Recently Diagnosed Prostate Cancer

My greetings to all here.

I am 62 years old and was diagnosed a few weeks a go. I'm studying treatment options now. I live in Houston.

My first elevated PSA was in December, 2010 with my former PCP, at 6+. I suspected prostatitis. I've had it twice before, in 1996 and 2007. I took Lycopene and Saw Palmetto and got another PSA in January in a visit to a new PCP. My PSA more than doubled to 13+, so my new PCP referred me for a Cat Scan and to a urologist.

The urologist suspected prostatitis, as digital exam yielded no irregularities like nodularity, hardness, or enlargement, plus past history of prostatitis. He prescribed antibiotics and an anti-inflammatory. He told me to save my money on the Lycopene and Saw Palmetto. (i.e. they're useless.) I returned to his office in six weeks after finishing full course of all meds. My PSA crept up to 14+. Wrong direction. He did a biopsy. I scored 1 (out of 12) core samples positive at 3,4. Gleeson Score of 7. He ordered a bone scan.

Cat scan and bone scan both were normal. Next on the docket is a colonoscopy, this Monday (5/16.)

My urologist touted doing surgery, which he would do with the DaVinci robot. Recuperation period of two-to-four weeks. Definitely two weeks out of work, maybe more. (I'm a psychologist in private practice.) Pads or diapers for a while, as he removes the involuntary sphincter. 30% chance of permanent impotence, but he was fairly positive that I'd be back in the saddle, maybe in 12 to 24 months, maybe with Viagra/Cialis/Levitra/Muse help. Surgery is best, says the surgeon. But he did refer me to a radiation specialist to discuss that option.

The radiation doctor uses IGRT and IMRT. His method is best, says the radiation doctor. I likely wouldn't have to miss any work. But I'll need hormone therapy due to the high and rapid doubling of my PSA score, a sign of aggressiveness. That likely will cause me to be impotent for a year, 30% chance it would be permanent. Great targeting accuracy, never has had a rectal fistula.

Both of these doctors were down on proton therapy mainly due to elevated risk (7% to 12%) of rectal fistula. But proton therapy doctor said these numbers aren't reflective of his practice. Like the radiation doctor, he's never had a rectal fistula, says they're very rare. But they do inflate a balloon inside the rectum and pull, an invasiveness that can be unpleasant and isn't done in IGRT and IMRT. He concurs with the need for hormone therapy, which all three doctors say wouldn't be done with surgery unless the cancer recurred.

I'm a candidate for proton therapy if I don't have colon cancer. They'll also give me an MRI to rule out very microscopic cancer cells outside the prostate.

I will value any and all input regarding the experiences of others.

Kind regards,

Pushisti

Dear Pushisti:

Welcome to HW.  Sorry you have to be here but I think you will find a lot of support and information from the members here.

With the suggestions being made that you have HT, I would suggest that you consult a medical oncologist who specializes in prostate cancer.  While I chose radiation, I would not have been comfortable adding HT without the advice of a prostate oncologist.

Re proton therapy, I seriously considered that as one of my options...even spending some time consulting the with folks in the Jacksonville proton center.  The problem I had with that choice was finding statistical evidence of its' effectiveness.  I could find lots of data on the cure rates for surgical and radiation options, but all of the proton "evidence" seemed to be anecdotal.  Perhaps there is more data available now, but I would strongly suggest that you seek such evidence and compare it with the surgical and radiation evidence before you make a decision.

Best of luck,

Tudpock (Jim)

Pushisti,

Welcome to HW.

We will all suggest that you start reading up - the classic books are:

Dr. Walsh's Guide to Surviving Prostate Cancer (2nd Ed.)

Dr. Peter Scardino's Prostate Book (2nd Ed).

Both run $17 - $20 USD new, but you may also find them at your local library. Note that the Second Editions are the latest on both - the older ones are not up to date. There are a lot of others.

Although is stirred a bit of controversy as perhaps a justification to not do screening, there is a downloadable book (really is free - look for the link at the bottom of the page in the text) as a pdf file from a university in Australia. I found it worth reading, and wished I had had something of the like when I was making a choice:

http://purl.library.usyd.edu.au/sup/9781920899684

Here is a link to our common questions thread:

https://www.healingwell.com/community/default.aspx?f=35&m=1717641

I chose DaVinci surgery, after having been turned away for proton, and having much less than ideal success probabilities quoted for IGRT as initial treatment. I was also told by clinics doing seeds that I was too far advanced.

I have talked to folks who went to MD Anderson (Houston), and were happy with their treatment (one surgery, a couple did proton). There is also somewhere here on the board, a link to a diary of a man who did proton and lived on the hospital campus in an apartment. Can't find it off hand, but I think the biggest issue he had was the length of time away from home (he was from outside the area).

At your level and age, I expect that all options are open to you, but as you have seen, your doctors may not be any more help in making a decision than mine were. Be informed.

In my opinion, proton has some big negatives and few positive when used for treating PC..The balloon up the rectum every day for 40 days...That's going to get old FAST..If you have to travel any distance to be treated, perhaps live out of town for 2 months, that's a major expense. And since proton treatment is VERY expensive, you can expect resistance from your insurance company..That part of it goes on backstage..For what?? They can't show it works any better than IGRT.

The latest beam radiation equipment, the Varian Novalis RapidArc Linac for example can direct the radiation dose with far greater precision than the older equipment and is more generally available without travel..

Surgery, when performed by an expert, still has important advantages. It REMOVES the cancer. The entire gland becomes available for a complete biopsy, eliminating the uncertainty of the stage and grade and whether it has spread. Radiation treatment is still possible if it's demonstrated it might be effective should the surgery fail..

