I’m 30 and have just found out I’m ‘high risk’, mum and cousin have BC, paternal grandmother had it, also 2 other cousins, one 28, one 38. My cousin tested negative for BRCA1/2 gene but geneticist thinks it could be a yet undiscovered gene due to young ages of 2 cousins at dx. Only screening options are annual mammograms from 35 - MRIs not available at present. I feel this isn’t good enough and can’t cope with the constant anxiety (I have 2 small children, 3 and 11 weeks) so i’m pretty sure I want preventative surgery. My husband has been amazing but most people look at me like I’ve lost the plot when I tell them. I know I’m very lucky to have the option and that I haven’t got cancer but I still feel like my head is going to explode. Also worried about how I will look after surgery and reconstuction. Anyone had a similiar experience? Please help, advice needed! x
Hi Penguin
I didn’t even think about it or make the link when two of my aunts (mother’s sister aged 63 and father’s sister 41) got breast cancer that this could run in the family. I now have breast cancer and had I realised that I could be screened as a result of two close female members having it - I may not be in the situation I am in now. How I wish I wish I wish somebody had said something to me earlier about being screened then I could have done something about it i.e surgery or that my breast cancer could have been picked up earlier.
Anyway if I was in your situation and based on my situation now - I think you are in a really fortunate position. You can make an informed choice as to whether to have surgery or not bearing in mind your family history. I have heard of many people who have had preventative surgery and reconstructions and it certainly made them feel relieved and put their mind at rest. I certainly wouldn’t worry about what other people think; this is about your life and your future free of breast cancer and the worry of developing it.
I hope this helps a little.
Best wishes RebzAmy x
Thanks RebzAmy, your message really helped. You’re right that I’m in a fortunate position, having a choice before (if) anything happens. This website has really helped and I feel loads better. I don’t know if you’re having treatment but good luck with everything, take care x x
Thanks Penguin
I’ve just finished my chemo. Have op in 1 1/2 weeks (mastectomy) then radiotherapy and already on herceptin (which I’ll be on for a year).
Wishing you all the best
Rebz xx
Hi Penguin
I think you are being very sensible with regards to this issue - I am in different situation to you - I’m having treatment for breast cancer - lumpectomy + node removal, just finished chemotherapy - and I am having a prophalytic mastectomy in a few weeks. This is classed as prophalytic because I already had my tumour removed with clear margins so is not part of treatment rather to reduce my chances of recurrence.
I wouldn’t wish this awful experience (esp the chemo) & worry for the future on ANYBODY. I have two children under 5 and am having this operation so that I do everything I possibly can to be there for them growing up. I don’t have any family history of the disease but I had any idea I’d be at risk, knowing what I know now, I’d certainly have had preventative surgery.
My husband too is fantastic -my rock, he doesn’t care if I’m bald and got one boob - as long as I’m here. Please don’t worry about others reactions - most of them don’t have the first idea where you’re coming from.
Good luck with everything in the future I hope you get all the support you need with whatever decision you make.
Take care
xx
Hi mammabee,
Thank you so much for your kind words, I nearly cried when I read your reply! It’s so great talking to people who know where I’m coming from. My mother in law hasn’t mentioned the issue since she was told 3 weeks ago - she’s one of those people who thinks if she mentions the word ‘cancer’ she might get it.
Good luck with your surgery, are you having reconstuction? It’s great your margins were clear but I totally know what you mean about doing whatever it takes to be there for your children - my youngest is only 11 weeks and my hormones are still all over the place!
I’ve been told I’ll have counselling before surgery and my genetic counsellor has been fab.
Thanks again for your support x x
Hi Penguin,
You nearly cried reading Mammabee thread I have just cried reading yours how on earth are you coping with an 11 week old baby poor you this should be such a happy time for you isn’t this disease a bitch. Can you explain to me what prophalytic means.
Good luck to you and your little one, i have a 11mnth and 2.5 year old and they are my driving force.
With love
C
Hi penguin,
Hi my name is michelle and i am having a preventive mastectomy because i am also classed as high risk. I have a strong family history and they found pre cancerous cells in both my breasts. i know how you feel i have been going through this since feb and my brain feels like it going to explode 2 it’s always on my mind. the thing that gets me the most is the fear of thinking is today going to be the day i get it. like you i am young 24 in fact it’s my birthday today and i have 2 kids 5 and 6. My partner has been great to i worry that after it is done he will look at me different but he don’t care he just wants me to be healthy. I am going to bilateral and tram flap recon at the same time. I to am a bit worried about how i will look but at the end of the day i would rather be here for my kids and my parnter a few scars don’t bother me. I hope i have been some help and i am here if you need to talk.
Take care
michelle
.x.x.x.x
C -
Prophylactic means preventative.
My mum was diagnosed the same week I found out I was pregnant, then the baby was born and I thought it would be a new start for all of us but now this. I don’t mean to sound sorry for myself, I know that I’m very lucky to have a choice in all this when so many women haven’t.
My eldest was 3 last week and I’m finding it hard trying to be ‘normal’ in front of him. Your kids are so young too - you don’t say if you have BC? Hope you’re doing ok anyway. Take care x x
Michelle,
Thanks, you have been a great help and happy birthday for yesterday. You are so young to have all this hanging over you, I can’t imagine how I would have coped when I was 24. Pre-cancerous cells, is that the same as DCIS? How did they find it? Did you have a mammogram? When are you having surgery? I know preventative surgery is seen as drastic so they won’t let you rush into anything but I want them taken off now!! I’m breastfeeding and every lump or twinge sends me into a panic.
