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User
Posted 03 Dec 2022 at 09:22

I am a 61 year old male and have just been diagnosed with prostate cancer. PSA 9.8 . Gleason 3+5 -8 and cancer in 9 out of 16 cores. High percentage of cancer in cores, mainly 50% to 100%. I am now heading for RT and hormone therapy. I am very conscious of my mortality but it seems that I now face a journey wherein my QOL shall diminish. I have come to the realisation that my life will never be the same but hopefully I will get through this and come out the other end.

Gabriel

 

 

Edited by member 09 Dec 2022 at 23:46  | Reason: Not specified

User
Posted 03 Dec 2022 at 09:22

I am a 61 year old male and have just been diagnosed with prostate cancer. PSA 9.8 . Gleason 3+5 -8 and cancer in 9 out of 16 cores. High percentage of cancer in cores, mainly 50% to 100%. I am now heading for RT and hormone therapy. I am very conscious of my mortality but it seems that I now face a journey wherein my QOL shall diminish. I have come to the realisation that my life will never be the same but hopefully I will get through this and come out the other end.

Gabriel

 

 

Edited by member 09 Dec 2022 at 23:46  | Reason: Not specified

User
Posted 03 Dec 2022 at 14:01

Hi Gabriel I feel your pain. I received my scores yesterday Gleason 3+4=7 T3aN1 . Unfortunately they have noticed something on my MRI and CT scans and suspect that thePC has spread to lymph nodes. I am being sent for a PMSA PET scan. What I don’t know and would appreciate anyone here sharing their thoughts is the likely treatment options if it has spread outside of the gland. Would it mean surgery is not an option?
Like you At 61 I do not fancy the surgery or it’s devastating side effects. I have been through open heart surgery back in 2017 so it isn’t the op that bothers me as much as the impacts on continence sex etc. 

hope all goes well for you

Nigel

 

User
Posted 03 Dec 2022 at 16:09

Hi,

I had similar scores to you and went the HT and radiotherapy route.I have to say that I had minor side effects with the HT,ie hot flushes which were annoying but easily coped with,I put on over stone round the waist and had to get new trousers but hey ho no big deal.The radiotherapy while daunting was fine,the staff very good and although a bit tedious having to go each day was not in any way painful(they are potentionally saving your life!).A few side effects from that with bowels/diet etc.Just obey their rules and advice and you will soon be through the treatment phase.ED and incontinence was my concern with any proceedure.I am fully continent(if that's the reverse word!) and sex is back on the menu,albeit irregularly (so what's new!!) Good Luck tell your other half that there is a light at the end of the tunnel,

User
Posted 03 Dec 2022 at 17:11

I was Gleason 9 psa 24.9 after 37 lots of radiotherapy and 2 years off hormone therapy psa now 0.01 been steady since end off radiotherapy in April 2021 good luck with your choice 👍 gaz 

User
Posted 03 Dec 2022 at 19:41

Hi Gabriel,

It may not feel like it right now, but you have already got through the hardest part - deciding on your preferred course of treatment. Be reassured that there is no 'cowardly 'option- assuming that there are no clinical reasons for preferring one route over another, it is all down to how you feel about the various sets of side effects, both short and long term. For what it is worth I chose the same route as you, for similar reasons (although I had a few extra wrinkles). 

I'd echo Kaine's comments above- that has been my experience also, and the odds are definitely that your RT and HT will bring inconveniences rather than anything to fret seriously about. 

I can understand your wife's concerns, and hope you can- together- find a way of bringing them out into the open where they can be put into perspective. It all gets a lot easier once you can talk it through and realise that it's not quite as bad as you feared.

One step at a time, and you have taken the biggest one.....

Best of luck

User
Posted 06 Jan 2023 at 10:17

I was PSA 58, T3aN0M0, G3+4. Regarded as high risk, hence possibility of lymph node micro-mets.
I remember all too well your thought that life will never be the same again.

I opted to have my pelvic lymph nodes treated too, even though no disease had shown up in them, hence they were done at just over half the dose (46Gy) they would have been done if there was known disease in them. I remember asking about risk of lymphodema and my oncologist said it's rare anyway with RT, and he'd never had a case of it with the lower dose, so I went ahead with that.

