Brachytherapy: Regrets & Why ?
Just learned today that my lead-up to HD Brachytherapy is scheduled.
I don't like the sound of having a Perineum "Surgery" to insert 20 needles to implant seeds ..... BUT
What worries me most is 6 weeks of daily high beam external Radiation and all that could/will come from that !?
Help me get my head around this, that I may make my best decision based on "the whole story" and not incomplete and ommitted information, please!
Who's had it, and who regrets it, and why?
Background
_____________
*74 yo
*Healthy otherwise
*not obese/ no diabetes or high
cholesterol or high blood pressure
*Just beginning 4th month of
ORGOVYX
*No metastasized cancer yet
*1 Gleason 9, all others 7
Thank you for your first-hand knowledge!!
PAUL
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Your six weeks of radiation are IMRT which is the lower dose radiation. They do the brachytherapy after that, when the IMRT is complete. I had seven weeks of salvage radiation, which is IMRT as well. I had my radiation done in the morning and went to work in the afternoon and never even noticed it was happening. Some people do have reactions, some have fatigue, someone else was recently mentioning they were having prostate pain, which seems to have gone away after a couple of weeks.
If you have 1 Gleason 9 then you are Gleason 9. If they were to examine your whole prostate, you would have a lot more 9’a showing up.
Most people go through what you are having done without much of a problem. The side effects of the Orgovyx will probably be a lot worse than any side effects you have from radiation.
Let's make sure we are talking about the same procedure ....
I am having HDR BRACHYTHERAPY.
On November 11, they are first doing the short term implantation of seeds.
From the perineum,
these are inserted and removed; not low dose or permanent. I'm told a template for 20 needles, also known as tubes, is used for location over the prostate.
A bit later following this and same morning, a CT/SIM ( simulation ) is completed.
Approximately 2 weeks later, I am to begin 6 weeks of daily external beam radiation.
My greatest concern is the long list of possible side effects, and damage to my rectum, just as one example, of my fears.
I can perhaps accept some chance of a poor outcome, but I can't accept "surprises later" just because I was too ignorant to ask and my doctor didn't bother to address my concerns as his.
I already feel that he does not welcome conversations of possible adverse outcomes.
Without proper disclosures, I could see myself NOT doing this.
Thanks !!
PAUL
Hi Paul
I didn't have the treatment you are having (HDR+EBRT), but I would have opted for this as well, except the specialist that did it was on long term sick leave.
For the EBRT, they can do prostate only (PORT), prostate + seminal vesicles or prostate + SV + pelvic lymph nodes. It depends on the stage and (PET) imaging. At stage T3B for example, it will include SV.
Side effects tend to increase with dose, so did they tell you what fractions (daily dose you will get or total dose?). Typically it is a dose for the HDR and a second dose for the EBRT measured in Gy.
If you want something technical this was one I researched at the time.
Ask chatgpt to summarize it for you! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8789612/
HDR is short range radiation and is supposed to limit exposure to organs at risk but the rectum is close and the EBRT will impact it as well.
Some centers use injected hydrogel spacers but mine did not, the papers I read on the subject gave some benefit but it was not dramatic.
I see you had colon cancer and surgery so are worried about that.
The thing about radiation is there are early and late effects. You can get some adverse effects during and a few months after treatment, these can return (or you can get new ones) some years later.
Mine were/are:
diarrhea during treatment (about 4 weeks into it and 2 weeks after) grade 2, easily treated with 1 immodium per day. Rectal mucous still get a little which tells me it is not OK but nothing else.
Mild (grade 1) burning pain on starting urination (and stronger/painful urge) this started towards the end of treatment and has not gone away 8 weeks later (which is a bit concerning).
If you get whole pelvic RT, it damages the bone marrow (I did not know this) and kills off the lymphocytes so you are more prone to infection for a few years until it recovers.
Radiation also can cause secondary tumours down the track so my RO tells me I will need colonscopies after a few years.
It's the late toxicity that worries me the most. I can live with stuff short term.
Good luck with the treatment.
I had five weeks of external beam radiation (25 sessions) followed by seed implantation (66 seeds) at age 66 in July and August
2006.
The immediate effects were fatigue lasting until early November.
In 2009 I developed a rectourethral fistula: a hole between the rectum and urethra caused by radiation damage. That resulted in an Ileostomy which I still have.
In 2015 my urethra scarred over completely and I opted for a suprapubic catheter rather than complicated surgery that probably would have left me incontinent.
I'm told by my post-radiation doctors at MSKCC that my problems are extremely rare (1% of patients). But I am evidence that it does occur.
Thank you for sharing your story and insights into things that potentially effect and would concern us all.
I regret that you have realized some conditions that resulted in less than favorable outcomes.
I hope that your future may see great improvement!
So, knowing what you know now, and in review of past decisions, what would you do differently today?
Thank you!
PAUL
Back in 2006 when I was first diagnosed I consulted four doctors for opinions.
I also spoke to as many men that I knew who had been treated for prostate cancer. Those who had had surgery were dissatisfied with their outcomes.
I also surveyed the literature.
I don't regret the decision that I made at the time. I would go through the same process today. Bearing in mind that both surgery and radiation therapy have improved tremendously in the last 18 years, I don't know what my decision would be today.
I (G7, 4+3 (some risk factors), Decipher Intermediate, PET negative) was scheduled for a nearly identical tri-modal treatment plan about a year ago: HDR/Brachytherapy; 24 EBRT; 4 months of Orgovyx. With little more than a week to go, I changed the 'boost' radiation from HDR to Cyberknife. There were a number of reasons including: no catheter; non-invasive procedure; discussion with a Urologist friend who spoke 'off the record'; UCSF study that I've attached.
I completed all treatments in January and am mostly recovered. I completed the Cyberknife sessions (2) with ease; I completed all but one EBRT session and said enough when I had a great deal of trouble urinating and significant discomfort. Of course, missing one session was AMA, but, I don't regret one bit. The Orgovyx side effects still have not fully subsided and I have hot flashes, some belly fat and moderate ED. My T is increasing and I am hopeful all those hormonal issues will resolve.
Good luck, HDR is still widely practiced and has produced good results for many people.
chen_roach (chen_roach.pdf)
I’m four weeks out from my last of two HDR brachytherapy treatments. Initially, I had minimal bleeding and urgency issues, but those have since subsided. The only lingering issue I’m experiencing is chronic fatigue, which I hope will improve as I continue to heal. At this stage, I have zero regrets. Of course, the true measure of success will come later. For me, this was the best option, as I wasn’t an ideal candidate for surgery.
By HDR BRACHYTHERAPY
treatments, you are referencing the procedure of seed insertion?
So TWO sessions and 4 weeks apart?
I was told that for me it's ONE and done. Then nothing except for continued orgovyx before external beam radiation begins 4 weeks later.
So you have yet to receive the external beam radiation?
Thank you for helping me understand what these processes entail !
PAUL
My treatment consisted of two HDR Brachytherapy treatments, scheduled two weeks apart. I chose not to have external beam radiation as part of my treatment. Details of procedure attached.
High-Dose Rate (HDR) Prostate Brachytherapy (High-Dose-Rate-HDR-Prostate-Brachytherapy-.pdf)