A long wait

Hi all

I've just been diagnosed with a small but stage1-2 grade 3 breast tumour. Mammogram and ultrasound suggest that it hasn't spread to my lymph nodes as yet but will know once I have the tumour and sln removed. My worry is that as it's a grade 3 and fast growing that if I go down the nhs route (warned that I might have to wait a month) that it will spread in that time to my lymph nodes. Was told before final diagnosis that I'd have radiotherapy only but now the doc is saying because it's grade 3 I might have to have chemo. I'm very lucky to have caught it early and I'm in a financial position to have it removed privately by the same consultant but I'd agreed to participate in a research genetic trial which would have looked at my genetics - which may help with allaying my fears for my adult daughter (I'm adopted and no medical history) plus it would pinpoint which chemo I would be most suited to - but I can't participate if I go private as they only have an hour to harvest from my tumour and get it to my nhs hospital which is impossible. I've been told I'll get a private slot within 10 days so clearly that's preferable for my peace of mind but the nhs have been great and I'd like to do the research project. Can anybody comment on how long they waited from biopsy result appt to lumpectomy. It's the waiting time that's making me worry so much. 

  • Hi Jill, 

    I was told they cannot stage until they remove the tumour so maybe check that again?

    Have they told you what type it is and whether it responds to hormones or proteins? 

    So just to give you a timeline, I had GP referral  for a lump I found at Christmas on 4th Feb, seen in clinic on 11th Feb for testing, back on 24th Feb to be told scan looked like cancer, biopsy was normal so repeat biopsy. Back on 2nd March and told it was Grade 3 Triple Negative Invasive Ductal Carcinoma, so aggressive, fast growing and doesn't respond to hormones or herceptin. I have had a CT scan, heart scan, got to have a liver scan as I had a spot on my lung on the CT Scan and saw the oncolgist yesterday. 

    I have to have about 20 weeks chemo first (my lump is 3.5cm) then surgery and then radiation. I said just take it out but they can't because it's not in my lymph nodes and it's not moved that we know of. And it's not moved in the last month. I am having genetic testing done, but it's not a trial. 

    So I guess I am no help to you whatsoever reading back over that but just to put it in perspective, my surgery will be in the autumn so my advice would be ask your consultant what is the best option for you.

    And good luck xxx

  • Thanks Gistaline

    Sorry I wasn't specific, I was told they "think it's stage 1 or 2", they'll know once lumps out. My consultant said the nhs or private issue is up to me but didn't think a couple of weeks should make any palpable difference but in my mind hat seems forever.

    My tumour is hormone and protein positive, HER2 negative. At the moment my nodes are looking clear so they haven't offered me any scans at the moment. It is not circular but they are saying it's around 2cm. 
    you're correct in your comment on the genetic testing, it's a research project and I'd like to participate because of my adopted non medical history as I have a 25yr old daughter.


    you sound like you've got an awfully long road ahead and I wish you every good wish. I hope you've got good support around you to xx