I'm now nearly 3½ years after treatment and 2 years after HT (for 22 months). At my last consultation 6 months ago, I said to my oncologist I now almost wouldn't know anything had been done, which was not at all what I was imagining at your stage. Everything still works just as it did before. There are of course no guarantees and I know not everyone is so lucky. I'm also aware I was a high risk patient and recurrence is a possibility, but I could worry about that the rest of my life and it may never happen, so I think you have to put that out of your mind. I do have one long term side effect and that is some minor painless rectal bleeding, but it doesn't cause any incontinence or any impact on QoL, so I don't care about that.

Lots of detail in my profile and do ask anything.

User
Posted 03 Dec 2022 at 20:40
Gabriel, I sympathise that you find yourself having to manage not only your anxieties but also those of your wife.

However as Olefogey says, for most of us the most stressful part is making a treatment decision, and you have done that. There are plenty of us here you can ask about hormone treatment and radiotherapy, and I hope that sort of information on the ground can lower your own anxieties. It is all manageable! There is a whole community here of people on your side who have been through, or are currently going through, much the same and you have our support.

Unfortunately though we can't really influence your wife's anxieties - unless she joins the forum too which she is welcome to do. There are quite a few other wives and partners to share her worries with.

User
Posted 07 Dec 2022 at 22:51

Nigel 

Most people are still here....lol. Yes indeed and I am hoping to also complete the course. 

I had a meeting with my consultant today and his manner was much more genial and accommodating. He agreed that we will radiate the whole pelvic area and I had my first hormone injection in my stomach. It was Astra Seneca, the brand name eludes me.

I have been frustrated by some aspects of the process but I felt very pleased today that the journey had commenced. Cancer is a horrible thing. I read the poignant words of some fellow journeymen on here, stating that you leave hormone therapy a different man than the one who entered it. This prompted me to reflect and to ponder that in its simplest, cancer, is a life threatening and life changing disease. 

I hope that I am one of the more fortunate ones and that I am not ravaged by the hormone treatment and I also hope that the radiation "gunners' aim well. Each life has its own twists and turns. Twelve months ago my dream was to travel to as many countries in South East Asia as I possibly could. That is now on ice. Today my dream is to be here in two years time, cancer free and hopefully a fit man. It's a tall order but I am hoping for the best.

In the short time that I have been on this forum I have taken great solace and elicited much information. It must be like our poor unfortunate ancestors who found themselves drawn from all aspects of life thrown together into the trenches of Flanders to face a common enemy. Full of trepidation and foreboding but cherishing hope and sharing a common sense of purpose and destiny.

Be lucky.

Gabriel 

 

 

 

 

 

User
Posted 03 Dec 2022 at 16:08

Hi Gabriel, really relate to your post

Im 69, G 3+4, very worried about surgery, hospitals, catheters, all of it basically.

Never stayed a day or night in hospital before. I'm pretty sure I'm going for UHRT, as long as I dont have to have HT or TURP. Its all terrifying to me. I havent cried once over having cancer, never lost any sleep over it. I feel so well, it's  hard to register I have a deadly disease

But the treatment that scares me so. I can't advise what you should do, but I feel and share your fear of surgery. 

Edited by member 03 Dec 2022 at 16:10  | Reason: Not specified

User
Posted 03 Dec 2022 at 21:21
As I've commented in another thread, I had essentially the same treatment that's being proposed for you, and didn't find it too bad at all. Yes, there are a few weeks around the end of RT where you're rather tied to the loo, but that soon eases off. I honestly don't feel that my quality of life has been adversely affected by my treatment.

I'm happy to answer any specific questions you may have.

Chris

User
Posted 03 Dec 2022 at 23:45

Nigel. 

Many thanks for your response. I am beginning to realise that the bottom line is that we have cancer and that comes with huge challenges. The good news is that we are receiving treatment and the bad news is that we will experience side effects, both short term and long term.

Rather than worry or beat myself up, which I am prone to do, I have made a decision to adopt the approach of: one step at a time. Take each fence as they come, clear it, focus on the next. For me it's like the Grand National and there is a long way to go.

Inevitably, longevity, quality of life and post treatment toxicity are all unknowns that we need to face when the moment arrives. I am happy to travel around the course with you.

