Thank you all for being here and sharing your experiences.
My situation:
Marginally high” PSA test (5.33) in January.
Needle biopsy of 14 samples showed cancer in 11 samples
Gleason 3+4
Diagnosed with advanced prostate cancer.. Age is 67.
MRI showed abnormal prostate MRI. Large lobulated gland especially along the left lateral and posterior margins that appears to be predominantly secondary to a large bilobed hyperplastic nodule. However there is a second area immediately mesial to this large bilobed nodule involving the peripheral and possibly transitional zones with concerning imaging signal characteristics that suggest the high likelihood for the presence of clinically significant prostate cancer. Overall assessment is
PI-RADS 5
Took a 21 day course of casodex hormone therapy and lupron injection, which lowered my testoserone reading drastically (to about 20% of starting values). Good.
I am now scheduled for a external radiation simulation on TUESDAY Apr 16, followed by 8+weeks of radiation treatments.
What do I need to know??? Often the questions I DON’T ask are the ones that bite me. What can I expect? Your experience and advice in situations like this is appreciated.
Written by
tocinovino
To view profiles and participate in discussions please or .
No. Your doc will discuss side effects with you. Watch for difficult BMs. If they become painful, you will likely want to debulk your diet. Longer term you may see bleeding with urination or BM. In most cases it’s not serious, but get to your urologist/gastroenterologist for a look. Good luck with the treatment.
No.....My simulation was similar to having a CT scan. They only put a IV tap in your arm and then inject the "contrast" as they scan you. You do put on a hospital gown without your underwear (your important parts stay covered).
My hubby has grown a nice set and I got to thinking (which sometimes gets me in trouble...), why haven't I seen any binding undershirts for men? It seems like a simple fix. Instead of Spanx it could be called Manx, or...?
He's camera-shy, so yes to a model. You volunteering? I'm thinking just white for the color and making it similar to the sleeveless type aka wife-beaters. WHO thought up THAT name? Grrr...
I searched Amazon for “gynecomastia” and it showed a number of compression shirts advertised it help with man boobs. When I was a real man, I typically wore compression shirts to work daily (sweaty construction worker, kept outer shirt from sticking) so I have a closet full of them already (not helping me now at all). Will be interesting to see if there is a difference or just snake oil!!!
Lol, at least you are lighthearted! There are so many new materials out that wick away moisture, I just think it (damn, Seinfeld would want a fortune if I used the word Bro), could be made less bothersome if it looked like a fairly normal T. I know how crummy it makes my husband feel when he looks in the mirror, which he refuses to do lately, much to my chagrin. Imagine a thin Einstein with boobs-crazy, wild hair and all. He deliberately wears baggy shirts. He is a warrior who deserves dignity, like every warrior. The disease is bad enough without hot flashes and boobs. One thing I would never do is tease him. Guys can do it without fallout (oops, bad choice of words), but if a gal said something, I know one person who would stop going out. Another phrase that's verboten is, "Grow a pair." Of what? It sucks (crap, another bad choice of words) that the side effects are demeaning. I want to remove one side-effect with something that looks and feels normal, isn't hot, or uncomfortable and the proceeds would go straight to research. This illness needs to go!
A HARD t-shirt??? Ouch! I should have specified what I was writing about, lol!!! I know better than to use the word "it" and even "something" because of possible misunderstandings...shame on me...especially here. In my defense I'm still trying to picture a shower with green shag carpeting. The carpeting (whew, almost wrote "it!") won't exit the Insane section of my imagination.
Then you are a lucky man .. you can keep enjoying what’s important to you . I can’t complain ...no room for that here..there is sympathy and compassion amongst us members and those that love us . Members in the hospital or hospice or suffering various forms of torture .APC can make quick work of us or it can tangle us up in misery for years.... In my case it’s hiding . For now ,Like the shadow .. can’t be seen on scans ..that’s a miracle knowing what bad shape I was in . The Only reason that I’m here today is the love of my wife .. she saved me from the jaws..from myself with her love... but just like “jaws” APC is long winded and tenacious ... Enjoy the good moments and days . Take care...
You might want to ask your RO about SpaceOar. I know there are men on here who think it’s not necessary. However, my husband did get the hydrogel in place and has no regrets. It is a hydrogel that is placed between the prostate and rectum to protect the rectum from radiation. The RO explained that relatively speaking in terms of radiation targeting, there’s a lot of space gained between the two. My husband had no problems with the insertion. The gel naturally is absorbed over about 3 months.
