Hello, just wanted to provide an update after meeting my care team today after completing 2 years on Lynparza (after chemo and debulking surgery for hgs stg3b OC)
1. Ca125 very low, that's good. Rest blood parameters are as usual just below normal reference ranges (Rbc, wbc etc; platelets are good though) but my body has adjusted to the new normal a long time ago.
2. My medical oncologist has recommended to continue Lynparza (olaparib) for 1 more year due to the good results he is seeing. I did not anticipate it but accepted to continue and the formalities to be completed next week.
3. My yearly full body petCT scan is due in 3 months and I am due to meet my care team after that test with the results.
4. I discussed option for elective mastectomy since I am brca1 positive. I am 47, in good health now, and with the stats showing up to 80% probability of getting breast cancer in my lifetime with this gene mutation, I have decided to prevent it altogether by removing it all. He provided some solid advice and is due to discuss with the rest of the care team and get back next week with his reco.
1️⃣ one question I have for those who opted for prophylactic mastectomy here: can you share your decision making process, how the procedure went, and if you are happy with your decision? While I am approaching this very practically, hearing your voices and your experience will help me so much to finalise it, especially the "when" part; now or wait till my olaparib extension is over or anything else I should consider?
2️⃣are there any known side effects of olaparib after 2 years of use? It took me 4 months to adjust to it and I am on a reduced dose. But not aware if there is any stated long term side effect of the drug.
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Goodgirl98
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Hi. The one long term side effect is the very small chance of getting MDS/leukemia but it’s remote. I recently read they’re thinking three years is the maximum safe amount of time on a PARP but it’s not official.
I'm BRCA2 and have also been considering an elective mastectomy. I found the statistics a bit confusing (cumulative risk v remaining lifetime risk) but, whichever you go with, the risk is still high. My genetics counsellor advised me to focus on how I feel and, interestingly, also told me that there is little difference in outcomes whether you have the mastectomy or not as breast screening is so good. For me, though, I would rather have the operation and feel that I'd done everything I can and also not to have the worry between annual breast scans. Also, it feels very different having a mastectomy when I'm healthy and with no need for chemo/radiotherapy than having one with cancer present. (On the other hand, there's always the possibility that I would never have got breast cancer but that's where I've needed to make a decision based on risk statistics and how I feel about that risk.)
I have a wait of 9 months to a year for the surgery but, right now, I'm planning to not have reconstruction. This is a very personal decision but I'm of an age (61) where I'm not that bothered about what I look like and I don't want to have a second operation with a much higher risk of complications. There are always prosthetics for under clothes if I want but I'm actually looking forward to not having to wear a bra!
Thanks for sharing your thoughts. I am of the EXACT reasoning as well that since mastectomy brings down the risk to 0% whereas a screening and detection is post facto, I would rather eliminate the risk. One thing I have always felt awful and guilty about is that I lost 2 aunts to OC but we we were not aware of the genetic risk we carried. If we did, I would done a hysterectomy after my second one. Not only was my family not aware and hence did no screening, I also ignored a small Anamoly in an ultrasound during a UTI treatment 8 months before my actual diagnosis. Long story short, I don't want to feel guilty knowing what resources are available to me now. Best of luck with your decision. I am currently leaning towards a basic reconstruction (just some shaping) but I have to understand the options a lot better.
