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Diagnosed 15/7/2021

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User
Posted 19 Jul 2021 at 17:17

Good afternoon all … the diagnosis has certainly slowed me up and I’m waiting on the bone scan results which are due weds 22nd… currently treading water not knowing what too expect. Got all sorts going through my head. So glad I have found this forum and I’m hoping I can be educated by you good people. Respect to you all 


M

User
Posted 19 Jul 2021 at 18:28

Yes, my age and diagnosis pretty similar to yours. I'm still here 3.5 years later, hoping I'll still be here in 20 or 30 years time. If your bone scan is clear (which with a psa less than 50 it probably will be) then with radical treatment you may be cured.


Quite a few people on this site 10 or 15 years down the line, and don't forget the internet has only been available to most people for 15 to 20 years. So if you took a true random sample you would find your odds are quite good. 

Dave

User
Posted 19 Jul 2021 at 18:42

Will follow your thread i know its difficult at moment but there is light at the end off the tunnel keep positive  things will get better  i am sure its a horrible desease but treatment improvements all the time πŸ‘

User
Posted 20 Jul 2021 at 20:40

No worries were all in this together πŸ‘

User
Posted 19 Jul 2021 at 17:17

Good afternoon all … the diagnosis has certainly slowed me up and I’m waiting on the bone scan results which are due weds 22nd… currently treading water not knowing what too expect. Got all sorts going through my head. So glad I have found this forum and I’m hoping I can be educated by you good people. Respect to you all 


M

User
Posted 19 Jul 2021 at 18:00

Keep positive hope bine scan is clear i was gleeson 9 psa 24.9 just had all clear after 37 sessions off radiotherapy hopefully you have a similar outcome gaz 61

User
Posted 19 Jul 2021 at 18:29
Thanks Martin like you i was gutted high gleeson score and psa hope your bone scan is clear too radiotherapy was ok very few effects hormone therapy bearable good luck keep positive you can do it gaz
User
Posted 19 Jul 2021 at 18:30
Ditto dave sound advice πŸ‘πŸ‘
User
Posted 19 Jul 2021 at 18:38

Hi Dave 


I hope so ..your words are are a massive help…in 48 hours I’ll know what I’m up against


cheers


martin

User
Posted 19 Jul 2021 at 19:02
Thanks Martin πŸ‘
User
Posted 20 Jul 2021 at 11:58

Good luck for tomorrow Martin sure you will be ok  you will learn you treatment options going forward   πŸ€ž

User
Posted 20 Jul 2021 at 18:55
Martin, I was in a very similar situation to you. Diagnosed in 2018 aged 55 with a PSA of 32. Biopsy found T2C G3+4, but a suspicion of undetectable spread to the surrounding lymph nodes because the PSA was anomalously high for what was found in the biopsy. RT in Feb/Mar 2019 with HT six months before and a year after. Now 2 years and 4 months after the end of RT and my most recent PSA was 1.2. Treatment not too bad at all.

You'll get through it.

Best wishes,

Chris
User
Posted 21 Jul 2021 at 22:47

That's poor Martin very frustrating  but hopefully  good news soon 

User
Posted 22 Jul 2021 at 17:30
Glad to hear it, Martin. I think most people (and that certainly includes me) find waiting for test results the most stressful part of the whole experience. Once you know where you stand and have definite plans, it all gets much easier to deal with.

All the best,

Chris
User
Posted 22 Jul 2021 at 20:10

Really good Martin onwards and upwards 🀞

User
Posted 28 Jul 2021 at 20:30

That is sounding like good news. Usual approach now is that the multi disciplinary team (Mdt) look at all the data and then decide on the best treatment. Quite often they can rule some out but can't decide of the ones which are left, which one is best for you. This means they offer you the choice!

Dave

User
Posted 28 Jul 2021 at 21:36

Great news bone scan is clear treatment  is starting  soon full steam ahead  now for a cure 

User
Posted 31 Jul 2021 at 12:51

Gaz,


Glad to see your Bone scan was clear.  I was diagnosed at the end of May this year, my Bone scan also came back clear.


It does feel good to hear a piece of positive news.


Been on Hormones for 6 months, Radiation treatment to start early October,so I am still new to all of this.


Steve

Edited by member 31 Jul 2021 at 12:52  | Reason: Not specified

User
Posted 31 Jul 2021 at 13:05
Good news, Martin. Very best wishes for your treatment.