His MO wanted him to get a colonoscopy a couple months ago. After 7 months, there were no apparent issues as a result of the EBRT. Maybe there would have been none anyway but our insurance covered it and the procedure and its after effects were tolerable. My spouse thought the benefits outweighed the minor discomfort. You do have to get the SpaceOar before you are mapped for radiation.
The RO will explain the necessary bowel elimination and bladder filling. That might take a few sessions for you to get the hang of it. You may have some blood in your urine and bouts of diarrhea. Paul had two big “oops” with diarrhea striking suddenly. He carried a change of underwear and pants after that. By week 3, he was greatly fatigued. Between the ADT and radiation, he was pretty much beaten down. He took a 6 month disability leave from work. He has been back to work for about 6 weeks and has downshifted to a non-management role. He is tired but does like having a daily routine again. Good luck! I hope your experience with radiation goes smoothly. Hugs, Mary
Yep. The alley, alley oops. I try to avoid all alleys.
Stay hydrated throughout RT.. You will be under the beam only for 11/2 minutes the rest is waiting your turn ..it wears on you towards the end . That at least was part of my experience.. we all handle things differently . Eat , sleep , rest, & some kind of exercise everyday to keep oxygen up from now on . That’s all I’ve got for now . If and when questions appear please ask ? . There are many in the know to answer you .. Good luck ....keep the faith ...
Just do exactally what they say?Do not miss one RT session, not one?
A leading radiation-oncologist doctor told me not to read stuff online about Pca because I'd feel confused and anxious, so I told him that's exactly how I felt after talking to doctors. We are supposed to be mentally submissive to the doctors, and believe they know best. Well, some know more than others, and my initial primary treatment was an attempted open RP but after opening me the doc found I was in the 1% of his patients who could not have PG removed because Pca had come outside PG capsule all around nerves. No pictures or videos were done, and he just said there were "adhesions" and "obstacles" but did not say I had real bad case of Pca. So they took more biopsy samples and had a real good look around, and found no spread, so they sewed me up.
I began Casodex for a month and then ADT with Eligard then Lucrin injections ever since to keep my balls closed down and thus chemically castrated ever since, and 70Grey of EBRT was given over 5 weeks after 6 months of ADT. The ADT reduced Psa from 8 to 0.08 and reduced PG target size for EBRT.
Anyway, after 2 years all that failed to kill Pca. and I found scholarly articles suggesting that my treatment had virtually no chance to succeed with a Gleason 9 compared to having an RP when Gleason score is only say 5, which would have been true in about 2004, some 5 years before the Gleason 9 monster was found. Mets from my monster may have spread widely and remained so small nobody found any until 2 lymph nodes in 2016 and many bone mets in 2017 etc. So ADT just makes Pca sleep, but its rate of development is slowed down.
In Germany, there's a trend now for men to have Lu177 much earlier than thought sensible only a few years ago, and some believe that where an RP is not possible, and there is some spread, the PsMa Ga scan will show were Pca is in PG and mets and most reliably when Psa is at least about 5.0.
The PsMa scan only became available here in Australia in 2015, and I had my first in 2016. I had additional IMRT to PG and 2 mets, but Psa went low, then up, and as it so often does. I had Casodex added for months following IMRT, and then abiraterone then chemo, and nothing could keep Psa low, so I'm due for 4th Lu177 shot in 2 weeks and Psa is presently 5.6 and it went up to 50 at end of chemo which did not work after 5 shots.
So your battle is far from won, a low Psa while on ADT and other hormone manipulating drugs does not indicate a low amount of Pca, it just means Pca is in a coma, but very much alive, and maybe mutating to become resistant to any future treatment and it even invents ways of making its own testosterone to become able to grow fast.
Some conservative old doctor may not be fully aware of what is best practice, he is stuck in the past. But many doctors are now wise to what Lu177 can do, and its used began with patients in end stage where they had nothing to lose if they did not respond. But If Lu177 had been available in 2010 at the time of my failed RP, it may have been much more effective than the 70Grey of EBRT and for many men their Pca needs maybe 140Grey to achieve a good result at PG.
But all those mets are probably out there. There's a trial in Melbourne starting soon for newly diagnosed men to have PsMa scan which I think is essential now and then having Lu177, and its very effective against soft tissue mets. The bone mets are the biggest worry.
You need the best doctor you can find who is fully aware of the most up-to-date treatments.
