Prognosis stuff
The other night I got an urge to investigate my prognosis more, to see if I could understand why my onco didn't want to give me anything more than "between 4 months and 10 years", though the radiologist was willing to say "median of 18-24 months". I found a great journal, and we spent some time reading it and understanding it.
There are a bunch of different factors, one paper says, that affect prognosis. It seems that I must wait to find out some of those factors, and these relate to how I respond to the treatments the onco has given me.
Good factors include: it was 5 years between first diagnosis and recurrence being diagnosed. Typically, it's only 20 months. That makes me more likely to live a little longer.
- I have no symptoms of advanced liver cancer, such as jaundice, swelling of the abdomen/legs or enlarged liver. (Once you get these, it's rapid decline city).
- My cancer is oestrogen receptive.
- I am slightly on the younger side. If you're 44 or less on diagnosis you have a much better chance of longer survival, up to a year more. I'm 47. Once you hit 50 on diagnosis that advantage disappears, and it's only a factor if you're premenopausal. I'm not sure if that's me or not, I was premenopausal on first diagnosis but the chemo I got in round 1 nuked my hormone levels. I hover around menopausal levels these days.. just under the levels they call menopausal.
Bad factors include:
- the cancer sites are widespread
- it's in the liver (bone on its own is way better, you can live 10 years or more with that).
- my initial breast cancer was a grade 3, the most aggressive kind
Factors I don't know
- more sites in the liver is bad. 5 or more is very bad, under 5 better. I don't know how many I have though I know it's more than one. I'll ask when I see the doctor, next Tuesday.
- Ki67 protein levels. These are "correlated with the clinical course of cancer. The best-studied examples in this context are carcinomas of theprostate and the breast. For these types of tumors, the prognostic value for survival and tumor recurrence have repeatedly been proven in uni- and multivariate analysis."
- how I'm responding to the hormonal treatment I'm on (at present it looks as if I'm not, but the doctor wants to see if the levels were affected by the antibiotics I was on before making a call on that. If I respond well to that I can get an extra 10 months. If I don't, I lose 6 months, so it's a massive difference.
- liver enzymes and tumour markers. These have been taken but I don't have a copy, so I don't know what they are. I know they're "up". I will make sure to find out the numbers next week. If CEA levels are 5 ng/ml or more that's bad, and if Ca 15-3 levels are above >35 U/ml that's bad.
Would someone like to convert that into metric for me?
If you're a candidate for this, getting specific regional treatments gives a massively longer survival rate. These include surgery, interstitional laser therapy, stereotactic irradiation and intraarterial chemotherapy. It can give you up to another year. However, you have to have all that treatment and it all makes you feel like shit, so I'm not sure I want it. I believe you only get this if you have liver cancer mets only, and the fact that it's in my bones as well means I won't get any benefit from it.
So, more questions to address with Dr D, but the two most important are my ki67 levels and how I'm responding to the hormones.
You know, I don't even want to survive 5 years with this, not unless I knew that there is some kind of actual cure on the horizon. I feel like shit. I don't feel like ME. My lively, excited, full of life over the top self is not here any more.
It felt good to sit there with Julian, reading all of this and coming to grips with what all the medical jargon means.
Julian's conclusion was: this is terrific because what it means is that my doctor is across all of this and that' s why he's not giving me a prognosis. He doesn't have enough information to give us one, and he had actually said that.
The radiologist was willing to give the median, and that is useful too for planning purposes.
And now, I am armed with lots of useful questions for my next onco visit in a few days.
There are a bunch of different factors, one paper says, that affect prognosis. It seems that I must wait to find out some of those factors, and these relate to how I respond to the treatments the onco has given me.
Good factors include: it was 5 years between first diagnosis and recurrence being diagnosed. Typically, it's only 20 months. That makes me more likely to live a little longer.
- I have no symptoms of advanced liver cancer, such as jaundice, swelling of the abdomen/legs or enlarged liver. (Once you get these, it's rapid decline city).
- My cancer is oestrogen receptive.
- I am slightly on the younger side. If you're 44 or less on diagnosis you have a much better chance of longer survival, up to a year more. I'm 47. Once you hit 50 on diagnosis that advantage disappears, and it's only a factor if you're premenopausal. I'm not sure if that's me or not, I was premenopausal on first diagnosis but the chemo I got in round 1 nuked my hormone levels. I hover around menopausal levels these days.. just under the levels they call menopausal.
Bad factors include:
- the cancer sites are widespread
- it's in the liver (bone on its own is way better, you can live 10 years or more with that).
- my initial breast cancer was a grade 3, the most aggressive kind
Factors I don't know
- more sites in the liver is bad. 5 or more is very bad, under 5 better. I don't know how many I have though I know it's more than one. I'll ask when I see the doctor, next Tuesday.
- Ki67 protein levels. These are "correlated with the clinical course of cancer. The best-studied examples in this context are carcinomas of theprostate and the breast. For these types of tumors, the prognostic value for survival and tumor recurrence have repeatedly been proven in uni- and multivariate analysis."
- how I'm responding to the hormonal treatment I'm on (at present it looks as if I'm not, but the doctor wants to see if the levels were affected by the antibiotics I was on before making a call on that. If I respond well to that I can get an extra 10 months. If I don't, I lose 6 months, so it's a massive difference.
- liver enzymes and tumour markers. These have been taken but I don't have a copy, so I don't know what they are. I know they're "up". I will make sure to find out the numbers next week. If CEA levels are 5 ng/ml or more that's bad, and if Ca 15-3 levels are above >35 U/ml that's bad.
Would someone like to convert that into metric for me?
If you're a candidate for this, getting specific regional treatments gives a massively longer survival rate. These include surgery, interstitional laser therapy, stereotactic irradiation and intraarterial chemotherapy. It can give you up to another year. However, you have to have all that treatment and it all makes you feel like shit, so I'm not sure I want it. I believe you only get this if you have liver cancer mets only, and the fact that it's in my bones as well means I won't get any benefit from it.
So, more questions to address with Dr D, but the two most important are my ki67 levels and how I'm responding to the hormones.
You know, I don't even want to survive 5 years with this, not unless I knew that there is some kind of actual cure on the horizon. I feel like shit. I don't feel like ME. My lively, excited, full of life over the top self is not here any more.
It felt good to sit there with Julian, reading all of this and coming to grips with what all the medical jargon means.
Julian's conclusion was: this is terrific because what it means is that my doctor is across all of this and that' s why he's not giving me a prognosis. He doesn't have enough information to give us one, and he had actually said that.
The radiologist was willing to give the median, and that is useful too for planning purposes.
And now, I am armed with lots of useful questions for my next onco visit in a few days.