Medullary breast tumour.

Hi every one, i was diagnosed with a very rare tumour Medullary in August 2005, i have done a lot of research on this tumour since then, i do get frustrated because i would like to talk to someone with the same tumour but that is proving difficult would like to hear from anyone else who has/had a Medullary and compare my treatment to there’s. It would be very interesting from my point of view being treated in a small coastal town to how someone with a Medullary would be treated else where, say in a big city like Leeds Etc?
love x

Hi Kippy

Breast Cancer Care provides a support service called ‘Peer support’ whereby you can be put in touch, by telephone, with someone of a similar age and/or diagnosis to you, it may be possible to put you in touch with someone else with a diagnosis of Medullary breast cancer. The following link will take you to a page containing more details about this service and how to contact the team to find out whether this is possible:

breastcancercare.org.uk/content.php?page_id=4438

Hope you find this helpful

Best wishes

Lucy
Moderator
Breast Cancer Care

Hi
I was diagnosed in July 2006 with Medullary breast cancer, I had lumpectomy, 6 FEC and 30 rads and finished treatment in February this year and I am on tamoxifen for 2 years and will go onto Arimidex - (I am week oestrogen positive). I have been treated in Salisbury - not a big city - but cannot fault the treatment that I have received.

Hi Kippy,

Its me wendy, as you know had 2 x medullary tumours, 9 years ago and this year. Surgery 5fu methotrex and cyclo , rads 1st time, this time surgery, epi and cyclo and rads again. Am triple negative and brca1 positive. Am still waiting to see if i can double mast now, but onc, breast consult and geneticist are at a loss as to when the op should be done, due to rads this year. No recon until at least next August. Am trying to arrange a return to work but until i have surgery date, oh also they are trying to take ovaries out at same time due wonky windpipe due to rads on neck 6 yrs ago. i think i have had best treatment even though its all the wrong way round as they couldnt confirm gene until last 18 months.

Wendy

You are having a time of it Wendy, it must be very rare indeed to get 2 Medullary Tumours, did your medical team tell you medullary usually has a better prognosis than a normal grade 3 tumour? mind i bet they did not know a lot about this tumour 9years ago when you were 1st diagnosed. did you catch your tumour Early?
Take care X

Sorry Tasmin, have just notice in your post that you did say you were weak estrogen positive, silly me.