Gabriel

 

 

 

 

 

User
Posted 03 Dec 2022 at 23:48

Tony 

Many thanks. Yes the hormone treatment is sadly unavoidable with my Gleason if I opt for RT, thanks for taking the time to respond. Very helpful.

Gabriel

 

 

 

 

User
Posted 03 Dec 2022 at 23:53

Gentleman

I am touched by you taking the time to respond. It gave me a leg up and it's good to realise that there are a few of us in this boat.

 

Gabriel 

User
Posted 04 Dec 2022 at 00:48

Hi Gabriel, I'm glad that in less than 24 hrs from your first post you already have a much clearer perspective. I was younger than you and with worse numbers than you, and just went down the recommended route for me. The QOL issues are important in my decision making. I had no major problems. If I were to get a recurrence the next lines of treatment would be more challenging from a QOL point of view. But where you are now the benefits of treatment and probably 20 years of life without further health problems almost certainly outweigh the inconvenience of treatment.

If your wife joins this forum hopefully within 24hrs she will be a lot less anxious than she not unreasonably is at present.

Dave

User
Posted 04 Dec 2022 at 00:54

Originally Posted by: Online Community Member
So why not go with the first recommendation to irradiate the prostate and hope that the androgen therapy gets the micro mets?

 

Because the hormone treatment won't 'get' the micromets (if they exist) - it will just put them to sleep for a while. As soon as you stop HT and your testosterone returns, any residual cancer will wake up and, in some cases, have a feeding frenzy.

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

User
Posted 04 Dec 2022 at 11:12

Gabriel,

what a wonderfully kind offer, I am quite touched.

Count me in

Nigel

User
Posted 07 Dec 2022 at 10:15

Originally Posted by: Online Community Member

Chris 

Thank you. As I may have mentioned I have received two different stage classifications and two different solutions proposed: radiate prostate and radiate pelvic area. 

If I was at the garage having an old jag resprayed It might seem logical to say  "oh go on spray it all". However, in this instance, the more that is painted the more side effects I presume? So why not go with the first recommendation to irradiate the prostate and hope that the androgen therapy gets the micro mets? Or would you say by taking this route I am heading for a recurrence further down the track?

Gabriel 

Radiotherapy is a "one time" deal; you can't go back and have it done again if it doesn't work the first time, so my advice would be to go for the whole pelvis RT.

 

Best wishes,

Chris

 

 

 

User
Posted 08 Dec 2022 at 09:37
Your RT programme will be designed by your oncologist specifically for you, and will irradiate what is required. It's certainly not a "shotgun" approach which blasts everything! As the treatment head moves around you, you can hear lead plates inside the machine moving around to shape the radiation beam to focus on the required areas.

Best wishes,

Chris

User
Posted 08 Dec 2022 at 15:19

Originally Posted by: Online Community Member
Thank you for that information. I had wondered what the whole pelvic are meant, so in essence we are talking about the nodes in addition to the prostate?

Yes Gabriel, if the plan is to use RT beyond the prostate there has to be a "target", though the information you've been given seems a bit light on as to what that might be. It's most probably lymph nodes and there are forms of scan, like PSMA PET scans, that will show up the exact location of these mets for most people. If you can get a more detailed report from your oncologist it might be useful.

The mental side of this is difficult though in some ways it's like any other tough fight in life, as you've observed.  If the injection you were given was made by AstraZeneca, it's probably Zoladex, either 1 month or 3 month version. In one sense you come out the other side of this "a different man" but if you can keep on top of this process, eat well, keep fit and hold on to your dreams for the future you can actually gain some strength and wisdom from the experience.

Zoladex [if that's what you've been given] can hit quite hard at first, though it varies greatly from one person to the next. With time the effects usually become more tolerable.

Jules

User
Posted 09 Dec 2022 at 01:09

Ah Gabriel, there's many people here who know a truckload more about this than I do!

PSMA PET scans rely on using a marker which is injected into the bloodstream where it stays for long enough to allow a scanner, one of those CT ring ones they feed you through, to pick up any points in your body where the marker has accumulated. So it temporarily marks cancer cells though I think it also picks up broken bones that might be in the act of repairing themselves. Different markers are used and I believe they're all radioactive with a fairly short half life period which makes transporting them a challenge. It works for most people and when it does it's a significantly better tool than an MRI scan.