Lu177 is not for everyone because some men have Pca which don't make much Psa or make much PsMa so mets are not seen in scans until big enough for FDG CT scans etc.
For very many ppl, including myself, I had little idea what to ask the doctors before diagnosis, but I expected Pca to hit me because sister died at 60 of Oa, another has survived 9 years since double mastectomy at 66, father died of melanoma at 60, and his mother died of Oa in her 50s. But my mother lived to 98, no major cancers. My study online was limited in years before 2009 at diagnosis at 62, with Psa 6.0. Because my cancer produced a low Psa for the amount of Pca, medical system failed to detect Pca early enough and MRI at that time and other scans were next to useless, but I should have had biopsy when Psa was only 3, maybe in 2004. I'd hade regular Psa tests to get it early enough but it was too late, and I had advanced Pca at diagnosis.
But luckily it did not invade organs surrounding PG, so bowel and bladder are OK. Brachy Therapy is also maybe a fix, many radioactive gold pellets are injected into PG and up to 160Gy can be delivered.
EBRT is usually limited to 70Grey to prevent damage to your rectum and any other places in the entry and exit pathways of the high energy X-ray beams.
There's a whole pile of books worth reading to give you some idea of what is possible treatment and almost none tell you how effective anything might be over time for you. Unless you have an early enough successful RP where the tumour in PG is less than pea size, then Pca is going to usually chase you to your grave with vast expense sometimes needed to prevent it causing your death. I've seen a man die in 3 years after diagnosis, and another is alive at 26 years. 90% make it for 5 years, but so many are dead at 10 years.
I have lived in Canberra in ACT since 1973, and most of my pca treatment was at Canberra Hospital and urologist I saw here was Dr Haximolla who does about 2 Pca operations a week, and he helped me with a constricted left ureter and I could have lost a kidney if it was not treated. But he could not remove Pca for fear of spreading Pca by surgery, so I had EBRT radiation and ADT that was "standard treatment" which I later found had no chance of working with a Gleason 9 PG tumor. I changed from seeing this urologist to seeing oncologist Dr Pranavan to "see me out" because the initial 2 years of ADT and EBRT has failed so badly, and I expected to die in next few years after 2010.
One man told me he'd had this and had no more problem with Pca after exactly the same treatment I had and this was 10 years after he had it. But his Pca was a small tumour and it secumbed to EBRT ( very strong beams of X-rays ) and his troubles were over. Many cases of Pca like mine are fairly resistant to any radiation.
In 2016 I went to Epworth Hospital Melbourne and saw Dr Bowden for additional "salvation" EBRT to PG because the X-ray machine can shoot beams in many directions to avoid previous beam paths, and they used gel between PG and rectum to avoid further damage to bowels. There was also another doc who did urology who worked with Dr Bowden because the salvation IMRT required 3 "beacons" to be inserted to PG, and this is all mentioned in sites describing IMRT with Calypso method, so Google to findoutabout.
In 2016, in Melbourne, PsMa scans had only just become available and this showed I had Pca spread where none was previously thought to exist. So I got an extra 31Grey to PG and to 2 mets they found. I was first patient in Australia to have a second dose of EBRT to PG where I had not had an RP done.
Epworth is a private hospital all my treatments and scans and costs of travel were about aud $29,000, and Medicare paid up $11,500, but then I don't pay any insurance, and I was told by the staff at Epworth that if I had insurance, the rebate would not have been much more even if I'd paid insurance for many years. Anyway, it was the best available EBRT or aka IMRT in Australia at that time, unavailable in Canberra and the docs here send patients out of town to the big city centers if they cannot give the very best. I would have been a fool not to go to Epworth. Doc said he'd kill all Pca at PG, but the later PsMa scans I had in Canberra ( I have had about 5 now ) when they became available after 2017, showed Pca was still on PG but at reduced level, and it had not spread to local areas. Best RT to my PG may have been brachytherapy with many radioactive gold pellets inserted to PG but that was not available in Canberra and nobody mentioned it would be a good idea but it was much more expensive than any EBRT or IMRT and maybe still not work to kill the Pca at the PG. None of this treatment of PG did anything to kill the many mets that were not found until 6 years after the initial EBRT. So the mets were supressed by ADT until they all mutated to be able to grow without testosterone, or they made their own.
Good luck tocinovin! I just had my simulation yesterday and start my 8 weeks of radiation this coming Tuesday. I have been told by many to exercise a lot to help avoid being tired. A friend just finished his 8 weeks and did well. Best of luck to you!
