On AS, but wavering

HI all,
I got a psa draw last week, it came back 2.7 (no change). Statistically speaking I only have one reason to be treated, my age. But I have read some real horror stories lately that give me pause. For a little back ground, I am a professional medical coder, I read surgery, radiology or neuroradiology reports every day which often lead to case summaries. I can assure you, prostate cancer can be a real beast (some of you know this all too well), even the low risk/low gleason cases.

I know that my numbers suggest low risk or even indolent disease, but my my refusal to treat is against my urodoc's advise. He is "ok" with it but AS is not what was recommended because of my age. And Clinical G6 is not necessarily pathological G6. That is the real risk that all men on AS are taking.

I must admit, AS is psychologically much more difficult than I thought it would be. Also, right now, I have the means to meet the demands surgery. I have a job, insurance coverage and family support etc. Who knows what next year will bring.

I guess I don't really have a question, just needed to vent, and process among brethren. Thanks for listening.

be well...

Thanks Bud,
We went to Yellowstone NP last month, it was wonderful, and PC was completely ignored. Sounds like your cruise was equally therapeutic.

I can relate 100%. Coincidentally, I just got back from an appointment with my urologist. He's supportive of me taking a little more time to come to a treatment decision but he is in no way supportive of watchful waiting at my age. He says I will eventually end up being treated, it's just a matter of how advanced the disease is at the time of treatment. My heart says "watchful waiting" but my brain is telling me to listen to the experts. I'm just having trouble coming to terms with all this.

Dan,
Have you considered getting a color doppler ultrasound to act as a basis for future monitoring?
The anxiety does not go away after you are treated as all of us on this board know well; you still have to get regular psa tests and your are always wondering about a reoccurrrance. The only difference is that you are not dealing with the side effects that many who are treated are experiencing.
As long as your psa doubling time does not go under 3 years you are pretty safe with just monitoring.
JT

I was on AS for 8 months and found best resources were "the Invasion of Prostate Snatchers" by Dr. Scholtz and Dr. Snuffy Myers www.prostateforum.com

Also Dr. Bahn In Ventura, calif is a well know Colour Doppler expert and provided extra info my hospital tests did not

Dr. Myers feels younger patients should be more wary of surgery than older patients, because you have more to lose if you are unlucky

In my opinion Prostate Oncologists are the best experts when it comes to Prostate cancer - as they only work with prostates unlike the urologists

I did not like the all or nothing approach found in Norh America and opted for Hyperthermia in Germany ($9,000 ) plus 6 months hormone blockade  which has been proven very effective with long term no side effects and this  still keeps all my options open

Age 60 PSA 4.9

Bx feb 2011 Glaeson 7 (3+4)

started Resveratol, Vit D3, Curcumin, Lycopene

Bx July 2011 Gleason 6 (3+3) but at apex  -hard to get at with sx

Oct 3-7 2011 Hyperthermia in germany plus avodart, casodex and Lupron

will recheck PSA every 2 months

 

I man in my support group did AS for 13 years as his PSA went slowly to 10. He then went to SRT. Did he wait too long? Time will tell. He did have those 13 years without SE's.

Casey59 said...
Dan,

Well, treating the "anxiety rather than the cancer" isn't uncommon.

And having a doctor urge aggressive treatment for a very low risk PC patient isn't uncommon either, although to some of us that have been around a while such a suggestion has disturbing undertones of economic self-interest.

If I remember correctly, you had 43 biopsy cores taken, and one core found to have the lowest possible cell differentiation (G6) to still be called "cancer" (at least by today's standards, although it has been proposed to change the name and no longer even call this cancer because it causes over-reaction and over-treatment). The one positive core out of 43 was 5% cancerous, which is the smallest measurable amount.

Have you gotten any second opinions? There are doctors out there who would support treating your case "chronically." That is, they might say "go make smart decisions on lifestyle tactics within your control (diet and exercise), and let's just see what (if anything) this PC does." [I previously provided you the link to a well-known study at UCSF showing how exercise, diet and stress reduction caused average reductions after a year in PSA of men with biopsy-proven PC compared to their counterparts whose PSA progressed.] Even at your relatively young age, close to half of men who were autopsied after accidental deaths were found to have more PC than has been found in you. The fact is that everyone who gets prostate cancer will die; but not usually from prostate cancer.

