I need medical advice

stephenPE

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I just had a long interesting conversation with an old friend. We havent spoken in 20+ yrs. My ex #1 basically insisted I call him about my prostate cancer. Pete owns the Orange Shop in Citra. His wife and my ex were best buddies in college and they remain friends 45 yrs later. Pete had prostate cancer and went to the Proton Center in Jax five yrs ago.. He swears by it and says all the rest is blsshtt compared to it. Convinced me. But its like 4 to 6 weeks 5 days a week. Says it only takes about 15 minutes each time. No side effects and works as good as all the rest with side effects. I absolutely despise Jax and driving into it. But no side effcts is good. ANd I have a friend in Yullee that would probably let me stay over sometimes.
Pete says it is an amazing experience as you are there with all these men in like circumstances. That a nearby home rents to guys who live far away. Timmy's church has a great buffet on Fridays for cheap, nearby.
 

bradgator2

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Sorry Corch, but Pete was tricked and he paid through the nose for it.

The only real options for prostate cancer are:
1) do nothing (watchful waiting)
2) surgery
3) radiation

For radiation, you can have (both are excellent options):
a) permanent radioactive seeds implanted (one time thing) or
b) you can the 4-6 weeks of external beam of radiation

Prices:
1) free
2) about $15,000
3a) about $10,000
3b) about $40,000

So along comes UF and Jacksonville with their fancy $150,000,000 proton facility. Protons are a charged particle you launch into a patient instead of an xray you aim at the patient. Both are considered radiation, but the physics behind the 2 are completely different. Protons are great around the eyes and especially great in pediatric cancers. But that aint gonna cover the mortgage on a $150,000,000 machine. So they sell it to treat cancers of other body parts.

There is ZERO data to support the claim that a proton treatment is any better than an xray treatment of a prostate. None. Zero. And insurance companies know that. Therefore, they WILL NOT cover it. Before you are even allowed to see the doc in Jax, you will have a visit with their finance officer. Who will then explain that your out of pocket, non-insurance covered portion will be in the neighborhood of $100,000 (actual bill is $150,000). For a treatment that has no clinical advantage over standard radiation that you can get right there in Gainesville.

(The latest option to patients is where you get the 4-6 weeks worth of radiation but only in 5 visits. You will get serious side effects)
 

B52G8rAC

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Sorry Corch, but Pete was tricked and he paid through the nose for it.

The only real options for prostate cancer are:
1) do nothing (watchful waiting)
2) surgery
3) radiation

For radiation, you can have (both are excellent options):
a) permanent radioactive seeds implanted (one time thing) or
b) you can the 4-6 weeks of external beam of radiation

Prices:
1) free
2) about $15,000
3a) about $10,000
3b) about $40,000

So along comes UF and Jacksonville with their fancy $150,000,000 proton facility. Protons are a charged particle you launch into a patient instead of an xray you aim at the patient. Both are considered radiation, but the physics behind the 2 are completely different. Protons are great around the eyes and especially great in pediatric cancers. But that aint gonna cover the mortgage on a $150,000,000 machine. So they sell it to treat cancers of other body parts.

There is ZERO data to support the claim that a proton treatment is any better than an xray treatment of a prostate. None. Zero. And insurance companies know that. Therefore, they WILL NOT cover it. Before you are even allowed to see the doc in Jax, you will have a visit with their finance officer. Who will then explain that your out of pocket, non-insurance covered portion will be in the neighborhood of $100,000 (actual bill is $150,000). For a treatment that has no clinical advantage over standard radiation that you can get right there in Gainesville.

(The latest option to patients is where you get the 4-6 weeks worth of radiation but only in 5 visits. You will get serious side effects)
I agree with this. I have two friends who were diagnosed with prostate cancer, one before he was 50. They both are financially well of and opted to travel to Loma Linda for the gamma knife treatment. Both had successful treatment, alive more than 10 years but gamma is radiation and the big advantage of the "knife" is precise focus and the chance of not losing potency.
 

bradgator2

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I agree with this. I have two friends who were diagnosed with prostate cancer, one before he was 50. They both are financially well of and opted to travel to Loma Linda for the gamma knife treatment. Both had successful treatment, alive more than 10 years but gamma is radiation and the big advantage of the "knife" is precise focus and the chance of not losing potency.

Alright, we're going to get into some fine details. But this is a medical thread and you brought it up.

But your statement isnt accurate either.

Gammaknife is a very specific thing.
It's a helmet of cobalt 60 sources (looks like an air dryer in a beauty salon). It can ONLY treat things in the skull.

Now, they could have meant Cyberknife.
It's a small linear accelerated mounted on the end of robot (like the kind that you see in automobile manufacturing). That can be used to treat prostate.

