Be it physically, emotionally, mentally, spiritually.. it all applies
Got an email from my dad today, and it's not exactly one you want going into holidays or any time really, it really nice seeing him take this in stride.. and with optimistic view... because well can't do it any other way or at least shouldn't IMO
Little back ground, 58yo 5 kids 6 grandkids ranging from 10-2, married 37.5 years, power lifts, does Spartan race, definetly has had a fairly full/fruitful life.. by most accounts
While I'm probably not as close to him as I'd like... He definitely raised the 5 of us to be self sufficient and self reliant or at least think/problem solve that way. to run on our own, the 5 of us are spread out across the USA for the most part.. to be independent thinkers, and not be afraid to go against the grain..
I'm sure someone will notice this apple didn't fall far from the tree, on some aspects..
Low grade/stage 2 lymphoma. Nothing to do at the moment, though there will be a bone marrow biopsy in January.
I asked what I should be looking for “pain bad enough that you can’t do stuff” or a couple other things. Well, that’s not exactly comforting, but better than just wondering about every ache and pain.
It may progress to stage 4 in 2 months or 2 years or a decade. Very mushy.
We’ll be researching vitamins, etc. You google experts are welcome to contribute.
At the moment we’re at the Orlando airport getting ready to fly to Ohio for 5 days....
Got him to expound on few things.. email few hours later.
Adam asked me some questions and I realized that I had not given enough information.
The main marker for prostate cancer is the PSA test. PSA is produced by the prostate gland OR by prostate cancer cells anywhere in the body. It is not a direct check for cancer, but an indicator that something is not right. PSA goes up (over 4), you either get a biopsy of the prostate and/or an MRI of the prostate to see what is going on. In order to officially have cancer, you have to have a biopsy.
Assuming cancer is found, there are 3 basic treatments.
surgical removal of the prostate which is no good if the cancer has spread outside of the prostate and has lots of complications and side effects.
some form of radiation (there are at least 4 types now), all of which have some of the same complications and side effects, but at least it's not surgery.
ADT/hormone deprivation therapy/chemical castration. The docs never use the last phrase, but that's what it is (literally..it's the same drugs the courts use for repeat sex offenders). This is really the only option if the cancer has metastasized outside the prostate. Once it has metastasized, it is incurable. The ADT can control it for a while. In some men "a while" is months, in others it is literally decades. But it is not pleasant.
Many doctors will do surgery or radiation and ADT. Some will do all 3.
So for me
HiFU #1, PSA was 14+, dropped to 0.7 after.
HiFU #2 PSA went back up to the 6 area, then dropped close to 1. In both cases it "should" have gone to 0.
Since it didn't drop to zero and started climbing again, we started scanning.
MRI of the pelvis specifically looking for prostate cancer - zilch
Bone scan looking for prostate cancer - zilch
PET scan from head to toe - swollen lymph glands in the abdomen, but they do not look like prostate cancer.
At this point I was referred from my urological oncologist to a hematology oncologist (ie, blood cancers which is what lymphoma falls under).
4 or 5 blood tests checking for specific types of cancers came back negative so we did a needle biopsy of a lymph gland in my abdomen this past Monday. Everyone has several hundred lymph nodes in their abdomen. "A bunch" (yeah, they used that phrase) of mine are inflamed/swollen/enlarged (all 3 terms have been used).
The results came back as the "low grade/stage 2 lymphoma".
Low grade means it is not aggressive (this is very good). The "grade" is determined by visual inspection of a tissue sample (yeah, really scientific and precise)
Stage 2 means it is confined to a specific organ(s) (the lymph glands) (this is also good)
It is NOT prostate cancer (this is good).
It is lymphatic cancer (this is not good)
At this point, there is no need to treat it...or it's not worth treating since I'm "asymptomatic"..ie, nothing hurts. I think this really means "the insurance won't pay for treatment until it gets worse" but that could just be my cynicism coming out.
The next step is a bone marrow biopsy (drill a hole in a hip bone and suck some marrow out) to make sure it is not hiding inside my bones. There was also some mention of making sure the genetics are right, but I don't know enough about that yet. If the marrow comes back positive, then it has metastasized (become Stage 4) and I'll be onto some sort of chemotherapy. But that is at least 2 months away at this point. If the marrow comes back negative, then I will be seeing the oncologist every 3 months for...a long while with repeated scans til I glow in the dark.
The best case (according to the Dr) is that it just sits there and doesn't grow. She didn't have any thought that diet or anything else would make a difference (we think different). Worst case is that it has spread to my bones. Middle case is that it grows and one of the lymph nodes starts pressing on a nerve or an organ and causes problems. Either of the bad cases can "happen in 2 months, 2 years or a decade".
At this point I've been scanned in various ways 7 or 8 times now (I think). I've been injected with at least 4 kinds of dyes or radioactive tracers. I've been under general anesthesia 1/2 dozen times in the last 3 years for various procedures and had things stuck in various areas that I would never have dreamed of.
So the good news is that "I'm not dead yet" as Monty Python said and not likely to die "soon" for some definition of soon. I feel fine and have no visible symptoms, no lumps or bumps that you can press and ooh and aah over or make me scream with. I still seem to be getting stronger with my lifting, etc and I'm having a blast at work. I still shock the drs because I'm only on 1 medication (low dose of high blood pressure med).
The not so good news is that the next test (bone marrow biopsy) could flip me from "let's watch it" to "let's start pumping poison into your system hopefully killing the cancer before the poison kills you" state.
The long term outlook is that I get to cycle through the previous sentence every 3-6 months for quite a while praying it never flips. This is NOT FUN but obviously preferable to the poison thing.
God is good and faithful in all things. I'm learning to rest in Him every day.
...
