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About to undergo genetic testing

28 REPLIES 28
Janey2
Member

Re: About to undergo genetic testing

Louise, how did you get on? x

Janey2
Member

Re: About to undergo genetic testing

Fingers crossed xx
Louise35
Member

Re: About to undergo genetic testing

Thank you 2 days to go now so nervous x
Janey2
Member

Re: About to undergo genetic testing

Louise, it's such a horrible place to be in waiting on results from breast surgery and waiting for treatment plans.  Wishing you all the very best for your results.  x

Louise35
Member

Re: About to undergo genetic testing

Thank you both for your replies. Hope you both get your answers soon. I should probably take smaller steps and not worry about this till I hear back from them. I ahoy a concentrate on my results from my mastectomy first, think I'm getting ahead of myself.
Janey2
Member

Re: About to undergo genetic testing

I had a similar experience Peggy, with only a shortish wait for the first session with the Genetic Counsellor.  After I met with the counsellor and gave her my consent to investigate further, she took my case to their team meeting and had agreement for testing.  I met with the consultant for the first time last week for further discussion and agreement I would like to be put forward for the 100,000 genome project.  It's been such a great service.  However, I have slowly realised I won't get any quick answers!  xx

charboyles
Member

Re: About to undergo genetic testing

Yes you can pay privately, but it will cost a lot  if you do. It is a bout 18 weeks waiting lust, before you see anybody (mine was only 9 weeks) The genetics do alot of paperwork before even seeong you, by producing a family tree, checking cancer records etc, they want to be a 100% sure it is worth the NHS payong out that money. After you have spoken to the genetics doctor, all the pros & cons. He or she ask you if you would like the test. When I was asked,,it was an easy decision to say yes and she then pulled the form of my folder and said I had already been approved by the team, before she had even  spoken to me. I was told I could have the blood test done that afternoon, which was great, but the down side for mw was that two nurses could not draw blood from my arm, so I had to go back a couple of days late, which was a pain. Now I am playing the waiting game for the result, if I can get earlier mammagrams for my four daughters I will be very happy lady.

 

Peggyxx

Louise35
Member

Re: About to undergo genetic testing

Yes I filled it in 2 weeks ago now, very difficult filling it in as my mum passed away @29 and I was 10 so had a nightmare getting the history as there is only one member of the family to talk to but I think I got everything I needed, hopefully I should hear soon. Is this a test that could be paid for privately if I needed too? X
charboyles
Member

Re: About to undergo genetic testing

Have you filled the form in yet? Though it is mainly to do with BC, you still gave to put down any other cancers in your family on bith sides, whether they are a living or deceased, When you go to your first app it is mind vogglingm but very intersting. I would advice take somebody with you, Good Luck if you are offered the test, it is more for peace of mind and for the future of the next generations to come,

 

Peggyxxx

Louise35
Member

Re: About to undergo genetic testing

Hi all, I have just been diagnosed with bc and also been referred for genetic testing. I'm not sure that they will test me as my aunty has already asked and they said she didn't meet criteria,. I'm really hoping I will be tested so I know either way and also feel I need to know for my children so they can be tested if need to be when they are older.
Janey2
Member

Re: About to undergo genetic testing

Good luck x
charboyles
Member

Re: About to undergo genetic testing

All done & dusted, so will know result in 6-8 weels time.

 

Peggy

Janey2
Member

Re: About to undergo genetic testing

Good luck for today! X
charboyles
Member

Re: About to undergo genetic testing

Hi All

Well came back from my first appointment regarding genetic testing. Well what an experience, mind boggling, you need to have a good brain to understand everything that is been said by your geneticist. I agreed to be tested for the fault genes, I asked when would I have the blood test, she told me that the form had all ready been approved and I was able to have it done this afternoon. Great I thought!, get it over and done with, daughter desert me and left me to face the needle alone. It took two nurses to try and draw blood from my right arm, still nothing, so have got to go back to the path lab on Monday and try again. Never had this problem before! Think of me on Monday morning.

 

Peggy

Nurse_BCN
Moderator

Re: About to undergo genetic testing

 

Hi Mrstimps

 

Thank you for posting. Your post was forwarded to us by the forum moderator.

 

You mention that your mom has talked to you about testing. To start the ball rolling, she can talk to her consultant who will be able to advise if genetic testing is recommended in her situation. Some information on the net can be contradictory which is why your mom’s consultant is the best person to advise you both.

