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Newby seeking advice

nyfonso
Posts: 10
Joined: Jan 2011

Hello all,

I just posted this on the "blog side" of this network, but not knowing where the audience is, I decided to post here as well. It's long for a discussion/chat board, but I decided that more is better at this point.

In October, I had a routine blood test. PSA came back at 3.09, not alarming, but up from 2.90 just 4 years before. My Dr, on a hunch sent me to Urologist, who ordered a biopsy based on high BPH symptoms (which I had been suffering for years, and previous doctors just gave me Flomax). In November, the biopsy came back positive for PCa: Gleason 3+3=6, PSA 3.09, Stage T1c, bone densitomotry, xray and MRI reveal no spread.

I'm a newby here just going through the decision process. The Urologist, being a surgeon, of course recommends surgery, but surgery seems so medieval considering all the new options. My Oncologist, who works in the same medical group as the surgeon, suggests Brachyhterapy (seed implants). Brachytherapy seems like an option, but concerned about long term implications of permanent metal seeds in my groin, and the potential for their becoming dislodged free agents in the blood system at some point in the future.

Neither of these guys are talking about Proton Therapy, as they do not offer this capability, I imagine. University of Florida has one of only 9 Proton centers in the country in Jacksonville, which I am excited about. but the insurance company won't cover it (I have Wellmark/Bx/Bs)as it is categorized as "medically unnecessary".

Since then, my Oncologist has recommended I take Avodar to help shrink the prostate. Side effects include weakening libido, temp erection issues, and inflammation of breasts with some pain.

Before taking the medication, and as this promises to lower BOH symptoms and possibly lower PSA, I decided to have another PSA test done to get a baseline. Well, turns out now PSA is at 5.02 since last reading 3 mos ago. So now, I'm nervous!!

I started eating better and exercising about 7 months ago, long before I stumbled on the PCa: I work out 2-3x a week at the gym for 90 minutes, I do Yoga/meditation 2-3x week, I do social dancing 1-3x, I have greatly improved food habits, and I've lost 30 lbs and 3 inches on the waist. So you could so I'm coming together and falling apart all at the same time. :0(

Here re my questions to anyone out there listening:

1. Would you suggest a second opinion on the tissue/pathology readings, or is it moot at this point?

2. Anyone out there done Brachytherapy and want to share experience?

3. Anyone experience with Proton Therapy?

4. Any experience fighting insurance company on the validity of Proton Therapy for PCa?

I should mention - and I can only say this under the veil of an anonymous user name - that I am also going through a divorce, my client contract has expired and I am out of work, and I am living alone in a house that once contained a family. I say this not out of pity, but as a point of fact in terms of the psychological and emotional challenges that add fuel to the fire in terms of the PCa.

I could sure use some advice. If anyone knows of a support network on the Gulf Coast of FL, I would appreciate that tip as well.

Thanks in advance,

NYFonso

tarhoosier
Posts: 193
Joined: Aug 2006

Fonso:
First, to address the issue that is with you daily, a good mental health check-up is worthwhile. Sleeping well? Mind focused? There are lots of ways to deal with such things. I recommend a regular check in with your local prostate cancer survivors group. If you are in Florida there is likely one around the corner. Good men and women and good advice which is offered with earnestness but is worthless. The key thing is to tease out their experience and dispose of their prejudices. Just hearing their experiences and mistakes and troubles will put all into perspective. Anecdotes, properly vetted, can be educational. And the Mental support is priceless.
Now to the questions: Second opinion? ALWAYS a good idea as the biopsy specimen contains the most key information leading your doctor.
2. There is permanent seeds which dislodge rarely, and then usually pass even then. Also temporary brachy, which involves a template and needles that circulate a radioactive solution into the tissue and then are withdrawn. This may require multiple treatments over a short perod. This leaves no materials in the body. Andy Grove, CEO of INTEL famously had this in the late 1990's.
As to the Proton issue, the key thing is the skill and expertise of the practitioner/doctor/radiologist and not the cost or wow-factor of the machinery. If the person working the machinery is not the most experienced and talented that you can find, forget it.
I must say that immediate treatment is not the only choice. For the stats you present you can do only surveillance, and perhaps for a long, long time. No side effects, no (additional) cost, no treatment issues or insurance arguments and no regret since treatment may commence at your schedule.
Find your group members and run it by them.

