New to site, advice please.

[Jo-Jo1-UK]

Hi......I recently discovered this site and wanted to say how pleased I have. It is so useful to have advice from those in similar situation and is very reassuring to read some good news stories. Most of all everyone is so incredibly supportive.

I am 43 and was diagnosed with stage 3c oca & had extensive surgery 15 months ago followed by carbo/taxol chemo which ended oct 16 and thankfully NED since! I have also been diagnosed with BRCA 2 gene placing me at high risk of breast ca. Just wondered if anyone could answer a few questions?

- I've been offered Tamoxifen or anastrozole as a preventative drug for breast ca. Has anyone got any experience of either or been advised to go for one drug over the other?

- also wondered if anyone in my situation opted for risk reducing surgery for breast ca. The surgeon I saw didn't want to consider it currently due to the risk of the ovarian ca returning! It isn't something I would consider at the moment as I'm still recovering from the treatment I've had so far but would like to keep my options open for the future.

- Am I right in thinking there is nothing you can take to delay recurrence of the oca? I've asked my oncologist and I don't seem to meet criteria for anything currently. Wasn't sure if there was anything private or in other countries?

- Fatigue! 😩 It is improving and I am getting more active so I am hopeful but it feels such a nuisance as I was so active before. Just wondered those of you who have had surgery/chemo...how long it took before the fatigue resolved or settled?

Thank you ladies, appreciate any advice.

Best wishes, Jo xxx

[Lyndy]

Hi Jo and welcome!

Glad your first line treatment went well. I can sympathise with your dilemma regarding breast cancer...I am BRCA 1 and was also told they didn't want to look at surgery until 5 years post diagnosis of OC. I have opted for annual breast screening as my risk is falling and my BRCA version seems to be less risky for bc. Have you talked to the geneticist about what your personal risk is? Might be useful as it is not the same for each person with BRCA.

Regarding a preventive against recurrence...I wish! Some ladies take supplements and use diet but nothing clinically proven.

xx L

[Jo-Jo1-UK in reply to Lyndy]

Hi...thank you for the lovely reply. Yes I've seen a geneticist & it's very high risk (80%). The surgeon said I could go back in 2 years if the OC hasn't returned! In the meantime I'm on annual screening like yourself and now the possibility of starting a drug. I've noticed a few people have mentioned diets, I haven't explored that yet, not sure if it would be suitable for me as my diet is largely low residue since the bowel surgery!! All these things to weigh up! xx

[Emsymits]

Hi! I'm very similar to you but was 46. (Now 47) I'm 3a and had a massive op in Jan this year. I'm currently waiting for my BRCA results 😬

As for prevention sadly nothing. Some ladies have Avastin I believe but I'm not sure what the criteria are. I'm trying a drastic overhaul of my diet and lifestyle. With hindsight I ate huge amounts of meat and dairy and drank too much. Was stressed and anxious too.

I eat largely veggie now with fish and occasional meat and dairy. Limiting alcohol too.

I'm lucky I can give up work soon. I'm hoping the lack of any work hassle and more relaxation will help me in the long term. I went back after sick leave today and I'm currently sitting down exhausted after a whole four hours at work so if anyone has any fab tips for getting over post chemo fatigue I'd love to hear them too 😀

Good luck for continued NED!

Em

X

[Jo-Jo1-UK in reply to Emsymits]

Thank you for replying Em, good luck with the BRCA test, really hope you get good news. I did ask Oncologist about Avastin but I wasn't eligible 🙁I've decided to not return to work either, looking forward to getting back to doing some of my hobbies I enjoyed before OCA!

[Lily-Anne]

Welcome to the party 🎉

There was some research that says preventative surgery for BRCA positive hasn't proved any difference in survival stats. I'll post the link when on laptop.

I use C oil and Vit C it makes me feel as if I'm doing something

LA xx

[antheamary]

Hi i have had both anastrazole & tamoxifen both stopped working after about a year. Not for breast cancer though.

[Di16]

I've had Anastrazole & Tamoxifen as treatment for OC. Anastrazole worked best for me. But I can't advise which would be best for you as we're all different. Di

[Jo-Jo1-UK]

Thanks for the replies ladies x

[Sunfleury-UK]

Hi Jo, not sure where you are but if in the UK, Penny Brohn in Bristol have some great short residential courses and I found useful things to help manage post-chemo fatigue... Also, at a TOC 'Being Together Day' in Bath, there was a talk from a specialist team based there in Bath who were running quite cutting edge support and intereventions to help with fatigue.. It may be if of any interest, I can dig out contact details for them. I had this quite badly and it take a while... the good thing is that i still feel that tings continue to improve but think this is more to do with my awareness and management... Sx

[Jo-Jo1-UK in reply to Sunfleury-UK]

Thank you, I'll look into the courses and go on TOC website, sometimes they upload the being together days!