Stage 4 in Canada

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LindaE54
LindaE54 Member Posts: 2,054

I was dx stage 4 from the get go in Dec 2013 with bone mets.  Would like to exchange with stage 4 ladies in Canada.  I live in Montreal.

 

Linda


 

Comments

  • She
    She Member Posts: 503
    edited September 2014

    Hi Linda, if you go to the Stage 4 tab, there are a few of us who post there.

  • Sunbeams
    Sunbeams Member Posts: 21
    edited April 2015

    Was this for Inflammatory Breast Cancer? I am in Montreal and will know very soon if I have it as I suspect. Curious where you were treated, at a hospital? Which one? Have they succeeded in finding it all? Continued well being to you.

  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2015


    Hi Sunbeams - No it was not IBC for me.  I am treated at the Hotel-Dieu of St-Jerome and that's where I was diagnosed stage 4 right from the start with bone mets.  I had been having a lot of pain for several months and a scan revealed bone mets.  Then began the search for the primary cancer which was breast.  I went for a second opinion at CHUM Hotel-Dieu with Dr. André Robidoux.  He did further testing and confirmed the dx and that the treatment given to me at St-Jerome was the right one.  I decided to stay at St-Jerome for convenience sake.  I've been stable since my dx in Nov 2013.

    Wishing you the very best - Linda

  • Sunbeams
    Sunbeams Member Posts: 21
    edited April 2015

    I am in Ste Therese and wonder if I would be sent to St Jerome. I will know soon. What other option was given you? I really hope you are doing well. I see you have had a lot of radiation therapy in 2014. We're you spared chemo therapy/hair loss? I hope so. All the best to you. I am still familiarizing myself with this forum. I see people will comment they have posted pictures, but can't find where. Still learning. Thank you again for responding.


  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2015


    Sunbeams - Yes, I'm doing well.  My biggest challenge is intermittent pain and I don't hesitate to take pain meds for maximum comfort.  I had several tx of radiation for pain relief and for bone consolidation of my femur after a rod was inserted to prevent a fracture.  St-Jerome has an excellent team in orthopedics.  It really helped me a lot.  I'm learning to adjust to this "new normal" and I have a good quality of life.  No other options were given to me although I know what the treatment plan will be when progression knocks on my door.  I have had no chemo (yet).  Rads are done at la Cité de la Santé in Laval.  They have an excellent team and I am very well treated there when rads are necessary.  I would very much like to know where you will be treated.  If I can help you in any way - just ask! or PM me if you want.  The hardest part is the waiting, the testing etc.  The first few months are rock and roll.  Hang in there!

    Big virtual hugs to you - Linda

  • Sunbeams
    Sunbeams Member Posts: 21
    edited April 2015

    Thank you Linda, for continued responses. I appreciate the offer to PM you, I may just do that. Just to give an update, I saw my doctor yesterday. He asked for the mamo results from the clinic rush and they messed up. He will be calling me this morning with results. As we all know, mamo's are not reliable and regardless of the results I need to know once and for all what is going on. He booked me a rush appointment with a surgeon at the  hospital. Tentative appointment is this coming Tuesday (Apr 14) but they are to call me first. The good news is, the pink skin is not growing or showing any other signs of IBC. No change one week later. Have had this 4 or 5 weeks now. Still have 3 more days of antibiotics to take.  My doctor said it is not typically acting aggressive.  Yet, it is questionable enough to be seen by a specialist. Not knowing is nerve wracking. So, it's still a wait and see. I will post my mamo results when I hear. 

    So has anyone had the erythema (pink/red coloration) that remains the same for a good month and no changes for the better or worse? Just curious to compare.  Thank you

  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2015

    Thanks for updating Sunbeams and good to hear skin is stable.  Yes, waiting is the worst - hang in there!

    Linda

  • Sunbeams
    Sunbeams Member Posts: 21
    edited April 2015

    Doctor called and as expected the mamo shows negative regarding this potential IBC. However, he absolutely wants me to see the surgeon at the hospital for a second opinion and possibly more tests. I'm waiting now for a call to schedule this appointment which should be on Tuesday. Yes, the wait is hard, but it keeps me on the fence for good or bad results I suppose.  All to say the suspicion of IBC is quite real. Meanwhile, I continue to read this site made up of such an incredibly wonderful bunch of people. So much important information. Wow..

  • Sunbeams
    Sunbeams Member Posts: 21
    edited April 2015

    Saw the surgeon this morning. Update: been five to six weeks with pinkish red coloration on right breast, about 1/3 of breast. He is leaning toward thinking it is not IBC since it is not progressing but prefers I have more tests. Tomorrow I am scheduled for an ultrasound. Thursday or bit later I am to have a skin biopsy.

    I want to feel if after these two tests it comes back negative that I can just move on with my life and hope the skin coloration fades away with time. But! So many in this community go on with stories of being told no cancer found only to later be diagnosed after all. When can I assume it really is okay if biopsy results say I am okay? Hard question to answer for anyone'ssituation, I know.

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