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Worried and scared

User
Posted 20 Sep 2015 at 13:35
Hi , I'm 48 and been diagnoised with t3 that has spread to nodes on the 3rd of September . My Gleason score is 9 . I've been given hormone drugs and have started taking them after I bank sperm .

In totally shock

Im going to see doctor on Thursday to talk about chemo .

Any advice and support would be great as feeling upset and stll in shock

User
Posted 20 Sep 2015 at 17:43

Hello Gary and welcome from me too.
Sorry you've had to join us but glad that's it's us you've turned to.

Diagnosis of PC is a massive shock, probably one you weren't even considering even if you were having bladder problems, so when you hear those dreaded words fear drives straight forward thinking right out of the window.

Firstly, don't panic. There are many and varied options out there.
As Mo says there are a few men on here who have been in your position and they continue to get on with their lives and adjust as necessary.

Your doctors are on the ball but you can help yourself by looking at the Toolkit. At the very least it will help you with information when forming questions to ask at the next appointment.

Always take a notebook and pen, and preferably somebody else with you. You will never remember all the answers otherwise, also - if you don't write them down to take with you you'll kick yourself on the journey home when you remember something you meant to ask.

As has already been said. We are here for you. No question is silly or selfish. If it's something important to you then it's something members will want to reassure you about and answer you on.

Where you are now is a road that everyone, to some degree at least, has travelled. We won't all have the spread but we've all experienced the fear when first diagnosed, so we do know how you feel.

I'm glad you've found us. Keep in touch with us. We're good with the shoulder props!!

We can't control the winds - but we can adjust our sails
User
Posted 20 Sep 2015 at 16:19

Afternoon Gary and welcome to the club no one in their right mind would want to join....I'm 51, T2c, G6 and slated for surgery at some point over the next 6-8 weeks.... There's lot of good folks on here, and download the toolkit, lots of info in there which will help to lift the fog a little....the only pieces of advice I can give is give yourself time to take it all in and take someone with you to every appointment

Duncan

User
Posted 20 Sep 2015 at 16:44
Gary

I am so sorry you find yourself here but welcome you to our band of Men with this disease and us Women who do our best to support them,

You say you are going to your doctor to discuss chemo on top of the HT, this is probaby a positive thing athough it may not seem like it to you now.

In the limited information you have given you could try looking at a few profiles on here look on the members tab and search the user name irun your histology is very similar to his from what I can see, He has also had early chemo treatment and has achieved so much he is quite the inspiration you may need just now. Also check out SiNess for all the same reasons.Si is a great friend of mine and is always open to discussing the potential merits of early chemo.

As Chris says you can ask absolutely anything here there are no hidden agendas or taboo subjects.

I wish you all the very best

xx

Mo

User
Posted 20 Sep 2015 at 16:47
Hi chris ,

Hospital said that surgery wouldn't cure the cancer as it's spread so offered chemo . I have a bone scan on Thursday

It's all happened so quick

Thank you for advice

User
Posted 20 Sep 2015 at 18:01
Hi Gary,

I was really naive until I found this forum, it's really helped me understand the results I had. You'll receive a lot of support and wisdom from people on here and there isn't a silly question to ask. Whatever you want to know someone will probably have the answer or be able to point you in the right direction.

Best wishes

Arthur

User
Posted 20 Sep 2015 at 18:31

Hi Gary,

 

I'm also posting to add my support. As others have said, it is so hard to take in after diagnosis, it's like having your world turned upside down and everything becomes uncetain. That is normal to feel like that because of the shock. When you feel more settled, it is a good idea to educate yourself as much as you can regarding the disease and options, the PCUK publications are a great start and will stand you in better stead of having informed decisions with your medical team. Recent research has suggested HT with early chemo depending on the spread of the disease is very beneficial instead of leaving chemo til later, so sounds like your onco is up to speed with that. Many men here have been offered clinical trials to test new treatments or combinations of treatment, there are lots of options. One of the men in my local PCa support group was diagnosed with advanced disease and is still  here ten years on. Do keep posting, there is always someone who will respond !

