message for Medullary Wendy

Hi Wendy, how you doing. i have just managed to get my computer up and running again, fingers crossed, the library was awful, very noisy for a library. Do you know if your Medullary tumour was Atypical or Typical? do i understand you right that you first got your Medullary 6 years ago? it is very rare for a Medullary to come back, they say most Medullary tumours are genetic i was adopted so it was pointless testing me for the BRAC1, especially when i have never had children. They say it is usually a younger women’s tumour, i was nearly 56 when i found mine in 2005. Would be interested to know how you are going on. Take it easy.

Hi there,

Lovely to hear from you and im glad your computer is up and running. I’m changing supplier so heavens knows how that will gol

I had a grade 3 with no spead (that has been found) in left breast age 31 but they didnt state it was medullary. Then had a different unrelated oral with mets to lymph nodes in neck. at 33. Then in March 07 found lump in right breast - grade 3 medullary so they got out old slide and decided it was the same type… so sent back go gen’ist. In meantime had blood test and found to be BRCA1. Both lumps are triple negative… im not sure what is atypical or typcial? The gene’tist says there is 85% chance of growing a new tumour unless i get rid of breast then risk goes down to about 3%. So at present am recovering from rt, then hoping to have oophorectomy asap and am seeing plastics chap end of September to see what options i have on mast and recon.

Look forward to hearing from you


I am abit confused, when you first got told you had a tumour 6 years ago if it was a Medullary why did they not tell you ( this tumour has a better prognosis than your normal ductal carcinoma) although they tend to treat it in the same way, because at the end of the day it is still a invasive tumour. I was told that nearly all medullary Tumours are grade 3 and usually always triple negitive, (so they are not homone based) means that they are not estrogiene posidive, that is why its pointless to give you the standard tamoxifen that they put people on for five years. Did you say you have had chemo? i remember you said you had rads. If you did have chemo what regime did they give you?
I live in a little seaside town on the east coast, do you come from the North or South of England. I will stop there as the lottery numbers are about to come on, you never know!!!

Hi Kippy

Sorry about the delay in replying have been to cornwall for a week to hide away for my 40th!

The tumour i had when i was 31 was graded 3 but not - or they tell me - it was not diagnosed as a medullary cancer… !! I had cmf and rads… then this time it was flagged up as medullary so was sent of to see gentisist again… and had blood test and he ho brca1 showed up. The g’tist did say that its only in the last 18 minths they have become expert at seeing gene defect and any blood test wouldnt have shown it up before… so there is no point in doing the 'what if’s or why didnt i/they do more!!

This time i had epi and cyclophosphamide… so now ive had all the radiotherapy i can have but apparently there are lots of chemo variations, should i develop a new lump or have a reoccurance.!! How comforting!

I have seen plastics chap and due to all rads he cant do any recon till next year so i have 2 choices

A) keep both breasts and wait for a year and pray no more lumps or mets

b) double mast with oophorectomy asap…

am seeing breast surgeon this pm to discuss…not sure if 2 months from rt is acceptable recovery time to allow for mast and if it will heal ok on right side. Left side is obviously several years post treatment.

have just come back… cant do op at my normal hospital due to having problems getting tube down… will now refer me to city hospital birmingham… so more waiting…ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!! Im so cross…!!

Am going to throw some plates!!