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Old 09-22-2010, 01:54 PM   #1
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Prostate Cancer Therapy Desision Making

Thank you for giving me the opportunity to share my prostate cancer diagnosis and concerns with you. This all began about a year ago when I had a routine annual PSA test (after missing a year) which resulted in a score of 6.2. My primary care physician sent me to a urologist who did a DRE and gave me an antibiotic to rule out the possibility of an infection as all he felt was a slightly enlarged prostate. Another PSA followed 3 months later and the PSA was slightly lower. I advocated to do watchful waiting and retest in 6 months. The PSA was 6.6 so my urologist recommended a biopsy.

A 12 core biopsy was done. The results were three cores evidenced andenocarcinoma specifically: left lateral base had a grade of 3+4+7, up to .1 cm, involving 7% of the length; left lateral mid had a grade of 4+3+7, up to .2 cm, involving 15% of the length; and, the right lateral mid had a 3+4=7, up to .3 cm, involving 25% of the length. The other 9 cores were benign. My doctor told me I had time to consider options, that the tumor was not palpable and therefore likely not very aggressive and probably still confined to the prostate. Based on this and because I was not experiencing any other side effects, I felt little urgency - it may have been I was in denial. My urologist also recommended that I consult with a radiation oncologist.

I finally got around to meeting with the radiation oncologist last month and he spent 1 Ĺ hours walking me through possible therapies and why intensity modulated radiation therapy (IMRT) could be the best choice. Not to say he wasnít biased, I do think he gave a fair assessment of the choices and why I might choose using their state of the art Varian linear accelerator with on-board imaging, respiratory gating and image fusing. It all sounded promising but prompted me to really research the options. This research led me to this board which I have read with great interest. At this point, I am at a point of information overload and am having serious trouble deciding on the right course of action. As you know, test results are inconclusive and most every study is compromised somehow.

What makes it particularly difficult for me to process is my extenuating circumstances. Not in any particular importance, they are:
1) I have no health insurance and limited resources
2) I am single and potent and would like to be married and potent someday. <smile>
3) I have no one to take care of me should I need care.
4) I am Type II diabetic which require meds plus statins and beta blockers.
5) I am a young 60 years old and live in South Carolina (no aid, no medicare, nothing.)

As pathetic as this all may sound, it is my reality and I need to somehow find a way to deal with it all and hopefully give me a chance to live a full long life. I have nobody that has the interest or knowledge to talk with so I have turned to you all for help. There is much more to say but I have rambled on longer than I should have. I thank you for your patience.

I know you canít give specific advice but maybe for me and others like me you have some clear-headed thinking about what action I could take. I am cautiously optimistic about radiotherapy, Cyberknife makes sense but is it preferable to the IMRT that I spoke of above? I have looked at prostatectomy, ADT, HiFu, proton therapy and maybe do nothing until I am 65 and medicare kicks in. It is a real dilemma trying to balance the best therapy choice with a choice you can financially manage.

Thank you,
Don

 
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Old 09-22-2010, 06:54 PM   #2
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Re: Prostate Cancer Therapy Desision Making

Don,
Have you looked into brachytherapy? It is the least cost and with intermediate risk pc and a small prostate it has similar cure rates to surgery and IMRT with less immediate and long term side affects. You can be back to work the next day and won't need anyone to take care of you.
JohnT

 
Old 09-22-2010, 08:02 PM   #3
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Re: Prostate Cancer Therapy Desision Making

Hi Don,

Welcome to the board, though I join you in regreting that you have cause to have found it. I want to address a strategy that responds most closely to your financial situation, and I'll respond more fully in another post. I expect you will see a number of responses, following mine and John's earlier post.

You wrote in part:


Quote:
... I had a routine annual PSA test (after missing a year) which resulted in a score of 6.2. ... a urologist who did a DRE and gave me an antibiotic to rule out the possibility of an infection as all he felt was a slightly enlarged prostate. Another PSA followed 3 months later and the PSA was slightly lower. I advocated to do watchful waiting and retest in 6 months. The PSA was 6.6 so my urologist recommended a biopsy.

A 12 core biopsy was done. The results were three cores evidenced andenocarcinoma specifically: left lateral base had a grade of 3+4+7, up to .1 cm, involving 7% of the length; left lateral mid had a grade of 4+3+7, up to .2 cm, involving 15% of the length; and, the right lateral mid had a 3+4=7, up to .3 cm, involving 25% of the length. The other 9 cores were benign.
The Gleason score is such a crucial element in decision making that it is wise to have the samples reviewed by an expert, unless an expert did it initially. Often general pathologists do the review, and undergrading or overgrading is not uncommon. However, your report looks thorough, and you may have had a pathologist with special experience and expertise with prostate cancer biopsies.

Quote:
My doctor told me I had time to consider options, that the tumor was not palpable and therefore likely not very aggressive and probably still confined to the prostate.
I'm concerned about that label "not very aggressive" because you have several positive cores of Gleason 7 cancer (intermediate risk), one with grade 4 in the dominant (first) position. On the other hand, a standard 12 core biopsy appears to have been done, which is a good sample, and only 3 were positive, the amount per core was not great, and the context of a reasonably low PSA suggests a fairly small volume of cancer. (I'm a layman survivor with no enrolled medical education, but with lots of repetition, I've caught on.)