Same here, I’m not bothered aboout scars, I already have 2 c-section scars and a belly full of stretchmarks anyway so a few more don’t matter. For some reason I was really bothered about not having nipples but then I found out you can buy stick on ones which cheered me up loads! I’ve read so many positive comments about reconstuction on this website.
I guess we’re lucky in that we have had children young (ish, in my case!) as I have heard of surgeons telling women to complete their family and then come back for surgery.
Good luck with the op, take care,
Zoe x x
Penguin
I am not having an immediate recon - I would like to see if I can cope without one first, get my head around it all. It’s such a major op and I feel I’ve been through enough this year.
Re nipples I think you can have them tattooed on as well.
Take care & good luck with everything
xx
Hi penguin,
Hi again I hope you are feeling better now after chatting to all of us. My cells they found when i had a total duct extraction i had bleeding from both nipples. So i had a op to have then removed and thats when they found them and they were quite advanced. I have what they call a typical ductal hyperplasia quite a mouthful i know.since a made my decision for a mastectomy i have seen alot of plastic surgeons and breast surgeons and still have to see some more. This is quite a long process but you just have to try and bear it it’s very hard but you will get there in the end. I know what you mean about wanting them off straight away i feel the same every time they hurt it’s a reminder of what is going on. and me being so young a know it’s not something i would like to decide but hey i am. The way i see it is we have a chance to catch it before we get it so i feel quite lucky and i will do whatever i can to stop it.I should be having my op next year sometime only 2 more visit to the hospital before i have it done but i don’t know how long that will be before the appointments come through. But trust me you are strong enough to get through this i know it hard to face losing your breast but if u ever need a chat just drop me a line i know what you are going through.
take care
Michelle
.x.x.x.x.x.x
Hi Penguin, I am sorry to hear that you have found that you are high risk,I have a gene identified and it took me ages to begin to get my head around it, and understand the implications. I am going in for surgery next week, and have had a few people looking at me as if I have lost the plot entirely! so I know what you mean there!
Give yourself time to think about everything and there is a lot of information out there about ‘high risk’ etc and vatious forums to make contact with others in the same boat, which I have found really helpful, good luck.
Hi Michelle,
Thank you, and same goes for you, I’m here anytime you need to talk, not sure if it’ll help but I’ll do my best!
Julro, thanks and good luck with your surgery, let me know how it goes.
Having a bad day today. I’ve had problems with health anxiety in the past but I’m ok now, it’s been under control for about a year, but some of my friends and family think my decision to have surgery is purely anxiety based and I should see a phychiatrist rather than a geneticist. My husband says he would have his legs cut off if there was a risk of not seeing our children grow up…does that make him mad too? Aarrghh, I could scream. Sorry for moaning everyone, deep breath, count to ten!!
Zoe x x
Just to add, seeing your remark there about people thinking you should see a psychiatrist rather than a geneticist,I had to see a psychologist as part of the process, and I think that that is common hearing other womens experiences too.Other peoples attitudes and remarks can make things a lot more difficult…
Yes, they have explained to me I’ll have to see a counsellor a few times, which is for the best, they can’t have people jumping into such a big decision without understanding the implications etc
Zoe x
Hi Penguin
You may have just seen my other post.
I am 33 and lost my sister to braest cancer in march, I then got married 2 months later as it was a big wedding that was hard to rearange, then found I was brac1, then was recomended surgery. It has been extremely hard and stressfull but I made the decision to have a bilateral mastectomy, with tissue expanders and implants. It was a big shock as we were trying for a baby but given that my sis got cancer at my age now I am taking no chances
Everyone is different and some people need alot of time to think. At Nottingham the breast care nurse and surgeon were very frank with me and after speaking to them I felt I just didn’t want to risk my life. I want to have a family and live a long life.
I want to wish you lots of luck with this huge decision.
I am usually on another forum so may miss your posts but I will try to keep checking this site too.
This is the link:
phpbbserver.com/breastcancer. There is a section on family history and genetics.
Good luck
Take Care
katie xxxx
Hi Katie,
So sorry about your sister, it must have been so awful for you, especially knowing that you definitely carry the brca1 mutation. I really hope surgery gives you some peace of mind.
I registered on the other server last weekend, you have replied to me on there too, I am Zoe on there. (I registered as Penguin when my mum was dx a year ago, don’t ask me why!)
I read your ealier posts and it’s scary that only 2 of your family members have had BC and you are brca1. There must be people in similar situations who don’t take advice. Friends and family think I’m mad for considering surgery, but surely it wouldn’t be an option if it was completely unnecessary. People keep telling me bc in my family a coincidence but I have been told otherwise by a genetics team so have to take their word for it!
Thank you for your support,
take care,
Zoe x x
Hi again Zoe
Thanks for that.
Good luck with all your decisions
Katie xx
hi
I have had prophylatic bilateral mastectomy Septembe of this year. I am 29yrs of age, and tested positive for BRACA1 gene. I have had a lot of people in my maternal family with BC and OC. I opted to have reconstructionat a later date, due to risk of infections etc…
If you want to chat then i am here, I lost mum, and her mum through BC & OC so i made the choice of having this surgery done. I am still considering having my ovaries removed due to the high risk.
Hope you feel a lot better soon
Take care
Tracey
Hi Tracey, thanks for replying.
So sorry about your mum and other family members.
How did you find the surgery? I have 2 very young children so am worried about recovery time etc.
Have they suggested what age you can have your ovaries removed? There is no OC in my family but unsure if I am still at risk due to link with BC, yet another question for the geneticist!
Thanks for you support, it’s brilliant to chat to other people in a simlilar situation.
Zoe x x