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Who has been through the IMRT

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Posted 1/19/2017 1:07 PM (GMT -5)
Hi Folks,

As I am still waiting to see the urologist tomorrow to get the pathology info that I will post. But while I'm
waiting I do know he wants me to go through the IMRT a 40 day treatment is what he said will happen once he sends me to the radiology oncologist. The folks that have had this type of treatment could you kindly share a little about what to expect and any side effects you went through? Sure would appreciate any info.

Thanks
Jay
Posted 1/19/2017 1:15 PM (GMT -5)
One should never start talking about treatments until after the full understanding of pathology and case characteristics are understood...and from what I see you don't even have the most important piece of case data: your Gleason score x+y. Go read the "Newly diagnosed..." sticky thread.


Second comment; very fishy that your urologist is so fast to recommend you for RT. Is the RT facility got a business connection to the urology practice? This has been a recently emerging "bad practice" which has tweaked many questions about medical ethical standards.
Posted 1/19/2017 1:47 PM (GMT -5)
Jay, there are many different treatment methods. If you choose radiation, you can use External Beam or Brachytherapy. External includes IMRT, IGRT, and SBRT. Generally with SBRT you can use 5 or 6 sessions to do what 40 sessions of IMRT/IGRT would do. If you use brachytherapy, you choose Low Dose Permanent Seeds or High Dose Rate temporary. With seed you have one procedure that inserts the radioactive seeds and they provide very low dose radiation for several months to the prostate area. HDRBT, inserts a high dose radioactive pellet for a short time, less than 15 minutes, and removes it so no radiation is left in the body. You would have either one or two procedures using HDRBT.

Many of us suggest using the more convenient forms of either brachytherapy or SBRT rather than IMRT/IGRT due to the greater convenience and far fewer treatments. Less time, less money, less travel, etc.

But, as JackH aptly suggests, you should first decide that you are going to use radiation as the therapy and then go talk to several different radiation oncologists that specialize in each of these different types. No one does them all and the urologist is not the one to give direction and advice on the radiation. You have to go to the actual specialists, get the information, then make the treatment decision. You have men on this board that have used every option available and all will share their experience with you.

There are several great websites to study. I used HDRBT myself (and IMRT due to my high risk) and found that www.cetmc.com gave the best information about brachytherapy.

Best wishes and happy hunting.....
Posted 1/19/2017 2:03 PM (GMT -5)
Jay
Has he/she told you why they thought this was your best course of action
Jack H. Is correct some of Thea's doctors have a business connection and as stated " bad practice "
I think I would ask the question about doing 5/6 sessions and if he / she takes exception to your questions,I personally would find a new doctor in my case I did
Posted 1/19/2017 2:33 PM (GMT -5)
Thanks everybody I'll have more info tomorrow. Just new to all this and reading all the info is just a little overwhelming. When the doctor called me at 6:30PM while I was on the road I kind of went numb when he said the words aggressive cancer and just didn't know what to say or ask at that moment.... But I'm learning.

Thanks
Jay
Posted 1/19/2017 2:57 PM (GMT -5)
Sure...lots to learn. Please make sure that you walk out of the office tomorrow with a photocopy of your prostate biopsy pathology report for your personal medical records...this is one of your most important pieces of paper.


I mentioned the ethics concern only briefly in my reply earlier today. What you wrote ("But while I'm
waiting I do know he wants me to go through the IMRT a 40 day treatment is what he said will happen once he sends me to the radiology oncologist.") sent up an immediate red flag. Be sure, if & when he talks more about IMRT tomorrow, you ask whether this treatment is in the practice's office OR at a centralized facility that is owned/run by his practice, or if his referral, on the other hand, is to an radiation oncologist completely disassociated with his practice. Just ask, "is this radiation facility somehow a part of, or associated with, your urology practice?" If it's anything other than a clear, unambiguous "no," be wary.

Here's a bit more background on this issue: Prostate cancer patients choose among multiple treatments that are often considered equally appropriate but can have different risks and side effects; in fact for some favorable-risk cases, monitoring (no aggressive treatment) can be as effective as any of the costly, aggressive treatments. The treatments can also vary in cost, with IMRT being one of the most costly options.

There are laws against "self-referrals," but a loophole has recently been exploited as equipment costs for IMRT have recently dropped...urology practices (typically large practices) have been buying equipment and offering "convenient" one-stop shopping! Sounds nice, but the reality has been that these practices steer patients toward the services they wish to offer, rather than those that might be best for the patient. Men should be educated and counseled about all appropriate treatment options outlined in evidenced-based guidelines so they can make the choice they feel is best for them. Prostate cancer treatment recommendations should be based on the best available clinical evidence and not influenced by business or personal interests of the care provider.

Some troubling data has emerged from practices who engage in self-referral. (1) Far fewer cases of Active Surveillance/monitoring come out of these urology practices. (2) The time to treatment initiation has been significantly lower (men "rushed" into treatment). (3) Urology groups that brought a radiation therapy machine into their practices had utilization rates well above national norms for IMRT treatment for prostate cancer. (4) Probably not a concern for you, but by far the largest number of men being treated over 80 years old have been seen in these practices.

