BRCA TEST

Good Morning All - I am due to have my BRCA test done next week and was wondering how it effects future treatment? I have googled it but it it not very clear. I am aware of implications regarding future insurance but was wondering if there is anything else I should be aware of. Hope you are all as well as possible. Lyn xx

[delia2]

Hi Lynn. The most important consequence is that you can take a PARP inhibitor especially Olaparib and it is likely to maintain pfd for a good 2 years! What are the insurance implications?

[Hidden in reply to delia2]

I was told that a positive result may effect life insurance policy, with companies increasing premiums or refusing to insure you. My son lives in America and we have been told that it may be difficult for him to obtain insurance so we are not going to tell him if it is a positive result. All a bit confusing but as I don't have life insurance I don't suppose it will make any difference to me.

[kristinaapril in reply to Hidden]

America currently has a pre-existing condition clause; where it is illegal for health insurances to refuse you insurance or raise your insurance based on your pre-existing condition.

If you are positive for the BRCA mutations - your son could be a carrier or have the mutation as well. If he does have the mutation, it puts him on a higher risk for prostate cancer in life (BRCA1 with a 3.8-fold and BRCA2 8.6 fold).

Source: gucasym.org/daily-news/curr...

[Katmal-UK in reply to Hidden]

Hi Lynn

I'll be brutally honest here, if you are BRAC positive you really should tell your son. He may want to get to get tested which, of course, is his decision to make. Obviously it's your decision whether to tell him if you are positive but his not knowing can impact on his future health . My son has tested positive and will now be tested earlier for prostrate cancer. My daughter has yet to decide to be tested. Either way your son should received counselling ahead of any test. I have BRAC2, my brother has a mutation and has had prostrate cancer and now a form of blood cancer. However, on the plus side (if there is such a thing with this disease) I seem to respond better to chemo and have just completed 5 years on Olaparib and been NED for 5 years 5 months (originally diagnosed in 2007). Kathy xx

[Hidden in reply to Katmal-UK]

My son is only in the US for another year so I thought we would have the chat when he returns to the UK. Is Olaparib maintenance or after recurrence?

[Katmal-UK in reply to Hidden]

Oh I see, that makes more sense then. I'm on a trial for Olaparib as a maintenance drug, have been since the start of Jan 2014. I went on this trial after my second recurrence. This is my6 third and to date most successful trial drug.

[Zssu in reply to Katmal-UK]

Hi, I have been just diagnosed with Fallopian papillary serous cancer. Atm. Found during a prophylactic salpingo oopherectomy. Waiting for further op. I see you are on Olaparib, was that because the primary tumour was considered platinum resistant? I finished a course of carboplatin last year. I am Brca1 mutant. Never had gyne cancer before just 2 x breast. Hoping I may be eligible.

Sounds as though you and lots of people are doing well on it.

[Katmal-UK in reply to Zssu]

Hi. Im platinum sensitive, albeit I became allergic to carboplatin and cant have that, I have Cisplatin. Are you NED at the mo?

[Zssu in reply to Katmal-UK]

Hi thanks for your reply. I had cat scan Friday, Portocath fitted thursday, again. Op to remove omentum, lymph nodes and hysterectomy in 10 days. Then awaiting histology to see. Had carboplatin and docetaxel for triple neg breast ended May. This is now my third different cancer, the other two were primaries, I just hope this one is too. I certainly do not feel ill, just had a weird pain in my back. But was due for a prophylactic removal of ovaries and fallopians to keep the brac 1 away when they found it. How did your allergic reaction to carboplatin manifest itself? So pleased to find someone who is keeping well. I am 64 but still working and want to remain so.

[Katmal-UK in reply to Zssu]

I had carbo/taxnl following op and diagnosis and then carb/gem for my first recurrence. During cycle 3 (about 30 seconds in) I had a grade 3 anaphalatic shock. it would have been scary but tbh I passed out whilst they worked on me. apparently stage 4 is yr heart stops according to dr so was pretty serious, so I was swopped to cisplatin. Im 60 now and continu to work full time, well nearly lol just dropped Fridays for a better balance.

[Mptelesca in reply to Hidden]

Hi, Lyn...if you don't mind me saying this, I think it's a good idea not to tell him. Seems insurance companies in the US are playing hardball. I tried getting life insurance and I keep hitting a brick wall. Some insurance companies say they do not ask any health questions, however, they will only offer you term life insurance. It's really a strange situation here. Maybe I'm not so well informed, but, thought I would tell you that you're doing the right thing. The genetic testing is great because it can match you up to the treatment that will best work if you're positive. If you're negative, even better as far as your family is concerned. On my first recurrence last January, they (Yale) actually tested my original tumor for any mutations, however, I don't remember what they told me. I was able to go on Zejula and have been on it for 3 months now.

Wishing you the very best!

XOX

Marisa

[Lindaura]

Dear Lyn,

Testing for the BRCA Mutation gives you several advantages.

Number 1 might be the fact that this is a hereditary mutation, with a 50/50 chance of you passing this on to your children, and has repercussions for your entire extended family, so you will either be relieved that you are not positive, so therefore your children will not be susceptible to the many cancers related to this mutation,

Or you will find that you are positive and therefore your family can be tested and can then decide on the risk reducing options available to you and them (free in the NHS).

In addition, you will now be offered one of the PARP inhibitors that can keep further disease in check forever.

Here is some more info.

I wish you the best in all this,

Laura

ncbi.nlm.nih.gov/pmc/articl...

onclive.com/conference-cove...

cancerresearchuk.org/about-...

[Hidden in reply to Lindaura]

Thanks Laura, lets say I am not BRCA positive and not qualify for a Parb, what next? I am currently NED but realise that I should be taking a maintenance drug, I had to refuse Avastin due to existing medical conditions.

[Lindaura in reply to Hidden]

Here in the UK, you can still qualify for a PARP inhibitor if you remain sensitive to Chemo in general, either through CT results or a 90% reduction in CA-125 at end of treatment.

I think this would be after second line treatment, but other ladies might know better about this.

Best wishes,

Laura

[Lyndy]

Hi Lyn... I think your other replies have most of it covered- I would just add that for me it explained why I got OC in the first place which was helpful in accepting it. I also felt grateful to be at the centre of so much ongoing research xx

[Hidden in reply to Lyndy]

Hi Lyndy I didn't realise it was a precursor for Ovarian Cancer, very interesting. Thank you

[ZenaJ]

Hi Lyn,

I was told it doesn't affect your insurance in any way but the advantage to taking the test is that you will be able to have a certain drug if you get a recurrence and you're BRCA positive because it is more likely to be effective.

It took about 3 months from the first meeting and getting the results so don't expect anything to happen quickly.

Good luck. Zena xx

[Mptelesca]

My apologies. Now that I read the other responses, I agree with the lovely ladies who say you should disclose to your son. I was only thinking about my personal situation. They are right. Yes, in America it is illegal not to cover for pre-existing conditions with medical insurance, but, it still has to catch up when it comes to life insurance. Oh, the politics and greed overrun everything!

Marisa

[Rlenesue]

Being brca positive doesn't affect treatment so much as how your body responds to it. Usually BRCA positive women have more success with treatments as the body responds very well to it.

Hope this helps answer your question.