Gene test for MicroPapillary cystic carcinoma

[OzBron]

I was diagnosed Stage 3C MicroPapillary cystic (mucinous I think)carcinoma with invasive peritoneal implants this April/May with extensive surgery and started first round of CarboTaxol yesterday due spread of invasive implants. I have questions about others with this type of cancer which are in another post. Main question for this post is regarding genetic screening.
Does any one know about whether this type of ovarian cancer is thought to have a genetic link? Could genetic screening be helpful for my sisters who are not much older than me or their neices? (Due to spread of disease, I have had both ovaries out and at only 31 un/fortunately have no kids of my own to be worried about.)

I have no history of OvCA in my family but both my mum and grandma had early full hysterectomies (finished children and heavy bleeding) so not sure whether this makes it conclusive that there was no history (full hysterectomies would lower their risk?). My mum would be willing to be screened also, but if they don't know of a genetic link is it worth doing now as they may come back clear but look at wrong gene? Is their specific genes we should query? We have no history of any breast cancer in the family and this always is something that seems to come up in genetic screening discussions. As I am young for this disease and my type is relatively rare, I have a concern for my family's risk.

Any thought on this would be appreciated.
OzBron

[Tybear]

Wow...we seem to have an awful lot in common! Yes, I believe that the BRAC gene test is standardized and would be the same no matter where you went. That's funny that your sister is in Toronto...that's where I'm having my clinical trial done, at Princess Margaret Hospital - they say it's one of the top 5 cancer research hospitals in the world, yet again, they won't do the genetic testing on me. I guess they really don't feel the need. I have no doubt you could find a private lab somewhere that would do it...my next appointment is on the 18th, so If I remember, I'll ask my doctor. I'd be curious as well...The type of cancer we have is so strange...if this chemo doesn't put you in remission as long as you would hope for, there are lot's of new promising clinical trials going on everywhere...I'm starting to think that the answer is in one of them.
I'm sorry your so far away from your family as you go through this...you've got lot's of on-line support though, so use us when you need to!
Becky

[OzBron]

Thanks for your comment. Interesting I am an Aus in the UK, but plan to relocate to the US later this year once my treatment finishes. Part of the complication is that My mum and oldest sister are in Sydney and my other sister is in Toronto, Canada. So I am not sure how standard the tests are between countries. But like you I am the youngest of 3 sisters and am thinking more for their comfort than me. Do you know if the BRAC gene testing is standardised across countries? If mum or I have it, then it would be worth my sisters getting tested. Do you think it would be available in Canada at a private clinic- even if expensive?
Thanks,
OzBron

[Tybear]

Hi there...I replied to your question above, but I also wanted to talk about the genetic screening. I asked my doctors about this as well. I have no family history of any cancer, and I am the youngest of three sisters, so of course I'm concerned about them and my nieces too. I look at it like, someone has to bring it into the family, right? It starts somewhere... My doctors really think the likelyhood of this being genetic is rare, so rare, that they don't feel genetic testing is waranted.  I guess my thing is, that the type of cancer we have does tend to be more linked to a gene, and because of my age and being so young, it's something I'd like to explore. I live in Canada however, and I can't just pay for the testing like you can in the states, especially if my doctor doesn't think it's necessary.
I say, if you can have it done and it brings you peace of mind, why not.
Take care,
Becky

[nyc lady]

I do not know the answer to your specific type of OvCa - I do believe that there is at least one other poster, Tybear with this type and she will be along soon to share her story.

As for genetics, I have done a lot of research and do educational seminars that include some of these stats, and stats are really just numbers....OvCa within itself is a rare disease, especially for someone your age.  Now over 90 percent of OvCa's are sporadic, making less then 10 percent genetic.  The risk, now remember the risk is less then 10 percent, increases when first line relatives, mother, sister, father have OvCa, Breast or Colon Cancer.   These cancers are based on BRCA I and II genetic mutations.  Now the risk of being dx'd with these cancer when testing positive for this mutation is 40 percent.  There are women that after their child bearing years will have profolactic surgery.

So, basically, the odds of OvCa being genetic is slim, but then so are the odds of being dx'd with this disease....have you thought of seeing a genetic counsler?

Please keep us posted on what you decide to do.