I've just had my first scan and consultation after finishing second line chemo in early Sept. The results are better than we dared hope for with my original tumours essentially not visible on the CT scan (just some "stranding"?!?) and ca125 remaining low at 9. My oncologist was all smiles as my response to the carboplatin beat her expectations by a mile, and she doesn't want to see me for 3 months. Hubby and I cried in the car park!
I have to decide whether I want to have my original tumour tested for the BRCA gene (it's not in my blood) which costs A$1200 - if I am positive it opens up the option of oliaparib (lynparza) as a maintenance therapy. This is my only option to receive a PARP inhibitor in Australia (in the public system). So I'll probably give it a go even though I've read the number of women with BRCA in the tumour but not the blood is a small percentage. Does any one have any advice?
I hope everyone is as well as possible best wishes Dawn
HI Dawn , Glad to read your post great news hope it keeps up.
I live in Australia as you can see on my profile, I'm in NSW Sydney I've had my Original tumor tested for BRAC and then just recently was asked if I would like to have it tested in a trail, that may give me the option to see how certain chemo's effect my cancer cells,
This is all done in the public system and this was offered to me free.
I"m retired and do not have private cover so I don't know if this is the reason.
What state are you in?
True if you are positive having the test may, open options to receive PARP here, so would be a good idea the more options the better.
That’s great news, Dawn! I’m not surprised you cried in the car park! I don’t know much about the tumour testing, but it is something I’m going to have done. I was BRCA negative through the blood tests.
Congratulations. You must celebrate such good news. 🎉🍾
I suppose it might be an idea to check how long it usually takes to get the results back. If it’s only a short time you could hold off in case you are offered a trial which includes testing (I was). If there is quite a delay, it might make more sense to have the test sooner, in case your tumour is positive so treatment can start quicker.
I don’t know what the percentage is but mine was negative.
I agree you should be tested. Who knows what now--and the future---holds and with that information, you may know if you would respond to newly developed treatments as well as those available for BRCA now.
Hi Dawn, such great news. I know how pleased you are having just been told I'm in remission myself. It's such a relief.
Sorry I can't comment on the BRCA. I'm lucky enough to be tested for free as it's offered in UK. I did have to think what I'd do with the results though. I had a word with my daughter and she's decided she would like to know the results, good or bad. I won't know till the new year though as haven't had the test yet.
Hope it all goes well for you. Best wishes, Zena x
G'Day Dawn, that is such wonderful news for you. I too am from Oz and had BRCA testing in private system (only paid consultation with geneticist as result was positive) but believe it is now free in public system if you at high risk of Ovarian or Breast cancer and as you already have 1, they should do it for you. Definitely worth having the test. All the very best and long may the positive news continue for you. Good luck xx
Thanks Perthgirl! My initial BRCA testing was free under the gene counselling after my surgery in 2015; the new testing is of the tumour itself which is really about seeing whether I am able to receive PARP inhibitors as a treatment option. I've been in the public system since the start, which has been wonderful and very timely, but obviously some of the newer treatments don't seem yet to be approved under the PBS.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Emotional day yesterday
Second line chemo “choice”
Second Line chemo - Avistan
Stable results after second line chemo
Post op check up.
