My Prostate Cancer Journey...

One reason I chose HoLEP was that surgery can still be performed. The bad is I am not getting younger and healing takes longer.

My last biopsy was read by Jonathan Epstein, M.D., the Rose-Lee and Keith Reinhard Professor of Urologic Pathology. Epstein is the renowned pathologist who came up with the Grade Group system of prostate cancer grading, a system that has been adopted worldwide. 3+3 Grade 1
 
I couldn't be more pleased with the care I received at Duke, and I am grateful, so it saddens me to rain on my own parade. But I thought the charges I'd seen thru 1/23 might be the bulk of it, but new claims have now hit and they are staggering, unreasonably high IMO. It's no wonder health care is so expensive in the US. What do people without access to health care (insurance) do?

I have never seen Medicare approve or pay so much for any health care procedure DW or I've received before, and I've been on Medicare for over 5 years. Not sure what to make of that.

The totals don't match exactly because they include small office visit charges.

Provider ClaimMedicare PaidPlan G Paid
MRI$4,082$3,630$111
Fusion Biopsy$13,702$11,825$474
CT Bone Scan$2,749$2,522$99
Diagnosis Tot$20,939$18,055$701
Simulation$36,746$33,973$1,086
Radiation Plan$23,077$19,802$710
Radiation Delivery$80,280$78,585$1,695
Treatment Tot$142,240$133,185$3,644
Totals$163,179$151,240$4,344
Cancer treatment is expensive. I believe for DMIL back in 2008 Medicare alone ended up paying $300K in total. Way more today. There were two major surgeries, but a lot of it was extremely expensive chemotherapy drugs.
 
Since my prostate is too small for TULSA you are probably in the same boat.

Partial ablation is usually done when people are concerned about keeping sexual function. It is newer, similar to breast cancer lumpectomy.

As prostate cancer institute says, it is not so much about picking a treatment type as it is about picking someone who is excellent doing the treatment you get.

A surgeon will probably prefer RP and an oncologist radiation because that is what they know best. Interestingly my team had a surgeon to place the device and two radiation oncologists to plan the ablation and supervise the machine.

Your doctor will probably say that TULSA is too new. Yale is running the clinical trials so they were ok with doing it. However, they did not push me into it. Rather they agreed to it after I asked for it and the TULSA team said it was ok even though I was not eligible for the clinical trial because my lesion was too close to the urethra.

Please report back what your doctor says.
So I checked with my oncologist. He feels that while promising, TULSA is very new with limited data. Mass Gen has only been using it for about a year on a limited basis. He did say that it is a follow-up option in the event that radiation does not fully do the job.
 
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I post this only if it might be of interest to others on a similar path. Unless there are questions, I expect this to be my final post here.

It’s been a long slog but I had my last radiation session this morning. I am glad I chose SBRT (5 sessions at about 4X the dosage/treatment) vs IMRT/IGRT (25-35 sessions at lower dosage. Much better logistics since we live 140 miles (280 RT) from the site. Turns out SBRT is about half the total accumulated dosage vs IMRT.

I chose the Duke (University) Cancer Institute because it appears to be the best in the state for prostate cancer and among the top 30 in the US. I believe I received world-class care which should lead to the best outcomes. I could not be more impressed with the quality of care I received from every single person I encountered - my brilliant Radiation Oncologist, my wonderful Radiation Therapists and the dozen or so others who completed my Simulation and other appointments.

So far the amount billed is nearly $83K, and I probably haven’t see them all yet. Surprisingly Medicare has approved almost the full amount (way more than most procedures IME), and paid most of it. My Supplemental has paid all the rest so far.

The short term side effects they told me to expect have been: Fatigue - none that I’ve noticed. Bowels - minimal. Urinary - most noticeable but manageable. They did put me on Flomax as a precaution, I have no way of knowing if it’s helped or not since I don’t know what it would have been like without.

They tell me to be prepared for these side effects to continue to worsen over the next two weeks due to inflammation, but then a slow steady improvement and I should be fully back to normal in May.

I am very glad they inserted the SpaceOAR. But it’s an odd feeling, you’re aware of it 24/7. Feels like you need to “go” BM 24/7, so it’s a little harder to tell when you actually need to go. They tell me it will disintegrate and be absorbed in 3-6 months. So a couple months of the odd sensation.

PSA and first follow up in May, 3 months post radiation.

I am VERY optimistic. Even if I’m not 100% cured, I expect the “setback” to the PCa I had will be enough to bridge until something else kills me in 10-20 years.