In Gammeknife, the Co60 is a radioactive material and releases a 1.1 MV photon upon each decay.
In cyberknife, 6 MV photons are produced through the classic x-ray process of bremsstrahllung physics.

Both are photons. However, technically the Co60 photon is a gamma ray and the cyberknife photon is an xray. The origin is what defines the terms. A photon degenerated by the nucleus during a nuclear decay is a gamma ray. But in reality, there is no difference. If a 6 MV "gamma ray" and a 6 MV "x ray" passed in front on your nose... they are identical in every way. There is no way to tell them apart.

The other thing.... there is no Gammaknife or Cyberknife unit in Loma Linda.

The "knife" part is half related to the focus of the beam. The other half (and more important imo), is how you aim it at the prostate. The prostate is a soft tissue organ, that is surrounded by other soft tissue organs that are in a constant state of change (the bladder and rectum). "Lining up" the prostate for us takes longer than actually delivering the radiation treatment.
 

B52G8rAC

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Alright, we're going to get into some fine details. But this is a medical thread and you brought it up.

But your statement isnt accurate either.

Gammaknife is a very specific thing.
It's a helmet of cobalt 60 sources (looks like an air dryer in a beauty salon). It can ONLY treat things in the skull.

Now, they could have meant Cyberknife.
It's a small linear accelerated mounted on the end of robot (like the kind that you see in automobile manufacturing). That can be used to treat prostate.

In Gammeknife, the Co60 is a radioactive material and releases a 1.1 MV photon upon each decay.
In cyberknife, 6 MV photons are produced through the classic x-ray process of bremsstrahllung physics.

Both are photons. However, technically the Co60 photon is a gamma ray and the cyberknife photon is an xray. The origin is what defines the terms. A photon degenerated by the nucleus during a nuclear decay is a gamma ray. But in reality, there is no difference. If a 6 MV "gamma ray" and a 6 MV "x ray" passed in front on your nose... they are identical in every way. There is no way to tell them apart.

The other thing.... there is no Gammaknife or Cyberknife unit in Loma Linda.

The "knife" part is half related to the focus of the beam. The other half (and more important imo), is how you aim it at the prostate. The prostate is a soft tissue organ, that is surrounded by other soft tissue organs that are in a constant state of change (the bladder and rectum). "Lining up" the prostate for us takes longer than actually delivering the radiation treatment.
You are exactly correct, I think. I may have misremembered two different treatments. The Loma Linda is advertised now as a proton treatment. I still remember my friends calling it a gamma knife when they were treated, 15 years ago. This getting old thing really plays trick with your memory.
 

bradgator2

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You are exactly correct, I think. I may have misremembered two different treatments. The Loma Linda is advertised now as a proton treatment. I still remember my friends calling it a gamma knife when they were treated, 15 years ago. This getting old thing really plays trick with your memory.

For many years, Loma Linda and Mass General in Boston were the only proton units in the World. Now, they are everywhere. For example, Jacksonville has 2. Orlando has 1. And the insurance companies still wont reimburse it. It’s basically a cash only option. It’s nuts.
 

Nalt

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Waiting GIF



In all seriousness, I hope it went well @Nalt
I am still among the living. The procedure went well. I have a HUGE scar on my throat. I am not wearing a collar. Doc said he wants me moving my head to regain some of my range of movement. My shoulder/arm/hand pain is totally gone but there is some numbness/tingly feeling in my thumb still. He said that IF that goes away it will be the last thing and it can take a while. Overall, I am happy with this so far.
 

Detroitgator

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I am still among the living. The procedure went well. I have a HUGE scar on my throat. I am not wearing a collar. Doc said he wants me moving my head to regain some of my range of movement. My shoulder/arm/hand pain is totally gone but there is some numbness/tingly feeling in my thumb still. He said that IF that goes away it will be the last thing and it can take a while. Overall, I am happy with this so far.
Your prostate was in your throat?!?!?!?!?!!?!?

(seriously though, glad your doing well)
 

stephenPE

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Sorry Corch, but Pete was tricked and he paid through the nose for it.

The only real options for prostate cancer are:
1) do nothing (watchful waiting)
2) surgery
3) radiation

For radiation, you can have (both are excellent options):
a) permanent radioactive seeds implanted (one time thing) or
b) you can the 4-6 weeks of external beam of radiation

Prices:
1) free
2) about $15,000
3a) about $10,000
3b) about $40,000

So along comes UF and Jacksonville with their fancy $150,000,000 proton facility. Protons are a charged particle you launch into a patient instead of an xray you aim at the patient. Both are considered radiation, but the physics behind the 2 are completely different. Protons are great around the eyes and especially great in pediatric cancers. But that aint gonna cover the mortgage on a $150,000,000 machine. So they sell it to treat cancers of other body parts.