In the first week or so after you've had your first Zoladex shot you'll probably think it's not doing anything but somewhere at about the two week mark it completely knocks out libido via testosterone loss. I have to admit there was something surreal about suddenly being sexless and it was a revelation to view the world from that perspective. Momentary amusement aside, you will probably have hot flushes [flashes], you might suffer from mood swings but that doesn't mean you'll suddenly become an aggressive maniac. Mentally, my impression is that whatever underlying quirks you might have will be magnified. Physically the loss of testosterone seems to change your body's priorities from keeping your strength up to putting on a nice layer of fat ... annoying! As a personal observation I thought that any gains in fitness were lost very quickly, probably for the same reasons.

In some ways I think this is just as hard or harder for wives/partners as it is for those of us who are dealing with cancer but if you're thinking "humility and gratitude" I suspect you're going to manage the twists and turns ahead very well,

 

Jules

 

 

User
Posted 09 Dec 2022 at 22:13
Like most other things in prostate cancer, different men respond differently to Zoladex. I never had the hot flushes some people report, the most obvious consequence was the inevitable decline in libido. My wife tells me I became more passive in nature, and smelt different (she described the new smell as "like digestive biscuits"). Plus a layer of flab appearing over my belly.

The other thing I am now experiencing - the effects of Zoladex take a long while to wear off. (Which is odd given how keen they are in sticking to a precise 12-week injection routine). Libido is very slow to reappear - certainly to a functional level - and no sign of success in getting rid of that flab. Apparently my smell is changing for the better though.

User
Posted 10 Dec 2022 at 07:07

Diagnosed gleeson 9 two years on after 37 lots of radiotherapy and 2 years on hormone therapy psa now steady at 0.01 for last 18 months had last result yesterday so some high grade at diagnosis can do quite well hope it remains so  gaz

User
Posted 11 Dec 2022 at 00:52

JGH that is sound advice and I agree. I think I am fairly positive, but as all of us who are human and indeed men, I have some concerns about how I will be following treatment.

First, and foremost I would like to be here. Second, I am a man. I identify as a man and as such I would like to remain as much a man as possible.

I try to not feel sorry for myself and to balance my thinking with the thought that there is always someone worse off than me. In hoping for the best I aspire to survival and preserving as much of myself as I can. 

However, life is full of twists and turns and being diagnosed with PC does not prevent death from another cause. My diagnosis was very unwelcome but it has really focused my attention on the present, on the precious quality of each day and the transience of life.

Since joining this forum I have also become very aware of the many possible side effects and errors associated with RT.

Here is hoping, indeed praying.

Gabriel 

Edited by member 11 Dec 2022 at 01:13  | Reason: Not specified

Show Most Thanked Posts
User
Posted 03 Dec 2022 at 14:01

Hi Gabriel I feel your pain. I received my scores yesterday Gleason 3+4=7 T3aN1 . Unfortunately they have noticed something on my MRI and CT scans and suspect that thePC has spread to lymph nodes. I am being sent for a PMSA PET scan. What I don’t know and would appreciate anyone here sharing their thoughts is the likely treatment options if it has spread outside of the gland. Would it mean surgery is not an option?
Like you At 61 I do not fancy the surgery or it’s devastating side effects. I have been through open heart surgery back in 2017 so it isn’t the op that bothers me as much as the impacts on continence sex etc. 

hope all goes well for you

Nigel

 

User
Posted 03 Dec 2022 at 16:08

Hi Gabriel, really relate to your post

Im 69, G 3+4, very worried about surgery, hospitals, catheters, all of it basically.

Never stayed a day or night in hospital before. I'm pretty sure I'm going for UHRT, as long as I dont have to have HT or TURP. Its all terrifying to me. I havent cried once over having cancer, never lost any sleep over it. I feel so well, it's  hard to register I have a deadly disease

But the treatment that scares me so. I can't advise what you should do, but I feel and share your fear of surgery. 

