Change of Diagnosis

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I had my lumpectomy and sentinal node results today.

I was originally diagnosed with invasive ductal carcinoma ER and PR positive HER2 negative low

7 x 9mm tumour. Stage 1 grade 2

Today I have been told its now 35mm and  multifocal both invasive ductal and invasive lobular which was a bit of a shock.

Good news nodes clear and clear margins.

Has anyone else been diagnosed with multifocal ?

Sue x

  • Hi, I’m sure someone with multi focal will reply soon .

    Mine was 20mm lobular , stage 1, grade 2. Node 0 and clear margins too .

    Hopefully you will get your treatment plan soon x 

  • I had dcis on the left 17mm and lobular 6mm on the right with 1 node involved on the left with clear margins they have sent off for a oncotype dx test for future plan to preventive treatment try not to think to deeply about what you had but clear margins and all removed is great news hugs and good luck for the future preventive treatment be positive your doing great so far xx

  • I was told my possible treatment plan after the original tests and again when I got the biopsy results. Lumpectomy, sentinal node removal. Followed by radiotherapy and then hormone therapy, and that it was unlikely I'd need chemo.

    Now it's changed from unlikely to a possibility that I'll need chemo, assume that is because I have 2 different  invasive cancers.

    Sue x

  • Are they doing an oncotype ? 

  • Yes, says 2-3 weeks for the results. Booklet says 2

  • It’s about 2 weeks for it to be processed in USA but then it has to go to the medics here to decide on treament. 

  • Apparently they also do the onco tests in Europe too, not all are sent to the US 

  • Didn’t know that

  • Hello 

    Like you I have multi focal. I was initially told grade 1 invasive ductal tumours in left boob - 3 in total - and one grade 2 invasive lobular tumour in the right, with no sign of spread into the lymph nodes. Saw consultant and was told I would definitely need mastectomy on left but could decide whether to go for lumpectomy or mastectomy on right. Was told I would then have radiotherapy. Had MRI and went back to see consultant to get surgery date etc and was then told additional diagnosis of HER2 positive so would need chemo first - which I have just started. Am on Phesgo by injection every three weeks and also IV docetaxel and carboplatin every three weeks. 

    Will have double mastectomy six weeks after the IV chemo stops. The Phesgo injections will continue after the IV chemo stops. 

    I only had two days of nausea after the first chemo and it was manageable. What has done me in is the injections I had to start doing at home 5 days after the chemo for 5 nights. I have had five days of chronic diarrhoea as a result. If I hadn't had them I would have been totally fine within a week of my first session.  

    I have now spoken to my oncology nurse and am hopeful that they will change the injections before my next round. I'm waiting to hear back from them early next week. I have found them to be very helpful when I call the helpline but less helpful when it comes to wanting to discuss ongoing treatment and management of the side effects. The Macmillan helpline nurse was amazing when I spoke to her so I recommend calling them if you feel you need to.

    I think the worst thing is not knowing which way the Cancer  Coaster is going to take you next. You get your head around one situation but then are told it's changed and you need to take on board and process another.

    I really hope you get your answers soon and wish you all the very best with your treatment.

    Sending you a hug.

  • Cancer coaster……. That says it all

    hi (again as I know we met on another chat) just to say / repeat that I can completely relate

     Initially told early stage ILC no nodes. Only to be told after my lumpectomy and snb that it’s bigger than they thought and one node involved. Don’t know how to feel about it except depressed and scared and angry. Hoping positivity will come back tomorrow I really do. Second op next week for hopefully clear margins and waiting on oncotype for further treatment. But have been told given my age that chemotherapy is likely . Terrified of that.