going to see a genetic councilor on tuesday, what can i expect?

hi, both my parents died of cancer, renal (though spread was everywhere) for my mum, so not sure if there was more than one primary, i do not know exactly what cancer my father had as we had not been close, but i do know that my grandmother on my fathers side had a “woman’s cancer” though there is no longer anyone round to ask and in the 1950’s no one spoke about it anyway. my next to eldest sister had breast cancer at the age of 43, it was hormone receptive, three years later she had breast cancer in the other breast that was hormone negative. i was diagnosed with breast cancer in june last year, hormone positive, i am hoping that there is no genetic link. any advice would be appreciated so that i can prepare the best i can for this meeting.
Alisonxxx

Hi Alison,

The first visit is to discuss your family history and assess your risk. As both you and your sister have had bc they may offer you testing for BRCA mutations. This is a simple procedure - a blood sample is taken. If you are offered testing then ask what percentage of the gene is tested. Anything less than 100% can give a false negative result and you will be left in limbo not really knowing whether you have a mutation that has been missed. Cancers genetics are interested in are breast, ovarian, prostrate, melanoma and pancreatic so it may be useful for you to have information to hand of any family members who have had these cancers. As far as I’m aware renal cancer isn’t associated with a BRCA mutation. Genetics will find out the cause of death of you grandmother, they may even be able to obtain samples of your parents tumours as well and test them. If you’re offered testing then ask for ovarian screening, if you have a mutation then you have a very increased risk of ovarian cancer.

Good luck!

Thank you Helen, my mother died 21 years ago, my father about 8 years ago, would they still have samples about? i insisted on having my ovaries out so that i would not go through the menopause twice, so they went in dec last year. i have a feeling that if i did have the gene then it would have come down my fathers side, there used to be 13 of them, as far as i know most of them are now dead and mostly from cancer, but as for my mum, well, she was dx in the feb, they only looked at her kidney, they opened her up, closed her back up, the spread was so vast and then she was dead in the early july of that year, they didn’t give her any treatment besides morphine, she was 54 so had probabley had cancer for years, but had been treated for an underactive thyroid and bad nerves, thank god things have improved today!
Alisonxxx

Hi Alison

I’m so sorry you have had so much cancer in your family. I hope you are coping ok with all the treatments.

I went through the process of genetic testing in sept as my sister died age 35 in March and Aunt died of Ovarian cancer before 50. I am brac1 and therefore decided to have a double mastectomy and reconstructive surgery. I had this done 31st dec and will have my ovaries removed by age 40.

You will meet with a genetic counsellor and probably a breast care nurse. They will discuss with you all the cancer you know about in your family and create a family tree so they can look at how the cancers have travelled. They will be mainly looking at any close realtives such as parents, sisters etc that got cancer before the age of 50 and any that got it very young. When testing for Brac1 or Brac2 gene mutations they will be looking for breast cancer or Ovarian cancer and possibly prostate cancer in men. From the info gathered they will assess your risk. I am not sure whether they will have blood or tissue samples from your deceased realtives? Maybe the ones who died more recently. Since you have cancer maybe that’s enough for them to test?

They will discuss with you if they believe you are at risk and if you have children that you are worried about. If you test positive for brac1 your risk can be up to 80% of breast cancer and 40% Ovarian and Brac2 is similar but lower Ovarian risk I think. They would also look at when your relatives got cancer and use that as a guideline.
If you test positive or any of your family does you qualify for annual Mamograms or Mri scans but would also be given the option of sugery.

I hope this helps. Good luck

Katie xx

thank you for that Katie, its been a great help, as to annual mammograms, even i don’t seem to qualify for that!!! apparently at the hospital i attend they only do them every three years!!! how bad is that?
Alisonxxx

hi, went today to see the genetic councilor, she was very nice, gave her all the information she needed, so will hear something in a few months time probabley, have been told that if the nhs will not fund the testing, that some trail that is going on will probably fund it, so will have to wait and see what happens, anyway, thank you so much for your help, and it did help xxxxxxxxxxx
Alisonxxxx
ps, she is also getting in touch with my new onc, to tell them that i should be given yearly mammograms, so again, thanks xxxxxx

Hi Alison

That’s great news. Really glad things are getting sorted for you. You definately deserve annual mammograms anyway!! Hope you get tested soon.