Edited by member 03 Dec 2022 at 16:10  | Reason: Not specified

User
Posted 03 Dec 2022 at 16:09

Hi,

I had similar scores to you and went the HT and radiotherapy route.I have to say that I had minor side effects with the HT,ie hot flushes which were annoying but easily coped with,I put on over stone round the waist and had to get new trousers but hey ho no big deal.The radiotherapy while daunting was fine,the staff very good and although a bit tedious having to go each day was not in any way painful(they are potentionally saving your life!).A few side effects from that with bowels/diet etc.Just obey their rules and advice and you will soon be through the treatment phase.ED and incontinence was my concern with any proceedure.I am fully continent(if that's the reverse word!) and sex is back on the menu,albeit irregularly (so what's new!!) Good Luck tell your other half that there is a light at the end of the tunnel,

User
Posted 03 Dec 2022 at 17:11

I was Gleason 9 psa 24.9 after 37 lots of radiotherapy and 2 years off hormone therapy psa now 0.01 been steady since end off radiotherapy in April 2021 good luck with your choice 👍 gaz 

User
Posted 03 Dec 2022 at 19:41

Hi Gabriel,

It may not feel like it right now, but you have already got through the hardest part - deciding on your preferred course of treatment. Be reassured that there is no 'cowardly 'option- assuming that there are no clinical reasons for preferring one route over another, it is all down to how you feel about the various sets of side effects, both short and long term. For what it is worth I chose the same route as you, for similar reasons (although I had a few extra wrinkles). 

I'd echo Kaine's comments above- that has been my experience also, and the odds are definitely that your RT and HT will bring inconveniences rather than anything to fret seriously about. 

I can understand your wife's concerns, and hope you can- together- find a way of bringing them out into the open where they can be put into perspective. It all gets a lot easier once you can talk it through and realise that it's not quite as bad as you feared.

One step at a time, and you have taken the biggest one.....

Best of luck

User
Posted 03 Dec 2022 at 20:40
Gabriel, I sympathise that you find yourself having to manage not only your anxieties but also those of your wife.

However as Olefogey says, for most of us the most stressful part is making a treatment decision, and you have done that. There are plenty of us here you can ask about hormone treatment and radiotherapy, and I hope that sort of information on the ground can lower your own anxieties. It is all manageable! There is a whole community here of people on your side who have been through, or are currently going through, much the same and you have our support.

Unfortunately though we can't really influence your wife's anxieties - unless she joins the forum too which she is welcome to do. There are quite a few other wives and partners to share her worries with.

User
Posted 03 Dec 2022 at 21:21
As I've commented in another thread, I had essentially the same treatment that's being proposed for you, and didn't find it too bad at all. Yes, there are a few weeks around the end of RT where you're rather tied to the loo, but that soon eases off. I honestly don't feel that my quality of life has been adversely affected by my treatment.

I'm happy to answer any specific questions you may have.

Chris

User
Posted 03 Dec 2022 at 23:45

Nigel. 

Many thanks for your response. I am beginning to realise that the bottom line is that we have cancer and that comes with huge challenges. The good news is that we are receiving treatment and the bad news is that we will experience side effects, both short term and long term.

Rather than worry or beat myself up, which I am prone to do, I have made a decision to adopt the approach of: one step at a time. Take each fence as they come, clear it, focus on the next. For me it's like the Grand National and there is a long way to go.

Inevitably, longevity, quality of life and post treatment toxicity are all unknowns that we need to face when the moment arrives. I am happy to travel around the course with you.

Gabriel

 

 

 

 

 

User
Posted 03 Dec 2022 at 23:48

Tony 

Many thanks. Yes the hormone treatment is sadly unavoidable with my Gleason if I opt for RT, thanks for taking the time to respond. Very helpful.

Gabriel

 

 

 

 

User
Posted 03 Dec 2022 at 23:53

Gentleman

I am touched by you taking the time to respond. It gave me a leg up and it's good to realise that there are a few of us in this boat.

 

Gabriel 

User
Posted 04 Dec 2022 at 00:05

Chris 

Thank you. As I may have mentioned I have received two different stage classifications and two different solutions proposed: radiate prostate and radiate pelvic area. 

If I was at the garage having an old jag resprayed It might seem logical to say  "oh go on spray it all". However, in this instance, the more that is painted the more side effects I presume? So why not go with the first recommendation to irradiate the prostate and hope that the androgen therapy gets the micro mets? Or would you say by taking this route I am heading for a recurrence further down the track?

