Hi,
My grandmother has had breast cancer and my mother has recently been diagnosed, and because of this family history, I saw my GP and asked if I could have a mammogram. However, that was over two months ago, I rang my Surgery this week and there is no note on my file showing that my GP has done anything, and the receptionist said because of my age (36) I am not a priority and will have to wait.
Does this seem right?
Also, am I able to pay to have a mammogram privately, and if so, does anyone know how long you wait for the results and how much it would cost?
Many thanks.
Hi Kezibel,
No this does not seem right if that is what you want. I had regular mammograms and ultrasounds following my mother’s diagnosis, but I found my lump with self examination. I have a friend whose mother also has BC and they gave her an MRI. Is there another GP in the practise you can talk to?
Good luck,
Kat x
Hi Kezibel
Sorry that you are having a worrying time at the moment. I think that you would get a more individual answer and support for your concerns if you were to contact our free helpline operated by trained staff on 0808 800 6000, open Monday to Friday 9-5 and Saturday 9-2. You could also contact our Ask The Nurse service via email at breastcancercare.org.uk/server/show/nav.527 .
Best wishes
Annabel
Hi
It certainly isn’t up to the receptionist to decide who is priority or not. If your GP agreed to send you for a mammogram, tell them this when you phone. Ask to speak with the practice manager and tell him/her that the GP was going to refer you and take it from there. If your GP has decided not to do so, then see him again or like Annabel says, see another GP. My mother had BC and I was told that my screening would start when I was 10 years younger than my mum was when she was first diagnosed. She was 60 and I developed BC when I was 48 - I found the lump myself before screening began, therefore self examination is really important in the meantime for you.
PS - I don’t think a private mammogram is that expensive and you should get results fairly but you shouldn’t need to go privately if you are considered at risk.
i went for mammogrammes from the age of 40 privatly as i had lumpy breast no family with bc, had a mammogram a year before dx the cancer didn,t show up,so they,re not totally reliable,
Lornaxxx
by the way i paid £125 4yrs ago, had to go through gp
Hi, thanks everyone.
I have made an appointment at my Surgery to see another GP, which is tomorrow.
I’ll let you know what this GP says …
xxxx
Hi Kezibell
Just thought I would put my oar in here!!
It must be a worrying time for you, and you are right to be “assertive” in your own health care.
I agree with everyone else, the receptionist shouldnt be deciding your treatment, and that if you are worried, your GP should allay your fears either by referring you on, or referring you for a private appointment.
I would offer a couple of words of caution. Many NHS Trusts do not routinely offer mammograms to patients under 40, as there is a risk from early sustained radiation exposure caused by starting screening earlier, and because younger breast tissue is denser mammograms might miss more things. Your GP might be acting on this information but not explaining it to you.
An alternative might be an MRI scan - but again many Trusts cannot afford to offer these free (even with a BRCA mutation confirmed I had to pay for mine as I was 38! (£400))
YOu dont say how old your mum and grandmother were at diagnosis, but it might also be co-incidence that they have both been diagnosed - tragic though that is - and you may need to do more research to confirm or deny a family history.
I have found that the only person worried about my health is me, so assertiveness is the key unfortunately. Dont be fobbed off by your GP, and good luck with your appointment tomorrow.
Jane.
Hi everyone, and thank you Jane for your comments, they are similar to that made by my GP this morning.
My mother was diagnosed in February this year aged 58 (she has had previous lumps removed but not cancerous) and my grandmother had a cancerous lump removed about 5 years ago and this year her mammogram showed pre cancerous cells so she was advised to have her breast removed (aged 78).
My GP did mention the risk of radiation at my age and did say that it may not be genetic between my mother and grandmother, it may just be unfortunate, as he said about 1 in every 14 women will have BC.
Anyway, he has said he will refer me to a Genetic Clinic where they can assess if I have a higher risk of getting BC and we will take it from there.
So now its just a matter of waiting for that appointment letter to arrive …!
Thanks everyone, best wishes
Kerry
Kerry
I am glad that your GP took you seriously and gave you information that was helpful. I hope you feel abit less stressed by your situation.
My experience of my Genetics Clinic was good, and they are the best people to give you advice on your actual level of risk, and will perform tests if they think it necessary. Not sure how long your wait will be, but at least you can focus on something being done - though dont be afraid to chase up the referral if you get anxious!
best wishes
Jane
Hi Kerry
I am pleased that something is being done for you. I hope there isnt a genetic link for BC in your family. I was sent to the genetic people who did tests on me looking for a dodgy gene as my mother had BC and my son had a rare childhood cancer. Fortunately, it came back negative and I was told that most genetic type cancers show up in young people, so bearing that in mind, the fact that your mum was 58 and your grandmother in her 70’s when they developed cancer, it is looking unlikely that you will have a genetic problem, although everyone is different. The main thing is that you are being taken seriously.
