JD's Prostate Cancer Treatment
Donation protected
Update [Nov 25, 2017]
Surgery is scheduled for Dec 4th, 2017. It will be a 2-1/2 hour procedure, overnight stay, and about a 2-week recovery before I can be active.
Since I am not having the HIFU treatment, and instead proceeding with a treatment the insurance will cover, I am returning your donations. The bottom line is that I have to put some "skin in the game", or like David says in 1 Chronicles 21:24 “...I will buy them for the full price. I will not take for the LORD what is yours, nor offer burnt offerings that cost me nothing.”
By the way, this process has really opened my eyes to the cost of healthcare. Below is a chart showing my healthcare claims made to the insurance this year:
It will certainly go up after this surgery! As an example, here are the charges for the last biopsy, MRI, and pathology report. T
I must say this: thank God for insurance :). As I probably mentioned in a previous update, my insurance would not have been that liberal for the HIFU treatment, but that's okay. I'm at peace with it all.
If I haven't contacted you about returning your donation, please let me know. For those who have rejected the donation, I will donate the funds to Compassion where it will go a long way to help needy families.
God willing, I will provide a post-operation report next month.
Thank you all again for your support!
Update [Oct 25, 2017]
I'm back in NYC for some training related to work, but I was able to get the biopsy results from the doctor.
I now have intermediate-risk prostate cancer. The cancer is in more places in my prostate and still confined to the prostate (we hope). The area on the MRI where there seemed to be cancer was correct, but there were other areas showing cancer that were not discernable on the MRI. In other words, the MRI imaging is probably not very effective for me to gauge the progression of the cancer.
So active surveillance is probably not my future (at least not with imaging). And HIFU is also not in my future, as even if the entire prostate was ablated (destroy the tissue with heat), there is still a chance cancer will be present. I knew this before, but I also thought the cancer was somewhat limited to one side of the prostate. Everything has changed now with more information!
A a wise person said to me recently: "CANCER IS YOUR ENEMY". And when you are in a battle, you have to find out how to best fight your enemy. Did you know people actually study warfare and have military strategies for fighting? Well, I am thinking now it is time to end this and go with the shock and awe approach.
So surgery it is. Don't really want to talk about the gory details -- maybe in a later post.
In the meantime, I want to thank all of you for helping me on this journey, supporting me financially, and with your prayers. I am truly humbled to come to this point after a year of seeking, asking, and knocking. But as someone once said: "Here I stand. I cannot do otherwise. God help me, Amen! "
Update [Oct 20, 2017]
On Oct 12th, I did return to NYC Presbyterian hospital, Weill-Cornell Medical College. Wonderful people. Great experience. At 7:30am I had an MRI of my prostate done. And then at 2:00pm, they had identified areas in my prostate to take biopsy samples from. One year ago, I had my first prostate biopsy, and it was no fun. But this time, it all went very smoothly and (on a scale from 1-10), about a 2-3 on the pain scale!!! And recovery for the past week has been great -- no problems to report.
This is an image of my prostate, with markers of where they took biopsy samples. The purple area at the top left is an area they suspect has prostate cancer.
I've been waiting this past week to hear back on the pathology results. This is where I can learn more about the results of the biopsy, such as the extent and grade of cancer. I would also learn whether or not I qualify for the clinical trial and get HIFU treatment of my prostate.
Well, about an hour ago, I did receive a call from Dr. McClure. And the results are: I do not qualify for the clinical trial!! The cancer is on both sides of my prostate, and it is a higher grade than was reported from the first biopsy. :( It was not the result I had hoped for! But, it is not all bad news.
Next week, I'll travel to NYC for some training, but I will also have an appointment with Dr. McClure and discuss options. I am leaning towards just not doing the HIFU treatment after all, and looking at other traditional options (like dreaded surgery)!!!
I'll know more after next week and let you all know more details about the biopsy results as I learn them.
This has been a journey with me trying to discern what the course of action the Lord wants me to take. I think we're getting closer to discovering what that is. For now, the treatment I figured was best (HIFU), is probably not going to work. But I am quite confident the Lord knows what is best!
Thank you all for your prayers and support and stay tuned for an update next week!
