Update #3 in my continuing journey - Prostate Cancer N...

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Update #3 in my continuing journey

PCInPA profile image
PCInPA

So, today I visited the center in Reading, PA where they have been using Viewray Linac since 2019.

The RadOnc I met with seemed very knowledgeable and spent a lot of time. Good bedside manner. He too discussed pros and cons of various options. He also ruled out Brachy or SBRT due to prostate size and past retention issues. He seemed ok with either a 5 or 9 week course of therapy whereas Fox said not less than 8. He did seem to be a bigger proponent of Spaceoar, having treated 300+ patients using it. He also said it was optional. (First doc said SpaceOar bad idea with large prostate). He was balanced in his surgery vs radiation estimate, a bit more optimistic about radiation than I sensed from first RadOnc. Felt either is an excellent option.

He did state that while surgery obviously addresses the BPH issue that once things settled, my prostate size would almost certainly be reduced so it is likely to have positive effect in that regard.

Concerning long term effects, he said minimal likelihood of incontinence but increased likelihood of other uro or gastro issues. Damn, no easy choices with this disease.

The Reading oncologists tend to treat all sorts of cancers, the Fox Chase ones tend to be more specialized (ex. Urogenital). That's a big consideration. It would be closer to go to Reading which is also a consideration albeit, lesser.

In terms of the Viewray. They do have the original .35T but he feels the image quality is more than sufficient for prostate. He was very honest in noting that there is no proven efficacy benefit over other Linacs. The biggest pluses seem to be the confidence that comes from real time imaging and that you do not need invasive marker placement. You do not get the CT exposure since it is MRI but, he felt the imaging CT exposure from other Linacs is minimal and a non-issue.

While I keep trying to convince myself otherwise, my very last and least desirable choice of surgery may yet wind up being the best choice. :-(. Due to related issues, I can't do Brachy or the 5 session radiation but instead would need to do the full 8-9 weeks. When you work for a big consulting firm, whose sole focus is how many billable hours you have, I am not even certain I could pull off an 8-9 week course of therapy and still be employed at the end.

I did ask about Liproca to reduce prostate size. Outside of a trial, I have not found a doc willing to try that.

Obviously SBRT would have been ideal, 5 days and done. For conventional fractionated, both RadOncs indicated that AEs would likely start around week 2-3 with some possibility of needing a catheter, also talked about bowel issues. Yeah, that could be rough if it starts up when you have 6-7 weeks of treatment with worsening symptoms in front of you. As if to warn me, as I got home I had an unexpected sudden and unpleasant bowel movement (just made it!!!). Then again, I have to consider 7 weeks of misery vs 20 years of misery.

Both talked about salvage therapy in event if recurrence. Sounds like surgery wins there although one must weigh that against low likelihood of recurrence for intermediate favorable. One thing I was not aware of that Foxchase shared is that should you later get bladder or rectal cancer that radiation is no longer an option if you have had RT for prostate.

I could do one more round of consults at Penn but, I really doubt I will hear anything different. It could be useful but may simply be delaying a decision.

Not as dissapointing as last week as I mostly heard what I thought I would.

Perhaps I should look into some alternative therapies. You know, bleach and very bright light or something. :-)

Argh, this sucks!

For my prior update, see: healthunlocked.com/prostate...

27 Replies

I've seen the .35T images- they are lousy. No worse urinary problems from SBRT vs IMRT - I have no idea why he'd say that. Did you talk to that Philly Ciberknife place I recommended?

PCInPA profile image
PCInPA in reply to Tall_Allen

Hi TA,

I will probably call Philly Cyberknife tomorrow.

The challenge is that I have now had two separate RadOncs, one from an academic center of excellence, tell me that they do not think I am a good candidate for SBRT. The Fox Chase docs words were, "I could not in good conscious recommend you for hypofractionated RT. ".

The decision process is proving even more difficult than I anticipated. As noted previously, if surgeon were telling me RT or SBRT is a poor choice, I would be skeptical, when RadOncs are telling me the same thing I may question but I must also take heed.

To date I have yet to hear the advice I want to hear or had hope of hearing. At what point does one accept it and stop shopping for the answer one wants? That's a tough question.

