5 year plus survivor

Hi there.

Im sorry it’s tough to hear the news about a genetic mutation but knowledge is power and it does actually give more treatment options (I had Carboplatin with paclitaxol chemo).  It’s a lot to take in so really happy to answer questions.

I had a double mastectomy after chemo had finished and before radiation.  didn’t have to (my oncologist recommended a single mastectomy on the cancer side and it was up to me whether to do the other as preventative for a new cancer in future). It’s such a personal choice but with two young sons I just wanted to do everything to survive the cancer I had and prevent anymore in future. I have not had reconstruction. Again a very personal choice but I just didn’t want to put my body through any more trauma than was medically necessary. Originally the plan was that I would have a reconstruction a year later but I decided against it and am totally happy with my body as it is.

regarding the menopause/oophorectomy, I was more concerned about that to be honest.  The genetics team suggested I didn’t need to do that until I was 45 but I just wanted it done and dusted so had the op two months after radiotherapy. In terms of menopause symptoms I’ve been pretty lucky. I had hot flashes for a few years but they were totally manageable- but they’ve  stopped now. As I said, my bone density is not great - I get scanned every year and have osteopenia but it’s not full on osteoporosis yet. I take vitamin d and they said I could consider calcium supplements but also need to balance that with risk of heart disease in future (calcium raises cholesterol) so I’ve decided not to for now and focus on ensuring i get calcium in my diet.  I noticed vaginal dryness straight away (sorry if tmi!) but you can manage that with prescription gel. It’s actually fine now. I don’t think it affected my mood too much (I was really worried about that for my husband/kids sake). Covid hit just after my treatment all ended so it was a tough time anyway and those first few years are pretty hard emotionally with fear of recurrence etc. it wasn’t plain sailing but I stuck with exercise and got som therapy at times. Overall it wasn’t as bad as I feared but everybody has a different experience. My gynecological oncologist said that you tend to have a similar menopause as your mum and my mum reckons she barely noticed it so who knows! i will say o couldn’t have coped with the fear of ovarian cancer. It’s such a horrid disease and harder to catch early. My very dear friend was diagnosed with ovarian cancer two years after my breast cancer diagnosis. she found out after diagnosis that she was BRCA positive too and she died in April after 2 years of treatment. I’m sorry you have had this news but my advice would be to focus on the fact you can take action to avoid more cancer in future end focus on trying to keep fit and healthy. Good luck xxx 

Also 2 years since double mastectomy same reasoning. I’m back to work & doing ok.

Recently gained lots of weight & v unpleasant gynae surgeon has told be can’t do proposed surgery as BMI too high I swim / do aqua class daily & quite”muscular “ for a woman of 162cm

Im concerned it’s something causing swelling (other than being too fat) which he dismissed with Well usually cancer makes you lose weight 

I take an injection Tezspire delivered to my home monthly & wonder if it affects weight 

do not feel my diet is a problem although can’t exercise much outside of water My good friend confirms she does not think it’s overeating & obesity 

No follow up , no mammogram as back to flat

How best to get a check up

GP crazy busy - has stand up desk & no time to listen!

How & who yo ask for help?

Kate

Hi Kate. Goodness what a throughly horrible man (I assume a man but sure woman are capable of being as horrible) that Gynecologist is! Is it the oophorectomy that was proposed? My mum had the op after me (she found she was BRCA positive due to my cancer). She is very overweight and that was never raised as an issue. So I think that surgeon is talking bollocks and it’s probably more about nhs waiting lists than anything. Are you BRCA positive? Personally id put in a complaint about his comments of cancer causing people to lose weight. It’s just not true. It can but it (and its treatments) can cause people to gain weight as well. Ignorant man.

in order to get this looked at properly (if you are concerned it’s something to do with poss cancer /overies erc). I’d make up some symptoms (constantly feel bloated, pain in tummy area, feeling tired all time). Then I’d write a letter to gp surgery setting out why you are concerned…spell it out ie symptoms that you have not had surgery you’re supposed to have etc. that you are concerned with your history you are at high risk and think you should be referred for a scan. If it’s in writing (ie I am concerned I may have cancer for these reasons) it’s then on tecord and harder for them to brush you off. 

Xx 

Thanks

yes he was v unpleasant & the nurses followed me outside & said ask for a 2nd opinion