nyfonso
Posts: 10
Joined: Jan 2011

Hi there,

Wow, what a great opener. Your user name implies North Carolina. I live there in RTP area for over five years. Love it so much I bought 7 acres of dirt near High Rock.

Thanks so much for the comments. I agree that support is key. I have to get past the guy thing, submit to the reality and go get help. I believe I'm past surgery, as I am at stage T2b, there is perhaps a 20% chance of pre-metastatic capsular penetration. At this point, the PCa is limited to one lobe.

There we 12 tissue/cores sampled. There is one core at 75% tissue penetration, and three immediately adjacent cores at 2% penetration. Those four cores represent the contiguous 2/3 of that one lobe. The top 1/3 of that very same lobe shows PIN. In the other love, one core immediately adjacent to the 75% mass also shows PIN, while the other 5 cores are benign. My guess is that the PIN cores on the active side will eventually convert.

My sense of urgency is about PSA rise: 2.08 in 2008; 3.09 in Nov 2010, 5.02 Dec 30 2010. I'll note that this last PSA test was at my request, as an Oncologist (who is suggesting Seed implant)suggested Avodart, and I wanted to get a PSA baseline to right before commencing that course. I should note that there was ejaculation activity the day before, something which I overlooked when scheduling the blood work. How much of an impact that had on the rise from 3.09 to 5.02 is not clear, so I'm trying to keep on open mind: having a sense of urgency without panic. :-)

My next steps are to:
- argue with insurance about at least exploring the Proton option
- get that tissue screened by a second pathologist, probably at Moffitt Center in Tampa
- join a support group
- make a decision
- hope for the best

Thanks for your initial thoughts and keep them coming.

NYFonso

Noniu
Posts: 45
Joined: Apr 2010

I do know little about prostate cancer. My father was diagnosed in 2000, at that time he vas 71 years of age and his Urologist recommended Brachytherapy. He had it in 2001 and in 2007 the cancer came back with bone met. I strongly recommend to seek other options to avoid recurrence. Best wishes.

Noniu

nyfonso
Posts: 10
Joined: Jan 2011

Thanks Noniu.

Sorry to hear about your Dad. How far along was he when diagnosed? When reaching his age, the chances are higher of positive met because the PCa has likely been hanging out for a while.

The biggest issue to manage here is recurrence.

Good luck with your father.

NYFonso

Noniu
Posts: 45
Joined: Apr 2010

Sorry I did not respond sooner. He diagnosis is as follows:

Diagnosed as intense acute, subacute and chronic inflammation with urothelial ulceration, interstitial hemorrhage and mildly atypical urothelian hyperplasia; posterior wall

Infiltratin moderately differentiated prostatic adenocarcinoma, Gleason's Score was 3 + 3 , with perineural invasion, involving most pieces, roughly 20% of the tissue; righ. Also present chronic prostatitis.

Fibromuscular hyperplasia of the prostate with moderate chronic inflammation; left

I guess it was an early stage possibly curable?

Thank you for your support and suggestions, and good luck to you. God Bless...

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

NYFonso,

Welcome to the forum although I'm sorry that you have to be here.