In the meantime, we will enjoy each other's company while we can, tomorrow isn't promised it's always a blessing
Got an email from my dad today, and it's not exactly one you want going into holidays or any time really, it really nice seeing him take this in stride.. and with optimistic view... because well can't do it any other way or at least shouldn't IMO
Little back ground, 58yo 5 kids 6 grandkids ranging from 10-2, married 37.5 years, power lifts, does Spartan race, definetly has had a fairly full/fruitful life.. by most accounts
While I'm probably not as close to him as I'd like... He definitely raised the 5 of us to be self sufficient and self reliant or at least think/problem solve that way. to run on our own, the 5 of us are spread out across the USA for the most part.. to be independent thinkers, and not be afraid to go against the grain..
I'm sure someone will notice this apple didn't fall far from the tree, on some aspects..
Low grade/stage 2 lymphoma. Nothing to do at the moment, though there will be a bone marrow biopsy in January.
I asked what I should be looking for “pain bad enough that you can’t do stuff” or a couple other things. Well, that’s not exactly comforting, but better than just wondering about every ache and pain.
It may progress to stage 4 in 2 months or 2 years or a decade. Very mushy.
We’ll be researching vitamins, etc. You google experts are welcome to contribute.
At the moment we’re at the Orlando airport getting ready to fly to Ohio for 5 days....
Got him to expound on few things.. email few hours later.
Adam asked me some questions and I realized that I had not given enough information.
The main marker for prostate cancer is the PSA test. PSA is produced by the prostate gland OR by prostate cancer cells anywhere in the body. It is not a direct check for cancer, but an indicator that something is not right. PSA goes up (over 4), you either get a biopsy of the prostate and/or an MRI of the prostate to see what is going on. In order to officially have cancer, you have to have a biopsy.
Assuming cancer is found, there are 3 basic treatments.
surgical removal of the prostate which is no good if the cancer has spread outside of the prostate and has lots of complications and side effects.
some form of radiation (there are at least 4 types now), all of which have some of the same complications and side effects, but at least it's not surgery.
ADT/hormone deprivation therapy/chemical castration. The docs never use the last phrase, but that's what it is (literally..it's the same drugs the courts use for repeat sex offenders). This is really the only option if the cancer has metastasized outside the prostate. Once it has metastasized, it is incurable. The ADT can control it for a while. In some men "a while" is months, in others it is literally decades. But it is not pleasant.
Many doctors will do surgery or radiation and ADT. Some will do all 3.
So for me
HiFU #1, PSA was 14+, dropped to 0.7 after.
HiFU #2 PSA went back up to the 6 area, then dropped close to 1. In both cases it "should" have gone to 0.
Since it didn't drop to zero and started climbing again, we started scanning.
MRI of the pelvis specifically looking for prostate cancer - zilch
Bone scan looking for prostate cancer - zilch
PET scan from head to toe - swollen lymph glands in the abdomen, but they do not look like prostate cancer.
At this point I was referred from my urological oncologist to a hematology oncologist (ie, blood cancers which is what lymphoma falls under).
4 or 5 blood tests checking for specific types of cancers came back negative so we did a needle biopsy of a lymph gland in my abdomen this past Monday. Everyone has several hundred lymph nodes in their abdomen. "A bunch" (yeah, they used that phrase) of mine are inflamed/swollen/enlarged (all 3 terms have been used).
The results came back as the "low grade/stage 2 lymphoma".
Low grade means it is not aggressive (this is very good). The "grade" is determined by visual inspection of a tissue sample (yeah, really scientific and precise)
Stage 2 means it is confined to a specific organ(s) (the lymph glands) (this is also good)
It is NOT prostate cancer (this is good).
It is lymphatic cancer (this is not good)
At this point, there is no need to treat it...or it's not worth treating since I'm "asymptomatic"..ie, nothing hurts. I think this really means "the insurance won't pay for treatment until it gets worse" but that could just be my cynicism coming out.
The next step is a bone marrow biopsy (drill a hole in a hip bone and suck some marrow out) to make sure it is not hiding inside my bones. There was also some mention of making sure the genetics are right, but I don't know enough about that yet. If the marrow comes back positive, then it has metastasized (become Stage 4) and I'll be onto some sort of chemotherapy. But that is at least 2 months away at this point. If the marrow comes back negative, then I will be seeing the oncologist every 3 months for...a long while with repeated scans til I glow in the dark.
The best case (according to the Dr) is that it just sits there and doesn't grow. She didn't have any thought that diet or anything else would make a difference (we think different). Worst case is that it has spread to my bones. Middle case is that it grows and one of the lymph nodes starts pressing on a nerve or an organ and causes problems. Either of the bad cases can "happen in 2 months, 2 years or a decade".
At this point I've been scanned in various ways 7 or 8 times now (I think). I've been injected with at least 4 kinds of dyes or radioactive tracers. I've been under general anesthesia 1/2 dozen times in the last 3 years for various procedures and had things stuck in various areas that I would never have dreamed of.
So the good news is that "I'm not dead yet" as Monty Python said and not likely to die "soon" for some definition of soon. I feel fine and have no visible symptoms, no lumps or bumps that you can press and ooh and aah over or make me scream with. I still seem to be getting stronger with my lifting, etc and I'm having a blast at work. I still shock the drs because I'm only on 1 medication (low dose of high blood pressure med).
The not so good news is that the next test (bone marrow biopsy) could flip me from "let's watch it" to "let's start pumping poison into your system hopefully killing the cancer before the poison kills you" state.
The long term outlook is that I get to cycle through the previous sentence every 3-6 months for quite a while praying it never flips. This is NOT FUN but obviously preferable to the poison thing.
God is good and faithful in all things. I'm learning to rest in Him every day.
...
In the meantime, we will enjoy each other's company while we can, tomorrow isn't promised it's always a blessing
