Hi all,
I’m new to this and I hope you don’t mind me posting for some advice.
My mum was diagnosed with breast cancer in her 30’s and died just after her 40th birthday. I was 9 at the time and I’m now 28.
Genetic link has always been something that has been on my mind and it’s only now as I’m getting closer to my mums age of diagnosis I’m seriously considering this.
However, unfortunately my mothers mum died shortly after my mums death. (This was not through cancer and can only be explained that she was heartbroken by my mothers death and gave up- she stopped doing everything and spent all her time in bed/ stopped walking and months later went to sleep one night and didn’t wake up)
I was always told that my grandmothers aunt (her mums sister) had breast cancer and so did her daughter.
My mum has a sister. My maternal grandfather died of oesophageal cancer.
My dad is an only child and he lost both his parents when he was young.
I do not have any other family information and probably cannot prove any of my grandmothers sides history as there arent any family members left now to speak to. Sadly, I do not see my mums sister any longer and I doubt she would want to help- so that is not and option.
I’m about to get married and would like to start a family soon and this is my main reason for now wanting to look Into this. If my mums cancer was genetic and Iam at risk then I feel I’d like to know. I saw what my mum went through and how hard it was for her to leave 3 children behind.
Any advice or where to go from here would greatly be appreciated. I actually have a ref for birminham genetics service that I have filled out but I’m not sure if it’s worth it given I have no living relatives to test from. However, surely given my mums history there would be something available? I don’t have a very supportive gp and have discussed screening with him who said Iam too young for scans as they won’t be effective. His response was “you will just have to hope u don’t fall to the same fate as your mother” ( I wish I was joking but they were his exact words!)
Many thanks and thank you for taking the time to read this
Sarah x
Hi Sarah,
Firstly, I’m so sorry to hear that you list your mum at such a young age and the huge impact it had on her own mum. I am also shocked to hear that your GP is not only unsympathetic but completely out of touch. You can be referred by your GP to a genetics clinic in the first instance. Actually getting to genetic testing is more complex, but you would be entitled to an assessment of your risk and screening.
This is such a happy time in your life. Please do not let your understandable fears cloud your happiness or your plans to have a family. I have quite a lot of information I can post, but it may take me a little time.
Hope this helps a bit in the meantime.
Rattles x
Hi Rattles,
Thanks for your response.
Iam trying not to let it cloud my future and sometimes I don’t think about it much and other times it’s all I think about.
I’m also aware that I’m not in the same position as my mum was and indeed the position that many other women are finding themselves and so I don’t want to be wasting people’s time looking into genetics when there are people who require testing more than me.
I’d really appreciate any further information you may have.
Thanks for your time
Sarah x
Hi Sarah, I think what you describe is understandable, esp that switch between getting on with life and then not. I’m copying this link to an on line resource. Breast Cancer Care produce a booklet as well.
familyhistory.breastcancernow.org/
My advice would be to get your GP to refer you to a genetics Centre. They can determine your risk.
Good luck, Rattles x
Hi rattles,
I’ve only just seen your response!
Thanks for taking the time to reply.
I’ve been referred to Birmingham and had a letter saying they have received my referral and will contact me in due course.
Thanks for listening and thanks for the link/ I’ve had a look and it’s very useful.
Best wishes,
Sarah x
Hi all,
Don’t know if anyone is still available on this thread.
I had an appointment 4th Jan with the genetics department from Birmingham.
Basically, I’m not suitable for genetic testing as my mum is no longer here.
They can offer me mammograms from 40years old and told me to come back in 5years time in case there are developments in genetics.
I had some questions in the consultation and to be honest was really disappointed with how it went. I just felt I wasn’t listened to and was patronised quite a bit.
They did say that with my consent they would obtain my mums histology to assess what type her cancer was and gain some information regarding hormone receptors.
Today I have received a letter following the consultation summarising what was discussed. I now just feel really upset but don’t know why! At the end of the letter it says how we discussed testing my mums histology then goes on to say- in reality this may not be possible as your mums surgery was done in the 90’s which was probably before testing was done. This was not said to me in the consultation and was dictated retrospectively. I guess I was holding on to that- for myself also to gain some more info about my mums cancer.
I suppose I don’t feel reassured from the appointment. Screening at 40 is good and helpful but that didn’t help my mum. I’m so sorry if this doesn’t make sense and is a bit of a ramble. I’m also sorry if I’m sounding selfish to you brave women going through this. I just don’t really know who to talk this through with.
Lots of love
Sarah
Hi Helen,
Thank you so much for taking the time to reply and telling me your story. I was feeling a little down tonight and reading your response has really helped.
I’m going to do what you suggested and try to get some more information.
At the genetic appointment they had the info about my mum and her fathers cancer history. However, they had not other cancer history and could not prove anything else. They said that as they only have proof of my mums breast cancer history then it’s unlikely genetic. So when I then said- that is then reassuring to me if it means I’m at same risk as the population. Then I was told that was not correct and I was not to walk out thinking I was at same risk as others and that my mum was very young and that’s unusual so is likely a genetic issue. This confused me! Which is why now I don’t feel reassured by screening at 40.
My dad thinks I shouldn’t worry and is quite sentimental and believes I will be fine and my mum wouldn’t let this happen to me… As lovely as that is its not realistic.
Thank you for your reply. I’ll see what more information I can get and look at where to go from here.
I hope you are well and send you lots of love
Xx