PET/CT Results January, 2016
At this point, only my roommate, my mother and one friend know what I'm going to tell you. First let me apologize to all my friends for not telling you personally. I just can't do it.
This disease spreads. It is rare and aggressive. I'll be fighting this for the rest of my life, whether I'm in active treatment or not. We've known there will be recurrences. The November surgery was due to a PET scan that showed a mass which turned out to be benign.
Two days ago, I went for a CT/PET scan.
Yesterday I got the results. There are new lung lesions/nodules. Something is happening with the liver (previously it was identified as scar tissue, now it is active). There are suspicious spots in my intestines, but with the healing (at least it shows on the PET scan, it doesn't seem to be getting smaller). There's activity within a neck lymph node, which (like the others) was there in October, and is now larger/more active.
Several months ago, my oncologist requested all or part of the original tumor. It has been tested to see if it is sensitive to hormones. It is. This is wonderful. So I'll be taking hormones (or hormone suppression med, I need to pick up the prescription and do research).
Home health care has been ordered for the wound. My insurance will not pay for someone to pack it twice a day, for as long as it takes. The ARNP said it could take several months, I didn't point out that it had already been two months. The insurance company will train someone here in the park to do this. It was pointed out that it is hard to do it to yourself, it is supposed to hurt and people tend to not stuff the gauze tight enough. Still, I'm feeling like a failure as a junior nurse. I'll keep taking vitamins, hoping that helps my body heal.
So what does this mean? I need to walk as much as possible to get my lungs functioning well enough that they don't need those cancerous sections. The hormone therapy has increase the survival length, although there are not current studies about it. Whatever happens to me, will be aggregated and studied to see if it can help others... The longer I live, the more useful the information. The study I found only used results from 16 patients from 2001 to 2012 using a specific medication in a specific British hospital. Well, it makes sense... This is rare to start (less than 500 dxed in the US per year), and only 25 to 60% are hormone receptive/sensitive.
So I'm still healthy.... when health is defined as dying as slowly as possible. But I'm back in active treatment.
This disease spreads. It is rare and aggressive. I'll be fighting this for the rest of my life, whether I'm in active treatment or not. We've known there will be recurrences. The November surgery was due to a PET scan that showed a mass which turned out to be benign.
Two days ago, I went for a CT/PET scan.
Yesterday I got the results. There are new lung lesions/nodules. Something is happening with the liver (previously it was identified as scar tissue, now it is active). There are suspicious spots in my intestines, but with the healing (at least it shows on the PET scan, it doesn't seem to be getting smaller). There's activity within a neck lymph node, which (like the others) was there in October, and is now larger/more active.
Several months ago, my oncologist requested all or part of the original tumor. It has been tested to see if it is sensitive to hormones. It is. This is wonderful. So I'll be taking hormones (or hormone suppression med, I need to pick up the prescription and do research).
Home health care has been ordered for the wound. My insurance will not pay for someone to pack it twice a day, for as long as it takes. The ARNP said it could take several months, I didn't point out that it had already been two months. The insurance company will train someone here in the park to do this. It was pointed out that it is hard to do it to yourself, it is supposed to hurt and people tend to not stuff the gauze tight enough. Still, I'm feeling like a failure as a junior nurse. I'll keep taking vitamins, hoping that helps my body heal.
So what does this mean? I need to walk as much as possible to get my lungs functioning well enough that they don't need those cancerous sections. The hormone therapy has increase the survival length, although there are not current studies about it. Whatever happens to me, will be aggregated and studied to see if it can help others... The longer I live, the more useful the information. The study I found only used results from 16 patients from 2001 to 2012 using a specific medication in a specific British hospital. Well, it makes sense... This is rare to start (less than 500 dxed in the US per year), and only 25 to 60% are hormone receptive/sensitive.
So I'm still healthy.... when health is defined as dying as slowly as possible. But I'm back in active treatment.
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