Gabriel 

 

 

User
Posted 04 Dec 2022 at 00:48

Hi Gabriel, I'm glad that in less than 24 hrs from your first post you already have a much clearer perspective. I was younger than you and with worse numbers than you, and just went down the recommended route for me. The QOL issues are important in my decision making. I had no major problems. If I were to get a recurrence the next lines of treatment would be more challenging from a QOL point of view. But where you are now the benefits of treatment and probably 20 years of life without further health problems almost certainly outweigh the inconvenience of treatment.

If your wife joins this forum hopefully within 24hrs she will be a lot less anxious than she not unreasonably is at present.

Dave

User
Posted 04 Dec 2022 at 00:54

Originally Posted by: Online Community Member
So why not go with the first recommendation to irradiate the prostate and hope that the androgen therapy gets the micro mets?

 

Because the hormone treatment won't 'get' the micromets (if they exist) - it will just put them to sleep for a while. As soon as you stop HT and your testosterone returns, any residual cancer will wake up and, in some cases, have a feeding frenzy.

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

User
Posted 04 Dec 2022 at 04:01

Hi

Glad to help and very best wishes, Tony

User
Posted 04 Dec 2022 at 11:12

Gabriel,

what a wonderfully kind offer, I am quite touched.

Count me in

Nigel

User
Posted 06 Dec 2022 at 23:25

Thank you. This is very useful and a little disconcerting to say the least. It also suggests that if one holds the view that irradiation of the whole pelvic area should be carried out that RP would not be an option as it would remove the prostate but in all likelihood cancer will remain present elsewhere. It all sounds pretty awful and worse than I had initially envisaged the situation.

Gabriel 

 

 

 

Edited by member 07 Dec 2022 at 09:47  | Reason: Not specified

User
Posted 06 Dec 2022 at 23:36
Yes I think that is possibly what the doctors are thinking. The fact that you had such a high % of cancer in the biopsy cores is a concern and there is a chance that surgery would not remove all the cancer so RT with HT becomes the sensible choice as it can cover a wider area. Try not to be alarmed - they would not be offering you RT if they did not believe this could be curative.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Dec 2022 at 00:53

Lyn 

 

Sincere thanks. To be honest I am not alarmed just frustrated at the lack of emotional intelligence and conversation skills that my doctor possesses and the paucity of information he provides. I can deal with facts, impacts and risk analysis but I am not receiving sufficient information to confidently make a decision. Sometimes people see choice as only selecting an option when in fact the rejection of an alternative is equally significant and impactful. I had dismissed surgery but then as I pondered two years of Hormone T, I began wondering was it less of a prolonged pain going down the RP route.

You are very knowledgeable are you a professional?

Gabriel 

 

 

 

Edited by member 07 Dec 2022 at 01:02  | Reason: Not specified

User
Posted 07 Dec 2022 at 10:15

Originally Posted by: Online Community Member

Chris 

Thank you. As I may have mentioned I have received two different stage classifications and two different solutions proposed: radiate prostate and radiate pelvic area. 

If I was at the garage having an old jag resprayed It might seem logical to say  "oh go on spray it all". However, in this instance, the more that is painted the more side effects I presume? So why not go with the first recommendation to irradiate the prostate and hope that the androgen therapy gets the micro mets? Or would you say by taking this route I am heading for a recurrence further down the track?

Gabriel 

Radiotherapy is a "one time" deal; you can't go back and have it done again if it doesn't work the first time, so my advice would be to go for the whole pelvis RT.

 

Best wishes,

Chris

 

 

 

User
Posted 07 Dec 2022 at 10:35

Thanks Chris, I honestly did not know that RT was a one time deal. Very helpful indeed.

Gabriel 

User
Posted 07 Dec 2022 at 14:07
Hello Gabriel,

I’m afraid not getting all the info seems to be par for the course. ( see my bio )

Today I received a written letter for a follow up appointment next year and as far as I was concerned a bit of important information was missing.

I won’t turn this into a rant however three nurses from three different departments of NHS Scotland said that generally communication by letter is very poor and it seems very difficult to improve things from the frontline.

The nurses sorted my situation out themselves 👍

Rgds

Dave

User
Posted 07 Dec 2022 at 17:49

Originally Posted by: Online Community Member

Thanks Chris, I honestly did not know that RT was a one time deal. Very helpful indeed.