You may be interested to know that the biggest risk factors for developing breast cancer are being a woman and increasing age. There are only a small number of people who will be at a greater risk of developing breast cancer because they have a significant family history.  

 

Do call our free, confidential Helpline if you would like to talk this through or have any further questions. The number is 0808 800 6000. We’re here Monday to Saturday from 9am. On Wednesdays we’re open until 7pm, other weekdays it’s 5pm and on Saturdays it’s 1pm.

 

Best wishes

 

Eve

 

Breast Cancer Care Nurse

 

Please read the Ask Our Nurses disclaimer . This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

Janey2
Member

Re: About to undergo genetic testing

Hi Mrstimps. Not sure if you're UK based. As I had 2 primaries, I was referred to genetics. If they identify a faulty gene, the team will then write to my relatives to advise them. Has your Mum been tested?
Mrstimps
Member

Re: About to undergo genetic testing

Hi Ladies,
First visti to this part of the forum as my moms recently talked to me about testing. She has secondary bc 15 years agter her firsr diagnosis and we have a somw family history that we know of ( 2 aunts and nan but a different cancer) how donyou start the ball rolling? Do i speak to my gp or mom to her consultant? Info on the net about testings a contradictory so any help would be great x
AileenAquino
Member

Re: About to undergo genetic testing

Good luck!! God bless 

Warrior84
Member

Re: About to undergo genetic testing

Hi guys

I'm 32 was diagnosed with grade 3 bc last summer. Been referred for genetic testing and now waiting for results. Also had first mammogram this week on healthy boob. Hopefully won't be called back in for either although there has been no reason found to suggest why I should of got cancer.....

Xx
Janey2
Member

Re: About to undergo genetic testing

Hi and good luck to everyone waiting for tests and results.  

I was referred to the genetics team at the end of last year, as I have had both endometrial and now breast cancer, with my Mum having had breast cancer and then bladder.  The endometrial cancer nurses thought I should be tested for Lynch syndrome.  However, when we went through the family cancer history together (a lovely swathe right through the maternal line) with the genetics counsellor at the end of January this year (appointment was about an hour), they decided to test me for a pten gene mutation, which can cause Cowden Syndrome.  The results took about 12 weeks to come through and I was very glad to be told I don't have that mutation.  I was then tested for the BRCA 1 and 2 gene mutations.  These were also negative - a 6 week wait.  I'm now waiting to meet with the genetic consultant at the end of next month and believe they may be revisiting Cowden Syndrome (other genes can be involved), or I may be tested for Lynch syndrome.  I think I've resigned myself to something genetic going on, as I think they are spending lots of money on all these tests and I have been told to make sure my sisters tell their GPs and have annual screening.  I've resigned myself also to not having any answers very quickly.  

charboyles
Member

Re: About to undergo genetic testing

I was told it would be an 18 wks before I would have my first appointment, but it has come thorough within a short scale of 9 wks. I have just had  another sister been diagnosed with liver, stomach & bowel cancer and another sister is waiting her results of her mri scan for pressure on the brain. My Mum had breast cancer in 1933/4 and she was the first lady to undergo the new procedure of not having her breast remove and she lived to the old ripe age of 86, but two of her sisters also had the b c, but I'm the first female in the siblings. Let us know how you get on.

 

Love Peggy xxx

Eggster
Member

Re: About to undergo genetic testing

I am going to a genetics appointment on Monday.  I filled in the checklist a while back. My sister was tested last year when she was diagnosed and was brac2 negative,  but there is a lot of bc in our family (us 2, 2 nans, grandad,  2 aunts and a great aunt). We have already signed up for the 100000 genome project. 

 

Even though I have been diagnosed,  I still feel apprehensive having the test, it would still feel weird being told it was positive

charboyles
Member

Re: About to undergo genetic testing

Thank you for coming back to me so quickly, it has been very helpful. I filled my family history questionaire, before my first round of surgery. Family history is a hobby of mine, so I did have quite a lot of info and it was so surprising how many members of my family had died or had cancer, I think my expections would be to make sure my four girls had the chance for early screening, they ages are arranging from 40 to 22. A possible appointment of 45 mins.

 

Peggy

LFaye
Member

Re: About to undergo genetic testing

Hi Peggy,

 

I'm currently waiting on results so hopefully my appointment experience will be helpul to you. I think everyone's experience will be different, personally my geneticist was brilliant. She firstly asked me what my expectations were for the appointment, I told her I had none, because at that stage I didn't really understand why I was there. She then talked through my family history, they had taken all the info I had written down and searched on the cancer registry, to confirm the types of cancer in my family.