Its pretty much a piece of cake. The only thing i can add is you will be wanting to pee every 1/2 hr at times or more. It did wear me out after the 39 treatments but at my job i worked weekends so no break at all really. The first 2 years i had to make sure i was near a bathroom after eating. A couple times i meesed up on that. Ewe. After almost 9 years i still have soft BMs. No big deal. Remember everyone is different you may or may not have the same side effects.
i was dx 11 years ago. started with radiation, lupron shots went thru most pills including zytiga. finished with provenge and now back to zytiga. my psa is 47 testosterone is 3. the urologist/oncologist will start something else down the road. i have no suggestions with your case. u got time so just do the plan they have set out ask questions.
Make sure your bladder is full before every treatment and bowel empty and you may want to incorporate a diet of more pastas and breads. RT causes diarrhea and unfortunately many veggies will make it worse. Take naps after your treatment to feel refreshed. RT builds up so you may have a day of fatigue...you should rest that day! Good Luck...my symptoms were minimal..hopefully yours will be too
Radiation was very tiring for me around the third week, add that to Lupron and some days you can't move...Diarrhea was a big problem in fourth week to finish...if that's the case ask DR. for some Lomotil and Megestrol for hot flashes..getting up 6 times a night to pee was a issue for me but everyones different..I found there's a lot they don't tell you about side effects, good luck it will get better but takes time...
1st of all your PSA in the 5+ range is not that high (mine started out at 21 before I had my surgery, Lupron injections, and radiation, which has it now at .01 now that its all done). If you are having radiation treatment then I'm assuming you are taking Lupron injections every 3 mos and have had your sex drive reduced to nothing, along with bouts of depression and short term memory interruptions. You can take the mood elevator, Lexaprop 10 mg, for the latter problems but your sex drive will only return a few months after your final Lupron injection, sorry.
My numbers were similar to yours. At 65, I had a PSA of 7, Gleason of 4 and 3 with 10 of 12 samples cancerous. I had 39 external-beam radiation treatments which dropped PSA to a low of .7. Three years later when the PSA was above 2.7 show I went on Lupron (every 4 months). That was more than 5 years ago and latest PSA is .23. I had no effects from the radiation at the time or later. Fatigue is now my major problem on Lupron. I exercise (especially walking) and have maintained my weight at the same level over those 5 years.
If I have learned one thing on this forum it's that your milage may vary : ) Did the ADT relieve any of the tumor burden?? I had EBRT 8 weeks with no Rectum protection... It was , at most, a large "inconvenience" ( having to have a full bladder and an empty rectum posed some challenges to me as I was already having issues with urinary urgency.... there were times that I was sure I was going to piss on the table. Had a couple of diarrhea accidents along the way but this has self corrected... what has gotten worse is my urinary urgency and bladder emptying ( ALWAYS dribbling...and there is maybe a 60 second window between the time a real urge hits and the time I am GOING to pee irrespective of location... Since I had issues with urgency prior to the RT I can't actually blame it all on the RT.... In all it was not a bad experience. You are wise in doing the ADT first, particularly given the number of positive cores... the smaller the tumor that needs radiating the better the results.... Don't worry unnecessarily about the RT it's not a bad experience... Mine was not fully successful ( or I wouldn't be here) but I refused Brachy and ADT ( brachy because I was assured that my urgency would be compounded and ADT because, well, it was ADT and I could not deal with it at that time...... So now I'm likely to be doing ADT later when doing it earlier " might" have been curative.
TO bacon and wine, (good combo, like ham and seltzer)
Ok I'm confused and I had 39 sessions of radiation of my bed (sofa too) after RPD. We are all different. But my experience was like getting an x-ray at the dentist. No pain, No nuttin, No side effects, no nuttin, no blood no nuttin. However 2 years later it was discovered (through an MRI no pain no nuttin) that there was a stricture of my left urinary tract. So I began the in and out stents for many years and that was nuttin. Doctors still don't know if the stricture was a result of the frying or from several bouts of kidney stones that I had before Pca. Well anyway I don't have a stent in any more and 15% of urine from left kidney and 85% from right kidney. No pain, No nuttin. WE ARE ALL DIFFERENT THANK GOD.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Please advise about treatment
Happy anniversary?
Treatment Decision: Now considering surgery
Update after tests,etc
Active Surveillance Is Over For Me