Did you read the article I previously provided you titled, "I Have Prostate Cancer, Now What?"

Casey, I appreciate your detailed reply. One of the cases I have read recently was a man treated with seeds 13 years ago. His initial Gleason was a 4 (sic). So, despite the literature that suggests G6 should not be called cancer, I will still consider it malignant. Not only did this G4 recur, it has metastasized to the mans urethra and bladder, and now his liver. Another G7 case recurred after seeds and IMRT 7 years prior, with mets to the bladder and bones. That G7 is now a G10! and recurred without a rise in PSA! The only reason it was found was that he couldn't urinate and had to be catheterized in the ER. That scares the crap out of me.

Yes, I did get a second opinion, and a third. The surgeons all suggested surgery and the rad onc suggested IMRT (he was not fond of bracytherapy) go figure. None of them recommended AS due to my being 46 at the time. My current plan involves diet changes (recommended by a nutrition expert). I think that has kept my PSA rather low for a confirmed case.

As for the article you sent, I am sure I did read it, I take such advise seriously, but I do not remember the specifics. I have read so much on the subject I got a little burned out for awhile.

Thanks for caring, I really do appreciate the advise. Be Well...

AS with the right criteria and with the right mind set of the patient for the right reasons makes great sense. I only wished I had the numbers at the time of my dx. to have had that as the choice. But if AS is being used for the wrong reasons, to avoid treatment for fear of the treatment, or the possibility of having bad side effects as the result of the treatment, is the wrong reason to be on AS in my opinion. Dan, I am not saying you are in either category, not making any kind of judgment here, as only you know your situation.

I have said this dozens of times here on HW, to remind people that the biopsy results are a good estimate at best. There is always the gamble that a person's siutation is worse than the biopsy indicates, i.e., more cancer is there than found on the biopsy, and its not uncommon to have the Gleason upgraded after surgery, less common to see it go down. So the gamble becomes, is the cancer found in biopsy really low grade, and low in percentage, or is it higher. And the gamble further goes to the point of containment of the cancer, while it's easier to eradicate. AS would never completely answer that factor, it's an assumed risk on the part of the patient.

I think you should continue doing what you are doing, and thinking through the whole process. You and you alone ultimately will make the choice to treat now, treat later, or not treat at all. If you have a pretty good consensus of experts, i.e. your medical team advising treatment, I wouldn't be quick to dismiss their advice. But again, its comes down to your choice.

david in sc

Regarding the percentage of people who abandon AS, that seems reasonable, even if they do so for psycological reasons. AS is effectively only a method of delaying treatment till the optimum moment for treatment arrives if it is needed.
As David (Purgatory) mentions you do need to feel comfortable that the biopsy has detceced what is actually going on inside. I expect someone will know the exact data, but I thought I'd seen one study that said about 30% of guys get a higher Gleason after surgery than they had from the biopsy. I know I was one of those unlucky ones, and would not have liked to delay my treatment.