Quote:
Based on this and because I was not experiencing any other side effects
That's highly typical for prostate cancer diagnosed in the US these days. Due to screening with PSAs and DREs, we're catching cancer quite early, long before symptoms of the prostate cancer are noticeable for most of us.


Quote:
...What makes it particularly difficult for me to process is my extenuating circumstances. Not in any particular importance, they are:
1) I have no health insurance and limited resources
The new health care law may offer you some help, but, for adults, some of those provisions do not kick in for a few more years.

An strategy you might want to consider is to use lifestyle tactics and mild drugs to see if you can hold the cancer at bay for a few years until your insurance coverage improves. Much of this is not expensive, though some of it involves supplements that are moderately costly. Vitamin D3 from a quality source is still cheap and appears to make a difference. Lycopene, especially from cooked or processed tomatoes, in various forms (V8, to tomato juice, to pasta sauce, to catsup, to cooked tomatoes, etc.) looks like it may help. Fish oil (from fish or fish oil capsules) appears to help and is not expensive. Quality pomegranate juice (but there's sugar) or extract (no sugar) appears to be quite helpful but is moderately costly. There are a number of other such nutrition-oriented tactics. Aerobic and strength exercise also appear important, as does stress reduction.

Mild drugs include Avodart (brand name and moderately expensive), finasteride (generic and considerably cheaper than the sister drug Avodart), and a statin are likely to help without adding much expense, especially as you are already on a statin.

Such a lifestyle strategy would be somewhat risky in view of the Gleason 7 cancer. However, with monitoring, you and your health team would be able to see if your case was behaving like a lamb or a wolf.


Quote:
2) I am single and potent and would like to be married and potent someday. <smile>
The only two approaches that preserve potency with a high degree of success are active surveillance (questionable for Gleason 7 cases in a younger man of 60) and one-time or intermittent hormonal blockade therapy. For the latter, interest in sex usually goes way down, and potency is often somewhat affected while on therapy for a year or so, with libido and potency returning after a few months during vacation periods from the heavier duty drugs. Hormonal blockade could be a good approach, but, while it offers long-term cancer control for most of us, it is rarely curative.

Other approaches, such as surgery, radiation, and cryo surgery yield better results if done by experts. Potency side effects can often be at least partially resolved.


Quote:
3) I have no one to take care of me should I need care.
As Johnt1 noted, radiation or cryo are quick and don't require much assistance for the patient, in contrast to surgery. Robotic surgery, done by a well-experienced doctor, seems to have some advantages over traditional survey in recovery time. Research studies are back and forth on this, but men coming to my education and support group seem to do very well with robotic surgery (with one exception in our group).

Quote:
4) I am Type II diabetic which require meds plus statins and beta blockers.
Hormonal therapy sometimes increases insulin issues. There is accumulating research that statins, while not lowering the incidence of prostate cancer, do lower the risk of well-advanced prostate cancer and death from the disease.

Quote:
5) I am a young 60 years old and live in South Carolina (no aid, no medicare, nothing.)
...Thank you,
Don
There are some companies and organizations that offer some assistance to patients. For instance, some of the drug companies will help patients by discounting their drugs steeply when the patients have limited resources.

Also, the new healthcare law will likely help people in your circumstances when certain features kick in. Some features kicked in today, but it may be several years before you would be able to benefit.

Good luck with this, and take care,

Jim

 
Old 09-23-2010, 01:39 AM   #4
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Re: Prostate Cancer Therapy Desision Making

CyberKnife or Novalis Tx (or any hypofractionated SBRT system) may cost less because it's only 4 or 5 visits, as opposed to 40 or more for IMRT. University medical centers may be less expensive. Hospitals may quote higher prices to the uninsured because they can. They may also be willing to negotiate a lower price -- they have a lot of flexibility.

Here's a link with some of the average longterm costs of various treatments: http://www.ncbi.nlm.nih.gov/pubmed/20734396

Another option is medical tourism -- getting treatment in, say, Thailand may be a lot cheaper than the US, even after travel costs. The skill of the doctor is very important and people say that many of those foreign hospitals have very skilled doctors because they treat so many. It may be challenging to get reliable recommendations, however.

You might also try calling 2-1-1 and asking the United Way what support they might be able to offer.

- Allen

 
Old 09-23-2010, 08:52 AM   #5
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Re: Prostate Cancer Therapy Desision Making

thank you Allen for the info about Cyberknife. I am inclined to be encouraged that it may be the therapy of choice but cost is an issue (so far) as the one quote I received was $35,000. I have tried to contact other centers but so far without any response. Maybe, my mistake is that I tell them up front that I am uninsured and a self-pay.

The first Cyberknife was used in 1990 but not on a prostate cancer tumor. So there should be 5, 10 and 20 year survival rates and information on side effects. Are other cancer tumors not at all indicative of what could possibly be expected with a prostate cancer tumor?

