Ignorance is bliss
There is so much truth to that.
A few hours ago, I was still in blissful ignorance about the severity of my condition. Until we picked up the new copy of my scan CD to replace the one the new cancer center lost. Jim opened it and read the report. It's not good. My largest liver tumor is in the left lobe and measures (according to them) 11.2 cm and is pressing significantly on the inferior vena cava, there are two others at about 1 cm or so.
Needless to say I'm in shock. I had no idea that things were so bad.
I feel like I've completely been kept in the dark about this. Of course I asked questions, but never really got a straight answer, which is partially what lead to the current path that I am walking.
At this point, my hope and positivity have left the building. They may be back. This may just be the shock talking.
We spoke with the radiation oncologist a little while ago and he thinks that the large liver met is too big for SRS, but that there may be other options, we meet with him on Monday so that he can review my scans and discuss options with us. I also set the wheels in motion with Roswell Park for a third opinion and to discuss IL-2 with them.
Perhaps an oncology radiologist will be able to shed better light on things for us.
There has to be a way to get this thing out of me, it's very big, but I don't have multiple organ involvement (that I know of), this is my only life-threatening tumor at this point. I need to explore further. NIH and NCI are my next stop... surely by being aggressive and thinking outside the box I can buy myself some time...?
As of now the questions in my mind read like this:
Why wasn't I told exactly how big my tumors are?
How was I allowed to get to this point? (one for my attorney to ask, perhaps)
Can we radiate to shrink the tumor then resect?
Can we radiate to shrink the tumor then do SRS?
Can we de-bulk the tumor then do IL-2?
Can we de-bulk the tumor and do a chemo bath?
Or how about arterial perfusion?
There HAS to be something we can do. Time to hit the phone and find someone who will think outside the box with me.
Huh, looks like hope and positivity had just stepped out for a minute rather than left for good.
Hope... a truly human affliction.
A few hours ago, I was still in blissful ignorance about the severity of my condition. Until we picked up the new copy of my scan CD to replace the one the new cancer center lost. Jim opened it and read the report. It's not good. My largest liver tumor is in the left lobe and measures (according to them) 11.2 cm and is pressing significantly on the inferior vena cava, there are two others at about 1 cm or so.
Needless to say I'm in shock. I had no idea that things were so bad.
I feel like I've completely been kept in the dark about this. Of course I asked questions, but never really got a straight answer, which is partially what lead to the current path that I am walking.
At this point, my hope and positivity have left the building. They may be back. This may just be the shock talking.
We spoke with the radiation oncologist a little while ago and he thinks that the large liver met is too big for SRS, but that there may be other options, we meet with him on Monday so that he can review my scans and discuss options with us. I also set the wheels in motion with Roswell Park for a third opinion and to discuss IL-2 with them.
Perhaps an oncology radiologist will be able to shed better light on things for us.
There has to be a way to get this thing out of me, it's very big, but I don't have multiple organ involvement (that I know of), this is my only life-threatening tumor at this point. I need to explore further. NIH and NCI are my next stop... surely by being aggressive and thinking outside the box I can buy myself some time...?
As of now the questions in my mind read like this:
Why wasn't I told exactly how big my tumors are?
How was I allowed to get to this point? (one for my attorney to ask, perhaps)
Can we radiate to shrink the tumor then resect?
Can we radiate to shrink the tumor then do SRS?
Can we de-bulk the tumor then do IL-2?
Can we de-bulk the tumor and do a chemo bath?
Or how about arterial perfusion?
There HAS to be something we can do. Time to hit the phone and find someone who will think outside the box with me.
Huh, looks like hope and positivity had just stepped out for a minute rather than left for good.
Hope... a truly human affliction.
posted by Heather at 12:24 PM
2 Comments:
I've came here by accident... and read your last post. Hope you get better.
Heather, I read your post on mpip and then came here to read your blog. Our son, Michael, passed away from melanoma in 2003 at the age of 17 so that is why I still keep up with the mpip. I don't post that often but I read it every day.
Anyway, I was diagnosed with primary liver cancer in 2002. The average life expectancy after diagnosis is 1 year. Well here I am still kicking (thanks to an aggressive onc). I know you are worried about the size of your tumor. My original tumor was 14 cm by 11 cm. They did surgery and thought they got it all but they didn't. I have had other tumors in my liver and have been treated with chemo, radioactive beads, chemoembolization, RFA and just recently SRS (which my scans from 1 month after the SRS showed my tumors to have shrunk in half).
My point is not to tell you my life story but to let you know there is always hope. Don't give up and make sure you have an aggressive doctor. I had to change oncs because the first one told me to just spend the time I had left with my family and I was not ready to give up.
You will feel better when you have a plan in place. Right now you are just reeling from the latest news. You CAN do it!
Take care.
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