Bit of a rant

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Bit of a rant: 

I was first diagnosed 29th August told ER negative 10mm cancer but nothing else I had a lumpectomy & SN removal on 18th October, found out on op day that my HER2 was negative. Had my post op on 27th found out my PR was also negative, so now know I'm triple negative. Told node was clear, cancer turned out to be16mm but lateral margin were not clear so I need a further op, which I was really upset about but accepted it needed doing, given date of the 13th November.

Then everything started going down hill today, its all changed now and op is not going to be until 20th, I know its only a week but I have been suffering really bad with anxiety so much since diagnosis, My GP gave me a few low dose diazepam this afternoon, which has helped a little. Its just most people that have TNBC seem to have their surgery after chemo. My next post op is not until 1st December, so chemo probably won't be until Jan 24. Everything just seems to be taking so long, has anyone else had such long waits and things done this way around ?

  • Hi  

    I had my treatment for TNBC the same way round that you're going to have yours last year. Mine was found after a routine mammogram and was also small. I had a lumpectomy first along with removal of a couple of sentinel lymph nodes. One of the nodes had micro deposits so it was recommended that I had chemotherapy and radiotherapy.

    I think it depends on the size of the tumour as to whether you have chemo first or after. If the lump is large then chemo is used to shrink it before it's removed. If the lump is small then surgery is done first to remove it and the chemo is an adjuvant treatment to stop it coming back. Anyway, that's how I understand it.

    x

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  • Hi latchbrook

    I didn't know mine was TNBC until after the op, when I rang BC nurse about something else and asked what my PR result was, only had my HER2 result the day of op because I asked Dr if it had come back. Think that they thought I knew but nobody had told me anything at all.

    I haven't a clue if I will be offered genetic testing being 60  no-one has said anything about the TNBC, just said chemo and radiotherapy, who tells you these sorts of things? 

  • Hi Alison

    I understand the usual protocol is under 2cm and no suspected lymph node involvement = surgery first. Over 2cm or suspected lymph node involvement = chemo first. 

  • It was my surgeon who told me that I had TNBC and that there were a small amount of cancer cells in the lymph node.

    I then had an appointment with the oncologist who said he thought I would benefit from having adjuvant chemo.

    I wasn't offered genetic testing.

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  • Hi Alison 

    I’m the same as latchbroook had lumpectomy first , chemo , then another surgery to clear the margin from the first surgery. Just waiting for radiotherapy . I’m 58 so I was offered Genetic testing which was negative . I wish you well in your journey xx

  • I  might  ask for the genetic testing

  • Hi  

    I’ve had my treatement the same way round as you. Diasgnosed in May 2023, surgery July 2023, chemo started end of Sept. 

    the waiting is the hardest bit. I lost count of the number of times I broke down at work waiting for the surgery and panicking it had spread. 

    Then felt like a wait forever to start Chemo. Again, getting wound up about the impact it might have on my life. Currently on round 3 of 6 and it’s going ok. Just have to keep counting down the days until I can get some normally back. 

    it’s really hard to wait around. I met up with friends & family for walks and chats which helped loads. 

    Good luck with it all.