My dad has been diagnosed at the age of 58

User

Posted 01 Jun 2019 at 21:50

The news has been devastating for our family as what we were considering a mere benign cyst turned out to be the prostate carcinoma.

PSA level was 7.58 measured before biopsy and biopsy results confirmed cancer with gleason 4+4. Onco recommended bone scan which turned out ok. We are still waiting for MRI results to confirm the spread of the cancer. My query is that doctor has askes to start with treatment right after MRI diagnosis. He has recommended a combo therapy of ADT and EBRT, but the dosage is something that confuses me. ADT injection of 22.5 mg every 3 months and 1st radiation session after 3 months of 1st adt injection. Does this sound ok? I mean does radiation actually start this late?

Also, my father currently has urine catheter in due to prostate enlargement. Now since doc hasn't recommended surgery, will we be able to remove catheter at any stage during this treatment? Please help!!

User

Posted 02 Jun 2019 at 00:53

Whether the dosage is correct depends on which hormone they are recommending; Zoladex is 10.8mg every 12 weeks and Prostap is 11.25mg - Decapeptyl is about the same but there is a 6 month dose of 22.5mg so perhaps your dad is being recommended to have that? Have they mentioned another hormone that he would need to take by tablets for the first couple of weeks?

Research suggests that the longer he is on HT before the radiotherapy begins, the more likely it is to be successful. In the UK, 6 months is a bit more common now than 3 months but hospitals do both.

The HT should start to starve the cancer very quickly which will hopefully mean the catheter is temporary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2019 at 01:04

Thanks a lot for your response. Clears up a lot of confusions. The hormone that he has been prescribed is leoprolide acetate 22.5 mg every 3 months. Now that you have mentioned that a 3 months delay in start of radiations therapy is actually beneficial, it is a bit of a relief.

I have two more questions. There are still 10-15 days untill he gets his first hormone dose. Is it too late considering the gleason score is 8 right now? Doc says Pca grows very slowly but I'm still concerned lest it spreads even before the treatment starts?!

Also he's experiencing a lot of pain in rectal and pelvic area despite no bone invasion. Does HT acts to reduce the pain as well?

Thanks

User

Posted 02 Jun 2019 at 07:46

Leuprolide acetate, like many HT drugs, does the opposite of what is intended when you first take it, i.e. it causes a flare in testosterone before it stops testosterone production. To prevent this causing any problems (especially any bone pain if he had bone mets), you normally take a 3-4 week course of a testosterone blocker which stops cells being able to use testosterone such as 50mg bicalutamide daily, and start the Leuprolide in the middle of this 3-4 week course. The testosterone blocker itself is also hormone therapy (and sometimes, that's all that's used). This is why Lyn asked if he's on tablets for the first few weeks. A two week period is insignificant in any case for prostate cancer growth, which is much slower than many other cancers, even for the most aggressive gleason scores, which yours isn't.

HT will reduce the size of the prostate including any cancer cells. If it's significantly enlarged and that's causing pain, it should reduce. In your case, it might also be related to the catheter pressing against enlarged prostate. Pain from prostate is sometimes not well localised and can feel like it's coming from anywhere in the pelvis. The pain may be nothing to do with the prostate. I had some lower back pain which I was worried might be related - when they checked in an MRI scan, it turned out to be a dehydrated disc, so completely unrelated.

User

Posted 02 Jun 2019 at 13:48

Originally Posted by: Online Community Member

leoprolide acetate 22.5 mg every 3 months

You might want to ask them to confirm this - it is double the recommended dose. I am a cynic; in your country would a higher dose cost more?

The 3 month wait should not concern you; the purpose is to reduce the size of his prostate so that it is easier to zap. The medics are also probably hoping that he will get off the catheter as

1. it is more difficult to give RT with a catheter in ... he needs a full bladder during each fraction (session) and

2. RT can make urinary retention worse.

Edited by member 02 Jun 2019 at 13:51 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2019 at 15:15

My guy was on ht for three months then 33 sessions of rt. He did well and treatments have varied since with a year or so of no treatment at all. He has had it for 8.5 years and is still doing well tho now on a different tablet combined with a steroid and three monthly Zoladex injections. Don't be too worried - the treatments are tailored to each patient and I hope your Dad will feel better once it is all started. There can be fatigue for some people and it is important to keep as active as possible and to try to live as normal a life as possible. It is a journey but everyone on here will offer support if needed.

User

Posted 02 Jun 2019 at 15:51

Zain

I had a supra pubic catheter fitted prior to RT as insurance against an on going stricture causing retention. He could have a flip flo valve fitted to his urethral catheter and simply turn the tap off to fill his bladder prior to each session. It would be important to make sure the tap is closed before each session so the bladder has a similar amount of urine in it for the RT treatment.

Thanks Chris

User

Posted 02 Jun 2019 at 16:17

Yes, he has had that catheter for some time particularly while traveling. Thanks Chris!

User

Posted 02 Jun 2019 at 16:22

The concern right now or atleast untill the treatment starts, is the pelvic pain. Bone scan shows no tumor in the bone still he cannot sit upright. Currently we are on diclofenac for pain relief but the effect is very temporary.