I know you're anxious about your rising PSA but from what I've read I would not be surprised if most of that was not attributable to the BPH (or getting lucky the night before the blood draw). Interestingly, PCa often starts growing near the time that prostates begin to enlarge and one of the big failings of the PSA reading as a stand alone indicator is that it isn't specific with regards to root cause. Exercise can also elevate PSA slightly as well as ejaculation before a blood draw, a hard stool, and even OTC medication such as Advil. After ejaculation, the half life of PSA in your bloodstream is about 48 hours so the bump up you describe following sex is well within what might be expected. Your doctor should have advised you that many drugs taken to shrink the prostate also mask PSA readings and your actual PSA should be factored upwards by almost 2:1 while taking drugs like Avodart. If you google Avodart and PSA you will find many discussions and papers about the affect on PSA.

I think tarhoosier gave you some excellent advice. By all means, please get a second opinion on your biopsy. Although changes to a pathology reading are uncommon, it happens frequently enough to be worrisome and it's something I would want to have firmly established before embarking on a treatment based on single pathologist's interpretation.

Like you, I had a biopsy after a referral to a urologist after a PSA rise of about 1.5 ng/ml over an 18 month period. Not knowing anything about PSA or biopsies or PCa at the time, I went along with everything. My biopsy results were 1 of 12 cores positive with 15% involvement. I researched and scheduled consultations in bathytherapy, proton therapy, open and robotic surgery, and various other forms of radiation before making my final decision. An important factor to me was quality of life and like you I quickly became wary of my urologists recommendations for surgery after reading up on potential side effects. I also consulted with Loma Linda Medical Center, the original site for proton therapy, and it eventually became my second choice. Since then I've read many studies that indicate proton therapy is no more effective than IMRT radiation (and way more expensive) which is why some insurance companies balk at shelling out the nearly $100K for treatment. Unless you live close to a site, you will also need to move there for a few months for the treatment sessions and incur those costs out of pocket. Having said that, there are many, many men who swear by proton therapy and have been successfully treated by it. It is a complicated procedure involving Bragg peaks and immobilizing the prostate instead of compensating for its natural movement but all in all I believe it to be one of several effective tretment options for lower risk PCa.

There are other treatments such as IMRT or SBRT (CyberKnife) that you may wish to look at as well, depending on your personal priorities and insurance coverage. HDR brachtherapy, (tarhoosier referred to that as temporary brach) is another method with outstanding results. I would also suggest that you consult with a urologist the specializes in open surgery and one who does robotic so that you can weigh the pros and cons of that approach against the others. You won't get any do-overs on this and the decision you make will affect your daily quality of life for as long as you live. You're betting your life on picking the right treatment for your individual cancer so please make it carefully.

Most specialists tend to downplay the side effects of their preferred treatments unless you really grill them on it. Questions to ask as you do your interviews and research are liklihood and severity of continence, potency, ED, penile shrinking, fatigue, surgical recovery, biological recurrence, and so forth. Surgical impacts occur, obviously, immediately upon treatment. Radiation effects may take longer to occur. Make sure you understand the nuances of any treatment method.

Regarding fighting the insurance companies...good luck with that. They of course are in the business to make money and I believe men should pay closer attention to what they sign up for but at this point, you've pretty much got what you've got. I expect that the proton therapy center will have experience in appealing insurance claims and may be able to guide you in this process.

If, by chance, you are a veteran who served in Vietnam, the government presumes that Agent Orange caused the PCa and will cover the treatment expenses (Proton therapy is one of the treatments Tricare will cover...at least they did in the Southwest region) as well as give you disability. Just another avenue to check out if you qualify.

Best of luck to you as you start your PCa journey. I know that the added stress of going through a divorce while fighting this disease is an onerous load to bear. This forum is a great place to get a lot of advice and support.

Best,

Swingshiftworker
Posts: 706
Joined: Mar 2010

Sorry to hear that you've joined our club but am glad that you seem to have a good grasp of the issues.

Your opinions about the various options was very similar to mine before I chose to undergo CyberKnife treatment, whicn IMHO is the best treatment currently available for men like you (and me) who have early stage and low grade PCa. Regarding your questions:

1) Yes, get a 2nd opinion on the biopsy. Dr. Jonathan Epstein at Johns Hopkins is considered one of the experts on PCa assessment and did my 2nd opinion, which was confirmed.