I went to my GP and asked for breast screening but was refused; I was diagnosed Stage 3 Grade 3, two tumours, 4 months later and not picked up on mammogram when diagnosed.
It’s a fact that BRCA mutation carriers are a lot less likely to have mailgnancies show on mammogram than MRI and now the NICE guidelines even say that we who have ovarian/breast cancers in our families (when meeting certain criteria) should be offered MRI screening. You can read these guidelines on the NICE website if in any doubt.
As far as PCT funding for these is concerned then:
- Ann Marie Rogers’s Hecerptin wasn’t funded by her PCT 4/5 years ago until she took it to the High Court. She dug her heels in …
- PCTs will have a small handful of mutation carriers who qualify for MRIs and therefore the funding business is tosh i.e. peanuts - dig your heels in.
- Refer everyone in your team to the NICE guidelines and write to the head of the PCT asking for your MRI to be funded.
- If they still decline then write a letter of complaint to them.
- If by now they haven’t “given in” then it is VERY easy to send your complaint to the Ombudsman, surprisingly easy and the basis of your complaint is that the PCT have failed to follow NICE guidelines.
That should be about it.
Hi,
After another visit to a different GP, I was sent a genetic questionnaire from my local hospital to complete about my family history, and now I have been sent an appointment to attend the genetics clinc.
Can anyone let me know what will actually happen during this appointment, will it just be a chat, or will any tests be done?
Many thanks.
Hi kezibell
You might find the booklet ‘Breast Cancer in Families’ helpful. Please see the link below. Also, our free helpline is open Monday to Friay 9-5 and Saturday 9-2 on 0808 800 6000.
breastcancercare.org.uk/server/show/nav.30/changeTemplate/PublicationDisplay/publicationId/70
I hope it all goes well for you.
Best wishes
Annabel
Hi Annabel, I’m unable to open the leaflet, it says there is an error!
I rang the hospital to enquire about my appointment and was just told it would be a minimum of 45 minutes - so what will happen in that time??
Hi Kezibell
If you try again the leaflet should open now. To help you through this I would suggest the same as Annabel that you give our helpline a ring and have a chat with one of the staff here, who will support you through this. Calls to the helpline are free and are open until 5pm today.
Kind regards,
Jo, Facilitator
Kezibell
- do not be fobbed off by your GP or anyone else
- NICE guideliness state that you should be offered genetic screening
- if your GP ignores you go to someone else and INSIST on MRI scanning
- IF you have a genetic mutation mammography will NOT be reliable
- do not wait to see if you have a mutation if you want to be screened - it takes up to 12 MONTHS for genetic testing
- if all else fails then register at another sugery - stand your ground because no one else will do it for you
From someone with a family history, refused screening, NICE guidelines not followed diligently, with a delayed diagnosis that could and should have been avoided - 2 tumours, stage 3, grade 3, 100% lymph node involvement and vascular invasion.
They played fast and loose with my life - don’t let it happen to you.
kezibel
i had a genetics appointment a few years ago…we just had a chat and discussed my family history and the risks and then she asked if i still wanted to go ahead and had to sign consent forms for blood testing.
i had the blood test but it was about a year before i got the results.
i wasnt officially high risk as my mum had BC at 57 and i had it myself at 37 but was entered in to the brca3 trial where they tested for brca1 and 2… the results were negative but im being re-referred for proper genetic testing not as part of a research study since developing anew primary tumour in the other breast.
my sister also went a few months later as she had 2 first degree relatives… me and mum… but they didnt test her blood just took a family history.
good luck with your appointment.
would offer a couple of words of caution. Many NHS Trusts do not routinely offer mammograms to patients under 40, as there is a risk from early sustained radiation exposure caused by starting screening earlier, and because younger breast tissue is denser mammograms might miss more things. Your GP might be acting on this information but not explaining it to you.
An alternative might be an MRI scan - but again many Trusts cannot afford to offer these free (even with a BRCA mutation confirmed I had to pay for mine as I was 38! (£400))
YOu dont say how old your mum and grandmother were at diagnosis, but it might also be co-incidence that they have both been diagnosed - tragic though that is - and you may need to do more research to confirm or deny a family history.
My brother’s wife have this problem. Please give me any suggestion.
Hi kinkon23
Could I suggest that you give the helpline here a ring and have a chat to one of the staff here about your concerns. Calls to the helpline are free 0808 800 6000 lines open M-F 9-5 and Sat 9-2
Kind regards,
Jo, Facilitator