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BenSam and other midwestern HDR monotherapy recipients

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Posted 9/8/2015 4:44 PM (GMT -5)
I'm strongly considering HDR monotherapy and am looking for an excellent, experienced, "local" radiation oncologist.

I'm in St Louis where I don't believe anyone is doing 2 fraction HDR. I met with the doc at Washington University last Friday, and he has been doing 1 fraction HDR as of last December (and has done about 30). I didn't get the impression he's doing the 2 fraction, as he said he thought it wasn't necessary and just added to the cost.

I spoke with Dr. Alvaro Martinez today on a cold call (what a nice and helpful man!!!). Like everyone else I have consulted (urologist, oncologist and rad oncologist), he too is recommending treatment, noting I don't fit the Hopkins active surveillance criteria with 5 positive cores (all 6s), strong family history (twin brother and father), and my relatively young age.

Although he normally recommends one fraction HDR, namely one day of treatment with 19 Gy, he thinks that would be too aggressive for my level of disease and recommended the 2 fraction HDR therapy, separated by 2 weeks. He has noticed less acute side effects when the treatment is 2 weeks apart versus 1 week apart, that is, based on his experience, the 2 weeks allows more time for the urethra, rectum and bladder, etc to recover between treatments.

I was very impressed with Dr. Martinez, and he was not soliciting my treatment. Just trying to help me.

BTW, he recommended that I have my biopsy slides sent for Prolaris testing, saying it was not a waste of money, strongly disagreeing with my urologist.

I know BenSam was treated in Chicago, I believe by Dr. Santosh Yajnik at Radiation Oncology Consultants. BenSam, is this correct and how was your experience? Any regrets? Chicago is closer than LA (Dr. Mitchell Kamara/Dr. Demanes).

If anyone else has received 2 fraction HDR monotherapy in the midwest, please let me know with whom, where, and the experience. I realize I could see Dr. Martinez but that's an even longer drive than Chicago.
Posted 9/10/2015 9:06 PM (GMT -5)
dcd55

Yes I was treated by Dr. Santosh Yajnik. The overall experience was... challenging but not over the top awful. I had HDR Brachy over a two day period. The pharma made it bearable, little to no pain, but for me facing this alone, coupled with other issues may have been the most difficult part. Never underestimate the psychology around a physical malady situation is what I have learned. Yajnik and his team were great, showing what I felt was quite a bit of attentive care. I was in the hospital for two nights ( Advocate Illinois Medical Center Chicago) and felt the care I received there was quite good. However, I feel my recovery (it has been over 7 months) has been less than stellar. But this is only me, my body. I am still on FLOMAX and when I have tried to stop taking it I lose all sense of normalcy regarding urination. I was was on 2 a day but have been able to cut that down to one a day. Though I have more intense sexual climax (go figure), there is 90 to 95% less ejaculation. This is very disheartening. On the up side, my PSA is in line and falling in the expected downward trajectory. That is good. I can do everything I did before ( much less interest in sex overall) but again I correlate that to my psychology more than anything, I guess. My numbers were very similar to yours. Upsides and downsides to this treatment mode. Another upside has been zero incontinence, though it took a bit of time to get used to and then rid of a general uneasiness in the abdomen area. Because of my solo situation, this (or LDR) was the best treatment choice for me. I didn't want to travel and really felt comfortable with the sense of knowledge, availability, intelligence and kindness displayed by Yajnik and his team. The attending URO is Paul Yanover

I hope this info is of value and I would be pleased to answer any questions you might have. Also, note with the two consecutive day HDR Brachy treatment, you are strapped into stirrups (legs up) for that period of time but numb from an epidural so not much to feel or notice. smhair smhair

BenSam--hey everyone ...been along time... tongue
Posted 9/10/2015 9:13 PM (GMT -5)
Hey BenSam, when i saw dcd's post, i wondered where you have been. Nice to see you back, stick around, will ya.

Sounds like you've got some issues, but glad to know that the PSA is dropping as hoped for
Posted 9/10/2015 9:25 PM (GMT -5)
Hey there PT-Man. Thinking of ya and hoping you are well as well!! Shouldn't complain I know. Been a great summer of biking up and down Lake Michigan getting lost in the tunes.... and then someone went and ruined it for me by hiring me. Always trying to find and keep the sense of life balance, meditating, working out, eating and enjoying, and now just working alot..... the balance seems to always be sacrificed first... it's a struggle to keep, but I definitely recommend all to fight for it. It is well worth it. PeaCE my brothers!!
Posted 9/10/2015 9:33 PM (GMT -5)
BenSam, I was hoping you'd see this.

Sorry you are still experiencing some issues. Being by yourself doesn't help things, I'm sure. Tough enough battling the disease.... But the PSA is heading in the right direction.

I've come to believe HDR monotherapy is my likely best option. I called Dr. Morton in Toronto the other day and spoke with his assistant about his trial investigating 1 vs 2 fraction treatment. His assistant said the trial closed 2 weeks ago, and that so far, the acute side effects don't appear to have been any different between the two types, with both groups reporting minimal problems. She thought he might talk to me by phone or email, so I just sent him my life story....

Thanks for all the great info. Very helpful.

OK, some follow up Qs:

1. Did Dr. Yajnik say why he was doing the fractions on back to back days versus the one week/two week interval protocol by Demanes and Martinez, respectively? Does he offer the longer interval treatment?