Gabriel 

 

Gabriel, at 62 I had surgery in 2014, followed by salvage RT to the prostate bed in 2017 without HT and then a few months ago I had further SABR treatment to a tumor in a pelvic lymph node. Not sure why the catheter would put you off surgery, with the right care they should not be a problem. 

 

Thanks Chris

User
Posted 07 Dec 2022 at 19:09

Hi Gabriel, 

I hope you are feeling a little less frustrated?

There is so much information on here that is helpful and my observation so far is that most people are still here if you get my point?

Since telling a few people close to me at work I have felt an overwhelming sense of caring and many stories of peoples experiences with cancer and most are success stories 

So get ready for the fight! That is how I am feeling just now. My frustration last week was a lack of a full diagnosis however I now have my PSMA pet scan booked in at Oxford for the 14th and they were lovely to deal with

So here’s hoping for a complete picture and a curative treatment plan before Christmas 🤞🏻

Best wishes 

Nigel

User
Posted 07 Dec 2022 at 22:31

Hello Dave 

I just read your bio and your meticulous blow by blow account of the fight. Initially when I was doing my research, I had surmised that I might have combination therapy of brachytherapy and IMRT but I believe my cancer is too advanced to avail of the former. Anyway it sounds that you are well on your way. Thanks for replying and stay in touch. 

Gabriel 

 

 

 

 

 

User
Posted 07 Dec 2022 at 22:51

Nigel 

Most people are still here....lol. Yes indeed and I am hoping to also complete the course. 

I had a meeting with my consultant today and his manner was much more genial and accommodating. He agreed that we will radiate the whole pelvic area and I had my first hormone injection in my stomach. It was Astra Seneca, the brand name eludes me.

I have been frustrated by some aspects of the process but I felt very pleased today that the journey had commenced. Cancer is a horrible thing. I read the poignant words of some fellow journeymen on here, stating that you leave hormone therapy a different man than the one who entered it. This prompted me to reflect and to ponder that in its simplest, cancer, is a life threatening and life changing disease. 

I hope that I am one of the more fortunate ones and that I am not ravaged by the hormone treatment and I also hope that the radiation "gunners' aim well. Each life has its own twists and turns. Twelve months ago my dream was to travel to as many countries in South East Asia as I possibly could. That is now on ice. Today my dream is to be here in two years time, cancer free and hopefully a fit man. It's a tall order but I am hoping for the best.

In the short time that I have been on this forum I have taken great solace and elicited much information. It must be like our poor unfortunate ancestors who found themselves drawn from all aspects of life thrown together into the trenches of Flanders to face a common enemy. Full of trepidation and foreboding but cherishing hope and sharing a common sense of purpose and destiny.

Be lucky.

Gabriel 

 

 

 

 

 

User
Posted 08 Dec 2022 at 00:43

Originally Posted by: Online Community Member
It also suggests that if one holds the view that irradiation of the whole pelvic area should be carried out that RP would not be an option as it would remove the prostate but in all likelihood cancer will remain present elsewhere. It all sounds pretty awful and worse than I had initially envisaged the situation.

There's been a few posts on this recently but the idea of irradiating the whole pelvis is somewhat misleading. Maybe they once did that [?] but what happens now is way more specific. The trend with RT for lymph nodes is for more precise targeting which reduces damage to surrounding tissue while allowing for higher strength RT focused on the nodes. I don't know if that's how it is where you are but it's worth asking.

It's also not entirely set in stone that once you've had RT you can't go with it again. That's certainly true for a prostate that's been irradiated but in places where RT has not been used before it might be possible to it as follow up treatment for cancer that shows up later.

Jules

User
Posted 08 Dec 2022 at 08:31

Dear Jules 

Thank you for that information. I had wondered what the whole pelvic are meant, so in essence we are talking about the nodes in addition to the prostate?

Gabriel 

Edited by member 08 Dec 2022 at 09:10  | Reason: Not specified

User
Posted 08 Dec 2022 at 09:37
Your RT programme will be designed by your oncologist specifically for you, and will irradiate what is required. It's certainly not a "shotgun" approach which blasts everything! As the treatment head moves around you, you can hear lead plates inside the machine moving around to shape the radiation beam to focus on the required areas.

