update after 2 yrs on Lynparza and looking for suggestions...

[Goodgirl98]

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.

[delia2]

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.

[Goodgirl98 in reply to delia2]

Thanks so much for sharing this. I will discuss with my doctor as well on this point.

[Demelzatheseagull]

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!

[Goodgirl98 in reply to Demelzatheseagull]

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.