accept there remains a very small risk - but I can live with that.
Good Luck,
Sue x

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Re: Preventative mastectomy following bc diagnosis at young age?

Hi The Beckster33
I'm so sorry you have had such a lot of trauma at such a young age. I totally understand your constant worry.
Although I am quite a bit older, I elected to have a bilateral mx although one breast was healthy. I was first diagnosed in 1998 at the age of 43. I was treated by lumpectomy,node clearance, rad and hormone therapy. In 2010, I discovered a lump in the same breast. It was another primary. When they told me I would need a mastectomy and chemo, I immediately asked for a bilateral mastectomy. My reasoning was that I was more likely than the average woman to have bc in the remaining breast. Also, having been diagnosed twice, I wanted to do everything I could to prevent it coming back.
The consultant told me it was very wise. I just know it was right for me. It is a huge decision and a very personal one. It is now 2 years since the op. It has not taken away all my fears but it has helped to allay them somewhat.
I wish you luck with your decision. It has to be your own.
Lots of love,
janie5

Re: Preventative mastectomy following bc diagnosis at young age?

Hello Thebeckster33


Whilst waiting for replies may I suggest you contact our helpline who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.


Best wishes


June, moderator

Preventative mastectomy following bc diagnosis at young age?

Hi all,
I was diagnosed with BC 2 years ago when I was 28 and breastfeeding my youngest. I had WLE, node clearance, TAC chemo, radio and Herceptin. I completed all of my treatment earlier this year. Since then I have had to have surgery to remove what was found to be a benign lump in my 'good boob' and I am getting another lump in my 'bad boob' checked out on Friday.
I have been thinking more and more about having a bilateral mastectomy to reduce my risk in the future. Has anyone else thought about this or had it done? I find myself constantly checking for lumps and worring about it all the time. I know it does not erradicate the risk completely but it does reduce it a lot.
I don't know if I have a BC gene as they wont test me as I'm the first in my family (although the family before my generation is mainly male and there are other types of cancer in the family).
Any thoughts would be appreciated xxx