Hi I had my first phone appointment with the genetics councillor yesterday I agreed to go ahead with the testing. Has anybody else Bein threw this?? Thankyou xxx
Hi Xxnataliexx. I see no-one's been along yet to answer you, I can't help I'm afraid but am curious, what sort of testing for genetics are you going to undergo if you don't mind me asking? It might be an idea to Ask a Nurse here on Macmillan, but it might be a couple of days until they reply.
When you have a minute, it would be helpful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time and if you're not sure what you should write have a quick look at mine by clicking on my username.
Sending big hugs, Barb xx
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Hi it’a because i am 31 so they consider that young for this type of cancer. I think it’s to test for lynch syndrome and that’s past down from parent. If it comes back I have got this they will test my children when they are old enough also I will get extra screening for bowl cancer. I will pop something on bio later tonight xx
Hi, sorry it looks lkke I am jumping all over your posts at the moment, but I have had genetic testing. The first time was 26 years ago, and then more recently last year. I spoke about it in the lung group, which you can read HERE
I don't think that gene testing is something to be done lightly, but it does also have huge benfits to being tested. The down side is obviously the result can effect all of your family, and not just yourself. That is the one thing that members of my family have struggled with having the BRCA1 gene. The positives are there is so much more that is known now about treating cancer that has genetic mutations. So it can open up another level of treatments for you, that you may not of been offered before.
I know counselling was offered to myself and other family members being tested for the BRCA1 gene, if it is offered to you I would do the counselling before making the decision.
Take care
Hi I did put a lot of thought into it and the two main benefits are more testing if the result say I have a gene and also my children. I have read your story around the gene testing and it’s very interesting due to the cancer in your family and also ur endometrial cancer was rare! It’s all a strange place to be in plus am only ten weeks post op my ovaries was kept as I was stage 1a and young but that terrifies me xxx
Hi Natalie,
We haven't had genetic testing for Lynch, but both my daughters have been found to have a thrombotic tendency. It happened when my younger daughter had a DVT in her 20's, and the medical team suggested my other daughter was tested, too. They both have to have blood thinning injections when flying or pregnant, and can't go diving. (Not that that bothers them!)
It does mean that either my husband, or I, or both are the carriers!!! When I had my operation I told them about this and they took a blood test from me, which they subsequently lost! So, we still don't know!! I had to have blood thinning injections for 6 weeks, just in case it was me!!!
I think it is wise to know if you have anything like that, because they can take steps to avoid any problems. Good luck, xxxx .
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