Update [Sep 19, 2017]
Since my last update, I've had a few visits with urologists about my situation. As you know, I've been desirous to have the HIFU treatment and seeking your help to make that happen.
And with your help, I've made some progress. But there's been other developments too.
As part of the active surveillance protocol, I am to have regular PSA checks and periodic biopsies to gauge the progression of cancer. Well, my most recent PSA numbers came back showing an increase. This is not a good sign. Especially since I was hoping that taking the 20+ supplement pills every day would help!
[This is my morning round: about 10 pills]
So in about 1 year, the PSA numbers have risen from 6.7 to 10.1. and 10 is a concerning number that may mean I needed to do something sooner than later. I also need to do a follow-up biopsy and get more information that may suggest I better take care of this now. One urologist said that based on the size of my prostate (volume) and the PSA level, I probably have more cancer than the Gleason score 6 is indicating. And another urologist said this about me: "you like playing the odds, but the deck is stacked against you." I understood what he meant. I have a family history of prostate cancer (my father had it), and I am African-American . Those were sobering words and I think he meant to get me to do something about it. -- like surgery. I told him I was afraid of the damage surgery might do. But he assured me everything would be "ok". But frankly, I just don't believe him.
It turns out I have been thinking of another plan: plan C. I might not have mentioned before that plan A was to pursue a radiation treatment called cyberknife , but a doctor scared me out of that option, plus insurance wouldn't cover the cost. Then I did more research and came up with plan B: pay the $25k for HIFU. But that will take some time to get that amount raised.
So plan C has me on a bus ride to NYC to meet with some researchers at Weill-Cornell Medical College
to partake in a clinical trial that will make use of the HIFU treatment. I met with the research team today and was really impressed and excited that perhaps this could help me and help others.
So I have a followup appointment scheduled for Oct 12 to have an MRI and biopsy done. If the grade of the cancer is within the limits (greater than Gleason 6 and PSA < 20), I'll be enrolled! I'm excited! I might actually get the treatment I want.
Now there are some caveats. This treatment does not medically cure prostate cancer as there will still be a prostate remaining after the treatment. So there is always a chance prostate cancer can reappear. The only sure way to cure it is to remove it. That is plan X that we'll do only if absolutely necessary. But for now, let's see where plan C takes us. And I'll give more updates after Oct 12th.
====
Original Message: [Aug 18, 2017]
Let's get this done!
I need your help. I need $25K to pay for a Prostate Cancer treatment (High Intensity Focused Ultrasound:
Unfortunately, this treatment is not currently covered by any insurance (that I am aware of). It's been used outside of the US for about 17 years now. And, in the US since about 2015.
Did you know Prostate Cancer treatments come in many flavors?
==Do Nothing (for now)==
This is "Active Surveillance" or "Watchful Waiting". This is a preferred treatment when you have localized, low-risk Prostate Cancer (meaning it is contained in the organ, and not growing aggressively). This is what I am doing. I get regular blood tests (and biopsies) to check the status of cancer. Basically, I'm waiting until things get to the point that I HAVE TO do one of the options below. According to the American Cancer Society, prostate cancer costs, on average, about $4,300 initially and about $9,100 over five years, for watchful waiting.
https://www.cancer.org/cancer/prostate-cancer/treating/watchful-waiting.html
==Surgery==
"The cost for the procedure ranged from a high of $135,000 to a low of about $10,000. Physician fees varied from $4000 up to about $19,000. The average cost for a physician or for a surgeon was about $8000. It is interesting to note that Medicare allows under $1700 for the procedure and pays 80% of that."
How Much Does a Prostatectomy Cost? - Medscape
www.medscape.com/viewarticle/827814
==Radiation==
"The cost of radiation therapy was estimated from Medicare reimbursements. The median cost for a course of radiation therapy per patient was $8600 (interquartile range [IQR], $7300 to $10300) for breast cancer, $9000 (IQR, $7500 to $11,100) for lung cancer, and $18,000 (IQR, $11,300 to $25,500) for prostate cancer.Aug 13, 2015"
Large Cost Variations for Radiotherapy in Medicare Patients - Medscape
www.medscape.com/viewarticle/849474
==Hormonal Therapy==
"It costs about $17,500 initially and $25,000 total over five years for hormone therapy with radiation." Basically, this treatment is like getting chemical castration. Do I need to say anymore?
http://health.costhelper.com/prostate-cancer-treatment.html
These treatments (surgery, radiation) attempt to kill the prostate and thus kill cancer. And all of them carry a high risk of undesired side effects. I do recall my doctor saying that "I don't need my prostate, so what's the big deal"?
