not coping too well
not coping too well Is there anyone out there who has been on the breat cancer ’ rollercoaster’ diagnosis, surgery, treatment, tablets. Then told I am BRAC1 positive and 4years down the line should have more surgery ovaries and other breast should go.as preventative measures. The genetic councellor told me how lucky I am that there are preventative measures in place, I just don;t see it that way is there any one on this site that has had similar experience.
Help and Support Hi Suekam
I am sorry to hear you are having a difficult time. Often with concerns like this our helpline can be the best source of information and support.
You can call the helpline on 0808 800 6000
Monday to Friday 9am-5pm and Saturday 9am-2pm.
The team is able to talk about both technical and emotional issues surrounding breast cancer and breast health.
They can talk through the complexities of different treatments and conditions and I am sure you would be able to clarify some of the questions you have.
I hope this helps and please carry on posting to the forums as I’m sure you will receive plenty of support and advice here.
Best wishes
Host
Breast Cancer Care
not coping too well Thank you Breast Cancer Care host for your kind reply at the moment I am not too good at talking . Very emotional so it is easier to type than talk for the time being. Just hoped that someone might pick up the thread and say that happened to them. Have noted the number and will get in touch when I am more in control. Again thanks for your reply.
Hi Suekam,
I really do feel for you as I’ve been there myself.
I was diagnosed with BC 2 years ago at 35 and had mastectomy, chemo and radiotherapy. As my cancer was ER/PR negative, I couldn’t take tamoxifen or anything similar. I then found out I was BRCA1 positive and was recommended further surgery.
My position was slightly different to yours as I was already on the waiting list for reconstruction (couldn’t have immediate recon as I needed radiotherapy and my cancer was very aggressive so surgeon didn’t want to wait). I spoke to my plastic surgeon and he agreed to do a second mastectomy at the same time as my reconstruction, and then to reconstruct both breasts at the same time. It was a long operation (over 8 hours) but worth it as it meant it was all over in one go.
I also saw a gynae consultant and asked about removing my ovaries. The genetic counsellor had said I should wait till I was over 40 to decide about that, but the consultant said he’d recommend I have my ovaries removed ASAP and booked me in as soon as he thought I’d be recovered from my reconstruction. It means I’ve had 2 years absolutely full of treatment and surgery - been admitted to hospital 5 times now - but to be honest, I’m glad it’s all over and I’m glad I did it all now, rather than later. Now I feel I’ve done all I can to stop it from coming back - and that’s such a huge relief.
I wouldn’t say anyone with a positive BRCA result is “lucky” as your councellor said, but I am glad I’ve had the chance to do all I can. It is a huge deal though, especially after everything you’ve been through. And everyone is different, so you have to do what’s right for you. As Helen said, there are options other than surgery too. Would it be possible to speak to another councellor?
Do get back in touch and let us know how you’re feeling and let us know if you want to “chat” more. You’re definitely not alone here!
All the best
Sue
x
so grateful Thank you both very much for replying in such detail. It has made me feel so much better just reading and knowing you both understand .Which is what I was looking for. I am 54 diagnosed at 50 and since treatment finished have been on Tamoxifin for 3 years and just this year on Femara. Oncolgist just said what did I want to hang onto my ovaries for at my age . As I am sure you will understand that was not my point I was just asking as an oncolgist did he treat many women in my situation and of the gene activating again. I have an appointmnet with a gynea next month and I will ask him about screening. It is just the idea of more operations after getting 4years down the road and thinking this is okay., I am getting there. Well apart from the side effect of Femara and bones/joints!! but that is another moan. Again thank you thank you for replying it means so much to me Sue
surgery Hi suekam,
I have been through all of this, I found a lump,had to have a mastectomy,chemo radium,therapy,just getting to end of treatment then my mum found out she had terminal breast cancer.
unfortunately she passed away 6yrs ago.
I have been tested and have brca2 gene,so has my sister so she went for the implants so she hopefully won"t get cancer
I went for transflap reconstruction which was fine,but when i was tested later and was carrying the gene,I opted for the left breast to be removed plus my reconstruction so now i have nothing,but thats fine.
I have also had a complete hysterectomy,cervix and ovaries removal, so at the moment after several ops I"m ok.
I would have had a implant in my left breast but i got an infection in it,so decided to have it removed and just have nothing,it doesn"t bother me,I"m in my 40s,I"ve been through all the emotions,thinking my husband wouldn"t love me but he does,so I"m lucky. You will get through it,