Also, bone scan showed a little hold up of radioactive tracer in right kidney. Does this mean the tumor has traveled to the kidney or the prostate itself is pressing on it due to swelling?

User

Posted 02 Jun 2019 at 16:57

The prostate can't press on the kidney; the kidney is much higher up in the body.

Regards,

Chris

User

Posted 02 Jun 2019 at 17:26

Zain

I am currently on anti biotics for a catheter related infection, it does cause discomfort across the whole pelvic area, not had enough for needing pain killers. In the UK we have a couple of gels for catheter use, they are instilagel and hydrocaine , they contain lubricant, antiseptic and local anesthetic, when I had a urethral catheter I would squeeze some gel down the eye of the penis at the side of the catheter. A large catheter can be particularly uncomfortable bit like a nagging toothache. Hope you find a resolution soon.

Thanks Chris

User

Posted 02 Jun 2019 at 18:20

Originally Posted by: Online Community Member

Also, bone scan showed a little hold up of radioactive tracer in right kidney. Does this mean the tumor has traveled to the kidney or the prostate itself is pressing on it due to swelling?

The Technetium isotope used in bone scans is only relevant when taken up in bones - it is absorbed by fast growing bone, not by prostate cancer itself. It can't show soft tissue mets.

Normally, they try and get you to drink enough water to pee it out before the scan so it doesn't show up elsewhere, but maybe he still had some in a kidney, but it wouldn't show up a prostate cancer met in a kidney. Maybe that kidney doesn't drain into its ureter very quickly - that might cause some pain.

User

Posted 02 Jun 2019 at 19:41

Thanks for the reply. Hopefully the upcoming MRI will make things more clear..

User

Posted 03 Jun 2019 at 21:47

The kind of pain he is experiencing constantly is kind of a nagging ache or a dull pain not too much. But he just can't sit upright on his buttocks. Anyone who has an idea why is it so or what could be the possible reason for this pain?

User

Posted 13 Jun 2019 at 15:43

The pain is getting worse day by day. We are done with MRI and the results are due on Saturday. We have been visiting multiple urologists etc to seek their opinion on pain but no use.

Did anyone else experience any such condition? Is prostate cancer really this painful considering there is no metastasis in the bones shown by bone scan?!

Ultrasound showed a mild hydronephrosis in right kidney but does it really cause this much pain which is so spread out in the whole pelvis? We have had a urine culture as well as to see if catheter related infection is the cause, waiting for its results. He is also feeling very week and low on energy as is totally bed ridden and doesn't walk around much.

Please guide and help if you can!

User

Posted 13 Jun 2019 at 16:32

Prostate cancer doesn't generally cause any pain - not unless it's metastasised, anyway. Is there any reason to believe that the pain is prostate related?

Best wishes,

Chris

User

Posted 13 Jun 2019 at 16:46

No there isn't. The pain actually increased dramatically after TRUS biopsy.

To be honest i think biosy related infection or a urinary tract infection is the cause since he has a foley catheter on for about 2 months now.

User

Posted 28 Jun 2019 at 08:08

Hi, I am sorry to hear the sad news. My dad was also aged 58 when he was diagnosed with stage 4 prostrate cancer. You are not alone, everyone on this forum is here because the same thing, dreaded cancer. But if you want to talk just let me know :)

User

Posted 26 Jul 2019 at 12:12

Sorry to hear of your fathers problems and hope all comes out for the best.

I assume he has had the results of his MRI now, but with low PSA, clear bone scan and, though a higher Gleeson score than you would like, he seems to be in a strong place for successful treatment options.

I too was diagnosed at the age of 58, Stage T3a, PSA 13, Gleeson 7 (3-4) and 7 out of 10 samples came back positive (70%). Finally went with HDR Brachy combined with 6 months hormone therapy and 23 doses of external radiotherapy afterwards.

Almost 2 years on I have not had any incontinence issues at all, erection disappeared after 4 months but returned after 15 months with help from Viagra and pump. Pump no longer needed and Viagra down to 25 mg from 100mg now.

I am still working, get much more tired these days, but only later in the day. Other than that seem to be pretty fit. My PSA is slowly dropping, taken 2 years but now finally at 0.1 (Feb 2019).

Good luck and hope all goes well for your father.

User

Posted 17 Aug 2019 at 19:34

Hey, sorry for being away for so long.

My father had a TURP surgery to clear out the urine obstruction and it worked. Catheter was removed and pain diminished which doctor said was due to the catheter pressing against rectal nerves. Everything was working out to be ok untill one day when he again had urine retention and it became really painful. Catheter again and then he had a cystoscopy which diagnosed that this time obstruction was due to the fallen off dead tissues because of TURP.

Nonetheless, its been a month now since that. Doc suggests chemotherapy as MRI said that the tumor is locally advanced i.e. It has reached nearby lymph nodes but not the organs or bones. Gleason is 9.

Since we changed the doctor, the new one rules out hormone and radiation therapy and suggests chemo instead. Is it normal? Also, how much time do we have before it is absolutely necessary to start chemo?

How aggressive is this tumor in terms of growth, as he has started developing bowel problems etc and getting weaker day by day.. Probably because of low physical activity and food intake..?!

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