Oh dear…I feel a rant coming on…
I have been part of Family History screening for 12 years as Mum had breast cancer age 40 and maternal Grandmother age 70. Mum had lumpectomy and radiotherapy, Grandmother had widespread secondaries in her liver and stomach. She had a lumpectomy and nothing else as she was already in end stage renal failure.
Mum was diagnosed with secondaries in her liver 11 years later - too late for transplant and treatment not successful and she died age 53yrs.
I have no idea about genetic link or whether either were ER+.
Following my diagnosis of DCIS, I have had WLE with re-exision booked for 28/3 as there was no margin on one side. I had to ring the BCN to ask what grade it was (high) and have since been told they do not test for ER+ as it is non-invasive. the BCN I spoke to today told me it was ‘pre-cancerous’. Even I know that is out of date. I have said from the start that I would like as much information as thay can give me as it’s not knowing that I find difficult. Trouble is you need to know what questions to ask!
There has been little mention of my family history except to say that it will not neccessarily follow the same course as Mum’s disease. Well I know that! I think they feel I am a neurotic female worrying uneccessarily. I spoke to the Family History unit to ask them to amend my notes as I had forgotten the my Grandmother’s cancer had spread - they told me my notes were with the BC consultant so couldn’t do that. They said my care was now with the BC consultant and that he would know my family history. The BCN told me she did not know much about family history and that I should discuss it with the Family History nurses, the FH nurse told me I had to discuss it with the BCN…
Oh dear I just want to feel they are taking it seriously. I told the BCN today I would rather it was treated aggressively than conservatively so she asked my what I would like. Should I ask for ER+ test? I may have to have a mastectomy anyway if they don’t get a clear margin this time.
Perhaps Mum was just very unlucky and I am overeacting. My Dad also died from cancver (renal) and had some awful experiences of health professionals not sharing information so I suspect I have a rather skewed view of things.
Hi Susie,
While you are waiting for replies from your fellow forum users, could I sugges that you give the helpline here a ring and have a chat with them about your concerns, I’m sure they’ll be able to help. 0808 800 6000, lines open 9-5 Mon-Fri Sat 10-2.
Take care,
Jo, Facilitator
Have a good old rant Susie! It sounds very frustrating and must be very hard to deal with your own diagnosis even without thinking of this in light of your family history.
I have a brca1 mutation and have had breast cancer twice now. I actually inherited the mutation from my father so my own family history looked disarmingly innocent -until you went back further.
I don’t know very much about DCIS- I must admit I thought it was cancer, but that it had not spread from the duct. It is not clear whether you have been tested for a genetic mutation (and I know the answer is not definative anyway as you can still be at risk). You really need the lovely Lulu who is very knowledgeable and if you hang on, will come on- am sure.
I did not know I had a mutation when I was first diagnosed but one question might be: does my family history and increased risk (assuming this?) have any implications for my proposed treatment? EG might I be at increased risk of developing a new breast cancer?
Don’t know if you can ask whether the tissue can be tested for hormonal status? It sounds as though you want to ask this?
You don’t say your age, but this, and your family history and your recent diagnosis all together might mean you are now eligible for genetic testing (if you want it).
I don’t think you are over-reacting at all. Its all very scarey and its horrible when you get passed around.
On the family information side/inherited breast cancer side, Breast Cancer Care and Breakthrough breast cancer both produce some good information. The Breakthrough one is quite long, but very clear and comprehensive.
Hope this helps a bit. Let me know if I can be of any more help. Good luck. Rattles
ps at the end of the day this is your body, your life. Be assertive about what you want to happen!
Thanks for your support Rattles 
I did the OPERA assessment on the Macmillan website and it suggests there may be a faulty BRCA gene in my family. I also looked at the Breakthrough info.
I’ve just talked to a very helpful person on the BCC helpline.
Plan is to get the DCIS treatment finished (it was a helpful reminder that it’s not really finished yet), then depending on the definitive diagnosis after my 2nd WLE (hopefully!), ask for a referral to a genetic centre. I think that even though both relatives have died, they may be able to consider genetic testing.
I also plan to ask where my care and notes will be for follow-up and to make sure all my history is in my notes.
I feel much better for having a plan!
XXX
Hi Susieseaside 64,
My daughter is being sent to be tested as my mum had endometrial cancer then secondary lung ,mums sister had breast then liver , mother in law has breast cancer, sister in law had lump removed ( benign) and I have breast cancer (mx awaiting chemo poss radio).
Also dad had prostate cancer secondary bone cancer died 2010
my biggest problem is trying to find out what cancers they had for sure. I think this is what mum and her sister had but as they died in 1994 and 1983 i have to go through the health authority to find out As they only keep records at local hospital for 8 years.
Marie
Hi susie
sorry i only just seen your post.
how are you getting on with yor treatment?
in terms of genetic risk your family would still normally be classed as moderate risk and therefore they wont normally do any genetic testing on moderate risk families. The rik of carrying a mutation in a high risk family is only 20% and is much lower in mod risk.
there is a research trial caled BOCS… Breast and ovarian cancer suscetability study which will test for mutations if three people in the same side of the family… However the person being tested has to have invasive bc and not intraductal cancer… So unfortunately i think in your situation you wouldnt fit the criteria. You can google for the info regarding the study though.
Hi Marie
although your daughter is getting sent to genetics this will be for a risk assessment… They dont test individuals who havent had cancer but they may be able to offer her some early screening, although from what you describe i dont think she will quite fit the criteria which is available in the nice guidelines. Your MIL isnt on the same side of the family and usually you need at least two relatives with bc on the fathers side. And on the mothers side endometrial cancer isnt linked to BC so her only first degree relative is you, and she would only fit the criteria if you were under 40 at diagnosis.
however genetics should be able to find out the ages and types of cancers as all cancers should be recorded on a local cancer registry from the 1950s… So this info should help clarify whether she is at an increased risk or not… If the endo cancer your mum had turns out to be ovarian for example this would put her at an increased risk.
good luck with yoru treatment ladies… Let us know how the genetics appointments go.
Lulu xxx