Defective BRCA1 & BRCA2 gene

I wonder why they didn't test you before your current op if you have such a high family risk, and just do 1 op instead of making you go through it twice!!

Thanks for passing on any info you find.

It's a scary game of odds we play.

Maybe they think there would be too many unnecesary operations if they tested first??

Heidi

 

I am waiting for an appointment to have the gene test,as my oncologist said I should as I have a long history of cancer in my family. I f the tests come back positive then I would be looking at having a hysterectomy and a masectomy in my other breast. Just had a masectomy 5 weeks. The thought of having to go through this all again is really upseting, but  if it gives me a better chance of reducing cancer in my body , I will just have to deal with it, the best I can.

 If I find out any information I will pass it on. I am just doing some research now. Good luck with your results. Debbie

 

I am waiting for an appointment to have the gene test,as my oncologist said I should as I have a long history of cancer in my family. I f the tests come back positive then I would be looking at having a hysterectomy and a masectomy in my other breast. Just had a masectomy 5 weeks. The thought of having to go through this all again is really upseting, but  if it gives me a better chance of reducing cancer in my body , I will just have to deal with it, the best I can.

 If I find out any information I will pass it on. I am just doing some research now. Good luck with your results. Debbie

 

Update.... I'm booked into clinic end May and they will council me and assess what to do next and if I'm high risk enough to have it done.

I contacted the cousin who is still alive with BC and asked her about her BCRA testing as I heard she was pos, but she just lost her daughter to bowel cancer and hasn't responded!

The 2 cousins who died from BC were diagnosed late 40's, I'm only 41yrs old so think I'm being pro-active, hopefully early enough to prevent it. As so far our family hasn't had any sucess with surviving BC. Waiting on outcome of 3rd cous obviously.

I have no problem taking out uterus and ovaries, yeah no more periods!

The boobies are a little more scary, I scar and don't cope with pain well but have had 3 C-sec and other ops so sure I can get through.

Don't know anything about it but the dicky Dr said if have BCRA 1 that's bad??? So maybe he's wrong or maybe it's worse than B2?? B2 sounds terrible! I'm sure I'll learn more very soon.

Thanks for sharing this is how we learn from others and have a sounding board, I appreciate it.

Heidi

 

Update.... I'm booked into clinic end May and they will council me and assess what to do next and if I'm high risk enough to have it done.

I contacted the cousin who is still alive with BC and asked her about her BCRA testing as I heard she was pos, but she just lost her daughter to bowel cancer and hasn't responded!

The 2 cousins who died from BC were diagnosed late 40's, I'm only 41yrs old so think I'm being pro-active, hopefully early enough to prevent it. As so far our family hasn't had any sucess with surviving BC. Waiting on outcome of 3rd cous obviously.

I have no problem taking out uterus and ovaries, yeah no more periods!

The boobies are a little more scary, I scar and don't cope with pain well but have had 3 C-sec and other ops so sure I can get through.

Don't know anything about it but the dicky Dr said if have BCRA 1 that's bad??? So maybe he's wrong or maybe it's worse than B2?? B2 sounds terrible! I'm sure I'll learn more very soon.

Thanks for sharing this is how we learn from others and have a sounding board, I appreciate it.

Heidi

 

Hi Heidi,

Have you had any news about your results as yet?  I found out last year that I have the BRCA2 gene, it was a long process.  I was tested in the Nov & found out end of Feb 2010.  I thought I'd be cool with it and "just deal with it" but must admit I bawled like a baby when I got the results, I think I was shocked.  So the road to date has been long but I look at it like it's my crystal ball view into the future, but a future I can change.  I'm the lucky one!  I am going in for a radical hysterectomy in June and then the masectomy 6 months later.  So here's what I know about BRCA2 sorry it's limited, you just don't have the natural ability to fight cancer, your body doesn't recognise the tumors.  Once I have the hysterectomy my risk of breast cancer drops 50% as it's your ovaries that make whatever it is that increses your chance, then once the masectomy is done your risk of breast cancer in lower than the average persons.  I think you need the glass is half full attitude and be thankful that you can do something about it.  The irony for me was that the day I found out I had the gene i had taken my friend for chemo for her breast cancer when the genetics clinic called, I said to my friend that under no circumstances was I going to sit where she was sitting.  I am 40 and live rurally but have had great support and had metings with genetics specialits via tele conferencing and have the best onc. gynae. doing the surgey as a public patient.  Good luck!!!!!!

Jo

Hi Heidi,

Have you had any news about your results as yet?  I found out last year that I have the BRCA2 gene, it was a long process.  I was tested in the Nov & found out end of Feb 2010.  I thought I'd be cool with it and "just deal with it" but must admit I bawled like a baby when I got the results, I think I was shocked.  So the road to date has been long but I look at it like it's my crystal ball view into the future, but a future I can change.  I'm the lucky one!  I am going in for a radical hysterectomy in June and then the masectomy 6 months later.  So here's what I know about BRCA2 sorry it's limited, you just don't have the natural ability to fight cancer, your body doesn't recognise the tumors.  Once I have the hysterectomy my risk of breast cancer drops 50% as it's your ovaries that make whatever it is that increses your chance, then once the masectomy is done your risk of breast cancer in lower than the average persons.  I think you need the glass is half full attitude and be thankful that you can do something about it.  The irony for me was that the day I found out I had the gene i had taken my friend for chemo for her breast cancer when the genetics clinic called, I said to my friend that under no circumstances was I going to sit where she was sitting.  I am 40 and live rurally but have had great support and had metings with genetics specialits via tele conferencing and have the best onc. gynae. doing the surgey as a public patient.  Good luck!!!!!!

Jo

Yes my Dr was aware you needed to sign a legal document for this testing and assumed I did so at the pathology when they took my blood in two lots 20 minutes apart.

Stupidly if he had of read the letter and not asked me back in for results he would have realised I needed councelling prior to testing and arranged that instead of telling me "Nothing detected you are fine!" he obviously CAN"T READ!!!!

Now my blood which has been kept on ice for a week runs out today!

So I have to go get two more needles and wait 20 mins and start all over again!!!

Not Happy Jan!!!

OMG! How bloody inept of the people involved. You would think (and yes, I know assumptions are for fools) that when they have this kind of test being carried out, they would dot the i's and cross the t's to ensure this exact situation didn't happen. As for your Dr, I'm guessing he was aware of the testing adn you were waiting for results? Why would he say that you need cancer councilling now and not before he ordered the other test?

Poor thing, thinking of you. You know how to get me if you need to chat...

Ree  xoxox

Heidi - looks like you are getting some good advice here from the girls!  :-) But wow!  How frustrating for you with the results - grrrrrrrr.  I would be one unhappy lady - Is it just a matter of signing the correct form? I too am looking at having testing after I go through my treatment as now it is my mum and me - not that strong - but I have two girls and I want to be informed for them.  I have been advised it is quite a long and somewhat involved process to go through to have the testing.  Do you know of the Familial Cancer Centre at Peter Mac?  I was in seeing my surgeon last week and his office is in the same place - I picked up a brochure - I think if you go to www.petermac.org you might be able to find some information on the centre - you do need a referral.

How difficult for you to be in this situation - possibly why having the genetic counselling is a good idea with this/ :-)

Take care and I like your take on Red Wine!  (I just wish I had my taste for it back...)

Amanda xx