The bottom line is that by setting up a business model that tends to drive patient referrals to the most
expensive treatment option, many cancer patients are denied the independent clinical judgment and choice they need and deserve. I don't know your urologist's practice, but I just don't want to see another men "rushed" into a treatment...

Not saying this is the case with the doctor you are seeing now, but your words sent up a red flag. You can ask the question about the RT referral tomorrow.

Post Edited (JackH) : 1/19/2017 1:08:17 PM (GMT-7)

Posted 1/19/2017 3:16 PM (GMT -5)
You need that report and to talk with the RO before a final decision.

SBRT might be a better choice.

For IMRT, the side effects are mostly boredom. On the machine, off the machine. Drive to, drive from. Some get bowel issues, often loss bowels (don't trust a fart). The RT irritated my hemorrhoids which wasn't fun. Some get fatigue ( got a bad case of that). I also had frequent need to pee (and pee right now).

Post treatment the biggest issue is some lingering bowel issues (manageable), some slight ED, and a tendency to write poetry.

Other than that, life is good.
Andrew
Posted 1/19/2017 3:19 PM (GMT -5)

InTheShop said...
You need that report and to talk with the RO before a final decision.


No. That's woefully incomplete.

There are lot's of things you need before final decision.



You can start tonight by reading the sticky thread at the top of the main HW/PC list of threads, titled "Newly diagnosed with PC? -- read this thread first"

Post Edited (JackH) : 1/19/2017 1:29:59 PM (GMT-7)

Posted 1/19/2017 3:22 PM (GMT -5)
I had IMRT as a salvage treatment. Like Andrew wrote, it was a little boring. I got some mild bowel issues that resolved on their own (and with the help of a steroidal foam) within a few weeks of treatment ending. No urinary effects, and no fatigue for me.
The treatment apparently worked in my case. I'm coming up on the 10 year mark this year.
I can't speak to modalities that have come along in the meantime--something could very well be preferable to the treatment I had, for all I know.
I blogged about my experience extensively (see signature for that).

Best of luck--
G.
Posted 1/19/2017 8:09 PM (GMT -5)
Given what we've learned definitively in the last year, there is no longer any reason to undergo 40 IMRT treatments.

/pcnrv.blogspot.com/2016/08/hypofractionation-no-long-term-effect.html

Until you provide more details from your biopsy, I can't tell you much more about which treatments may be appropriate. Make sure you get a copy of your biopsy report. You should always keep copies of your own records.

In Washington DC, Dr. Dritschilo at Georgetown would be a good place to start. You can contact his office directly to make an appointment: +1 202-687-2144
Posted 1/20/2017 3:27 PM (GMT -5)

Tall Allen said...
Given what we've learned definitively in the last year, there is no longer any reason to undergo 40 IMRT treatments.

/pcnrv.blogspot.com/2016/08/hypofractionation-no-long-term-effect.html

Until you provide more details from your biopsy, I can't tell you much more about which treatments may be appropriate. Make sure you get a copy of your biopsy report. You should always keep copies of your own records.

In Washington DC, Dr. Dritschilo at Georgetown would be a good place to start. You can contact his office directly to make an appointment: +1 202-687-2144

I second the idea of meeting with the Georgetown U Hosp Rad Oncology specialists. Dr Drischilo is the head of the Dept; I saw Dr. Sean Collins.
This (Medstar) Hospital has all the toys (SBRT and IMRT). They installed a proton unit over the summer, but I don't know if it will be used for prostate cancer treatments. Not that I am in favor of the latter approach!
The staff was friendly and, more importantly, competent while I was treated there (summer of 2013). You can see what was done in my signature.

Finally, if you want IMRT histories from others, there are a whole bunch of threads right on this forum that are worth reading.
Good luck with the decision process.
Posted 1/21/2017 9:03 AM (GMT -5)

Jaydubs said...
...As I am still waiting to see the urologist tomorrow to get the pathology info that I will post. But while I'm waiting I do know he wants me to go through the IMRT ...


Two courses of prudent action for you: 1) have your slides sent to a recognized expert (Bostwick, et.al.) for another reading and 2) get a copy of your biopsy report.

Once both are accomplished, dump them and go to a recognized cancer center of excellence. You could be a candidate for active surveillance, if not then you might want to consider surgery or one of various forms of radiation.
Posted 1/21/2017 12:10 PM (GMT -5)
The guys have given you good advice on questions to ask and so on. You have much to consider.

For what it's worth, here's a video I made of a session of traditional IMRT in 2013. It's not real visually dynamic, but it is a real time patient's view of a real session. I put my iPhone in my shirt pocket and went through the experience.
Posted 1/21/2017 3:04 PM (GMT -5)
There has been some very solid advice given so far in this thread. I even agree with some folks that I don't often agree with!

Side effects can be all over the map. My IGRT (IMRT with Calypso guidance) as an adjuvant treatment (after surgery) has a thread linked in my signature below. It was in 2010, and some things have changed. But a very important bit of advice already put forward is to talk to multiple doctors where you can, and see if you can get a Medical Oncologist who specializes in PCa in the mix.
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