 

Best wishes, Fiona.

User
Posted 20 Sep 2015 at 20:36
Hi Gary

Welcome to the forum. You have done the right thing in joining the forum as there are many wonderful and kind people here. Although it is a shame that it is PCa that has brought everyone together.

I haven't had to undergo chemo or hormone therapy so I am not qualified to comment on those. However, there are many on the forum that do have experience and will no doubt come forward.

I just wanted you to know you are not alone. One thing I do know from experience is the upset and shock you feel when told you have PCa.

Wishing you all the best.

User
Posted 20 Sep 2015 at 20:43
Hi Gary, I am 50 diagnosed a year ago T4 Gleson 9. I am on hormones and had chemo and radiotherapy afterwards, yes we are all in a crap place but there is plenty of life to be lived and the treatment to reduce effects of cancer have been ok in the main, please don't dispair, lots of us here ready to help you when you need us(or even if!) .

Make sure you write down any questions that you have for the doc in advance and their responses as it's hard to think straight at times. Ask all the why are you doing this and why not that and what if and when etc etc.

Our thoughts are with you.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Sep 2015 at 23:44

Hi Gary,

 

Just want to offer my support. I am 6 months from my prostate removal. I was T3 Gleason 7.

Gather as much information as you can, listen to the advice and make your decisions after you are armed with all the information. The tool kit and the prostate cancer nurse advisors are a great resource. Don't be afraid to ask questions. Good luck with this undulating journey.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 27 Sep 2015 at 18:04

Best of luck with the results Gary

Bri

User
Posted 29 Sep 2015 at 08:44

Good luck in advance Gary for the results on the 6th. ~Hope they are encouraging for you and your family

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Oct 2015 at 22:45
Hi Gary,

Thinking of you and keeping fingers crossed for your results

Louise x

User
Posted 09 Mar 2016 at 13:07
Gary

Don't know about winning the first round go for a KO!

Great news, best wishes

Arthur

User
Posted 05 Oct 2016 at 17:19

I'm pretty sure you are entitled to ask for a second opinion and I don't see why your scans should be refused you. The only fly in the ointment I can see is would it all be organised for 18th October.
I also wonder whether (even though it is private) you will still need a referral letter from your consultant.

If you are happy to pay for a private appointment, then I would ring your consultant's secretary and ask what the procedure is for obtaining the scans (and a referral letter if that's necessary)

*******

We can't control the winds - but we can adjust our sails
User
Posted 05 Oct 2016 at 17:51

I think you are extremely rare. Chemo is usually given to men with incurable PCa, 35 sessions of RT is a curative treatment plan usually only offered to men with a chance of cure so to be offered both is odd. It might be that the RT was being offered as part of a trial in which case a second opinion is not necessarily going to help as another hospital may not have the same trial going, and private health can't often buy men places on trials.

It might be more useful to clarify why you were offered both - what do they think the benefit would be to you of having a curative treatment after chemo? If it is part of a trial, a conversation with the trial nurses might be more helpful than the horrible specialist :-(

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

User
Posted 28 May 2018 at 10:47

Congratulations on you baby and good luck for the future.

 

barbara

 

Show Most Thanked Posts
User
Posted 20 Sep 2015 at 15:03

Hello Gary
Lots of people will be along to help you and support you . It can be quiet over the weekend . Ask anything you want that is in your head and someone will be able to help you I promise .
I am 48 , T4 , Gleason 9 , Lymph spread , 12 weeks post radical - prostatectomy . In the same boat as you that's leaking a bit mate . Have they offered RP or is it now too late for that ? Has Chemo been offered already . Let us all know how you get on and good luck
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Sep 2015 at 16:19

Afternoon Gary and welcome to the club no one in their right mind would want to join....I'm 51, T2c, G6 and slated for surgery at some point over the next 6-8 weeks.... There's lot of good folks on here, and download the toolkit, lots of info in there which will help to lift the fog a little....the only pieces of advice I can give is give yourself time to take it all in and take someone with you to every appointment

Duncan

User
Posted 20 Sep 2015 at 16:44
Gary

I am so sorry you find yourself here but welcome you to our band of Men with this disease and us Women who do our best to support them,

You say you are going to your doctor to discuss chemo on top of the HT, this is probaby a positive thing athough it may not seem like it to you now.