The big deal is about the quality of life. It's about avoiding becoming incontinent, impotent, and wearing diapers!
Granted, if that is what will happen, then fine. But can it be avoided? The answer is YES!
I've done lots of research the past 8 months, not just thinking about what I want, but understanding what is possible. (Of course, what I want is for all of this to go away. The off-and-on pain to go away. The monkey on the back to go away).
But I've also come to understand how the medical system works. The goal is to cure you of your disease and to use a treatment that will accomplish that with the greatest level of confidence. And the cure can come with whatever cost (side-effect) that has to come, because, well, because you get cured! And so really it's the patient who has to find the treatment option and ultimately make the decision. And the patient can only get what they can afford (and what is available)!
And there's the rub. There are plenty of treatment options, but getting access to them, or rather, paying for them can be a challenge (as it is for me).
The treatment I want is called: High Intensity Focused Ultrasound (HIFU). And you ask why? Let me quote from Vituro Health Medical Director Stephen Scionti, M.D., the leading U.S. HIFU expert:
“Really, it becomes decisions about quality of life. HIFU gives a patient the best chance of getting rid of their cancer and at the same time provides them with an unchanged quality of life; what other pathway or treatment can do that?” Scionti asks. “Because we have the ability to properly identify where the tumor is and to avoid critical structures in a precise manner, we have a very low side effect profile which means that men can maintain their quality of life.”
http://viturohealth.com/blog/why-choose-hifu/
And the cost? Well, in the US, about $25,000.
http://www.miamiherald.com/living/health-fitness/article68452672.html
So let's get this done, together, with your help, and get this cancer out of me in a safe, reliable way that will preserve my quality of life.
Thank you for watching, reading, and responding.
JD
Surgery is scheduled for Dec 4th, 2017. It will be a 2-1/2 hour procedure, overnight stay, and about a 2-week recovery before I can be active.
Since I am not having the HIFU treatment, and instead proceeding with a treatment the insurance will cover, I am returning your donations. The bottom line is that I have to put some "skin in the game", or like David says in 1 Chronicles 21:24 “...I will buy them for the full price. I will not take for the LORD what is yours, nor offer burnt offerings that cost me nothing.”
By the way, this process has really opened my eyes to the cost of healthcare. Below is a chart showing my healthcare claims made to the insurance this year:
It will certainly go up after this surgery! As an example, here are the charges for the last biopsy, MRI, and pathology report. T
I must say this: thank God for insurance :). As I probably mentioned in a previous update, my insurance would not have been that liberal for the HIFU treatment, but that's okay. I'm at peace with it all.
If I haven't contacted you about returning your donation, please let me know. For those who have rejected the donation, I will donate the funds to Compassion where it will go a long way to help needy families.
God willing, I will provide a post-operation report next month.
Thank you all again for your support!
Update [Oct 25, 2017]
I'm back in NYC for some training related to work, but I was able to get the biopsy results from the doctor.
I now have intermediate-risk prostate cancer. The cancer is in more places in my prostate and still confined to the prostate (we hope). The area on the MRI where there seemed to be cancer was correct, but there were other areas showing cancer that were not discernable on the MRI. In other words, the MRI imaging is probably not very effective for me to gauge the progression of the cancer.
So active surveillance is probably not my future (at least not with imaging). And HIFU is also not in my future, as even if the entire prostate was ablated (destroy the tissue with heat), there is still a chance cancer will be present. I knew this before, but I also thought the cancer was somewhat limited to one side of the prostate. Everything has changed now with more information!
A a wise person said to me recently: "CANCER IS YOUR ENEMY". And when you are in a battle, you have to find out how to best fight your enemy. Did you know people actually study warfare and have military strategies for fighting? Well, I am thinking now it is time to end this and go with the shock and awe approach.