Again, in my opinion, the BEST radiation treatment is the combination of seeds and beam radiation, which can safely deliver the highest radiation dose and has a "cure" rate that equals or exceeds surgery with no increase in side-effects..Ask your RO about that...

All very wise and valid points.

I live very close to M.D. Anderson and it's almost in walking distance of my office, so getting there for the treatments is probably the easiest part of my decision. The option of having night treatments especially has appeal.

As a health care professional, I can agree completely with Steve. Insurance companies are private businesses, so they're in business for one reason - to make a profit for their shareholders and investors. You make a profit by getting as much up front from premium payments as possible, while providing as little service as possible. It's their job to avoid paying for as much as they can avoid paying for. They have doctors on discount contracts that make the argument about universal single-payor healthcare seem spurious. But where the law says they must pay, they usually will pay. They sometimes can avoid paying by claiming a treatment still falls into an "experimental" category. But proton therapy is past that stage, and the department at MDA is getting ready to publish five-year data. I have requested those data and as soon as I get them I will post them here.

Pushisti

Exactly my thinking logoslidat, re: combining e/t under one roof. MDA is good for that. However, to clarify, my urologist, who impresses me as very competent and instills confidence in me, has said he would NOT do HT. He said he concurs with the need for it if I go through radiation treatment. And MDA automatically rereads the slides. They've already submitted my health records releases to the urologist and to my PCPs.

So - to be continued.

P

Dr.Christopher Logothetis is head of genitourinary medical oncology at M.D. Anderson-Houston. Not often mentioned on this forum but would be on any short list in Texas. If you are considering HT and already have contacts at MDA, he would be a must-see IMO.

Chris Wood at MDA also comes highly recommended.

P

Joe, do you mind telling me the name of the doctor with whom you spoke?

My understanding about the treatment protocol for proton beam tx is that it's nearly identical to the IGRT/IMRT protocol: about 40 sessions, five days a week for 8 weeks; and that protocol is more or less fixed for everyone, whether the tx is radiation (IGRT/IMRT) or proton.

I'll be meeting soon with a doc over there and I'll post back with the results of that meeting.

P

The doctor I met with was Dr. Thomas Pugh. He is hard to miss since he is about 6'8"! He was very helpful.

Greetings Pushisti,

Sorry you are here- right place however. One of the finest robotic surgeons in the country is Dr. Kevin Slawin at Memorial Hermann Downtown. Was head of Baylor's Urology Dept for fifteen years- is developing prostate cancer vaccine. Voted Top 100 cancer doctor's in America year after year. I was back at work in less than two weeks- I was 57 at the time. I feel certain his surgical skill saved my life. A gift from God that my wife found him on line. No question after I met with him that he was the one to take care of my situation. I think I waited just about too long to get something done. Every person that I went to through out the medical center said "If it were my dad, husband, brother has pc, - I want Dr Slawin." As a side note, unless you live here in Houston, it is hard to comprehend just how large our medical center really is- 200,000 thousand employees! Lots of great doctors- we are blessed to live here and have the choices we have- within walking distance- don't tell anybody though-they all will want to move to Texas-LOL Might want to consider him as second opinion or first choice. Staff is great and he respects your time.

Pushisti,
Your high psa and < 1 year doubling time puts you into a high risk catagory not an intermediate risk. This is why your doctors are recommending HT. Unless all your psa can be explained (benign psa from prostate size plus psa from tumor volume size ( A g7 generates a specific psa per cc of tumor) you have to assume that some of the psa is coming from places other than the prostate that neither surgery or radiation can reach.
I would recommend you get a PAP test (indicates pc outside the gland) and a PCA3 test ( may indicate agressiveness). These will give you a little more information. You can also get a color doppler or an MRIS that will show the exact size of your tumor and location and will indicate if surgery is a viable option. With this information and a doctor that knows how to interpret this data you will have a much better chance of choosing the treatment that is best for your individual status. You can also send your slides to Bostwich Labs for a ploidy analysis and 2nd opinion. Your doctors don't have enough information to make a good recommendation and are just making their best guess with the data presented to them. The most aggressive option is to add HT to any treatment (surgery or radiation). I would read "Primer on Prostate Cancer" by Dr Stephen Strum to get a better idea of psa relationship to tumor size and futher tests you can undergo to better determine your status before making a decision.
At the very least you should get a PAP test as it is the best indicator of primary treatment failure.
JohnT

Below is my urologist's preliminary response to your post, John T:

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Mark,
I would be happy to go into this in further detail over the phone or in person. Your PSA and your pathology do not correlate well. [I interpret this to mean that the degree of patholgy I'm experiencing isn't particularly closely linked to my PSA score.] PSA can be elevated due to multiple causes. [I do have some benign obstruction, which has been there since at least 1996 and recently worsened.]

I only utilize a test if [its results are] going to change my management. Neither PAP nor PCA 3, both of which are very unreliable, are going to add anything to your management.

No one who routinely operates on prostate cancer utilizes hormones as they add no benefit and make the surgical procedure more difficult and dangerous. Adjunctive hormonal therapy is only used in radiation or after surgery.

Your staging studies have not demonstrated any metastatic disease. I would suggest that you come in and we can review this rather than making yourself worry over statements made on a discussion forum.
ML

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My note: I have greatly appreciated all the excellent first-hand experiences shared in this forum. It is an honor and a pleasure to be graced with this kind of openness insofar as participants here have chosen to share such personal features of your lives with me and others in this forum.

I do think it may be better for all participants if, in our experience as patients, we don't venture across the boundary of sharing our experiences into the realm of clinical interpretation of each others' data or making medical recommendations based on those data unless we hold medical degrees or certifications assuring our expertise in urological and oncological matters.

P