I haven’t posted for a long time although I dip in and read others’ posts from time to time.
I was tested for BRCA2 due to my family history and my own pre-menopause breast cancer. I don’t have a BRCA2 abnormality (if that’s the right expression) but the geneticist said my daughters should be annually screened from age 40 as we have a greater risk but science doesn’t know what it is yet. I’ve since had my ovaries removed as I kept getting cysts despite now being post- menopausal + family history again.
My 5 year follow up ends in Jan 2013. I’m wondering if anyone knows or has experience of what happens in cases like mine? My Mum had 2 primary cancers 7 years apart so you can uinderstand why I’m wondering if I’ll stop being seen and rely on self detection.
Whilst you wait for the other users to reply with their advice and experiences it might help to talk things through with a member of staff on the BCC helpline. Here you can ask any questions you may have and share your concerns with some who will offer you emotional support and practical information. The nnumber to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
did they just test you for brca2? Normally you get tested or both brca1 and brca2?
if they just did it for brca2 is that because there is a known brca2 change in your family already?
if there is a brca2 in the family and you dont have it that is generally reassuring as it means your cancer wasnt caused by a gene change so you dont have the same increased risk of a second cancer in the breast or ovaries as somebody with mutation… Although you would still have the same risk as anybody else with sporadic bc… But as there were three cases if bc in your familiy it would be routine to screen your daughters from at least age 40.
if they did a full analysis on your dna and no mutation was found in brca 1 or 2 then this would mean that although no gene was detected at the mo with current techniques and info available, they cannot rule out a new as yet undiscovered gene may be responsible… normally three cases of bc in a family puts family members at a moderate risk of bc… But this an vary depending on the age of onset… Eg if average age of nset is over 60 its much less likely to be genetic but if it occured in 30s and 40s your family might even be classed as high risk and be eligible for increased screening between 40 and 70.
Here is the guidelines on screening… http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/18705.pdf
if you unsure about what you have been told contact your genetics dept and go back and have a chat about your concerns.
Thanks Lulu for getting in touch. I wasn’t tested for BRCA1 as there is also prostate cancer family history and more than just my Mum’s history. I understood that I have an increased risk and so do other family members from an as yet unidentified gene.
I am really wondering about what happens to me now that I am reaching the 5year mark. Will I go on to having 3 year mammograms and no follow up with my oncologist? Or do I continue with yearly mammograms and oncology appts as well as access to my BC nurse considering what the Geneticist report said of an increased risk?
Maybe I’m worrying in advance and my oncologist will have his answer ready when I see him in a few weeks. My experience in other hospitals is that sometimes reports from other hospitals get filed but don’t register with the Dr who is reviewing my case. Should I be more trusting?
Thanks Lulu for getting in touch. I wasn’t tested for BRCA1 as there is also prostate cancer family history and more than just my Mum’s history. I understood that I have an increased risk and so do other family members from an as yet unidentified gene.
I am really wondering about what happens to me now that I am reaching the 5year mark. Will I go on to having 3 year mammograms and no follow up with my oncologist? Or do I continue with yearly mammograms and oncology appts as well as access to my BC nurse considering what the Geneticist report said of an increased risk?
Maybe I’m worrying in advance and my oncologist will have his answer ready when I see him in a few weeks. My experience in other hospitals is that sometimes reports from other hospitals get filed but don’t register with the Dr who is reviewing my case. Should I be more trusting?
If you fit the criteria for testing for brca 2 then you also fit the criteria for brca 1 if you look at the criteria for testing from the icr it’s basically for both as prostate ca can be in creased in brca 1 also but just not as significant as brca 2. But ovarian is much more prevalent in brca 1 so it would prob be worthwhile getting that checked too before you make any major ovarian decisions.
Also if your not a gene carrier then the risk of OC is not increased unless you have an actual family history of of as well.
as for screening yourself this will very much depend on local protocols but I can say what would happen at mine but this may not be the same for you. All ladies diagnosed with bc whether they have a family history or not have 5 year follow up in clinic plus Mammo then a further five years with just a mammo or until age 50 if this is longer. If you have no family history you would then go onto 3 yearly screening with the national programme however if you have a family history you would have 18mthly screening between the familial breast clinic and breast screening programme.
as I said your unit may do it very differently and I don’t know if there are any specific guidelines for affected women with a family history unless they are gene carriers in which case they should normally get an annual MRI between age 30 and 50 as should non affected gene carriers.
Even where guidelines exist there aren’t always the funds available to implement these in practice. Eg we do do MRI screening due to lack of resources but affected carrier do get them if their consultant orders them.
Good luck with your next appt. why not write Alistair of your questions to take along with you
Ah, I have a clearer picture now. Thank you so much for taking the time to post again Lulu. Hopefully i’ll be able to have mammograms more frequently than 3 yearly. I’ll take your advice and write a list of questions before i go to the clinic. I’ve never done that as I don’t want to look like I was making a fuss. Sounds silly i know.
Little Mrs… dont feel like your making a fuss if you have questions you want answered then its not difficult for them to tell you… in order to amke treatment choices you need to make an informed decision… that means having all the information available to make such a decision… so if you have questions just ask away.