In the limited information you have given you could try looking at a few profiles on here look on the members tab and search the user name irun your histology is very similar to his from what I can see, He has also had early chemo treatment and has achieved so much he is quite the inspiration you may need just now. Also check out SiNess for all the same reasons.Si is a great friend of mine and is always open to discussing the potential merits of early chemo.

As Chris says you can ask absolutely anything here there are no hidden agendas or taboo subjects.

I wish you all the very best

xx

Mo

User
Posted 20 Sep 2015 at 16:47
Hi chris ,

Hospital said that surgery wouldn't cure the cancer as it's spread so offered chemo . I have a bone scan on Thursday

It's all happened so quick

Thank you for advice

User
Posted 20 Sep 2015 at 17:20
Thanks for the messages . I forgot to say psa was 20 in march and came down to 18 .

Will update later I the week

One thing . Getting up to use the toilet a lot at night .. One of the reasons I went to the g.p and have ended up finding the dreaded c

Any help or tips on toilet habits given tamsulisin

User
Posted 20 Sep 2015 at 17:24

Hi Gary
Yes im a relative newbie on here also despite having travelled so far . Ive read on the toolkit that surgery is not an option for locally advanced prostate cancer normally . The publications on here are awesome and you really should take the time to plough through them . If you look on the information banner at the top of the home page and then click publications , you will find the Prostate Cancer UK Toolkit. Quite a lot of info but it all becomes clear "ish" if you take the time .
We can all help you find the path
Best Wishes Chris

If life gives you lemons , then make lemonade

User
Posted 20 Sep 2015 at 17:43

Hello Gary and welcome from me too.
Sorry you've had to join us but glad that's it's us you've turned to.

Diagnosis of PC is a massive shock, probably one you weren't even considering even if you were having bladder problems, so when you hear those dreaded words fear drives straight forward thinking right out of the window.

Firstly, don't panic. There are many and varied options out there.
As Mo says there are a few men on here who have been in your position and they continue to get on with their lives and adjust as necessary.

Your doctors are on the ball but you can help yourself by looking at the Toolkit. At the very least it will help you with information when forming questions to ask at the next appointment.

Always take a notebook and pen, and preferably somebody else with you. You will never remember all the answers otherwise, also - if you don't write them down to take with you you'll kick yourself on the journey home when you remember something you meant to ask.

As has already been said. We are here for you. No question is silly or selfish. If it's something important to you then it's something members will want to reassure you about and answer you on.

Where you are now is a road that everyone, to some degree at least, has travelled. We won't all have the spread but we've all experienced the fear when first diagnosed, so we do know how you feel.

I'm glad you've found us. Keep in touch with us. We're good with the shoulder props!!

We can't control the winds - but we can adjust our sails
User
Posted 20 Sep 2015 at 18:01
Hi Gary,

I was really naive until I found this forum, it's really helped me understand the results I had. You'll receive a lot of support and wisdom from people on here and there isn't a silly question to ask. Whatever you want to know someone will probably have the answer or be able to point you in the right direction.

Best wishes

Arthur

User
Posted 20 Sep 2015 at 18:31

Hi Gary,

 

I'm also posting to add my support. As others have said, it is so hard to take in after diagnosis, it's like having your world turned upside down and everything becomes uncetain. That is normal to feel like that because of the shock. When you feel more settled, it is a good idea to educate yourself as much as you can regarding the disease and options, the PCUK publications are a great start and will stand you in better stead of having informed decisions with your medical team. Recent research has suggested HT with early chemo depending on the spread of the disease is very beneficial instead of leaving chemo til later, so sounds like your onco is up to speed with that. Many men here have been offered clinical trials to test new treatments or combinations of treatment, there are lots of options. One of the men in my local PCa support group was diagnosed with advanced disease and is still  here ten years on. Do keep posting, there is always someone who will respond !