There is ZERO data to support the claim that a proton treatment is any better than an xray treatment of a prostate. None. Zero. And insurance companies know that. Therefore, they WILL NOT cover it. Before you are even allowed to see the doc in Jax, you will have a visit with their finance officer. Who will then explain that your out of pocket, non-insurance covered portion will be in the neighborhood of $100,000 (actual bill is $150,000). For a treatment that has no clinical advantage over standard radiation that you can get right there in Gainesville.

(The latest option to patients is where you get the 4-6 weeks worth of radiation but only in 5 visits. You will get serious side effects)
Well, he had it 5 yrs ago. Swore by it along with his group of men that were all there. And said that my medicare and supplemental would pay for it now. His main theme was NO after effects and was good as radiation. I appreciate your input as I was sure it was Jacksonville for me. My best friend who believes everything his TV says (always on Fox) says I just need organic iodine and saw palmetto and it will flush the cancer out of my prostrate(as he pronounces it) It comes from sea moss. Sounds a lot less invasive and cheaper maybe. btw he also thought that 10k he gave some guy would become 100k the govt. was gonna give him.........seriously, thanks Brad
 

bradgator2

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Well, he had it 5 yrs ago. Swore by it along with his group of men that were all there. And said that my medicare and supplemental would pay for it now. His main theme was NO after effects and was good as radiation. I appreciate your input as I was sure it was Jacksonville for me. My best friend who believes everything his TV says (always on Fox) says I just need organic iodine and saw palmetto and it will flush the cancer out of my prostrate(as he pronounces it) It comes from sea moss. Sounds a lot less invasive and cheaper maybe. btw he also thought that 10k he gave some guy would become 100k the govt. was gonna give him.........seriously, thanks Brad

You can do all that homeopathic stuff if you want….. but please please please also get one of the standard proven treatments.
 
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stephenPE

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i guess i should have made it clear that internet remedies are nothing I would ever consider for cancer or much anything else........
 

AlexDaGator

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@bradgator2

Friend of mine has breast cancer. Doctors told her she was a candidate for proton because it was so close to her heart that normal radiation would be dangerous.

Dunno if that's BS or what.

Regardless, she's driving from the coast to Orlando every single day for 16 straight days (or something like that).

I'm hoping her insurance will cover it because of the circumstances. I thought about what you wrote, but I didn't ask her any questions. In situations like this, I try to focus more on being supportive than on giving helpful advice.


Alex.
 

bradgator2

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@bradgator2

Friend of mine has breast cancer. Doctors told her she was a candidate for proton because it was so close to her heart that normal radiation would be dangerous.

Dunno if that's BS or what.

Regardless, she's driving from the coast to Orlando every single day for 16 straight days (or something like that).

I'm hoping her insurance will cover it because of the circumstances. I thought about what you wrote, but I didn't ask her any questions. In situations like this, I try to focus more on being supportive than on giving helpful advice.


Alex.

I can assume she has cancer in her left breast. For the right breast, this is a complete non issue.

Your heart is cheated to the left, so we do take that into consideration for cancer in the left breast. But just because it is left breast cancer doesn't mean the heart is problem.... it has to be evaluated. For some women, the heart is mile away and so it is a none issue. For other women, the heart is tucked up tight to the chestwall under the breast. For those woman, we start to get fancy. We shape and control the radiation in such a way that it minimizes dose to the heart. It's about twice as expensive as a right breast treatment, but it's worth it to lower the heart dose.

Two additional points:
Pretty much ALL standard radiation oncology practices can do this. The proton treatment offers no advantage. Except that bill will be double the double. It wont be a bad treatment, it's just the additional cost provides no extra benefit.

Regarding the 16 treatments.... I hate it. Historically, we have always treated the breast in 25 or 28 treatments. Guess who started and made the breast 16 treatments famous.... the Canadians. It's even called "The Canadian Protocol". We know what kind of healthcare the Canadians have. They do this because it is cheaper. But you tell a woman they can be treated 16 times or 28 times... they will pick 16 times all day.

Here is the deal with radiation: we have to treat cancer cells. But the healthy cells are nearby or in the way. The more dose you can deliver per treatment, the better you can kill the cancer. The rub is it harsher on the healthy cells. This is why we have do a little bit of treatment over the course of several weeks, and not in a single treatment. The smaller the dose per treatment, the smaller the side effects. But it takes longer. Her cancer will definitely be taken care of with 16 treatments. Her big side effect will be in a few months, her breast will change in softness. It will get hard. Unfortunately, that will be a forever change. You dont get this with a 25 or 26 treatment protocol. If you are in a wheelchair, or live hours away from a treatment center, or cost is real concern.... then fewer (higher dose per treatment) is an advantage. Otherwise.... slower is always better.

Oh... one more thing.... you have any pictures?
 

Gator By Marriage

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I can assume she has cancer in her left breast. For the right breast, this is a complete non issue.

