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Would welcome some feedback..appointment with Genetic clinic

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Re: Would welcome some feedback..appointment with Genetic clinic

oops meant to add.. My sister has now started to have yearly mammograms, she's 45 and my daughter will be kept a close eye on from her early 30's.
x

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Re: Would welcome some feedback..appointment with Genetic clinic

Thanks to everyone who replied to my thread. I had my appointment, my daughter came with me and as lots of you had said it was not the least bit scary. I've now given bloods and should get the results in around 12 months time.
I'm still waiting for my grandson..about a week to due date. 🙂
Love Belinda..xx

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Re: Would welcome some feedback..appointment with Genetic clinic

Hi Rita! Glad to hear nothing was found in your results.
Thanks so much for the info on the Marsden trials. I will definitely ask about this and will pass on this info to two ladies who use the secondaries forum who are also starting to think about making genetic enquiries.
Thanks again..Belinda..x

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Re: Would welcome some feedback..appointment with Genetic clinic

Hi Belinda

Firstly, what wonderful news, congratulations to your daughter.

Results may not take as long as you fear. I was tested by St George\'s genetics department, and my results were back within 3months; thankfully nothing was found.

I was also entered into a trial for brca3 at the Marsden, where 100% of the genes are tested as opposed to the 60% tested by the NHS. It may be worth asking your genetics counsellor if they are recruiting for any trials.

Good luck with the results.

Love Rita xx

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Re: Would welcome some feedback..appointment with Genetic clinic

Hi Gingernut, thanks for the reply. I\'ve spoken to my daughter this evening and I\'m more stressed about it all than she is.
I had heard it can take a while for conclusive results and although I\'m really well at the moment I realise I may not be here for the final result so I\'m trying to get the ball rolling and passing on as much info as I can to my daughter without worrying her too much at the moment.
I expect I\'ll be taking in plenty of questions!
Thank you once again, Belinda..x

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Re: Would welcome some feedback..appointment with Genetic clinic

Results May Take some time Hi Belinda,
I too have been through the family history/genetics process. The first appointment really isn\'t anything to get worried about - its quite interesting as they will do a family tree. Mine was a real eye-opener because my Mother and I both attended in the belief that if there did turn out to be a genetic mutation then it would be from her side of the family - she had BC in 1986. In fact it turned out that the genetic fault was from my Father. We had never considered that but when the family tree was done it was glaringly obvious. There were a great number of female relatives on my Fathers side who had suffered from Breast or ovarian cancer. Unfortunately all but one of those relatives had died so we were unable to do the test for a long time as you have to have tissue samples from two family members who had (or have) the disease. We eventually managed to track down some tissue samples which had been stored in Northern Ireland where my sister was treated until she died in 1994. I think it took about four years - start to finish for me - but that was just because of my particular circumstances - and i DO have the BRCA1 genetic fault.
With regard to your daughter and the unfortunate timing - You will probably have quite a few sessions with the genetics people before you reach the stage of having the test done. You may also be referred for counselling as i was so the process can take quite some time.
So don\'t worry about the test for the time being - just look at this appointment as taking the first step in a long process. Remember to write all your questions down and take them with you to your appointment too!
regards
Gingernut x

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Re: Would welcome some feedback..appointment with Genetic clinic

Hi Justine, thank you for replying. So good to hear your Mum\'s doing well. The appointment doesn\'t sound so scary now, thanks for sharing your experience. My appointment is 3 years to the actual day of my bc and mets diagnosis but I\'m not superstitious thank goodness!
I\'ve found it really helpful reading through lots of the postings here. From what I\'ve read elsewhere I\'m guessing my daughter might already be classed as medium or even high risk due to my having bc before the menopause?
I\'d read all sorts of conflicting advice on the net about checks taking place anything up to 10 years before my diagnosis. Mammograms v. MRI\'s for younger women too.
We\'ve been given an hour long appointment so we will hopefully have time to ask all our questions at the end.
Thank you once again..Belinda..x

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Re: Would welcome some feedback..appointment with Genetic clinic

Hi Belinda Mum and I found the genetics consultant very nice and knowledgable. As we were telling him about the family history (mum had bc aged 52, her 2 sisters died of bc in their 40\'s) he drew a family tree., which was really interesting. Mum was offered a test for brca1 & 2 (she\'s since tested negative, although not 100% of the genes are tested on nhs) and they went and double checked tissue samples and stuff from both my aunts. We found out that my mum\'s paternal grandmother died of bowel cancer in her early 40\'s and Addenbrooke\'s genetics determined that the gene came from her, and was passed on to mum and her two sisters by my grandfather (although he never had cancer). Mum has had a bilateral mastectomy and doesn\'t have any more checks or anything now, she\'s 3 years post diagnosis and doing well. I myself am classed as high risk, and start having routine checks in just over 3 years time (when I\'m 35, as my aunt was diagnosed at 40).

Good luck with your appointment, and let me know if I can help with anything.

take care
love
Justine

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Re: Would welcome some feedback..appointment with Genetic clinic

Hello Helen thank you for your reply. My daughter\'s name is Helen!
I had thought I was a breast cancer \'\'blip\'\' in my family when I was first diagnosed. I\'d been told my Grandmother had died from cervical cancer. I found out recently it was actually ovarian cancer and her sister had been diagnosed with breast cancer, so as soon as I found out, by chance, I started down the genetic\'s route.
Thank you so much for the feedback Helen, I will discuss all with my daughter and see if she wants to accompany me. I would want to give a blood sample if it was thought necessary although it must be hard to deal with confirmation you have the gene.
I can cope with my own diagnosis but this is much worse.
Best Wishes, Belinda..x

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Re: Would welcome some feedback..appointment with Genetic clinic

Would welcome some feedback..appointment with Genetic clinic Hi there. I normally post on the Secondaries forum. I was diagnosed with Stage 4 bc in 2003. At the moment I\'m doing well.
I have been making enquiries through my onc\'s team for a genetics appointment. My Grandmother (on my Father\'s side) died of ovarian cancer when she was in her late 60\'s and her sister had breast cancer.
I received an appointment today for mid December and my daughter is invited to attend with me. Here\'s where I would like some feedback, opinions. I\'m 47 and my daughter is 27 and expecting her first baby in early January. It\'s such bad timing! I wonder how much you are told on the initial consultation? I think I would prefer to go on my own. This is meant to be a happy time for my daughter and I feel so guilty and sad about this.
Love Belinda.x

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Would welcome some feedback..appointment with Genetic clinic

Would welcome some feedback..appointment with Genetic clinic