 

Best wishes, Fiona.

User
Posted 20 Sep 2015 at 20:23
Hi Gary

Just wanted to say hello. I also empathise with you, as with many others on here do, as to that first diagnosis fear. It truly takes all the stuffing out of you!!

It is a roller coaster of a journey but try not to dwell too long on the downhills but enjoy the quality high times.

As you become more knowledgeable of the disease you will see there are many pathways of treatments. Often as one pathway closes another one will open.

Never give up hope gary.

Lesley

User
Posted 20 Sep 2015 at 20:36
Hi Gary

Welcome to the forum. You have done the right thing in joining the forum as there are many wonderful and kind people here. Although it is a shame that it is PCa that has brought everyone together.

I haven't had to undergo chemo or hormone therapy so I am not qualified to comment on those. However, there are many on the forum that do have experience and will no doubt come forward.

I just wanted you to know you are not alone. One thing I do know from experience is the upset and shock you feel when told you have PCa.

Wishing you all the best.

User
Posted 20 Sep 2015 at 20:43
Hi Gary, I am 50 diagnosed a year ago T4 Gleson 9. I am on hormones and had chemo and radiotherapy afterwards, yes we are all in a crap place but there is plenty of life to be lived and the treatment to reduce effects of cancer have been ok in the main, please don't dispair, lots of us here ready to help you when you need us(or even if!) .

Make sure you write down any questions that you have for the doc in advance and their responses as it's hard to think straight at times. Ask all the why are you doing this and why not that and what if and when etc etc.

Our thoughts are with you.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Sep 2015 at 23:44

Hi Gary,

 

Just want to offer my support. I am 6 months from my prostate removal. I was T3 Gleason 7.

Gather as much information as you can, listen to the advice and make your decisions after you are armed with all the information. The tool kit and the prostate cancer nurse advisors are a great resource. Don't be afraid to ask questions. Good luck with this undulating journey.

 

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 21 Sep 2015 at 07:31

Hi
As always on this site some grest advice.

I think it's still early days and so difficult to start making comparisons to the dx of others. You are still waiting for a bone scan. Hopefully this will be clear. This will help the medics to determine your best way forward.
At this stage it may still be locally advanced.
If there is no spread to the bone or any identifiable spread beyond the nodes in the pelvic region you may still be in the cure camp.

Keep us updated with your results

Bri

User
Posted 26 Sep 2015 at 21:03

Thank you for all your replied  .

a quick update i had my bone scan on Thursday .fingers and toes crossed for the results.

My girlfriend and i and parents ,the whole tribe ...met the oncologist on Tuesday and explained a few things to me .you can read alot on the internet but nothing like speaking to a doctor ..

It would have been better if i had seem her after my results of the bone scan as im still not 100% sure of my situation .

she talked about External bean radiotherapy..it the cancer has only spread to a small area outside my prostate .from what they can see on the MRI its only in a few nodes .

Feeling good and back to work ....and booked a holiday to the sun.

I have my hormone tablets been on them for a week and go on the 6th october for 1st injection and Results of my bone scan 

will keep you posted ..

 

gary

 

 

User
Posted 27 Sep 2015 at 18:04

Best of luck with the results Gary

Bri

User
Posted 27 Sep 2015 at 20:18
As a 47 year old at diagnosis and having had surgery, radiotherapy and now hormones, nearly six years later, I say, stick with us friend. We are all here to support each other and you will find no shortage of that here.

Keep in there and keep posting.

Bazza

User
Posted 29 Sep 2015 at 07:33

Hi Gary,

Like you I am new to this Pca thing but beginning to learn quickly about it and how great the forum and people are. I was dx in May and had first two injections and about the start early chemo next week. I am to new to offer much advise but as others have said, take someone with you to appointment and/or as I did, record the consultation on your phone. I found listening to it a few times really helped. Everyone is different but found out that talking about it to someone like your girlfriend or family does help. I've only dx 4 months but it seems like a lifetime and sometimes can't remember what it was like not to have known, so talking about it means that sometimes your not talking about it or even thinking about it. Once you get the full picture also helps and gets rid of the unknown knowns and can focus you.