Your heart is cheated to the left, so we do take that into consideration for cancer in the left breast. But just because it is left breast cancer doesn't mean the heart is problem.... it has to be evaluated. For some women, the heart is mile away and so it is a none issue. For other women, the heart is tucked up tight to the chestwall under the breast. For those woman, we start to get fancy. We shape and control the radiation in such a way that it minimizes dose to the heart. It's about twice as expensive as a right breast treatment, but it's worth it to lower the heart dose.

Two additional points:
Pretty much ALL standard radiation oncology practices can do this. The proton treatment offers no advantage. Except that bill will be double the double. It wont be a bad treatment, it's just the additional cost provides no extra benefit.

Regarding the 16 treatments.... I hate it. Historically, we have always treated the breast in 25 or 28 treatments. Guess who started and made the breast 16 treatments famous.... the Canadians. It's even called "The Canadian Protocol". We know what kind of healthcare the Canadians have. They do this because it is cheaper. But you tell a woman they can be treated 16 times or 28 times... they will pick 16 times all day.

Here is the deal with radiation: we have to treat cancer cells. But the healthy cells are nearby or in the way. The more dose you can deliver per treatment, the better you can kill the cancer. The rub is it harsher on the healthy cells. This is why we have do a little bit of treatment over the course of several weeks, and not in a single treatment. The smaller the dose per treatment, the smaller the side effects. But it takes longer. Her cancer will definitely be taken care of with 16 treatments. Her big side effect will be in a few months, her breast will change in softness. It will get hard. Unfortunately, that will be a forever change. You dont get this with a 25 or 26 treatment protocol. If you are in a wheelchair, or live hours away from a treatment center, or cost is real concern.... then fewer (higher dose per treatment) is an advantage. Otherwise.... slower is always better.

Oh... one more thing.... you have any pictures?
What about the women who have no heart? I know these women exist because I dated quite a few of them.
 

bradgator2

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Wait, @bradgator2 is a breast expert?

:shocked:

Prostate and Breast cancer are the biggies. Probably half of the total work we do. Every day we treat roughly 100 men/women with prostate or breast cancer.

All day, every day.

Yes, I check all of them out. The women, not the men. 99.9% of the time it’s more of internal cringe response. But I am a professional. I am also sick and twisted, so the internal humor keeps the job fun.

My response at work is usually like this:

survivor-shocked.gif
 

AlexDaGator

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I can assume she has cancer in her left breast. For the right breast, this is a complete non issue.

Your heart is cheated to the left, so we do take that into consideration for cancer in the left breast. But just because it is left breast cancer doesn't mean the heart is problem.... it has to be evaluated. For some women, the heart is mile away and so it is a none issue. For other women, the heart is tucked up tight to the chestwall under the breast. For those woman, we start to get fancy. We shape and control the radiation in such a way that it minimizes dose to the heart. It's about twice as expensive as a right breast treatment, but it's worth it to lower the heart dose.

Two additional points:
Pretty much ALL standard radiation oncology practices can do this. The proton treatment offers no advantage. Except that bill will be double the double. It wont be a bad treatment, it's just the additional cost provides no extra benefit.

Regarding the 16 treatments.... I hate it. Historically, we have always treated the breast in 25 or 28 treatments. Guess who started and made the breast 16 treatments famous.... the Canadians. It's even called "The Canadian Protocol". We know what kind of healthcare the Canadians have. They do this because it is cheaper. But you tell a woman they can be treated 16 times or 28 times... they will pick 16 times all day.

Here is the deal with radiation: we have to treat cancer cells. But the healthy cells are nearby or in the way. The more dose you can deliver per treatment, the better you can kill the cancer. The rub is it harsher on the healthy cells. This is why we have do a little bit of treatment over the course of several weeks, and not in a single treatment. The smaller the dose per treatment, the smaller the side effects. But it takes longer. Her cancer will definitely be taken care of with 16 treatments. Her big side effect will be in a few months, her breast will change in softness. It will get hard. Unfortunately, that will be a forever change. You dont get this with a 25 or 26 treatment protocol. If you are in a wheelchair, or live hours away from a treatment center, or cost is real concern.... then fewer (higher dose per treatment) is an advantage. Otherwise.... slower is always better.

Oh... one more thing.... you have any pictures?
Dick Wolf Thank You GIF by Wolf Entertainment


Alex.
 

CDGator

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Prostate and Breast cancer are the biggies. Probably half of the total work we do. Every day we treat roughly 100 men/women with prostate or breast cancer.

All day, every day.

Yes, I check all of them out. The women, not the men. 99.9% of the time it’s more of internal cringe response. But I am a professional. I am also sick and twisted, so the internal humor keeps the job fun.

My response at work is usually like this:

survivor-shocked.gif
How many women do you treat with prostate cancer?
 

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