Best of luck

Katie xxx

Hi Alison,

I’m glad you found the visit informative and useful. What I’m gob smacked about is why you will only get annual mammograms on the strength of the genecist writing to your Onc? You’ve had bc so you should have been offered them routinely. It wears me down when I hear of women who don’t get the follow up care they deserve and surely are entitled to. whether your bc is genetic or not is rather irrelevant here, you’ve had bc therefore demand mammograms and don’t be fobbed off.

Hi Helen, i got a phone call from the geneticist today asking for the name of my onc and surgeon, she is writing to them to say that i am to have yearly mammograms, i really do think it is a postcode lottery! a lot of good has come from this visit for me, but i am planning on doing a bit of campaigning in the near future re aftercare, i have had a realy awful time since being dx, i would hate any other woman to go through what i have! thank you for your support, its been really really helpful, and you as well Katiexxxxxxx, i will be back to ask a lot more questions of you both i am sure, your both such an asset to this site
lots of love
Alisonxxx

Hi Alison

You are completely welcome. Good luck with the campaigning. I just always presumed that anyone with bc got them as routine. That really is so shocking of it is a postcode lottery!! Where are you from?

I have private heathcare (PPP) and my preventative sugery wasn’t covered as it is classed as experimental!! I think that is crazy too! Surely for Brac1 or 2 carriers it is the only sensible option!

Take Care

Katie xxxx

Hi Katie, i live in Derbyshire, so i got the choice of stockport, east cheshire or chesterfield, i opted for east cheshire, apart from the onc, well, the treatment has been very good and very quick.
Alisonxxx

Hi Alison,

Just been reading through your post. I can’t believe you’re not having yearly mammograms. Like Katie, I have the BRCA1 gene. I had a hysterectomy a just over a year ago and am seeing a surgeon in May for preventative surgery, I hope you manage to get the mammograms sorted, you should definitely be having them more often!!

Since I was diagnosed with the gene nearly 2 years ago I have had 2 mammograms and an MRI. It should be the same wherever you are. It is so annoying.

Hope you’re not waiting too long to hear from the genetic counsellors.

Cathy x

Hi Cathy, my genetic councilor has written to the hospital i attend telling them that i need a mammogram at least every year, so hopefully that will be done. i have never been offered an mri, i don’t think they do unless you get other symptoms. i will post on here again as soon as i hear either way from the genetic councilor, again, thank you all for your good advice and support, its been really helpful
Alisonxxx

Hi
Am confused about all this. How do you know if you need genetic testing? Why is it not routinely done? Thanks for any basis info you can give.

I was referred to a genetic councilor due to having a strong family history of cancer, both parents diagnosed with cancer, one renal, the other not known to myself or my sisters, my fathers mother who had a “womens cancer” and died at the age of 55, my mother was 54, my father was 69, and i have an older sister who has had a hormone receptive in one breast aged 43 at the time, followed three years later by a non hormone receptive in the other breast, so apparently my chances of having the gene is high, but they will look into records first before they decide to test me, also, we all have daughters and sons. hope this helps
Alisonxxx

Hi Alison,

Sorry to jump in here but was just reading your thread and also cant believe you are having to ask for a yearly mammogram. Just in case you struggle and you are thinking of changing NHS trusts I am being treated at Stockports Bobby Moore unit and having rads and oncology at Christies and they are excellent. The BC nurses at the Bobby Moore unit are fantastic. I live in Middlewich but am originally from Stockport and my GP at the time of finding the lump was still at Stockport due to my working there I hav now changed to a local GP. There has been no problem with not being local apparently patients can choose which hospital to be treated at now.
Good luck with everthing its sounds like you arent having the best of times. Shonagh x

Hi Shonagh thank you so much for a lovely reply xxxxx if it wasn’t for my lovely lovely surgeon who treats me with the upmost dignity and respect and who has ensured that i had a bone density scan, physio, and lots of other things that the onc should have done, well, i don’t want to lose him, i did have the choice of stepping hill, callow and macc, but went for macc as its only 10 miles from where i live. and of course the genetic councilor has written to my hospital telling them that i have to have yearly mammo’s due to my family history, so that should be in place now.
lots of love
Alisonxxx