All the best with the next's scans and results and keep in touch with the site!

User
Posted 29 Sep 2015 at 08:44

Good luck in advance Gary for the results on the 6th. ~Hope they are encouraging for you and your family

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Oct 2015 at 22:45
Hi Gary,

Thinking of you and keeping fingers crossed for your results

Louise x

User
Posted 08 Oct 2015 at 19:30
Hi guys !

Got the results of my bone scan !! All clear !!!

I'm so happy

I'm having chemo starting on the 27th oct . For 18 weeks . One lymph node that is outside the region for radiotherrpy is causing the doctors concern so they feel it's best to have chemo . I had hoped I would not have to have chemo but with a Gleason of 9 I think it's the best thing

I'm going on holiday tomorrow . I think this winter will be long and hard but I'm ready for the fight !

User
Posted 08 Oct 2015 at 19:40

Gary the bone scan is a great result . Very happy for you that the spread is no worse . I find it interesting how all Onco's and Uro's etc have different ideas and methods . I guess they tailor the treatment to the individual and their age and lifestyle etc. I too have lymph spread and G9 and PSA now 2.4 following surgery . I asked about Chemo and he said no . He also said there weren't any trials going on . Just plain old HT / RT . But even then different Onco's use different drugs for different periods , and different dosages of RT etc etc . Its an art form obviously .
Soooo jealous you going away . Enjoy
Chris

If life gives you lemons , then make lemonade

User
Posted 08 Oct 2015 at 22:40
Hi chris ,

I was planning to have RT which was discussed in the meeting before but they have offered Docetaxel .

I have been told that if the spread was within a certain area then RT would have been used . I have this one lymph node near the rectum that isn't enlarged but wouldn't fall in the treatment area so they are worried to leave it alone

It's all new to me so still taking it in . I'm leaving it in the doctors hands

Gary

User
Posted 03 Nov 2015 at 20:13

Just a quick update

I have started my chemo last Tuesday and so far have felt fine .I have gone back to work today ,im self employed so can work as much or as little as i need too.

I  have only been diagnosed since early September but  my life has changed , thanks to the hormone injection anything below the belt has gone to sleep....my only saving grace is its stopping the cancer growing . 

been having a lot of thoughts of "how long have i got"  and trying to not look at Dr google ...

I did a 5 km run on Sunday with my girlfriend and felt great ...we didnt  do any training ,apart from walking the dogs everyday  but felt confident we could do it without to much of a problem . and there i was running ,sweating and  on Day 5 of chemo....

anyway just wanted to thank all of you who reponding to my worried and scared 

 

gary

 

 

 

User
Posted 04 Nov 2015 at 14:38

HI Gary,
Your Psa seems similar to mine. Was dx in May and have had the hormone treatment and started early chemo 4 weeks ago and on second session. SE with chemo have been minimal and all zeros on the old scorecard so far with only some hot flushes and night sweats. Getting slightly tired but not sure if its the chemo or just interrupted sleep.
I am also self employed but working through it, although starting to take a couple of afternoons off a week. I think keeping reasonable fit, through dog walking and general things luke gardening etc, is important. I am trying to keep positive and keep away from generally googling. Also at this stage I also get how long have I got moments but as treatment seems to be going well, I think feck it, its good and its down to me to get on!

Good luck with the treatment.

Steven

User
Posted 04 Nov 2015 at 16:19

Hi Steven ,

Thanks for your reply, Looks like we are in the same boat .....and glad your PSA has come down ,a step in the right direction ...

Staying positive is easier said than done when Cancer comes and gives you a big smack in the face , but you either sink or swim and im not going without a fight ....

I have a blood test next monday (post chemo ) and my 2nd session on the following tuesday 17th ....

good luck aswell...

