Residual Disease

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Hi, are there any stories of hope from those with residual disease after neoadjuvant chemo? Or anyone in a similar situation?

Its wonderful to see so many posts about PCR but also slightly deflating to be not be one of them. Also see a lot of post about just mm of residual, whilst mine was much more extensive....I still had residual in breasts and lympnodes... I have now started adjuvant treatment but it does feel quite lonely on these forums. Anyone else out there in a similar boat??

  • Hi Kty

    Sorry to hear that you didn't have a complete response after neoadjuvant chemo.  I had residual disease after my operation for triple negative breast cancer over two years ago and had to have a further six months of chemo in tablet form.  

    Best wishes

    Daisy53

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  • Thank you for sharing. It all can feel very overwhelming at times. 

  • Hi Kty, I had neoadjuvant chemo followed by lumpectomy and axillary clearance.  The pathology results showed that there was a 13 mm residual within what was removed.  Because of that my breast surgeon told me I would need further chemo.  I was quite shocked as I wasn’t expecting that, however, she did say that it was good news as I was cancer free.  After 5 sessions of radiotherapy I started on Kadcyla (14 rounds). Have just had no. 8 today.  Latest chemo is a walk in the park by comparison.  I wish you all the best with your ongoing treatment.  We will get there. Xx

  • Hi 

    I had a huge tumour and multiple lymph node involvement, after neo adjuvant chemo I had under 10% of cancer cells left in my breast ( I had a mastectomy )  but my nodes were clear , this was seen as a very good result . A PCR isn’t as common as you may think , especially in hormone positive BC . What type was your cancer ? 
    hugs xx

  • Hi Kty,

    Unfortunately chemo is not the answer to all evils. But there are alternatives. 

    After second lumpectomy I have been left with microscopic residue. Op is not possible because of the position, bang in the middle of my chest in a lymph node which had attached itself to the chest wall.  The second tumor grew in spite of complete removal of what was left of the first lump after chemo and the sentinel nodes were clear. I was taking Letrozole at the time. I am now having radiotherapy and getting Faslodex injections.  Tumor was ER+ HER2 low.  There has been no further spread detected. I am trying to be positive and hope that Faslodex will stop or at least slow things down.

    Don't lose heart. You are not alone.

    Ulla 

  • I had chemo before the operation and still had a lump - went from something like 40mm to 15mm. Operation a complete success with clear margins and no evidence of cancer in my lymph nodes.

    If your tumour responded to chemo, then that in itself is fantastic. One of the advantages of having chemo before surgery is that you know it is having some effect. 

    I was told the aim of chemo wasn't to get rid of all the cancer but to shrink it enough for a lumpectomy and to ensure clear margins as mine was right up against my chest wall.

    I think it's fairly common not to have a complete response.

  • Thank you for sharing and pleased to hear you are finding kadcyla is easier on you. I decided to go in to a trial so im now taking Enhertu instead of kadcyla for 14 rounds.ive just completed my 2nd Pray this works

  • Thank you so much for sharing. Its such a terrible roller coaster!! It sounds like a great treatment plan for you. I really hope it all works out. Im Her2+ HR+ so now on 14 rounds of Enhertu, zoladex and tamoxifen (keeping everything crossed )

  • Thank you. Im pleased to hear your treatment was a success and op went well. 

    I think its the positive nodes after chemo that really have me spooked. On the mri prior to surgery they were showing as resolved, so its so disappointing and scary that wasn't the case. 

  • That sounds like you had a fantastic result. 

    Unfortunately my nodes were still positive after TCHP, im triple positive, so Her2+ and also strongly hormone positive..It really has me spooked. 

    Some days i feel positive and others full of anxiety! I hate this for all of us!