2) I didn't get Brachytherapy (BT) but I did everything short of getting it done -- "informed consent" orientation session (2 hours) and ultrasound screening and prostate size estimate. I chose not to get BT for the concerns you mentioned: metal seeds in my prostate for life, the possibility of seed migration, radioactivity for at least a year (the 1/2 life of the radioactivity) and also because of concerns over side effects (urinary, bladder, rectal and seminal tissue damage) if the placement of the seeds and the level of radioactivity was not precisely mapped and because of potential problems when getting screened at airports (you have to carry a special ID for life letting TSA know what you've got in your prostate, but you will probably have to go through screening anyway and tell the idiots at the airport what's in your body -- not something I wanted to have to do).

3) I also have no personal experience w/PBT but I read everything I could about it and spoke w/the people at Loma Linda about it as well Was scheduled for a consult there but canceled when I decided to go w/CK. The reasons I chose CK over PBT were because: 1) PBT was not covered by my insurance -- CA Blue Cross/Blue Shield; however, CK was covered -- I have a written policy statement for CA BC/BS that says so and it should also be covered by other BC/BS providers on the same basis; 2) PBT takes 2 months of daily treatments at a limited # of sites in the US which requires moving to and living near an available treatment site for the entire time period -- CK only requires 4-5 treatments either consecutively over a week or every other day over 2 weeks; and 3) PBT does not as precisely target the prostate as CK does and has a greater potential for collateral tissue damage and side effects than CK does, although reports for the 2 forms of treatment are very similar.

4) No need to fight for PBT insurance coverage if you decide to go w/CK and your BC/BS carrier is willing to cover it, which is should based on CA BC/BS's policy statement, which I can provide to you if you need it.

So, my recommendation is for you to investigate the availability of CK as a form of treatment in lieu of PBT. Good luck!!!

nyfonso
Posts: 10
Joined: Jan 2011

Swing,

Thank you for the swell advice. I did not have this item on my options/alternatives list. In fact, there is a treatment options tool here at ACS/CSN and CK does not even show up on the list.

I like what you and Kongo both had to say about the issues with Brachy/seeds and Proton.

This network is exactly what I needed: real men, going through real issues, sharing real experiences, objectively, versus a biased view from a surgeon or Oncologist looking to push their respective treatments.

Thanks for that Dr Epstein's name. I recently called Sloan-Kettering in NY to inquire about their remote 3nd opinion program, and they swore by the Moffitt Center in Tampa, which incidentally shows up on several of those "top ten" lists. So I'll call Epstein and the Moffitt center in Tampa.

I thank you sincerely and will post back after the second opinion.

Regards,

NYFONSO

KEB1
Posts: 1
Joined: Jan 2011

Hi NYfonso, I am a newby also but thought I would share what little I know.
I am 58 and my prostate biopsy came back as positive on 6/29/10 gleason was 6 PSA was 5.7, the "good news" was that I had all of the options available except for watchful waiting which my doctors and I ruled out because of my age.I don't know about you or anyone else but I felt a really strong sense of urgency to get this cancer treated as soon as I could and that most people will give you advice on knee surgery etc. but when you mention cancer the advice isn't given so freely.
After discussions with surgeons,urologists,and oncologists I chose Brachytherapy.I had the procedure on 11/30/10 went in at 6 AM out by noon,127 seeds (palladium 103)I had no pain,very minimal swelling,and found it difficult to limit my activities for the few days recommended. So far I have not experienced any problem with urination,erections etc. I just hope that I can remain side affect free in the future,but so far I am pleased with the results.Not sure about the proton therapy and insurance but my insurance was all good with the brachytherapy.Good luck to you,I think this is a very good place for information,wish I would have discovered it sooner..

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