Chris
User
Posted 31 Jul 2021 at 14:46

Doing ok on hormone treatment odd hot flush bit off weight gain but generally ok  had 3 now less problems the longer you are on them body gets used to them πŸ‘

User
Posted 31 Jul 2021 at 14:49

Doing ok few hot flushes bit off weight gain but generally ok had 3 now and I have been generally ok πŸ‘

User
Posted 13 Aug 2021 at 09:39

Hi gaz yeah definitely

User
Posted 28 Nov 2021 at 15:14

good to hear things are starting soon keep moving forward πŸ‘

User
Posted 04 Jan 2022 at 18:36

I am sure you will get some good feedback πŸ‘

User
Posted 08 Jan 2022 at 16:39
Possibly degarelix, which stops testosterone production immediately.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 19 Jul 2021 at 18:00

Keep positive hope bine scan is clear i was gleeson 9 psa 24.9 just had all clear after 37 sessions off radiotherapy hopefully you have a similar outcome gaz 61

User
Posted 19 Jul 2021 at 18:20

Hi Gaz … I appreciate your reply and  many congratulations , well done… right now this is what I need. Best of luck for the future. Weds can’t come soon enough for me


Martin 

User
Posted 19 Jul 2021 at 18:28

Yes, my age and diagnosis pretty similar to yours. I'm still here 3.5 years later, hoping I'll still be here in 20 or 30 years time. If your bone scan is clear (which with a psa less than 50 it probably will be) then with radical treatment you may be cured.


Quite a few people on this site 10 or 15 years down the line, and don't forget the internet has only been available to most people for 15 to 20 years. So if you took a true random sample you would find your odds are quite good. 

Dave

User
Posted 19 Jul 2021 at 18:29
Thanks Martin like you i was gutted high gleeson score and psa hope your bone scan is clear too radiotherapy was ok very few effects hormone therapy bearable good luck keep positive you can do it gaz
User
Posted 19 Jul 2021 at 18:30
Ditto dave sound advice πŸ‘πŸ‘
User
Posted 19 Jul 2021 at 18:38

Hi Dave 


I hope so ..your words are are a massive help…in 48 hours I’ll know what I’m up against


cheers


martin

User
Posted 19 Jul 2021 at 18:42

Will follow your thread i know its difficult at moment but there is light at the end off the tunnel keep positive  things will get better  i am sure its a horrible desease but treatment improvements all the time πŸ‘

User
Posted 19 Jul 2021 at 18:43

Cheers Gaz
Much Appreciated πŸ‘πŸΌI’ll update as soon as get the call


Martin

User
Posted 19 Jul 2021 at 19:02
Thanks Martin πŸ‘
User
Posted 20 Jul 2021 at 11:58

Good luck for tomorrow Martin sure you will be ok  you will learn you treatment options going forward   πŸ€ž

User
Posted 20 Jul 2021 at 17:45

Cheers gaz… nice to have someone who has experienced this looking out for me…will post the results as soon as I get em


Martin

User
Posted 20 Jul 2021 at 18:55
Martin, I was in a very similar situation to you. Diagnosed in 2018 aged 55 with a PSA of 32. Biopsy found T2C G3+4, but a suspicion of undetectable spread to the surrounding lymph nodes because the PSA was anomalously high for what was found in the biopsy. RT in Feb/Mar 2019 with HT six months before and a year after. Now 2 years and 4 months after the end of RT and my most recent PSA was 1.2. Treatment not too bad at all.

You'll get through it.

Best wishes,

Chris
User
Posted 20 Jul 2021 at 20:40

No worries were all in this together πŸ‘

User
Posted 20 Jul 2021 at 20:49

Hi Chris 


Thanks for the reassurance much appreciated. I’m really not sure what to expect tomorrow…. I’m going with ‘what will be , will be’.


martin

User
Posted 21 Jul 2021 at 18:37

Well today’s call with the results of my bone scan were disappointing.. apparently new software installed and Sheffield isn’t compatible with Doncaster’s and the scans were unreadable………. They will call me back next weds and in the meantime start taking the bicalutamide…… so I don’t know where it’s spread and no idea of possible treatment plans…… not one of my best days…. Angry, frustrated and disappointed….we go again next week… hopefully 

User
Posted 21 Jul 2021 at 19:33

That is annoying. Can they get the computers sorted or will you need to repeat the scan? If they need to re do the scan, get advice on whether to start the bicalutamide. 

Dave

User
Posted 21 Jul 2021 at 22:47

That's poor Martin very frustrating  but hopefully  good news soon 

User
Posted 22 Jul 2021 at 16:38

evening gaz and gents. Had a call from my consultant this pm. He was very apologetic and had asked the senior radiologist to check my bone scan… all he could see was some inflammation around my lower back and no spread. I know it’s not official but I’ll take it as a win… fingers crossed I get the same from Sheffield oncology next weds…. Also said to carry on taking the hormone tablets and will book me in for injection in a fortnight


its been a better day


martIn

User
Posted 22 Jul 2021 at 17:30
Glad to hear it, Martin. I think most people (and that certainly includes me) find waiting for test results the most stressful part of the whole experience. Once you know where you stand and have definite plans, it all gets much easier to deal with.

All the best,

Chris
User
Posted 22 Jul 2021 at 19:06

Got to agree with you Chris… treading water I call it… just got to keep busy … I feel a lot better today even though I know it’s unofficial 

User
Posted 22 Jul 2021 at 20:10

Really good Martin onwards and upwards 🀞

User
Posted 28 Jul 2021 at 19:22

Bone scans have come back clear.. been on hormone tabs for a week … injection booked for the 9th august and have been referred to Sheffield for radical treatment 


good news πŸ‘ŠπŸΌ

User
Posted 28 Jul 2021 at 20:30

That is sounding like good news. Usual approach now is that the multi disciplinary team (Mdt) look at all the data and then decide on the best treatment. Quite often they can rule some out but can't decide of the ones which are left, which one is best for you. This means they offer you the choice!