Alf

Hi again, Dan, I hope you are doing well.   A follow-up discussion to my earlier post…   Active surveillance has four key components: 1.     Identification of appropriate patients — from all the info you provided here, you appear to fall very squarely into the “appropriate” category.   Youth, by the way, is not a contraindication for AS, but calls for more stringent requirements…you still appear very well qualified. 2.     Patient education and reassurance — see discussion below 3.     Close monitoring over time, with serial psa measurements, periodic biopsy, and (possibly) imaging studies — remain committed to following up with scheduled appointment in order to treat your PC as a “chronic” illness while on AS 4.     Appropriate therapy for patients whose disease is reclassified as higher risk — previously discussed (link previously provided) in your 8/2/11 thread; delayed surgery after AS does not appear to compromise curability   The rest of this posting is in regard to component #2, Patient education and reassurance . Your comment in the first post of this thread was that your current urologist is merely “ok” with your approach to AS, which led me to ask if you had sought second opinions.   What I said there was, “There are doctors out there who would support treating your case ‘chronically.’” Despite attempts at applying science to the “latent cancer quandary,” an individual’s decision to have an aggressive treatment for PC is often made on the basis of fear.   Cancer phobia is common, even among well-educated people, and is often the primary motivating factor in a man’s decision to have treatment.   The more mature AS programs, therefore, include programs of psychological support to provide patient education and reassurance while treating PC “chronically.” When examined broadly, studies comparing anxiety and distress between treated and untreated men have shown no difference.   However, when the details are more closely examined, men on protocol-based AS or in large collaborations (with programs & materials to continuously educate and reassure patients) have reported to be much more comfortable with an AS approach, as are their physicians.   AS protocol is a specialty-within-a-specialty-within-a-specialty.   If you just happened to stumble upon a urologist well-versed in AS protocol, then good for you for beating those odds. But if your current urologist doesn’t have a strong background here, then you should be aware that your likelihood of triggering an intervention solely out of fear is notably higher.   I’m not suggesting that you should “fire” your current urologist—not at all—but you may want to look for a specialist to maximize your probability of AS success…one who will also support the psychological side of AS. There is another important aspect of patient education.   All of the major AS protocols include a focus on diet/nutrition and exercise (lifestyle choices) which serve to optimize individual patient success...an integrative approach.   Studies of early-stage PC demonstrate that lifestyle choices can alter gene expressions; specifically, down-regulating cancer promoter genes, up-regulating cancer suppressor genes.  Such findings indicate that the course of prostate cancer can be modified at the very level of our genes by the power of food and exercise as medicine. [Here’s an easy-to-read ARTICLE , or here’s the study’s REPORT . ]   A urologist who is unsupportive (or reluctantly supportive) of your choice to pursue AS, or not very knowledgeable in AS protocol, is not likely to take these extra steps which optimizes individual patient success.   In addition to this, please do consider your own willingness to embrace the concept your own wellness.   As I said in my response to your 8/2/11 email, “… if you aren’t willing to make the lifestyle modifications necessary to be a successful candidate for AS, then don’t inappropriately get your hopes up for staying on that course. ”  For many people, a diagnosis of PC is a wake-up call to improve their lifestyle choices.  I'll close by tying this comment to a definition of "thrivership" as published in a Prostate Cancer Foundation document titled “ Nutrition, Exercise and Prostate Cancer .”   What is thrivership? The Merriam-Webster dictionary defines thriver as one who progresses toward a goal despite circumstances, and flourishes.  The diagnosis of prostate cancer can lead you in one of two directions. Some will react to this diagnosis with a sense of resignation and fatalism.   This view can lead to helplessness — waiting for the other shoe of cancer recurrence or progression to drop.  On the other hand, thrivership puts you in the driver’s seat — making you as vital to your care and treatment as any doctor or nurse. You may have had prostate cancer, but now you are in charge of your life, adopting new healthy habits and enjoying each day to its fullest.  As a prostate cancer thriver, you can use the latest knowledge about nutrition and exercise to improve your overall health and quality of life.  Your diagnosis of prostate cancer can be the beginning of a healthier lifestyle.   Just offering some facts to think about .  You said that you are currently "on" AS, and I hope that my discussion on these points assists in some small way in your ability to successfully and confidently continue.  Patient education and reassurance is one of the pillars of AS success, and perhaps one of the most frequently overlooked pillars.  I wish you the very best…     edit:  typo Post Edited (Casey59) : 10/19/2011 2:14:02 PM (GMT-6)

Dan,

Always remember, we are all here for you, and support your path, and want to encourage you to do what you feel is best for you.
So many of us, would love to have been in the situation to have AS as a viable option, sincerely. I am always pleased to see the men that can go down that path. No part of it would seem easy to me, it would take steady nerves and a good mindset to keep going with AS.

The beauty of what you are doing, is if your numbers or circumstances change in the future, and I certainly hope they don't in a negative way, you can still choose a primary treatment method best suited for your case.

I think you are doing fine.

David in SC