Hello Goodgirl 98, my sister (diagnosed 3C HGSOC aged 37, BRCA+ last summer) is weighing up options similarly. Here in the UK the current guidance is 2 yrs on Olaparib after frontline treatment, though I am always looking out for people with a different experience, so interesting to hear you've been advised to take it for another year. I think the guidance with Niraparib is 3 yrs, and from what we've been told, the Parps are quite similar, and the differing lengths of time (2 yrs for Olaparib, 3 yrs for Niraparib) are just to do with how the trials were structured. I have read of many people staying on it much longer after a recurrence, particularly in the US, where it seems to be offered indefinitely if it's working. Like you, my sister has huge guilt about 'letting' this happen to her, but of course it is not her or your fault that you find yourselves in this horrible situation. She was recently told that less than 3% of OC cases are people in similar circumstances to her, and the guidance here is not to consider preventative surgery until after 40. It's so cruel, and just terribly unlucky. We were much more focused on the risk of BC and she was, and continues to be screened for that using MRI. MRI doesn't carry the radiation risk so we're thinking now that she will ask to be screened twice yearly (once a year is the standard) while she is on Olaparib. Maybe you could ask for more frequent screening while you are deciding what to do? She's been told by her onc not to have a mastectomy until after the 2 yrs are up (as post surgery infection risk, which would mean coming off Olaparib). She's meeting with a breast surgeon, so that if that's the route she decides to go down, everything is in place. She has also been told that treatment for BC is very effective so outcomes with catching it early vs preventative surgery are equivalent and her onc seems quite blasé about it. But I feel that attitude totally underestimates the trauma of waiting for scan results and potentially having to hear 'you have cancer' again, and going through chemo and then ultimately surgery again in any case. Like you say, it is hard weight to carry to feel that you could have taken steps to prevent a situation (even if that is absolutely not the case), and so having preventative surgery might be a way of reclaiming some agency. I've also read about the blood cancer risk with Parps, and have seen a few mentions of the risk being slightly higher than first thought, though I am not at all informed about this, so do investigate with your team (apologies if this is incorrect info). I need to read up on it, and see what data there is currently. And of course, it has to be balanced against the risk of the OC coming back. Also - her onc told her that Olaparib is given to BC patients, and so if any cancer was to develop, the theory is that is would inhibited by the Parp too. Don't know if they've got solid evidence of that yet, or if it's just the thinking currently. Sorry for a long, rambling response, but you and my sister seem to have similar stories. It's wonderful to hear that treatment has worked well for you and it sounds like you have a proactive team. Good luck with it all, and please do share an update again if you're minded to.
Hi PyjamaDay, sorry your sister is having to go through this ordeal. Coincidentally my medical onco came back yesterday (over WhatsApp) after a meeting with the peer review team to say that preventive masectomy is not recommended for me now. So very likely I will continue on Olaparib for another year, which he is due to get back on next week. Once I hear from him, I will definitely be meeting him to understand his thought process to turn down the surgery request and the risks of OP for another year.
I have read about the MS/leukemia risks also very early on when I first started on the meds, but hubby and I were not too troubled by the stats at that time (although I cannot recollect what the trial study said). Will have to revisit it now.
Wish your sister the best in terms of long term recovery. Yes, I agree we should not feel guilty. I don't 95% of the time but it rankles sometimes!
btw, I read yesterday about an AI based solution that is in the works that can predict likely BC occurrence 5 years before they actually occur. You might find this positive: science.org/doi/10.1126/sci...
Hi Goodgirl98, thanks for your good wishes, and for the article - I will have a proper read over the weekend. Hope everything is straightforward with the Olaparib renewal, and you're able to have the conversations you want to with your doctor. It sounds like he is very communicative, which is fantastic! Things are moving so quickly with treatments, and feels like knowledge is accruing all the time when it comes to Parps, so things could look so different again in 1/2/5 years. Wishing you all the very best with this next phase x
Hi there. I have been on Olaparib for about 3 months now, and when I started I was told that I would be on it indefinitely, providing it was still working. Maybe the guidelines are changing as they learn more about it?
That's very interesting. I was told 2 years was the maximum tolerated duration just 2 years back and was told 1 more year was possible a week back. Maybe the trial results are coming out really well!
There is one really helpful member in this forum who has been on it for 9 years now since the very initial trial; but that's because she signed up for one of those initial trials. She is doing well on it. Gives us hope!!
There's a lady on one of the facebook groups who is NED 11 years after going onto Olaparib as part of a trial for recurrent OC. I'm working on the basis that info and results are coming in all the time and so guidance could potentially shift a lot
Hi LovemyJackRussell, that's really interesting. Do you mind me asking whether you have gone onto Olaparib after frontline treatment, and whereabouts you are? Here in the UK, the guidance seems to firmly be 2 yrs, but wondering if that may be re-evaluated as you say
Hi PyjamaDay - I am in the UK (Gloucestershire) and was diagnosed with Stage 3C in August last year. I had chemo from October through to the beginning of December, debulking surgery over Christmas, back on chemo in January. The plan was for me to have Bev as maintenance but I got COVID then a blood clot and they thought it was too risky so changed the plan to Olaparib. I was definitely told that it would continue as long as it was working. Whereabouts in the UK are you? (There does seem to be variations in what people are offered in different places.)
Really interesting! We're in the UK - it's my sister who has OC - she's being treated in London. Same staging as you, and very similar timing. Also on Olaparib, and currently being told that's for 2 years only. I have seen people in other countries write about being on it for longer, but think you're the first UK based person I've read about who has been offered it for longer after first line treatment. Hope it works brilliantly for you, sending lots of good wishes
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