So surgery it is. Don't really want to talk about the gory details -- maybe in a later post.
In the meantime, I want to thank all of you for helping me on this journey, supporting me financially, and with your prayers. I am truly humbled to come to this point after a year of seeking, asking, and knocking. But as someone once said: "Here I stand. I cannot do otherwise. God help me, Amen! "
Update [Oct 20, 2017]
On Oct 12th, I did return to NYC Presbyterian hospital, Weill-Cornell Medical College. Wonderful people. Great experience. At 7:30am I had an MRI of my prostate done. And then at 2:00pm, they had identified areas in my prostate to take biopsy samples from. One year ago, I had my first prostate biopsy, and it was no fun. But this time, it all went very smoothly and (on a scale from 1-10), about a 2-3 on the pain scale!!! And recovery for the past week has been great -- no problems to report.
This is an image of my prostate, with markers of where they took biopsy samples. The purple area at the top left is an area they suspect has prostate cancer.
I've been waiting this past week to hear back on the pathology results. This is where I can learn more about the results of the biopsy, such as the extent and grade of cancer. I would also learn whether or not I qualify for the clinical trial and get HIFU treatment of my prostate.
Well, about an hour ago, I did receive a call from Dr. McClure. And the results are: I do not qualify for the clinical trial!! The cancer is on both sides of my prostate, and it is a higher grade than was reported from the first biopsy. :( It was not the result I had hoped for! But, it is not all bad news.
Next week, I'll travel to NYC for some training, but I will also have an appointment with Dr. McClure and discuss options. I am leaning towards just not doing the HIFU treatment after all, and looking at other traditional options (like dreaded surgery)!!!
I'll know more after next week and let you all know more details about the biopsy results as I learn them.
This has been a journey with me trying to discern what the course of action the Lord wants me to take. I think we're getting closer to discovering what that is. For now, the treatment I figured was best (HIFU), is probably not going to work. But I am quite confident the Lord knows what is best!
Thank you all for your prayers and support and stay tuned for an update next week!
Update [Sep 19, 2017]
Since my last update, I've had a few visits with urologists about my situation. As you know, I've been desirous to have the HIFU treatment and seeking your help to make that happen.
And with your help, I've made some progress. But there's been other developments too.
As part of the active surveillance protocol, I am to have regular PSA checks and periodic biopsies to gauge the progression of cancer. Well, my most recent PSA numbers came back showing an increase. This is not a good sign. Especially since I was hoping that taking the 20+ supplement pills every day would help!
[This is my morning round: about 10 pills]
So in about 1 year, the PSA numbers have risen from 6.7 to 10.1. and 10 is a concerning number that may mean I needed to do something sooner than later. I also need to do a follow-up biopsy and get more information that may suggest I better take care of this now. One urologist said that based on the size of my prostate (volume) and the PSA level, I probably have more cancer than the Gleason score 6 is indicating. And another urologist said this about me: "you like playing the odds, but the deck is stacked against you." I understood what he meant. I have a family history of prostate cancer (my father had it), and I am African-American . Those were sobering words and I think he meant to get me to do something about it. -- like surgery. I told him I was afraid of the damage surgery might do. But he assured me everything would be "ok". But frankly, I just don't believe him.
It turns out I have been thinking of another plan: plan C. I might not have mentioned before that plan A was to pursue a radiation treatment called cyberknife , but a doctor scared me out of that option, plus insurance wouldn't cover the cost. Then I did more research and came up with plan B: pay the $25k for HIFU. But that will take some time to get that amount raised.
So plan C has me on a bus ride to NYC to meet with some researchers at Weill-Cornell Medical College
to partake in a clinical trial that will make use of the HIFU treatment. I met with the research team today and was really impressed and excited that perhaps this could help me and help others.
So I have a followup appointment scheduled for Oct 12 to have an MRI and biopsy done. If the grade of the cancer is within the limits (greater than Gleason 6 and PSA < 20), I'll be enrolled! I'm excited! I might actually get the treatment I want.
Now there are some caveats. This treatment does not medically cure prostate cancer as there will still be a prostate remaining after the treatment. So there is always a chance prostate cancer can reappear. The only sure way to cure it is to remove it. That is plan X that we'll do only if absolutely necessary. But for now, let's see where plan C takes us. And I'll give more updates after Oct 12th.
