To women who haven't had recurrences

I'm BRCA 2 positive. I was diagnosed in April of 2015 Stage 3C, have had two recurrences and am currently on Olaparib. Question for you guys that haven't have any recurrences. Have you done anything differently? Diet changes, etc.? Because I haven't changed anything and my doctor hasn't told me to do anything differently or to stay away from anything at all. It's currently in the peritoneal.

[Zannah]

Hi,

I’m BRCA 2 positive and was diagnosed with 3c in January 2012. I had the usual radical surgery, plus removal of my spleen and the tail of the pancreas. This was followed by 6 cycles of carboplatin and taxol. So far no recurrence and I’ve been discharged. I can’t honestly say I’ve done anything different. I don’t eat much meat and have a fairly balanced diet. I get a moderate amount of exercise through walking and looking after a large garden. I guess I’m just very fortunate. Zannah x

[Boot1947]

Hi there - hope the Olaparib is working well for you. I’m BRCA1+, was diagnosed 3a in March 2014 (had the usual surgery, plus weekly carbo/taxol and have been NED ever since. Like Zannah, I don’t eat much meat, eat a (pretty) balanced diet (no extra supplements) and do Zumba and walk a lot, but I did all that before diagnosis, so I haven’t really done anything different, except maybe I’m more aware of keeping well hydrated. Just the luck of the draw and an excellent surgeon maybe? OC a does seem to have a path of its own. Deb xx

[maggie22]

Hi

I’m brca2 and was diagnosed with 3 in 2011. I had 5 cycles of carboplatin after surgery and my recurrence only happened 2018. I did nothing differently and did not change my diet. Those 7 years were very good.

I wish you well With excellent health

Maggie 22

[Entito]

Hey, I was diagnosed Dec 2012, 3c serous high grade. I took part in the icon8 trial with weekly carbo/taxol. Found out Dec 2013 I was brca2. I have been in remission since treatment. I've been vegetarian since I was 15 and haven't changed anything. I still eat 'rubbish' sometimes. I do a bit of yoga. I guess I have been very lucky but I still worry before each check up. I hope you get to a long remission.

[LittleSan]

I recurred after 3 years and had an active lifestyle and exceedingly healthy but conventional diet. I also took revestrol supplements once I was diagnosed. My mum never recurred, was pretty sedentary due to severe arthritis and had a normal healthyish diet. She did take metformin for diabetes though. Both BRCA negative. Statistically I've done really well considering my recurrence but have no definite answers as to why. The only possible indicator I have is that I had a stressful job when I was diagnosed and mum was happily, newly retired. Each of my diagnosis and recurrences have followed particularly stressful periods in my life.

Xx

[Katmal-UK]

My mum was stage3 Brac2 positive and went just over 14.5 years with no recurrence. She changed nothing x

[Cynthia18 in reply to Katmal-UK]

Wow that is very hopeful

[Hidden in reply to Cynthia18]

That's amazing!

[ZenaJ]

I was diagnosed 2013 stage 3C, BRCA2. I didn't drink alcohol during my chemo because I thought my body had enough to deal with but otherwise I've changed nothing. I don't eat much meat and rarely red meat. I eat very little fruit. I try to be reasonably healthy but if I'm honest with myself I'm not. I eat loads of chocolate. I'm not overweight and do exercise by walking a lot and occasional badminton but I never go to the gym.

I think it's all down to luck and things they haven't discovered yet. It can never hurt to have a healthy diet and do exercise.

I wish you all the best, Zena x

[Unclear]

I am wondering the same thing. I was diagnosed Nov 2016, Stage 2C. Had complete hysterectomy, lymph nodes were all clear. Did Carbo and Taxol, thought I was in the clear but had my first recurrence in July 2017. More taxol and carbo with Avastin added. Now on Avastin every 3 weeks and CA125 has been rising and has been above the normal level for 3 months. So looks like this is my 2nd recurrence.

[Mommoo65]

I always wonder how I would even know I'm recurring because my oncologist has stopped CA125 because apparently it's not a good marker for me. I had no symptoms originally so may not recognize them if I had them. But he says I'd know.

I am 3b and was diagnosed in Sept. 2015. I had the usual carbo/taxol..2 IV and 4 IP. aggressive. Nothing since. I need to lose a lot of weight but exercise and ride my bike a lot. I do not have a healthy diet but am trying to change that. I just love cheese!! I have a bit of a sugar craving that comes and goes. I have AFib so take warfarin and some vitamins. But I honestly haven't changed anything from before.