2. Did Dr. Y give you one 13.5 Gy fraction each day, or 2 lower dose fractions each day?

3. I saw where you wrote on another thread that Dr. Y had done about 100 of these as of your 12/14 consult. Do you know how many he's done since then? Any qualms about his, and his team's, level of experience?

4. Did he quote you stats on the side effects on the first 100 or so patients before you?

5. Did he offer an explanation as to why he thought HDR monotherapy was your best option over all others?

Thanks so much!!
Posted 9/10/2015 10:36 PM (GMT -5)
1. Did Dr. Yajnik say why he was doing the fractions on back to back days versus the one week/two week interval protocol by Demanes and Martinez, respectively? Does he offer the longer interval treatment?

YAJNIK, who is the Chief of Radiation Oncology at the Advocate IL Masonic Med Center specifically trained in this procedural mode @ MEMORIAL SLOAN KETTERING (MSK) in NYC with the guru of this treatment (name escapes me ). He does not offer the "West Coast" longer interval version of HDR BRACHY as perfected/ implemented by Demanes-Martinez. His thought process, if I recall correctly, get it done, one insertion of all those fun tubelets and needles rather than twice if broken up by a week or two... did I mention the mechanism in the perineum stays in place overnight, less use of pharma.

2. Did Dr. Y give you one 13.5 Gy fraction each day, or 2 lower dose fractions each day?

Two a day at 9.5 per session

3. I saw where you wrote on another thread that Dr. Y had done about 100 of these as of your 12/14 consult. Do you know how many he's done since then? Any qualms about his, and his team's, level of experience?

I knew and understood that he was not as practised and experienced as Demanes (LA) or Martinez(DET) or MSK in NYC but I had a comfort level with him and his team. His nurses were very relaxed and funny but professional and he was very professional, you knew he was in charge.I wanted to stay in familiar surroundings (Chicago) as I was already flying solo so I brought this aspect into my decision making. He looks young but I knew he was in his early 40s and he was well regarded in the Chicago RAD ONC HC community.It was one of those ..felt right situations

4. Did he quote you stats on the side effects on the first 100 or so patients before you?

Yes, he did and all I remember is that they were quite low. Incontinence- nearly 0%, decrease in ejac. -10-15%, but ejac flow may increase as one negates FLOMAX and other pharma and time passes ( I'm waiting to see if that gets better for me), overall ED issues 5-10% I think.... not a real side effect for me. I do recall that they were impressively low enough for me and I felt comfortable that as I am in good health otherwise, that I would do acceptably well. And that he (Yajnik) was not just blowing smoke or doing a sales job.

5. Did he offer an explanation as to why he thought HDR monotherapy was your best option over all others?

The URO and I discussed why this would be the best option for me. Like everyone else on this site I spent a large amount of time researching and researching... you know you can research yourself into oblivion regarding the "options". It comes down, in my opinion, to the lifestyle post side effects you decide are important and you may have a more or less chance of having and what are those that you are more or less comfortable having to potentially deal with. At this point in my life, I wished to have a greater chance of an ongoing sex life and a lesser chance of having to experience incontinence and deal with alot of keeeeegles. So I felt surgery was not right for me, personally. HDR Brachy v. LDR Brachy was the choice for me. It was gut coupled with the concept of intraoperative (HDR onsite immediate position planning ) v. preplanning positioning ( LDR three weeks seed pre-placement position planning). Was it the right best choice ...who knows... I'm just keeping busy livin my life
Posted 9/10/2015 10:53 PM (GMT -5)
BenSam, I really appreciate your detailed and thoughtful reply. Great stuff. I called Dr. Yajnik's office the other day and learned he doesn't do phone or email consults, which is what prompted this thread. So had you not replied, I probably would have had to make a trip to get the info you were so kind to provide.

If I go with HDR mono, the question for me is whether to let the local guy do a one and done 19 Gy fraction and really get it over with quickly with no overnight, return visit, etc, OR take Dr. Martinez's advice and spread out the treatment over a week or 2 in which case I'm on a plane to LA or Detroit, OR drive to Chicago and let Dr. Yajnik administer 4 fractions over 2 consecutive days........

I'm hoping Dr. Morton weighs in.

One thing I do know is that I don't have to make a decision in the immediate near future. Time is on my side (for now). And by the time I'm ready to treat, probably some time next year, all the HDR docs will be more experienced and all will have more data at their disposal.

Thanks again!!
Posted 9/11/2015 8:13 PM (GMT -5)
Best to you. If you make it down up this way let me know!!

BenSam
Posted 9/11/2015 8:35 PM (GMT -5)
It's not the mid-West, but Atlanta has two very good providers. I went through Winship Cancer at Emory/St. Joseph's (2 procedures) and JNF went through Georgia Urology.

I go to St. Louis a couple times a year and it's an easy flight. Winship has a low priced charity lodging place.
Posted 9/12/2015 2:50 PM (GMT -5)
Thanks Dewayne. Very good to know. Any idea how much experience those providers have with 2 fraction HDR monotherapy?
Posted 9/12/2015 9:19 PM (GMT -5)
Dr. Rossi did mine and he's the head of Brachytherapy. The nurses told me people come from all over for him to do it. I believe he said 3-4 per week.

With the x-rays, physicist, etc. it would seem they are pretty precise. I know they set the catheters and then go to x-rays and then readjust. So it seems like a detailed procedure.
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