I found out last week that due to having the condition neurofibromtosis type 1 i have a moderatly higher chance of developing breat cancer in the 40 to 50 age range, i will need yearly mammogramms from this year. i my gp says they have never heared of this and due to my age and no history of breast cancer they will not request one my consultant is contacting my gp.
Is there any other women on here with neurofibromtosis type 1 who are recieving mammograms every year,
hi wonderwoman1
Sorry you haven’t had any replies as yet, but hopefully by bringing your post back to the top of the list someone may see it who can help. In the meantime if you would like to have a chat with one of BCC’s nurses our free phone helpline is open at 9am today 0808 800 6000 (9-5 Mon to Fri & Sat 10-2)
Take care,
Jo, Facilitator
hi wonderwoman.
i dont have neurofibromatosis but i know there are a few rare conditions which can cause an increased risk of bc like peutz jeuger syndrome and ataxia telengiectasia… I think with the FM and AT the risk is moderate which usually means annual mammo between 40-50 and then normal screening after that… its the same risk as somebody with sister or mother who had BC at 35.
take care
hi wonderwoman
i have info for you but as soon as i can work out how send a private message i’ll send one.
Hi Vodka
Just click on the username of the person you wish to send a message to and the options will come up for you (If the user is in moderated status due to being new to the forums this may not work until they are in unmoderated status)
Best wishes
Lucy
hi, i have this condition, didnt know i was able to have mamgrams from the age of 40, it didnt enter my head, i had a few bumps on my boobs but nothing to worry about, but at christmas one of my nipples went in so went to the docs, after tests it was breast cancer (i’m 43), my consultant told me the chances are higher in nf1 ladies of getting it, im waiting to find out if it is nf related, my consultant was shocked i wasnt told about early screening, at least i know for 2 of my daughters, inbox me if you need any other info x
Hi there fellow NF1 girls…
Nobody has ever told me that I had an increased risk of breast cancer because of my NF1…I knew that the neurofibomas could turn nasty but had not a clue that I had an increased risk of b c. Nor did I know that routine mammograms were advised. In fact I found my cancer before I was called for the routine scan I should have been offerd when I hit 50 last Nov.
Well…I have just had a lumpectomy (April18th) and now need a wider excision of my lump this week May 10th. I then have radiotherapy and hormone trweatment to look forward to. I don’t know if my lump was NF related or not…biopsy has been done now.
Out of interest, where do you go for your NF? I go to Oxford, as do 2 of my kids. My other son sees a consultant at Guys in London for his NF. I do feel that there is a disparity between the hospitals and what they tell us!
Thinking I could have been caught sooner had I been having the routine scans annually from age 40…
Keep in touch! It’s good to meet people with NF (don’t know any really other than my 3 kids) as well as meeting peopke with B C.
Hi all,
I saw my geneticist last week. She confirmed that women with NF1 should have annual mammograms from the age of 40. They did not know that when I was 40.
She said that women with NF1 have an increased risk of developing breast cancer.
Well I’ll be getting annual mammograms anyway now thanks to having beast cancer… It would have been good to have been offered this sooner because of my NF1 and maybe I would have been diagnosed sooner and caught my cancer sooner… At least I know now for my daughter.
Sorry if this sounds a bit gloomy but as we all know NF1 has all sorts of complications and this one in particular is one we need to be aware of.
All the best.
Andie