Would like the forums opinion/advice

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Hi everybody. I hope you are all progressing well with your treatments and wish you all the very best.

I am posting with a rather difficult  situation.

I completed treatment for a grade 3 triple positive breast cancer in July and was hoping to start neratinib as further preventative treatment. I had had small granular lumps around the scar checked by the BCN's earlier in the year  and because they seemed to fluctuate, they were left. Prior to the appointment pre neratinib I became aware of one of these small lumps again and it was checked while I was there.

I then had mammogram and ultrasound ,and on the latter the very small lump was located and thought to be an oily cyst. Mammogram was clear. A fine needle aspiration was performed and in taking it the Radiologist couldn't find the lump again. I then had an MRI scan and am awaiting CT and bone scans.

Having spoken to my Consultant, post MDT meeting and also very kindly on her holiday, I am now confused again as  she told me that there are suspicious cells but then mentioned C5 which suggests malignancy and that it can't be classed as local recurrence because the area is too small to confirm this with core biopsy and also that the lump has gone despite my still being able to feel it.

She needs to go through the MRI again with the radiologist, who is also on holiday but she thinks because FNA often show false positives that I may not require any further treatment.

I feel very uncertain with this as I would have thought erring on the side of caution would be the best way forward , I have said I would prefer mastectomy from the start, and i feel as if I am playing Russian roulette with a fully loaded gun.

I have obviously spoken to friends and family regarding this but would appreciate your views and any suggestions as to how I proceed as only yourselves can truly understand  the ongoing fear of having breast cancer recurrence.

Love and hugs to you all

  • Hi  , sorry you’re having all this worry, especially as it should have felt like you’d got past a ‘stage’ when you completed your main treatment in July. I can imagine that your head must be spinning with all these ifs, buts and maybes at the moment. I’m not sure what I can offer, obviously support and hopefully some understanding of what you’re going through. From the sounds of it, you’re currently in that ghastly limbo state of waiting for results, not helped by what sounds like a rather confusing conversation with the consultant. Very difficult for you to come to any conclusions until you get the MRI  scan results and also have the CT and bone scans. And also I hope a face to face appointment with the consultant. On a positive note they do seem to be investigating it all thoroughly.
    Re the accuracy (or not) of FNA, I can share my experience many years ago when I found a lump. Mammogram was inconclusive as was ultrasound. FNA also turned out to be inconclusive, but did show ‘atypical’ cells. I immediately assumed cancer. A punch biopsy was done (I think that’s what is now called a core biopsy?) which was again inconclusive! More ‘atypical’ cells. Finally I had a lumpectomy (tiny scar compared to my more recent wide local incision which was also called a lumpectomy), and when I went for the results it turned out to be a fibroadenoma (benign). The consultant said he’d thought that was what it was but had earlier said it was a ‘very suspicious’ lump! So I’ve gone through a very confusing and worrying string of tests only to find (very thankfully of course) that all was well. A few years later I found ‘lumpiness’ in the other breast. Mammogram inconclusive, but this time ultrasound showed cysts which could be left alone as not bothering me. Of course more recently I’ve had treatment for the real deal. 
    Sorry if these ramblings are not helpful, just wanted to try to share a story with lots of inconclusive tests as I think they’re more common than we might realise. 
    Wishing you well, hope the other tests can be done very soon and that you get the answers you need to ‘move forward’, whatever that entails. Love and hugs, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Thank you very much for taking the time to  reply . You really haven't rambled at all and you have been very helpful and given me some hope. 

    I can't complain about the thoroughness of the investigations which have been organised for me and am thankful to be given them although the waiting for the tests themselves and then the results is always agonising, something that can't be helped. The consultant has been very kind in making the time to update me during her annual leave.

    Take care and thank you again Slight smile

  • I think they are erring on side of caution with their investigations.  I'm back on routine screening and was recalled as they wanted to double check stability of old breast calcifications.   All stable but doctor said even when they think they are ok they double check.  Good luck x

  • Thank you Grogg. I'm glad all is stable with your calcifications, that's very good news.

    . I am very grateful for all the investigations and am hoping that I will also have more clarification about the lump after the consultants have discussed the MRI next week.

    Thank you again. Slight smile