Dave

User
Posted 28 Jul 2021 at 21:36

Great news bone scan is clear treatment  is starting  soon full steam ahead  now for a cure 

User
Posted 31 Jul 2021 at 12:51

Gaz,


Glad to see your Bone scan was clear.  I was diagnosed at the end of May this year, my Bone scan also came back clear.


It does feel good to hear a piece of positive news.


Been on Hormones for 6 months, Radiation treatment to start early October,so I am still new to all of this.


Steve

Edited by member 31 Jul 2021 at 12:52  | Reason: Not specified

User
Posted 31 Jul 2021 at 13:05
Good news, Martin. Very best wishes for your treatment.

Chris
User
Posted 31 Jul 2021 at 13:37

Hi gaz


thanks for your reply.. how you getting on with the hormone treatment… any side effects? 

User
Posted 31 Jul 2021 at 14:46

Doing ok on hormone treatment odd hot flush bit off weight gain but generally ok  had 3 now less problems the longer you are on them body gets used to them πŸ‘

User
Posted 31 Jul 2021 at 14:49

Doing ok few hot flushes bit off weight gain but generally ok had 3 now and I have been generally ok πŸ‘

User
Posted 01 Aug 2021 at 08:29
Don’t forget to use the one to one support at Prostate Ca uk,you can speak to someone who’s gone through similar and ask all the questions you want
User
Posted 08 Aug 2021 at 09:51

How's things going martin hope you are doing ok  the radiotherapy seems to pass quickly  had 37 fractions  how many do you need  there is light at the end off the tunnel was shocked I had gleeson 9 after the radiotherapy my first PSA reading was 0.06   the latest 0.01 feeling ok just aches and pains after the radiotherapy  hopefully continue to feel ok  I know up to press I am lucky not everyone is but hopefully you will move on and be ok too good luck gaz

User
Posted 09 Aug 2021 at 09:48

Hi gaz


im just waiting to go in for my first hormone injection at 1015 today… radiotherapy looks like it will start in November. Weston Park are calling me weds morning to confirm dates. 
Im hoping things will get back to some normality in the run up. I’m feeling positive and glad the ball is rolling finally. 
how are you doing sir?


 

User
Posted 09 Aug 2021 at 10:41

Glad to hear things are going to plan I am doing really well hopefully it continues good luck with your treatment πŸ‘

User
Posted 09 Aug 2021 at 10:44

know Sheffield well don't live to far away meet for a drink some time 

User
Posted 13 Aug 2021 at 09:39

Hi gaz yeah definitely

User
Posted 20 Aug 2021 at 07:42

How's things going martin  hopefully the h/t not causing to many issues πŸ€”

User
Posted 30 Aug 2021 at 10:37

how's things martin hopefully you ars still doing ok πŸ‘

User
Posted 31 Aug 2021 at 06:43
Hi Chris I slept like a log but got really bad lower back pain this morning…..other than that feeling ok
User
Posted 28 Nov 2021 at 15:10

Finally got a date for Radiotherapy pre assessment ( think that’s the right description). 6th January it all starts after a 2 month delay… since my last update I’ve been trying to keep life normal… not been easy. Keep fighting chaps!

User
Posted 28 Nov 2021 at 15:14

good to hear things are starting soon keep moving forward πŸ‘

User
Posted 03 Jan 2022 at 18:41

UPDATE


Had my 2nd three month jab last Thursday and bloods taken for my first psa since diagnosis in July… get results tomorrow…. Fingers crossed chaps


Also had to do a covid test today ready for my   CT scan this Thursday at Weston park.  Me n the mrs haven’t seen anyone since before Xmas so covid shouldn’t be a problem. 


keep fighting gentlemen I’ll update on the psa tomorrow


regards Martin 

User
Posted 03 Jan 2022 at 19:29

Good luck for tomorrow martin sure the hormone therapy will bring your PSA down πŸ‘

User
Posted 03 Jan 2022 at 20:20

Cheers gaz .. you ok mate

User
Posted 03 Jan 2022 at 21:32

Yes not too bad martin good luck tomorrow πŸ‘

User
Posted 04 Jan 2022 at 17:08

Just had my results of psa test. No change….my testosterone level is being checked and will find out more on Thursday. Will be having further scans and possibly changing my hormone injections. 


anyone been in this situation? I really don’t know what to think now.

User
Posted 04 Jan 2022 at 17:11
What was the actual PSA reading, Martin?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2022 at 18:00

Sorry martin you haven't had the news you wanted sounds like they will change your hormone treatment  Lynn will know loads more than me am I right your starting PSA test was 33  gaz 

User
Posted 04 Jan 2022 at 18:11

Hi gaz, Lyn 


original psa was 33 .. nurse just said the results were virtually the same.


 

User
Posted 04 Jan 2022 at 18:15

I think they will change your hormone therapy I am on decapeptyl not sure what your on  loads on here much more informed than me will respond I am sure  πŸ‘

 
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