 

She then talked through all the science, my mind was blown at this point, amazing what they can do! She talked through the genes and the risks and specifically to me, which ones I may have. She asked me about family planning, as i'm 27 so this may impact on fertility. She advised I would need to speak to a genetic counsellor before making a decision and that it was a big decision to make, so to make sure I had thought through all the possible eventualities.

 

I'd say I was there for just under an hour in the end.

 

I hope this is helpful, like I said, everyone's experience will be different xxx

charboyles
Member

Re: About to undergo genetic testing

Hi

I have just had my appointment come thorough for the genetic clinic at my local hospital. I have filled in the family history forms. Could you please tell what to expect from this appointment.

 

Thank You

 

Peggy

sisterlylove
Member

Re: About to undergo genetic testing

Hi Charlotte

im sorry you are going through this and oarticulary that you don't have your family support.

im not BRCA but believe I do have an inherited gene predisposing breast cancer as we have a very bad family history both my sisters mother and grandmother have had BC.

i am having a prophylactic double mastectomy and recon next month. It's very daunting but if you do find out you are BRCA + then I will happily talk to you about my expierience although I am older than you as I'm in my forties.

good luck tomorrow

SL X

Gran60
Member

Re: About to undergo genetic testing

Hi I've just been through genetic testing several weeks ago after being diagnosed with bc in March
I was aware that the gene was in my family as my mother aunt and grandmother all had bc. I must admit that I hadn't thought about getting tested until being diagnosed and my surgeon suggested that I should get this done. As I have a daughter and granddaughters I really wanted to know if I could pass this on to them
The hardest part was finding out family history but was very interesting to discover how many family members had forms of cancer throughout the years.
Had blood test and a wait of 6 weeks for results which showed that the gene hadn't shown any change bc wasn't gene related. They did suggest that daughters and niece start getting checked age 35.
Because of my family history I was having yearly mammograms until I was 55 then every 3 years it was at this that bc was found I had no indication of anything wrong. I've been in for surgery and finished radiotherapy end of June. Started hormone treatment in May. With all this going on I having to decide about if you want to know about this gene feels like just want someone to tell you its going to be okay. There's nothing wrong with being anxious about this but you'll find the genetic nurses explain everything well and you can talk through your concerns
Your right most people don't want to talk about bc or whether you might have the gene. So this forum is great to be able express your feeling to others who are going through similar issues.
Good luck tomorrow
charboyles
Member

Re: About to undergo genetic testing

Hi Charlotte

 

I have just had surgery for BC stage and seem to recovering well. Two days before I went into hospital for my op, a eight page family history form came through the post, was surprised as I had not been informed this was going to happen. It took me and my daughter two hours to fill in, it was so surprising how many many people in the family had cancer, though not passed away from that condition. Luck for me I research family history as a hobby, so it has come in very helpful, plus also I have four daughters. I am now waiting for my first appointment.

 

Love Peggy

Lottiekins
Member

About to undergo genetic testing

Hello,

 

I'm new here. Im 28, and we have the BRCA2 gene running in the family.

I had my first appointment with the genetics team a week and a half ago, and another appointment tomorrow.

 

I know that I want the test, but I am feeling a little aprehensive. I got told its up to a 4 week wait for the results, and I am not really sure how I am going to manage it. Our family are far from close, and although people know I have chosen to go ahead with it, and that it will likely be tomorrow that I get the test done, nobody has checked in or called, and I know that I will likely be on my own with it until I get the results.

 

I was hoping we would sit down as a family and at least chat about the gene/implications, but unfortunately this hasnt happened. Everything is very hush hush!

 

The idea of finding out fills me with dread, but I know that I would want to go ahead with a masectomy if I test positive. I watched my best friend die of cancer 3 years ago, and really dont want to end up in that boat, so it doesnt seem like much of a choice to me - I will be kicking myself if in 10 years time I end up ill and I could have done something to prevent it.

 

So, has anyone got any advice with dealing with the wait? Are any of you undergoing testing at present or have come out the other side? 

 

I would love to chat to people about their experiances, and would very much appreciate a hello even if you have nothing more you can say - I guess I want to make this feel a little less like a dirty secret I'm carrying around with me!

 

I think tomorrow is the day for me. I had the option last week, but needed a bit of time to get my head around it. I feel as ready as I'm ever going to be, but I am pretty nervouse about the whole affaire! 

 

Hope to hear from some of you soon,

 

Charlotte.