Anxious about surgery

Hi Ali86 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Wishing you all the best with whatever you decide to do.

Thank you! I realise my questions are a bit open-ended, but if anyone has experience of the surgery and recovery, I think this will be helpful as I am quite nervous about the prospect

Hello 

I also have Brca2 variant. I was diagnosed in Sept 21 with grade 3 stage 3. They didn't know at first about the Brca2 so I initially had breast conservation surgery then chemo and radiotherapy. 

I then had a 1 year course of olaparib. 

However, since this I have had an oophorectomy and 4 weeks ago a double mastectomy with reconstruction. 

The best decision I ever made. I would urge anyone to take control and that's what the surgery helps with. Chemo is awful, far worse than the surgery. And not worrying about ovarian or breast cancer recurrence, although it never goes away, is life changing. 

The mastectomy was uncomfortable but not overly painful. I'm back walking everyday and getting stronger every day. 

It's a big decision but in my experience well worth it. 

Not sure if this helps but I hope so.

Good luck and be kind to yourself 

Jxx

Hi 

I’m sorry to hear about your sister. 
I am a BRCA2 carrier, 47 years of age  , unfortunately I am not aware of my family history as my aunties/ uncles / grandparents are from abroad and they died at an early age but unsure of what?

my mother died of lung cancer 2 years ago and two months later I had the diagnosis  of the BRCA. My sister is negative and my other siblings do not want to be tested. I have 3 young kids under the age of 10. 

Initially,  I opted for surveillance but then changed my mind and went for the sapingo oophorectomy. ( both ovaries and fallopian tubes out) . After seeing a few people being diagnosed with cancer . As well as I had a few lumps that made me think is it really worth taking the risk? 

The Sapingo Oophorectomy was key hole surgery and went very well ( day case). The recovery went well just found it difficult to walk around due to pain , was walking at snail speed the first 3 weeks . No lifting . use a pillow and hold it on your abdominal area when you cough that helps.  Adter 3 weeks it got a lot easier. Had some bleeding but they give you a number you can call to speak to someone . Any heavy bleeding or pain they advise to go straight to AE and ask for a CT scan . Your sex life changes and becomes more painful. 
no periods which is great. 
headaches ‘? From induced menopause but settles.
I decided to stay off HRT as I wasn’t getting any bad menopause symptoms . 
now fully recovered and feel back to normal. 

Now waiting to have bilateral breast reconstruction, which I am very scared. Plus I have heard people say they feel numb and the sensation is never the same . It’s a lengthy operation and mine is in two parts . I feel nervous and just would like to know what to expect post surgery if anyone has any advice esp due to having young kids . Are you able to lift your arms up and dress yourself or will you require help? I know it will be painful but any tips that maybe useful? 

Hi Ali,

Firstly, I am so so sorry to hear about your sister, you must have had so much going on in your family that it's no wonder you haven't gotten round to really thinking about surgery. It's a lot to get your head around, so don't heel guilty at all.

I had breast cancer in 2021 when I was 35, and in 2022 found out I have a brca1 mutation. We later discovered that my sister also carries the faulty brca1 gene too, but she never had breast cancer (like yourself). I had a preventative double mastectomy without reconstruction in March 2023 and my sister had a preventative double mastectomy with implant reconstruction in July 2023. Similar to your situation, once my sister saw what I went though, she didn't want to take the risk.

Choosing to have a mastectomy was a big power move for both of us. We both feel like we have taken big action to protect ourselves and have taken control and can now relax a bit without the dark cloud of 'what if' hanging over us constantly. I know that my sisters thoughts were very different to mine before her surgery - probably like yourself, its strange to get your head around having such a big operation when you've never been sick!! 

Recovery time can vary a lot depending on the type of reconstruction you have and your state of health. My sister's recovery was probably about 6-7 weeks (the worst part was the drains at the beginning) with immediate reconstruction with implants, and mine without any reconstruction was around 4 weeks. We are both back to our 'normal' lives and activities now and are very active and happy without any pain or issues.

There is a charity called brcachat who have a very good mastectomy gallery (if you want to view different reconstruction results), info about surgeries, stories from others and even meet ups around the UK to meet other people with genetic mutations and to discuss surgeries etc, which might be useful for you to take a look at?

If I can help to provide any info or insight from me and my sister, don't hesitate to ask!

I wish you the best of luck x

Hi Rose222

Thank you so much for your reply - it's interesting how similar our situations are, and great that you have taken control of your diagnosis and had the surgery. The recovery times for both of you sounds manageable and great to hear that you are back to your normal healthy selves.

I think seeing what my sister suffered has really brought it home to me, I just need to overcome my nervousness about the survey itself and the potential risks. I didn't know about the brcachat charity, that's amazing - thank you for sharing

Your words have been really supportive, and have made me feel less isolated about the prospect of surgery, Thank you xx

I think it's perfectly normal to feel anxious about the surgery, it's a big decision to make and a really big thing to do. In the big picture of a long life, you will be protecting yourself and it's definitely worthwhile, but it doesn't mean it's easy!

The actual operations for me and my sister were pretty straight forward and routine. I stayed in hospital for 2 nights, and my sister for 1 night, then we were back to recover at home. It's tricky with the drains at first because they are quite debilitating, but once they go, you can be quite mobile to move around and go for walks but just have to be cautious with lifting/pushing and take your time doing daily tasks. 

I'm glad brcachat can be useful for you. Just to know that others are going through the same and to read about their experiences can help a lot :) You are never alone on this journey and I wish you the best of luck! x