Tall_Allen profile image
Tall_Allen in reply to PCInPA

ROs who have no experience actually doing a therapy are as clueless as a urologist. Decide not to decide until after you've talked to actual experts.

maley2711 profile image
maley2711 in reply to PCInPA

These ROs at Reading and Fox Chase have no experience in actually doing SBRT ? That seems to be what Allen is saying? I have a larger 100 cc prostate and also interested in SBRT....should my biopsy results make that an option.

PCInPA profile image
PCInPA in reply to maley2711

I gathered that both, especially the Foxchase doc, do have considerable experience with SBRT. Perhaps not so much with large prostates? I am not sure if their recommendation against is based on their personal experience or general guidelines.

maley2711 profile image
maley2711 in reply to PCInPA

Could be both. Did you ask how many prostate SBRTs they have done? I know in the past Allen has said that 100 cc should be OK. I have never actually researched the question....you could if you are serious...Google is miraculous!!! Probably find something in 30 minutes , or much less. May I ask...what is your official prostate volume?? Other than that, what makes me hesitate the most is the inability to do both prostate and rectal, etc radiation...if you should later have cancer detected in lower abdomen areas. Of course, salvage treatment also an issue....but still possible if recurrence occurs......and unneeded if recurrence outside prostate. What sucks is the seeming need for patients to become amateur sleuths on all these treatments and ins and outs.......we need Docs who stay abreast of all of them ....I guess they are out there, but so hard to find. Have you looked at PCRI.org, and their many treatment videos. I think Dr. Scholz does consultations...if you don't mind $800 for an hour?

PCInPA profile image
PCInPA in reply to maley2711

Oh trust me, I have spent hundreds of hours researching. When terms like Retzius sparing become part of your vocabulary you have entered a new wirld

You are right, it's hard to get clear information. No different than what Andy Moore if Intel experienced 20 years ago and shared in his still relevant article.

Speaking of Retzius sparing. :-)

pubmed.ncbi.nlm.nih.gov/295...

maley2711 profile image
maley2711 in reply to PCInPA

yes, I fondly recall my venture into the world of Retzius sparing....what is your conclusion?

PCInPA profile image
PCInPA in reply to maley2711

From everything I am reading, if you go the surgical route it seems to make a lot of sense. Far fewer AEs for incontinence but also less risk of shrinkage, Peyronie's and inguinal hernia. Improvement in sexual function may or may not be there, a big unknown. Slightly higher risk of recurrence at margins but in unlikely event that happens you may have bought time for other therapies (RT) to advance. Requires higher level of skill so surgeon matters, not many US surgeons experienced in the technique. More difficult with larger prostate but recent study by Galfano reported results almost as good in those cases. I suspect in time it could become the RP best practice.

What were your own conclusions?

maley2711 profile image
maley2711 in reply to PCInPA

Yes, it has been a LONG time, but I believe I recall it was the reduced side effect risk that interested me. I recall thinking that I might need to travel to.....U of Kansas?......to find an experience surgeon. Didn't do any extensive search for such surgeons. I leaned moreand more toward radiation,though now it seems that may be in question. 2 months commuting for radiation seems difficult to imagine? One month would be enuf!! 5 days better!!! I think large prostate also makes brachy unlikely?

To clarify...with your enlarged prostate, you have never had any problem with too many bathroom trips? I thought such BPH inevitably led to frequent urination...shos the limit of my knowledge!!

BTW, my MRI lesion located in the BPH zone I guess......described as transition zone. So, that area not normally sampled , as my urologist admitted . without MRI fusion biopsy, whatever cancer I have likely missed. So, were the 30 samples your or the Doc's idea?

I did follow up with the OC at Foxchase as I wanted to confirm if my "feeling" that he thought I might be a better surgery candidate is correct. Based on his replies it sounds like he deems equivalent outcomes but stands by favoring conventional fractionated based on their experience ... I presume that in my case the baseline is a bit trickier to define. While I do have very good urinary function with meds, that would not be true if I stopped the meds. Summaries of replies to questions.

1. There are several trials that developed hypofractionated radiation as a new standard of care for appropriate patients, including our own trial. Our trial has some of the longest term follow-up of 10 years and beyond. In our hands patients with more difficulties passing urine at baseline had more lasting (long term) urinary side effects. With your history and prostate volume, I believe this is a concern. Therefore, I favor conventionally fractionated radiation for you.