[sticky3006]

I am also BRCA2, diagnosed Feb 2018 and am now having my first recurrence. During my first lot of chemo I exercised like mad as I thought this may help, ate a low carb diet with no sugar or meat and also took lots of supplements recommended to me by a naturopath. I was completely gutted when my ca125 started to rise about seven months after chemo ended. This time through chemo I'm listening to my body and am eating whatever I fancy within reason as I feel all my efforts last year probably didn't make any difference. The only thing I will say though is that perhaps all my healthy eating got me through chemo more easily and gave me lots of energy which I still have. I don't really eat much meat and don't have fizzy drinks etc. Good luck with Olaparib which I'm hoping to start next year, sticky3006 xx

[Hidden in reply to sticky3006]

Thanks. I have a poor diet and like to drink and have fun. My thoughts were I was going to have as much fun as possible with the rest of my life. And I still feel that way. I'm overweight, have a stressful job, take care of grandkids, don't exercise and love my bed at nights. I have a lot of energy until 8:00. Then just leave me alone because I want to be left alone with Netflix. I do eat red meat. Sorry, not sorry. Just can't do chicken and veggies every night. So boring to me. I just want to live and have fun. But it's in my peritoneal and not going to go away I don't think so I just have to keep it from growing. Hopefully the Olaparib will work for a very long time. I did well with chemo the three times I've had it so there's always that again too. My doctor has never said anything about sugar or alcohol or losing weight or anything so I'm not really worried I'm doing anything wrong but it sounds like I don't care about myself and I do wonder so that's why I was asking. Because literally if the answer is don't eat any sugar, of course I would do that, or lose 50 pounds, I would do that, or don't drink, I would do that, or don't eat red meat, I would do that. But I feel like it's the gene and that's why I have cancer, not those other things. I don't know. I do want to live though.

[sticky3006 in reply to Hidden]

I agree with the gene theory. No matter what we did or didn't do we were going to get cancer anyway sadly. I suppose we have to do what's right for us and I certainly don't want to spend the rest of my life just eating veg and drinking water! Of course if I new that that would help me survive then I would, but as you say with our dodgy genes then it won't make a difference. The only thing a 'healthy'ish' diet and exercise will do is maybe help us cope better with the drugs that we receive and also keep us mentally and physically in good shape to tackle whatever comes next. Good luck and have fun! xx

[Hidden in reply to sticky3006]

Yeah, it just sucks I guess and living and having fun helps me. I'd be so depressed if I had to just stop doing all the things that make me me. But I'm trying to deal better and be more healthy, but I swear, I can't lose a pound and I've gained 20 since my first chemo four years ago. Whatever. Not worrying about that either. Life's too short.

[Hidden in reply to sticky3006]

I like your reply at the end, "Have fun," because that's what my whole post was about! LOL

[Mptelesca in reply to sticky3006]

Love your attitude! It’s the way to go. Live your life with zest and that’s as good as kicking OV right in the balls! Keep going!

Xox

Marisa

[forestrowlady]

I was also diagnosed and operated on in April 2015 with stage 3b ovarian cancer. Just after the operation I was advised by a friend who had recovered from breast cancer to take a junior aspirin every day and also a turmeric tablet preferably with black pepper which I have done. I think I might be having a recurrence now but at least I have had nearly five years clear. Apparently there was a trial going on regarding the aspirin and the turmeric is good for lots of health issues. I get them from Amazon. Hope this helps. Wendy

[Lyndy]

This is the 6 million dollar question. If only we had an answer!

Also, I think that I and others lost confidence in our own ability to know what felt good for us during treatment. I was shocked that I hadn’t twigged that something so devastating was wrong with me- so how could I possibly decide how to live afterwards?

In truth I didn’t really change much... I wasn’t even that positive..thinking that I wouldn’t have long before it came back.

So I suspect it is serendipity.... and the best advice may be to seize each day and live it to the fullest extent. All the best! xx

[Jo-Jo1-UK]

Hi, I’m BRCA 2 positive and was diagnosed with oca in May 2016. I had debulking surgery followed by 6 rounds of chemo and haven't recurred. I did give up work due to side effects of the surgery and because I didn’t have the energy to return to my busy job. I do keep active and regularly exercise 2-3 times a week. I haven’t made any changes to my diet, I'm a healthy weight so still enjoy chocolate and cake treats!! Hope the Olaparib works for you and you stay in remission. Best wishes, jo xx