An aside: Before my PCa diagnosis my prostate was enlarged slightly, 45 ccs, and I was experiencing a weaker urine stream (temporarily more acute now after radiation). Thought it was just BPH, not PCa. I think I read somewhere that now after radiation when the dead PCa cells have been absorbed and eliminated some months from now, my prostate may be reduced in size, which may improve my urine stream - that would be a very nice side effect.

Thanks for your support.
Midpack,happy that you have the best outcome.
I wonder the treatment you chose was unique to your condition, or it was based on your reference of having quality of life even if it could be shorter life expectancy? Your research and deliberate choice could help others in similar situations.
 
Midpack,happy that you have the best outcome.
I wonder the treatment you chose was unique to your condition, or it was based on your reference of having quality of life even if it could be shorter life expectancy? Your research and deliberate choice could help others in similar situations.
I won’t have my first indication of outcome until May.

As for your second question, I’d refer you to post #50 and #30. I can elaborate from there if needed.
 
Probably TMI, but I had my 3 month check yesterday, first indication of how effective the radiation was. My PSA dropped from 4.88 before to 1.53 mg/nL now so far. My PSA hasn’t been that low in 20 years! My nadir will occur about 2 years out, and then I’m “clear” unless my PSA increases 2 mg/nL from my nadir. It’s checked every 6 months along with a telehealth interview for 5 years, then annually thereafter.

My long term side effects are minimal if any, I couldn’t be more relieved. I’m taking Flomax but I’m told I may not need that one day. Don’t need it today, but it’s helpful so why not.

Hopefully I become one of the many ‘men who die with PCa, not from it.’ Fingers crossed.
 
Probably TMI, but I had my 3 month check yesterday, first indication of how effective the radiation was. My PSA dropped from 4.88 before to 1.53 mg/nL now so far. My PSA hasn’t been that low in 20 years! My nadir will occur about 2 years out, and then I’m “clear” unless my PSA increases 2 mg/nL from my nadir. It’s checked every 6 months along with a telehealth interview for 5 years, then annually thereafter.

My long term side effects are minimal if any, I couldn’t be more relieved. I’m taking Flomax but I’m told I may not need that one day. Don’t need it today, but it’s helpful so why not.

Hopefully I become one of the many ‘men who die with PCa, not from it.’ Fingers crossed.
Great to hear! (y) :cool:
 
Agreed! Definitely not TMI. Many of us here will face similar decisions in the future. Hoping for continuing great results!
 
Congrats.
I have been up and down with the PSA the last 2 years. High of 7 and low of 4. One MRI so far was clean.
 
Probably TMI, but I had my 3 month check yesterday, first indication of how effective the radiation was. My PSA dropped from 4.88 before to 1.53 mg/nL now so far. My PSA hasn’t been that low in 20 years! My nadir will occur about 2 years out, and then I’m “clear” unless my PSA increases 2 mg/nL from my nadir. It’s checked every 6 months along with a telehealth interview for 5 years, then annually thereafter.

My long term side effects are minimal if any, I couldn’t be more relieved. I’m taking Flomax but I’m told I may not need that one day. Don’t need it today, but it’s helpful so why not.

Hopefully I become one of the many ‘men who die with PCa, not from it.’ Fingers crossed.
Great news! All the efforts of digging into the details of the treatment paid off.
 
I came across a good podcast doctor, Dr, William Li. His field of study is angiogenesis, the creation of blood vessels. Angiogenesis out of control is how cancer tumors feed.

He made a video on foods that you can eat that will help control angiogenesis in prostate cancer. He points out that we all are constantly making micro-tumors but they usually do not hijack blood vessels, stay smaller than 3mm and get cleaned up by the immune system. He claims that eating these foods provides compounds that help to keep angiogenesis working where it should and not working where it should not.

He says that eating these foods helps to prevent prostate cancer and helps to slow down progression in existing cancers.

I have seen some doctors claiming that even with treatment we still have micro-cancer or small numbers of cells and some even claim that all prostate patients get micro-metastasis (some claim the biopsies cause this; others that just being connected to the blood supply causes it) that is normally addressed by the immune system before it reaches clinical level.

The foods include lycopene i.e. cooked tomato 1/2 cup 2x-3x/week. ALA and Omega 3 tree nuts. Ferukic acid egg plant, spinach and beets. Cafalic acid coffee, spinach, beets, egg plant. O3 sea food.

The link looks like it won;t work but click on the "watch on you tube".

 
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