User
Posted 05 Nov 2015 at 05:44

morning gary and you to toast, seems like we three are all in the same boat with the Docetaxel, have my 3rd lot a week today, my side effects seem to read the same as yours, but I have felt more fatigued as the weeks are passing but accept this will be the chemo
am trying to do any exercise ie running early in the day whilst my blood count is higher, seems to be working

will be out in the next hour for 4miles

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 09 Mar 2016 at 11:12
Hi guys , sorry haven't been on the site much in the last month but an update

I completed chemo a month ago with no real side effects đź‘Ť

I them had a scan 2 weeks ago and results yesterday where the largest lymph node is now 1.2 so have halved in side and my PSA is 0.12

All in all my oncologist was really pleased and the chemo and hormones are working

Been feeling a little tired around 4/5pm and oncologist said I shouldn't have just stopped taken steroids but dropped the doses

I did asked the nurses at the last and final chemo but they said I was fine to stop , anyway it doesn't matter as feeling ok and extra ok with my results

I'

Guess this is a journey , a fight ! Feel like I won the first round with the big C

I hope all of you guys are winning , especially blade runner and Chris j who I have followed and really taken note of there knowledge . Everyone on this site has been amazing . I look through conversations and an collecting knowledge as I go

Thanks you everyone !

User
Posted 09 Mar 2016 at 11:49
Really pleased for you. Hope that all continues to go well for you.

That's a good score to have.

John

User
Posted 09 Mar 2016 at 11:58

Gary I'm so pleased for you . The treatment seems to have gone well for you , and in my mind what is most important is that the patient himself feels as happy and comfortable as they can , and to be able to steer their treatment a bit to provide a future that they can cope with . You seem to have this nailed at the moment . Hats off to you doing the Chemo . All the best and keep posting mate
Chris

If life gives you lemons , then make lemonade

User
Posted 09 Mar 2016 at 11:58

Well done Gary with getting through the chemo and getting a low PSA score.

I have been reading all your posts and not commented before as not gone through the treatment you have been offered but mu thoughts are with you never the less

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 09 Mar 2016 at 12:25

Good news. Very pleased for you Gary

We can't control the winds - but we can adjust our sails
User
Posted 09 Mar 2016 at 13:07
Gary

Don't know about winning the first round go for a KO!

Great news, best wishes

Arthur

User
Posted 12 Jun 2016 at 13:15

Hi ,

Havnt been here for a while ....I needed a few months of trying not to keep reminding myself of the c word ....I have been felling really well and my body hair has come back....starting to look normal again. Still see my oncologist once s month to check psa .

Had a call from hospital to say I could be put forward for radiotherapy. 35 sessions . Appointment was last monday. To say it was the worse consultation I've ever had was an understament. Firstly the radiologist didn't realise I was waiting and thought I was a no show .....so he was all ready to go home when my oncologist nurse saw me sitting in the corridor and him opening his office door to go ....I heard """ well you will have to be quick ,I can see you "

Great start ..... I explained I've been sitting with my girlfriend ,mother and sister for 25 mins and have always waited for a doctor to call you in ,rather than knock on random doors ....anyway he seems amazed why I was there and after he looked at my scans for all of 30 seconds and asked a few questions ,like did I work or have children ...explained that I could have 35 sessions , seven weeks ,5 days a week

I guessed he wasn't to impressed with the trial as in his words would have to " splash" a lot of radiation and could cause a lot of problems for my bowel and bladder .....also I would lose 20% of my bone marrow ...... I've come to term that I will not be cured and maybe he was trying to weigh up treatment effects with quality of life ...

Really could do with some opinions ,

I'm going to see my oncologist as she has been so positive but he made me feel totally crap .