====
Original Message: [Aug 18, 2017]
Let's get this done!
I need your help. I need $25K to pay for a Prostate Cancer treatment (High Intensity Focused Ultrasound:
Unfortunately, this treatment is not currently covered by any insurance (that I am aware of). It's been used outside of the US for about 17 years now. And, in the US since about 2015.
Did you know Prostate Cancer treatments come in many flavors?
==Do Nothing (for now)==
This is "Active Surveillance" or "Watchful Waiting". This is a preferred treatment when you have localized, low-risk Prostate Cancer (meaning it is contained in the organ, and not growing aggressively). This is what I am doing. I get regular blood tests (and biopsies) to check the status of cancer. Basically, I'm waiting until things get to the point that I HAVE TO do one of the options below. According to the American Cancer Society, prostate cancer costs, on average, about $4,300 initially and about $9,100 over five years, for watchful waiting.
https://www.cancer.org/cancer/prostate-cancer/treating/watchful-waiting.html
==Surgery==
"The cost for the procedure ranged from a high of $135,000 to a low of about $10,000. Physician fees varied from $4000 up to about $19,000. The average cost for a physician or for a surgeon was about $8000. It is interesting to note that Medicare allows under $1700 for the procedure and pays 80% of that."
How Much Does a Prostatectomy Cost? - Medscape
www.medscape.com/viewarticle/827814
==Radiation==
"The cost of radiation therapy was estimated from Medicare reimbursements. The median cost for a course of radiation therapy per patient was $8600 (interquartile range [IQR], $7300 to $10300) for breast cancer, $9000 (IQR, $7500 to $11,100) for lung cancer, and $18,000 (IQR, $11,300 to $25,500) for prostate cancer.Aug 13, 2015"
Large Cost Variations for Radiotherapy in Medicare Patients - Medscape
www.medscape.com/viewarticle/849474
==Hormonal Therapy==
"It costs about $17,500 initially and $25,000 total over five years for hormone therapy with radiation." Basically, this treatment is like getting chemical castration. Do I need to say anymore?
http://health.costhelper.com/prostate-cancer-treatment.html
These treatments (surgery, radiation) attempt to kill the prostate and thus kill cancer. And all of them carry a high risk of undesired side effects. I do recall my doctor saying that "I don't need my prostate, so what's the big deal"?
The big deal is about the quality of life. It's about avoiding becoming incontinent, impotent, and wearing diapers!
Granted, if that is what will happen, then fine. But can it be avoided? The answer is YES!
I've done lots of research the past 8 months, not just thinking about what I want, but understanding what is possible. (Of course, what I want is for all of this to go away. The off-and-on pain to go away. The monkey on the back to go away).
But I've also come to understand how the medical system works. The goal is to cure you of your disease and to use a treatment that will accomplish that with the greatest level of confidence. And the cure can come with whatever cost (side-effect) that has to come, because, well, because you get cured! And so really it's the patient who has to find the treatment option and ultimately make the decision. And the patient can only get what they can afford (and what is available)!
And there's the rub. There are plenty of treatment options, but getting access to them, or rather, paying for them can be a challenge (as it is for me).
The treatment I want is called: High Intensity Focused Ultrasound (HIFU). And you ask why? Let me quote from Vituro Health Medical Director Stephen Scionti, M.D., the leading U.S. HIFU expert:
“Really, it becomes decisions about quality of life. HIFU gives a patient the best chance of getting rid of their cancer and at the same time provides them with an unchanged quality of life; what other pathway or treatment can do that?” Scionti asks. “Because we have the ability to properly identify where the tumor is and to avoid critical structures in a precise manner, we have a very low side effect profile which means that men can maintain their quality of life.”
http://viturohealth.com/blog/why-choose-hifu/
And the cost? Well, in the US, about $25,000.
http://www.miamiherald.com/living/health-fitness/article68452672.html
So let's get this done, together, with your help, and get this cancer out of me in a safe, reliable way that will preserve my quality of life.
Thank you for watching, reading, and responding.
JD
Organizer
JD Wilson
Organizer
Seabrook, MD