Getting treatment in another country is certainly a possibility but as you rightly point out getting post therapy data is near impossible and therefore how do you assess a particular facility. Much of the same can be said for most facilities and doctors in the U.S. I wonder why keeping data and publishing results in the public domain is not routine? It seems to me that it would be in everyone's best interest.

Best wishes,
Don

 
Old 09-23-2010, 10:43 AM   #6
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Re: Prostate Cancer Therapy Desision Making

Hi Jim,
Thank you for the reply - I think we are on the same page which is gratifying. My study and understanding of Gleason scores and pathology reports has led me to wonder about its efficacy given the inexactitude of the pathologist's examination. I have considered a second pathologist's biopsy review, specifically with a pathologist that "specializes" in looking at prostate cancer cells. I have read the information pertinent to this discussion in "A Primer on Prostate Cancer" by Strum/Pogliano. I quote "anywhere from 51% to 95% of the specimen is (the primary score) and anywhere from 5% to 49% of the specimen has a secondary pattern." So, theoretically, the primary grade could represent 51% and the secondary could grade 49%. Scientifically, I would think 2% is insignificant given the subjectivity of the grading. I wonder what happens if the primary grade (the most aggressive cells) exist in smaller quantities (less than 51%) as seen under the microscope while the second grade is even less, for example 40% and 5%? I think I don't clearly understand the grading process and certainly don't feel comfortable about the level of subjectivity. I mention this relative to my small percentage of cancer per core. Do we have any data to support that one pathologist is more accurate than another? Do we have any data to support that Bostwick for example gets the Gleason score more correct than a non-specialist based on post operation pathology reports?

Correct me if I am wrong, but the Gleason score and or biopsy report does little to help determine the volume of cancer in the prostate. Understanding the aggressiveness of the cancer cells is one thing but I would think the volume would also be important particularly the volume of aggressive cancer cells. Then of course what is the cancer volume relative to the size of the prostate? Maybe these are unknowns today in prostate cancer testing? This part is critical and subjective and for me confusing.
Best Wishes,
Don

 
Old 09-23-2010, 11:56 AM   #7
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Re: Prostate Cancer Therapy Desision Making

There are only up to 3 years of data on CyberKnife for prostate cancer. The data on its use for other cancers won't help you much because the organs affected by the radiation are so different and because prostate cancer seems to be unique in how it is killed by radiation. < edited >
I agree with you that there is so much information to digest, but also huge gaps in the information we'd ideally want to make the best decision. When I started exploring and accumulating data, I organized it all within 7 folders:
  1. Radiation
  2. Surgery
  3. Hormone
  4. HIFU/Cryo
  5. Chemo/Gene Therapies
  6. Medicines/Supplements
  7. ED
If something covered more than one subject, I put copies in each.

Then, I did the following subfolders:
Radiation:
  • IMRT/IGRT
  • hypofractionated SBRT (CyberKnife)
  • proton
  • HDR Brachy
  • LDR Brachy
Surgery:
  • DaVinci
  • Open
Medicines/Supplements:
  • Finasteride
  • Statins
  • COX-2 inhibitors
  • Soy Isoflavones
  • Quercetin
  • Curcumin
  • etc.
And so on. I found that organizing all this on my computer helped organize my mind, and wrap my head around all that information. It really relieved a lot of the anxiety for me. So did communicating with others in forums like this. Hope that is useful to you.

Last edited by hb-mod; 09-23-2010 at 02:07 PM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks!

 
Old 09-23-2010, 01:55 PM   #8
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Re: Prostate Cancer Therapy Desision Making

You are correct that Gleason Grade is a good indicator of the aggressiveness of the cancer. I asked my Urologist for a full copy of the report. My biopsy report showed for each core, how many millimeters of each Gleason grade vs total core centimeters, and calculated a % cancer in each. It also showed a bit of PIN (a pre-cancerous lesion). I totaled up the mm of cancer, divided by the cm of core samples to come up with an estimate of cancer volume. In my case, 11%, all Grade 3+3. This is a very rough estimate. There is no way of knowing what is between the cores or in areas not sampled. One can only know that for certain if you have an RP. Usually, the RP shows that the actual Grade is higher and there is more tumor volume.

Not all biopsy reports show all this data, and some show other data not included in mine. Mine also showed photos taken through the microscope that they used to calculate the Gleason Grade.

 
Old 09-23-2010, 09:37 PM   #9
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Re: Prostate Cancer Therapy Desision Making

Hi Don,
< edited >

http://www.ncbi.nlm.nih.gov/pubmed/20815417
There, you can find a link to the free full text article that reviews all the published data on CyberKnife.

- Allen

Last edited by hb-mod; 09-23-2010 at 11:31 PM. Reason: Please do not suggest Internet searches. Thanks!

 
Old 09-29-2010, 09:50 PM   #10
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Re: Prostate Cancer Therapy Desision Making

A prostate cancer treatment decision tool can be found at the following link. I think it is the kind of decision-making flowchart you are looking for.
http://www.healthboards.com/boards/showthread.php?p=4336426#post4336426

 
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