3. You can choose either surgery or radiation and achieve similar success. Your baseline urinary issues limit your radiation options.

4. I do not believe there is a major difference in your outcomes with either treatment. Again, the prostate volume just limits what radiation treatments are well suited for you.

maley2711 profile image
maley2711 in reply to PCInPA

Thank you for that!! Well, I don't yet need medication for urinary issues...would that help? I do have the 2-3 nightly bathroom trips, and sometimes a small delay before stream begins...and not exactly niagara falls!!!!! again, your prostate size????

PCInPA profile image
PCInPA in reply to maley2711

I did follow up with question on if baseline is with or without meds.

58 yo.

Psa 8.4M

MRI pi-rad 4

Fusion plus random 30 cores. Gleason 3+3 and 3+4

Intermediate favorable

97cc prostate

I do not have to get up at night despite drinking coffee all day long.

maley2711 profile image
maley2711 in reply to PCInPA

so the meds have nothing to do with urination problem, because you have never had a urination frequency problem at nite? little confused...sorry. With my PIRADS 5 I guess I'll be lucky to escape with nothing worse than your 3 + 4.....and your 30 cores plus fusion cores should make you very confident of your result!! I couldn't talk med school urologist into taking more than 12 + 4 fusion cores. Was the 30 your idea, or the Doc's? Studies showed more cores produced better results.....I'm sure your read the same studies? actually, common sense!! mostly important for our larger prostates. I can only dream of a straight 8 hr sleep...lucky guy!! That was one good thing about catheter they stuck in me after biopsy.......yes, was retaining urine , and they wanted to go home!!

PCInPA profile image
PCInPA in reply to maley2711

For me the issue is retention. My first trip to a uro was 7 years ago when I went into scute retention. Had a cath for a week which was awful. Meds have kept me flowing since. I can tell if I go off of them for 2-3 days. Several uros have seemed surprised I have not had more issues given size of my prostate.

Yes, you have to be your own advocate. After my PSA my Uro was saying, "ok, let's schedule a biopsy". Having an aversion to needles in my arse I said, "let's do MRI first". He said that is not the standard of care, insurance won't approve it. I called insurance, no problem. I then found a 3T MRI center even though uro said 1.5 is fine. That led to Fusion guided biopsy. I asked if they simultaneously do saturation biopsy, they said yes. I don't know how they determined the final number. Best part is that it is done under anesthesia! (Btw, why is it you can get knocked out to have a tooth removed but not for invasive uro proceedures?).

maley2711 profile image
maley2711 in reply to PCInPA

Thanks for the clarification! Yes. fusion biopsy Doc refused my request for deep sedation. So, I was unable to complete the biopsy session..couldn't even tolerate the TRUS probe, let alone jabs into prostate. Then the Doc relented, agrred to sedation for 2nd attempt. I showed up, waited unclothed and with IV for 4-5 hours...then doc appeared and announced that there had been problems with another patient, and they sent me home without biopsy...strike 2. Finally, on 3rd attempt, received deep sedation, but unhappily walked out of outpatient surgery clinic with a catheter installed......for 8 grueling and probably unnecessary days...OMG! I could write a book about our medical system....just based on this journey to finally having a fusion biopsy, under sedation, paid by insurance....yes, an appeal was needed!! It has been 2+ years since I first saw the Uro for PSA 7.5. It fortunately stayed the same or dropped during those 2 years...haven't checked in last 5 months? who know, maybe it took only 5 months to make it to evry corner of my old bod! Lots of aches and pains!

PCInPA profile image
PCInPA in reply to maley2711

Sounds like you need to find a new urologist. For basic stuff whoever you start with is usually fine but, when the stakes get higher, or your Uro is not listening, it is time to switch horses.

maley2711 profile image
maley2711 in reply to PCInPA

The biopsy Doc was not my primary Uro. Primary Uro was fine with sedation, but Kaiser doesn't have fusion equipment...would have been a "cognitive" targeted biopsy. Med school, OHSU, has fusion equipment, so Kaiser Doc referred me there, and the Assoc. Prof Doc there refused initial sedation. Kaiser footed the bill......I just saw an earlier estimate of $6500......$5800 for facility use and $700 physician charges. And , says estimate does not incluse anesthesia cahrges!! INCREDIBLE!! About one year ago, I inquired re what out-of-pocket would be for fusion biopsy there...they told me $3500? What a screwed up system...and we let them operate this way? national disaster!! in the name of free enterprise?