Gary

User
Posted 12 Jun 2016 at 13:28

Hi Gary
We have spoken before. I'm glad your chemo went ok. I think you need a proper good chat with your Onco who it sounds like you trust. I'm locally advanced , probably advanced , and challenged the offer of 35 RT. My Onco totally agreed that it was a shot in the dark and that it wouldn't cure me , so my wife and I rejected it. Totally your decision , but do look up statistics and PSA results and Gleason grade etc. The specialist nurses on here sent me very recent material , as did MacMillan , about RT and criteria for starting it. I failed 5 of the 6 criteria leaving me with less than 18% chance of 6 year survival. We are all so different on this journey. Some people will take whatever is thrown at them whether aware of the side effects or not. I wasn't prepared for the risks of blanket RT but feel ok about HT and chemo etc
Good luck and keep us informed
Chris

If life gives you lemons , then make lemonade

User
Posted 12 Jun 2016 at 13:30

What a terrible experience Gary when it is not your fault. When you see the oncologist he/she will probably have a different overview and be more compassionate, I would explain to them what a bad appointment that was and if nothing is said or done about it, follow it up with a complaint to the PALS unit at your hospital ( that is: Patient Liason Service) they will be unbiased and get something done for you even if at the very least you do not see that radiologist again.

The sessions of RT will seem to take for ever but before you know it they will be finished.

Best of luck with your treatment.

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 12 Jun 2016 at 13:40

Not good Gary, not good at all and totally unacceptable.

See the oncologist and, like Chris says, explain the unpleasant and unhelpful, appointment. You do need to speak to somebody who can give you the time the take it all in.

I wish you good luck and hope something gets sorted out for you

We can't control the winds - but we can adjust our sails
User
Posted 12 Jun 2016 at 14:07

Thank you ,. I originally was going to have RT until a scan came back with one lymph node that was outside the area showing signs of being enlarge and oncologist was unsure what it might do untreated ... They have all shrunk down to under 1.1 . I have 3 nodes effected ....

Oncologist never mentioned losing bone marrow and conversation went as far as toilet trouble .....

Having completed the chemo and feeling good and only a few side effects I felt ready to have the RT by now not so sure .

User
Posted 12 Jun 2016 at 14:31
Gary ,

Sorry to have read your post update. I hope that the future is better for you regarding this .

John

User
Posted 12 Jun 2016 at 21:48
Hi Gary,

In my book that appointment was really not acceptable it makes my blood boil when some one with Cancer is treated poorly (it certainly is not how the adverts lead us to believe)

Trevor's first appointment with an oncologist to get his results from bone and MRI scans was nothing short of disgusting this was at Addenbrooks ( I am quite happy to name and shame). We were left in a seperate room for over 40 mins ( time ticks very slowly ) waiting for the oncologist. He was very distracted flipping through Trevor's notes like he had only just been handed them, he with a very deadpan face proceeded to tell us Yes it is PCa , incurable, bone scan was pretty shocking, PSA was extremely high, NO you are not eligible for trials and his exact words were there isn't much we can offer you, he then sat back and said "any questions" . We were just numb and obviously couldn't even think of any questions .

A very good friend of mine (who has herself now passed with cancer ) took up the baton and complained to the head of oncology at Addenbrooks, she told them that I was contemplating suicide ( ok over the top ) but do you no what it worked and the head of dept phoned the very next day and the oncologist himself also phoned to apologise. We have now moved to Peterborough and are very happy with our treatment and oncologist .

Sometimes they forget how there actions and words affect us , complain, complain , complain don't accept anything but the best this is your life they are dealing with.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2016 at 22:27
Hi Gary, sorry you have been badly treated.

I had early chemo T4 n1m1a, in my lymphs around my body but nowhere else.

I also had radiotherapy, just 6 blasts , once a week for 6 weeks last June. I asked onco why 6 and not loads as everyone else's seems to have loads and he said the 6 were to frazzle my prostate as there is " some evidence" that even after spread it is a good idea to kill off 'the mother ship". I was given a list of all the side effects, a year on I have radiation proctitis so I bleed a bit from behind but nothing grim, I had a colonoscopy yesterday at my insistance as I wanted to make sure it was only proctitis and nit a spread higher up which they did after I made a fuss as I don't think they saw the point. Anyway that was clear, a waste of time I guess but reassuring for me.

