Am I Paranoid or should I be concerned?

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Allyp71
Allyp71 Member Posts: 25
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

HI there...

I haven't posted in a while and it's been 1 year since my BC diagnosis. I underwent Bilateral MX in April 2013 and just had my 4th and hopefully last reconstruction surgery on March 10th. I wanted to get some advice from the great ladies here. I was told that I had DCIS with isolated tumour cells, Grade 3, and it was not hormone receptive. I was told by RO that the chances that it could come back is high in the next 5 years. The RO and MO both decided no after treatment was necessary. 

So since my surgery in April 2013 I wasn't given any radiation, chemo or hormone treatment. They said to just follow up with my GP if I feel any 'symptoms' I had no idea what to look for since I removed both breasts. I fought hard to see if there was any treatment they could give me since "ITC" is considered controversial and I wanted to ensure nothing was left inside me. Both RO and MO made me feel like I'm a worrywart for nothing and since this is my 2nd cancer (first was Stage 3 Hodgkins when was 24) I wanted to make sure I did all I could. Initially, they wouldn't even send me for a CT scan or anything. The best I could do is tell the MO that I wanted my follow up with FVCC which they agreed to and finally to a CT scan.

In the last couple of months, I've had a red rash on my original breast. For a couple of weeks, I've had 'twinges' of pain in my hip/groin and frequent diarrhea, some abdominal and back pain. I feel like I could be paranoid but feeling worried. I don't really know what symptoms to look for if the cancer has come back. Every time I see the MO, I feel like he's just appeasing me because he has to but not really listening.

Thank you for any insight and advice.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited March 2014

    I don't understand - if your chances of recurrence were high, why was there no chemo?

    It doesn't sound like you have mets.  It sounds like you have some digestive issues, which could cause all of those symptoms except for the rash.  But I don't think you have mets.

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  • Allyp71
    Allyp71 Member Posts: 25
    edited March 2014

    Sweetbean,

    I was so perplexed that after the RO telling me all about ITC and how controversial it was and that my type of cancer has a high chance of recurrence that they both decided that no after treatment was warranted and discharged me from their care.  I basically had to go back and say "No, I don't want to follow up with my GP cause she thought it was a cyst originally and even my mammogram came back normal. I want to do my follow up with the cancer centre."  That is the reason I find this MO doctor not too pleased with me.

    I feel like I'm on my own and having to sort out what might be a symptoms and what isn't.  I guess it's a wait and see.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited March 2014

    Good grief!  Maybe find a new oncologist or get another opinion - not because I think you have cancer, but more because it sounds like your doctors aren't providing the support that you deserve.

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  • sandilee
    sandilee Member Posts: 1,843
    edited March 2014

    Ally, I think you need to find another MO, at least for another opinion.  It sounds like you don't trust your doctors (and I can see why not!), and probably won't feel comfortable until you see someone else. Good luck.  

      Most doctors would not find getting another opinion objectionable at all. Mine would even make a recommendation if I wanted it.  You deserve to feel confident in your plan.

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