Expecting stage IV diagnosis soon (De Novo)

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I'm new on this thread but looking for a bit of advice. I was diagnosed with primary breast cancer in June this year and so far my only treatment/follow up after diagnosis was mastectomy with immediate recon which took place in August.

I had a meeting with the consultant who gave me my diagnosis this week and he informed me that one of the five lymph nodes removed during the surgery had cancer present so I'm going to be sent for lymph node clearance and a full body scan now.

The thing is, I've been experiencing some upper back discomfort that I'd put down to really poor posture for a little while and the last couple of days I've had pain in my hip/glute area and shoulder too so I'm 99.9% convinced now that actually I have bone Mets. I have a couple of questions I wonder if anyone here might be able to answer?

  1. Will the CT scan I'm due to have tomorrow (Sunday) be able to pick this up or will I need an MRI?
  2. I had some blood results from a general health check in April that indicated slightly low blood calcium levels. Would that be consistent with bone mets (I'd mentioned this result to my consultant at my diagnosis but he didn't do anything with that info).
  3. If there are bone mets am I likely to still have the lymph node clearance or would treatment just move to chemo/palliative?

I'm holding it together just now but I am petrified inside. I'm only 39 and have a 5 year old son who I desperately want to be here for 

I'm also getting more and more frustrated at how my journey has been since diagnosis. Literally was told I have primary cancer but it's fine because it's been caught early (stage 1, grade 2, HER2 negative, not agressive) and then had nothing whatsoever in terms of active treatment or even scans until about 9 weeks later. I feel like there has been real apathy in my case especially when comparing other people's stories where they've had surgery quickly after diagnosis or have been scanned really quickly.

  • Hi Wendy,

    Sorry to hear of your recent diagnosis.

    I'm surprised that they'd go back for a full lymph node clearance if only one of the sentinel lymph nodes was positive. This is the first time I've personally heard of this.

    To answer your questions:

    1 - A CT scan would be able to show bone mets, but a PET-CT would be better.

    2 - Low calcium is the opposite of what you'd generally expect with bone mets. Mets in the bone are typically lytic, so eat away the bone, and the waste calcium ends up in the blood.

    3 - If you do have mets, the lymph node clearance would be pointless.

    Are you ER+? If so, and you do turn out to have mets, you'd likely get some radiation if you're in pain, and one of the standard treatments, like Palbociclib, Letrozole & Denosumab.



  • A couple of weeks later and I've had my full lymph node clearance and the CT scan (which was done just prior to the ANC).

    When I arrived for my ANC I was informed that my CT scan is clear (woohoo). Still debating whether to see if I can have a PET CT scan for further peace of mind but the surgeon really didn't seem in any way bothered about further scans when I asked.

    Surgery was delayed until a little later in the day so after being told it was a day case and I'd be home in the same day I actually ended up with an overnight stay. Can't say as I was disappointed at that really because the armpit pain I am finding is more noticeable and uncomfortable than the Mastectomy and DIEP pain which is just pretty numb and tight feeling.

    I was told that I then need to see the surgeon the week after surgery to check how I'm healing but that it was unlikely that I'd have the results from the histology. Well what a lovely surprise to find that they did have my results and there was no further cancer found in the rest of the nodes they'd removed! So it was only 1 of 21 nodes that was affected by lymphovascular invasion.

    I'm still going to be going through Chemo, Radio and Hormone Therapy to throw everything at it which I'm not looking forward to but I think at this point I'm happier to keep on with all I can to give myself a better chance of some longevity.

    So all in all should be pretty positive news considering. Yet here I am having been awake for hours still haha

  • That's great news Wendy! So happy for you!