PCInPA profile image
PCInPA in reply to maley2711

The whole US healthcare system is a hot mess. We are the only industrialized nations on the planet without single payer. Gotta keep those multi-million dollar salaries coming for the insurance company CEOs.

Single payer certainly has its issues but, I do not see any of those countries looking to adopt the US model.

maley2711 profile image
maley2711 in reply to PCInPA

Bingo !! 18% of the economy is a BIG special interest.....led by pharma, other corps, AMA union. But we citizens just keep taking it !!

BTW, an MD assistant sent me a message today.... " You do have cancer" Pretty much ruined our 3 day 30th anniversary trip starting tomorrow! Thanks for not honoring my request to "don't contact me un til I contact you ! " very pissed!! then, as though I didn't know, another reminder that test results are available. Iasked my Kaiser Uro to contact me if he has any even moderate GOOD news ! Like, you're not G 8-10 .

PCInPA profile image
PCInPA in reply to maley2711

Yup, I got my results when a "you have tset results" message popped up in my email.

It's not good news but keep in mind that the cure rates are extremely high. The journey stinks but, it will likely all be ok in the end.

maley2711 profile image
maley2711 in reply to PCInPA

Yes, but 2 weeks ago I got the test results message, and , as planned , I ignored it until we could finish our 3 day mini-vacation anniversary eascape from the city.......leaving today, hopefully! This was a message labeled from the Doc's assistant, and I thought in a reply to yesterday's message from me to them asking about their failure to ever respond to an earlier catheter removal cost number...yes, I wanted to make sure Kaiser would cover, or I'd return to Kaiser for the removal, which is what I ended up doing anyway......since Med school never responded to my cost inquiry!

So, the assistant, in I think 3 sentences, blurted out the fatal words....she did throw in "unfortunately"....I've learned that is a favorite word in the medical business!! Always unfortunately for the patient!! as I had directly requested of the Doc, she had avoided contacting me....."don't call me, I'll call you" was my request. Apparently the message didn't get thru to her assistant, or the Doc slyly hinted the assistant should send the message...knowing the assistant wouldn't rat on her?

I am an unhappy camper for sure.....and I've already told them !!

At the end of the day, I would go for the procedure that had the best chances of resolving your cancer without further need to keep going back. Billable hours await. Sad to look at ourselves as draft horses but that's basically what we are so we need to make the best choices to support ourselves and our family.

PCInPA profile image
PCInPA in reply to Anomalous

I agree. You explore all your options, weigh the pros and cons, and make the choice. None are perfect do there is a bit of luck factored in no matter. I *think* I have made my choice (stay tuned).

There are certain decisions in life which are just hard. You aren’t really qualified to make a choice like this not being a specialized physician, a statistician, or a researcher. Yet there it is. I didn’t catch your age or other health considerations.

I was 57 when diagnosed and otherwise in good health. My thought was being on the surgeon and let’s get this over with. That was two years ago and no regrets. Which ever course you go, you have great hospitals in Philly and Baltimore and a great hospital in Hershey. My guy had done thousands of procedures and is a leader in the American Urological group. I would go with whom ever is best.

PCInPA profile image
PCInPA in reply to CHPA

The problem is that few doctors are qualified or unbiased enough to tell you what is best. It is like going to a Honda dealer, a Toyota dealer and a Hyundai dealer and asking the salesman to tell you which manufacturer has the best car for you. That is why so many people regret their decision, they go to their primary urologist and say, "Doc, what do you think is best". He replies, "I'll schedule you for next week".

Minimally, anyone should go to a mukti-specialty cancer center of excellence. A good approach is what Andy Grove of Intel did. The options have evolved but his approach remains valid

google.com/url?sa=t&source=...

CHPA profile image
CHPA in reply to PCInPA

I suppose I can’t fault a Honda dealer for believing in his product or the Toyota dealer his. In the same manner a surgeon believes in his approach as the radiologist does his. And when statistically the results are similar, you get to pick which car you prefer and which treatment. Tough choices both. All I can say is I picked surgery for the quick and definitive results. I had a friend a year older who had gone this route and one 20 years senior. A colleague was having challenges with seed therapy. I felt I did sufficient due diligence and No regrets at all

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