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What's your radiation therapy experience as a pT3b cancer patient?
At six-months post-RP, and despite having two consecutive post-op PSA test values of < 0.1 ng/ml, my status as a pT3b has seen my urologist write an order for consultion with a radiation oncologist to do 40-days (8 weeks) of radiation therapy, knowing there is about a 25% recurrence of prostate cancer in pT3b patients. Therefore, for you as a same pT3b patient (meaning you had one or both seminal vesicles invaded by the cancer):
1) Did you have radiation therapy?
2) If you had radiation therapy, how soon after surgery did you have it?
3) Were your first two, and any subsequent, PSA values < 0.1 ng/ml (essential "zero"), and you had an order for radiation therapy written by your urologist anyway?
4) After having your 40-days of radiation therapy, did your pT3b cancer return, and if so, how long after your radiation (number of months or years) did it take to return? Or...how long have you been cancer-free with recurrence?
5) What were your side-effect symptoms during and after radiation therapy? I heard you can have excessive fatigue, and temporary or permanent changes with urinary continence as well as rectal/bowel issues that are temporary or permanent. I also heard that flatulence (gas) can be a problem during radiation therapy (after too?).
6) If your cancer came back after radiation therapy, what was your next treatment/therapy?
7) Did you suffer any of the ~5% negative serious side-effects of radiation therapy like bladder cancer or rectal cancer?
8) Anything else I should know?
My urologist was kind of "should we or shouldn't we" do radiation "now" vs "wait" until/if my PSA elevates to 0.2 ng/ml or greater? He is concerned that I am a pT3b with a very high likelihood that my cancer will come back "within" five years (could be next year, or two years, or unto to the full five years...but is likely to come back)...this despite having my first two post-op PSA values at < 0.1 ng/ml.
9) How many of you fellow pT3b patients out there have survived 15 years or more?
I appreciate any/all comments from fellow pT3b patients regarding any/all of the above.
Thanks
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@dhasper
Yes, ultrasensitive makes us comfortable and our hospital orders ultrasensitive. We did the first test in WalkinLab at 7 weeks and that at 8 we repeated ultrasensitive at the hospital where my husband had RARP to have an official confirmation and both tests came with the same result.
My husband is about less than 9 weeks post op., so we have time to think especially since his ultra sensitive PSA result is favorable.
If it starts changing action will be taken, of course. There is no way that we would wait for PSMA to light up , absolutely not !
IMHO the sooner the rise of PSA after surgery happens , the more probability is that some PC was left in the pelvic floor area or nodes. I am going here by pure logic, I know that there are other theories but I wonder if they stratify patients by time-frame of BCR if there would be then some changes in the statement that "only 30% of cases are in a pelvic floor area ". If BCR happens 15 years later than of course some cells could have traveled far in that period, but in the first 6 mos to a year I am not sure about it 🤷♀️. This is purely my way of thinking - has nothing to do with any study or anything !
Hope I was of some help and wishing you NO BCR in 50 years 🍀🍀🍀🙂
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Hug
2 Reactions@surftohealth88 Out of curiosity, as another T3a about 11 weeks out from surgery, what would you do if the ultrasensitive showed movement before the level doctors would treat or PSMA would show? That is the question I struggle with. Certainly, you would see it coming but is that just more time to be stressed and miserable? I have my first 3-month PSA coming up. Mayo does not use the ultrasensitive. I am considering doing my self-paid ultrasensitive but I am also enjoying life without being overwhelmed with cancer thoughts (I am a worrier by nature). So right now I am looking at it practically. What would your path be if you saw a low-level movement in psa?
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2 Reactions@jeffmarc
Thanks Jeff for putting all articles and discussions in one concise and clear format for everybody to see and understand.
It was me that asked about adjuvant and yes, as far as I remember only one person at this forum went though this process, actually tried to but at the end decided to wait since most doctors advised against it before PSA starts to rise and it did start to rise at some point.
It is very tough decision, we were struggling with it for a while and so far we did not make any since my husband's PSA came so low (less than 0.015) knock the wood 🧿🍀. We were advised to wait but we were also given option of having it if we want to and it is also advisable to wait for incontinence to go away and ED to improve since adjuvant effects those very mich. Toxicity is also higher in adjuvant than for salvage radiation for the same reason.
Suggested treatment IF and when we decide to have it was radiation of pelvic floor and nodes and ADT 6 mos. In the meantime testing ADT evey 3 mos., but we will do it every month and always ultra sensitive one.
As a reminder, my husband is T3a, one tiny part of a margin inconclusive but in the area of 3+3 and unifocal EPE less than 0.2 mm but inside the margin and also in the 3+3 area.
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Hug
4 ReactionsWhat you are referring to is what is called adjunct radiation. The doctor listed below is one of the very highly respected doctors in the country. She speaks at a lot of conferences and really is extremely popular with her patients. There are 4 requirements she has for doing this radiation. You have to have two of them in order to consider it? You are pT3b So you definitely fit one of the requirements do you fit another one? That is the deciding factor. that you get at least two of them.
Adjunct radiation
Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur
Here is a link to the article supplied by @surftohealth88 originally
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html
Someone posted an almost identical request in this forum a few months ago, and didn’t really get any feedback from people that had similar issues.
Many people who have salvage radiation have their cancer come back, but that is quite similar to adjunct radiation which is what you are facing. The side effects vary, but here’s a list of the main ones.
Adjunct and salvage radiation can cause the following
Radiation proctitis
Rectal issues
Rectal bleeding
Bladder infection
Breaks in bones radiation damage to bones
Fibroses in bladder which reduces capacity
In general, toxicities after postprostatectomy radiation using photon-based techniques have been tolerable, although the rates of late grade 2 and gastrointestinal (GI) and genitourinary (GU) toxicities range from 10% to 20% with image-guided intensity-modulated radiation therapy (IMRT).
What this means. “ late grade 2 and gastrointestinal (GI) and genitourinary (GU) toxicities”
Above describes moderate symptoms of damage to the bowel and bladder, requiring minimal intervention but impacting daily activities, and occurring after salvage radiotherapy for a recurrence or persistent cancer after initial treatment. Gastrointestinal (GI) symptoms can include moderate diarrhea or bleeding, while genitourinary (GU) symptoms might involve increased urinary frequency, pain, or intermittent bleeding.
A link to article
https://pmc.ncbi.nlm.nih.gov/articles/PMC8019576/
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7 ReactionsFollowing for comments.