I dont know what the chances are of all the dude effects but the key question to me is what difference will the RT make? If the onco can justify why maybe that outweighs the risks if however the onco thinks it will have little positive effect then it's your call but with resources tight I don't understand why they would give you RT unless there was a probsble benefit that outweighs the possible side effects?

I see in your earlier posts you were running, I hope you still do, I have not stopped although it is harder and I do get more joint pain however no idea if that's the drugs or the cancer or just over use!

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 13 Jun 2016 at 14:09
Dear Gary

I understand that they can treat the suspect lymph nodes with radiotherapy if they are in the abdominal region.

I have forgotten the term that was used, but it was the lymph node system that runs around the prostate and upwards.

My OH was G7 N1 M0 and had the full 37 sessions including the lymphatic system in that area on an IMRT machine ( although I believe there is a more accurate and advanced machine now).

I think it's definately worth considering especially considering your young age.

Apologies that this is brief....I am on the hop.

ATB

Alison

Edited by member 13 Jun 2016 at 14:14  | Reason: Not specified

User
Posted 05 Oct 2016 at 16:04

Thank you for all your replies , been away from the site for a while .... I did see my oncologist and she was fully aware of my disaster of an appointment with the radiologist . She agreed that his wording wasn't good but I'm still not sure what to do ...
My head thinks go with what the doctors said is right for you to leave it alone until things change ,my psa starts to rise .....I been feeling really good , not been to tired and sleeping well ,hot flushes but controllable .. Last p.s.a was 0.18 slightly up from 0.15 but onclologist said after Chen can rise a little bit . All eyes on the 18th October to see where I am .

I was thinknig of getting a second opinion , have researched a radiologist in London who specialise in advanced PCs . Would I just book a private appointment with him .. WouLd I need my scans to bring with me and would the hospital give them to me

User
Posted 05 Oct 2016 at 17:19

I'm pretty sure you are entitled to ask for a second opinion and I don't see why your scans should be refused you. The only fly in the ointment I can see is would it all be organised for 18th October.
I also wonder whether (even though it is private) you will still need a referral letter from your consultant.

If you are happy to pay for a private appointment, then I would ring your consultant's secretary and ask what the procedure is for obtaining the scans (and a referral letter if that's necessary)

*******

We can't control the winds - but we can adjust our sails
User
Posted 05 Oct 2016 at 17:51

I think you are extremely rare. Chemo is usually given to men with incurable PCa, 35 sessions of RT is a curative treatment plan usually only offered to men with a chance of cure so to be offered both is odd. It might be that the RT was being offered as part of a trial in which case a second opinion is not necessarily going to help as another hospital may not have the same trial going, and private health can't often buy men places on trials.

It might be more useful to clarify why you were offered both - what do they think the benefit would be to you of having a curative treatment after chemo? If it is part of a trial, a conversation with the trial nurses might be more helpful than the horrible specialist :-(

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

User
Posted 05 Oct 2016 at 18:27

Yes Lyn , it would be part of a trial ,the radiologist said that it would not cure me to have the RT but may help .....but it's still in a trial so cannot confirm the benefits ......

User
Posted 28 May 2018 at 08:22

It has been some time since I've posted ,

life has been good , I have become a father .....the wonders of science a baby girl born on 16th feb

Two  days before my wife had her we were in hospital seeing oncologist,so only right all three of us made it back for the next review at 12 weeks ,

my psa is now at 1 

its doubled and a bit more  from 0.41 in 9 months ,oncol is happy and in Aug I will be 3 years from diagnosis 

im not sure what where I will go from here but eeping fit and healthy ,I am hoping to completely the London pru for prostate cancer in July and raise as much as I can , still playing football twice a week and changing nappies inbetween

 

once again thank you for all your help in my dark early days ,

User
Posted 28 May 2018 at 10:35
I think you forgot to mention that you got married at some point in the last couple of years? Congratulations!

At what point did you have some sperm frozen, and was this at the specialist’s suggestion or did you have to push for it? I think this will be very useful for other members in the future.

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

User
Posted 28 May 2018 at 10:47

Congratulations on you baby and good luck for the future.

 

barbara

 

 
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