34yo diagnosed today

User

Posted 25 Nov 2021 at 18:20

I was T3a and gleason 7 on diagnosis. After my surgery, they upgraded to T3b and gleason 9.

A year later I needed 18 months of hormone therapy and 33 cycles of radiotherapy. Just before this course of treatment, a PSMA scan picked up some cancer in two lymph nodes.

My psa is now <0.006, the lowest that can be measured.

So don't lose hope. Everything to play for.

User

Posted 08 Dec 2021 at 23:26

Hi Kieran, how did you get on?

User

Posted 10 Dec 2021 at 17:15

Originally Posted by: Online Community Member

Hi Kieran, how did you get on?

I am still awaiting the PSMA scan results. I have a meeting with my nurse specialist Thursday 16th Dec for these. In the meantime I have started on HT which has been bicalutamide 50mg for 21 days and had my first Leuprorelide acetate (Prostap) injection on Weds 8th Dec. Still a bit up in the air with other treatment options whilst I wait on the PSMA scan outcome.

All the best

User

Posted 30 Dec 2021 at 17:54

Hope your scan results went okay Kieran. It sounds like you’re following a very similar path to my dad, he’s just had his PSMA Pet CT and is in very similar position to you (identified abnormality on bone scan). Fingers crossed for you

User

Posted 02 Jan 2022 at 01:32

God bless and good luck Kieran: that's a tough draw. With any luck they'll want to cut it out as well as radiate. Your youth would help meet the functional challenges all that treatment would create. Fingers crossed for you. There are some very ill men on here who seem to go on forever: I certainly draw strength from them and hopefully you can too. Good luck.

User

Posted 03 Jan 2022 at 20:33

Hi all,

Hope you all had a great Christmas and New Year. My PSMA scan showed spread to the mesorectal lymph nodes which unfortunately means surgery isn't an option due to their troublesome location. The next step for me is meeting with the Radiotherapy specialist on Feb 4th to discuss the options going down that path alongside systemic treatment in tablet form. The good news is no spread to bones or organs.

I have my 2nd Prostap HT injection Jan 6th and have been having the flushings associated with them but so far nothing else although early days!

Still in good spirits and aware that 2022 will bring challenges but ready for them.

Cheers

User

Posted 07 Feb 2022 at 11:22

Hi all, hope everyone is doing ok.

Thought I'd update my progress as it's been a while. I've now been on Prostap since Dec 8th and it has seen my PSA level drop down to 2.4 (23.7 on diagnosis). I have been generally ok on it other than pretty bad night sweats which have made sleeping very much up and down... not sure I can do much about that though. For anyone else struggling I bought some gel pads that you can refrigerate and pop them under the pillowcase, they are good and only 12-15 quid off Amazon.

I had meeting with oncologist 4th Feb and as of this week I will be starting Abiraterone Acetate (Zytiga) with a view to beginning radiotherapy in a few months time. RT will be in the form of 8 weeks or 4 weeks at a stronger level, no decision has been made on this yet.

Anyone who has gone through RT, how did you find the whole process and any tips and how to prepare for/deal with the side effects I may experience. Same goes for the Zytiga... any experience/help much welcomed.

All the best

User

Posted 07 Feb 2022 at 11:42

Hi Kieran,

Good to hear from you. Glad things are happening and that your PSA has dropped so much.

Cant help you with regards RT I’m afraid, but really wish you all the very best for when it comes around.

Take care

Elaine

User

Posted 07 Feb 2022 at 12:01

RT is an easy and straight forward process but the side effects get more pronounced over te weeks. I had 6 gyes over 6 weeks and felt unwell at the end and looked even worse. 3 months on all is good

User

Posted 07 Feb 2022 at 21:16

Hi K - see my Bio for RT experience/tips etc etc (any specific q's plse ask). Obviously it will affect each person differently but I got through it all pretty well (bar the odd mishap which were mainly self induced!). Still on HT and expect that to continue till at least circa October (12 months post RT completion); all seems to be going to plan to date.

Cheers,

Nick

User

Posted 07 Feb 2022 at 22:27

I had 10 RT sessions which were straight forward enough but did get pain in the nether regions due to a catheter. Once that was taken out it was fine and I didn't show any side effects.

Ztyga got stopped as I had a tumour growing hence the RT. I was on this medication for a while. The biggest complication was dexamethsone which replaced prednisone. I was on this for too long causing my adrenal glands stopping cortisol, so be very wary of steroids, they do the job but on long period of time I put on loads of weight. When I stopped this medication the oedema nurse informed me I has lost 3 inches off my swollen feet! I still get hydro cortisone but my clothes fit me again.

Replacing zytiga due to the tumour, I got put on olaparib which for over a year has controlled my cancer well with an average PSA of 0.02. Prior to the tumour the zytiga worked for several months but I hear of many on this medication for the long term.

Hope this answers some questions and I wish you all the best with your treatment

User

Posted 09 Feb 2022 at 00:28

Hi Kieron

See my bio. My OH was on Abiraterone for a year from Nov 2020. It was excellent. First 3 months took a bit of adjusting to with hot flushes etc but the side effects were minimal and he maintained very good levels of activity. Wish he was still on it. A far kinder treatment than chemotherapy. Wishing you the very best on it.

Regards

Sharon

User

Posted 29 Jun 2022 at 09:46

Morning all, just thought I'd post an update of the past few months.

I recently completed a 20 session Radiotherapy cycle at the Beatson hospital in Glasgow (finished 27/6/22). Staff are incredible there 👏. I've tolerated it pretty well. Standard side effects like frequent urination (a lot) and loose bowels about the worst of it although I realise its early days re: side effects so see what happens on that front. Toughest thing is getting proper rest at night as I'm up 4 or 5 times to urinate...

I remain on Abiraterone Acetate and the monthly Prostap injections, these are doing their job as my recent PSA level mid June 22 was 0.1.

I have a follow up with the Oncologist in 8-10 weeks post RT so will find out next steps from there.

I hope you are all doing well.

User

Posted 29 Jun 2022 at 14:23

Great update K.

Really pleased to see treatment has gone well for you and PSA has dropped even further. Long may it continue. Wishing you all the very best

User

Posted 29 Jun 2022 at 18:03

Sounds like treatment is working really well K. Best wishes.

Ido4

User

Posted 05 Jul 2022 at 11:28

Hi K, glad you have completed RT successfully. I’m about to have RT at Beatson centre later this year, do they provide any sleeping pills to aid sleep or is that not an option?

User

Posted 08 Aug 2022 at 10:25

They didn't offer any meds to aid with sleeping although I'd say they would give you something if you were really struggling. I slept poorly throughout my RT - I was up to pee 2 or 3 times a night but that's now settled 6 weeks on, sleeping loads better and frequency of urination now settled.

All the very best with your treatment at the Beatson. The staff are amazing - you're in good hands.

Regards

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