Screening for my daughter
Screening for my daughter Thought I’d share my experience of eventually succeeding in getting screening for my daughter who is 31.
I had bc 16 years ago when I was 33 and had a new primary in 2005. My sister had bilateral DCIS when she was 36. I have gone through gentic testing and have a missense change in BRCA2. Because the change isn’t one known to be significant at present my daughter could not have gentic testing. Nevertheless, with all this family history and the BRCA2 changes we still couldn’t get any screening for my daughter but she was told that if she wanted a bilateral mastectomy she could have it done immediately!!
My daughters GP, who has been very supportive, eventually referred her to the Royal Marsden (although it is not in her local area) and we went to the appointment last Thursday. The consultant was brilliant and my daughter was throughly examined and had a mammogram there and then. The peace of mind we both now have was worth the 4 year fight we had to simply get screening. The Royal Marsden will screen earlier than NICE guidelines and with a family history such as ours from the age of 30.
I hope this experience is useful to anyone out there fighting to get screening for themselves or, like me, for your daughter.
Sharon
Ive been fighting for screening since my mother was diagnosed at agfe 48, reason we where concerned is my grandmother was adopted at birth so we’re not sure if theres any history of this. I ws treated like a ‘normal’ person and was told that I had to wait until I was 50 like everyone else. I went through the NHS complaints went to the Scottish Public Services Ombusman, who wouldnt take up my case. Now my uncle has died of kidney cancer, so I wondering should I bother telling them at all, relations between me and genetic medicine are pretty bad.
Im glad your daughter got it though.
xx
Sharleen
Keep Trying Sharleen - Keep trying. You pay your taxes which entitles you to be heard - Surely its better they know before there is a problem or can treat earlier - Its cheaper for them for one.
Never worry about relations with them - After a while they might get fed up hearing from you and just give in.
I will certainly be making a nuisance of myself if I am not allowed to be tested early - As you’ll see from this site its not just over 50’s who get breast cancer anyone can - I am now too affraid to examine myself (I know ignorance isn’t an excuse) but feel sick to the core when I do i just can’t do it - If I found something it would affect my mum sooo much even if it was benign.
keep going and don’t give inl!!
Where do I go from here??? It does bug me that I pay taxes just like a lot of others in my position and that I cant get screened from an earlier age.
Its a case of where now ?? Ive exhausted the NHS Complaints Procedure, the SPSO will not take up my case, as they feel that everything was in order. My GP doesnt want to know, but I think theres more dubious reasons for that, after reading an article in the Scottish edition of the Daily Mail.
I was told by genetics that if Iwanted screened earlier that I could do this privately “but please be careful of acumulitive radiations doses” (do I look like a radiation expert???)
I havent told them about my unlce dying with kideny cancer yet, but Im pretty sure they will come up with another excuse to make sure I do bnot get screened. Maybe I should send them the same letter every week, week in week out, like really bug them so much, but then probably phone the police to me lol!!!
Sharleen
Keep on and on and on … Sharleen
I totally agree with lovemymum. My daughter and I fought for 4 years until she got this screening. She has been insulted (one doctor told us that she could be knocked over by a bus and never get breast cancer!!) been asked if she is paranoid and the final insult was when she was offered bi-lateral mastectomy/recon as this would be more cost effective than potentially years of screening, no boobs, no problem??
If your mum is ok now maybe she could help, I had the genetic test done to see if I has changes that may in the future impact on her.
Your other option is to get info on trials that are currently running although most of them have a minimum age of 35.
Hope this helps and please don’t give up.
Sharon3 x
Been fighting 3 years now Ive been fighting 3 years now. When I went to the meeting with the head of department she said to me “why are u worrying???its not like its gonna happen tommorrow!!!” My mum was with me that day, she got tore into the consultant but she just wasnt interested, she looked like she had something better to do.
They wont genetic test me, coz my mums two sisters havent had it, but as I said breast cancer doesnt pick and choose its targets. Originally I was dealing with a genetic nurse but I ruffled her feather too much and she went running to her boss, coz I was asking to many questions, what does that tell u??? I am really up against it with these people. They really dont like being questioned. I was given “we have the expertise in this field” in a letter …aye right!!!..more like expertise in accountacny possibly.
I got in touch with another cancer charity for advice (wasnt this one Id like to add), ages ago, and I was sent a leaflet on how to deal with paranoia and my mental health issues (lol!!) didnt know i had any ??? lol!!!.
I think some people need to take a jump into the real world.
xx
Sharleen
Sharleen,
Sorry I’ve not got back sooner.
Has you Mum been genetically tested? If not then that should be the starting point. If no significant changes are found then it will end there. I do have changes in BRCA2 but not significant enough for my daughter to have a test BUT it was enough for her to eventually get screening.
My daughter and I have experienced everything that you mention in your post including, as I mentioned before, one doctor asking her if she was paranoid and wishing it upon herself - pleeease …
We lobbied our MP’s and would have been prepared to go to the media if necessary. If I can help you and your mum in any way with raising this issue just let me know.
The other option, which we did try to take, is to go annually for private screening although if it’s ultrasound or mammogram you are looking for and you are under 40 very few clinics are prepared to do it. We did find a couple though and their charges weren’t too bad.
Sharon x