Best wishes,

Chris

User
Posted 08 Dec 2022 at 15:19

Originally Posted by: Online Community Member
Thank you for that information. I had wondered what the whole pelvic are meant, so in essence we are talking about the nodes in addition to the prostate?

Yes Gabriel, if the plan is to use RT beyond the prostate there has to be a "target", though the information you've been given seems a bit light on as to what that might be. It's most probably lymph nodes and there are forms of scan, like PSMA PET scans, that will show up the exact location of these mets for most people. If you can get a more detailed report from your oncologist it might be useful.

The mental side of this is difficult though in some ways it's like any other tough fight in life, as you've observed.  If the injection you were given was made by AstraZeneca, it's probably Zoladex, either 1 month or 3 month version. In one sense you come out the other side of this "a different man" but if you can keep on top of this process, eat well, keep fit and hold on to your dreams for the future you can actually gain some strength and wisdom from the experience.

Zoladex [if that's what you've been given] can hit quite hard at first, though it varies greatly from one person to the next. With time the effects usually become more tolerable.

Jules

User
Posted 08 Dec 2022 at 23:21

Hello Jules

My sincere gratitude for taking the time to write and to provide this information, which has helped me and will no doubt benefit others. 

The notion of a target makes sense, as precision in radiation is vital and I had been wondering how this would be achieved. I also read other posts and wondered what a PSMA PET scan would be.

I rather like your observations on gaining wisdom and strength from the experience. The "different man" may be diminished physically but enhanced in other ways. The physical side effects sound abhorrent, but I do hope that I don't end up with mood swings or being emotionally volatile as this will not help my relationship with my wife. 

Zoladex is the drug and it shall be administered every three months. I would be most grateful if you could elaborate on initial possible side effects. Ironically,I will no doubt find out for myself.

I am no saint and I hope that I have been a reasonable sort in my life so far but this experience has certainly made me actively focus a lot more on the concepts of humility and gratitude.

Sincere thanks  

Gabriel

 

 

 

 

 

User
Posted 09 Dec 2022 at 01:09

Ah Gabriel, there's many people here who know a truckload more about this than I do!

PSMA PET scans rely on using a marker which is injected into the bloodstream where it stays for long enough to allow a scanner, one of those CT ring ones they feed you through, to pick up any points in your body where the marker has accumulated. So it temporarily marks cancer cells though I think it also picks up broken bones that might be in the act of repairing themselves. Different markers are used and I believe they're all radioactive with a fairly short half life period which makes transporting them a challenge. It works for most people and when it does it's a significantly better tool than an MRI scan.

In the first week or so after you've had your first Zoladex shot you'll probably think it's not doing anything but somewhere at about the two week mark it completely knocks out libido via testosterone loss. I have to admit there was something surreal about suddenly being sexless and it was a revelation to view the world from that perspective. Momentary amusement aside, you will probably have hot flushes [flashes], you might suffer from mood swings but that doesn't mean you'll suddenly become an aggressive maniac. Mentally, my impression is that whatever underlying quirks you might have will be magnified. Physically the loss of testosterone seems to change your body's priorities from keeping your strength up to putting on a nice layer of fat ... annoying! As a personal observation I thought that any gains in fitness were lost very quickly, probably for the same reasons.

In some ways I think this is just as hard or harder for wives/partners as it is for those of us who are dealing with cancer but if you're thinking "humility and gratitude" I suspect you're going to manage the twists and turns ahead very well,

 

Jules

 

 

User
Posted 09 Dec 2022 at 22:13
Like most other things in prostate cancer, different men respond differently to Zoladex. I never had the hot flushes some people report, the most obvious consequence was the inevitable decline in libido. My wife tells me I became more passive in nature, and smelt different (she described the new smell as "like digestive biscuits"). Plus a layer of flab appearing over my belly.

The other thing I am now experiencing - the effects of Zoladex take a long while to wear off. (Which is odd given how keen they are in sticking to a precise 12-week injection routine). Libido is very slow to reappear - certainly to a functional level - and no sign of success in getting rid of that flab. Apparently my smell is changing for the better though.

User
Posted 09 Dec 2022 at 22:31

Hi JB 

Thanks for responding. So you were indeed a different man: " half man, half biscuit"! 

Sounds like you have been in the wars, sorry to hear that but also sounds like you are on the mend. I note that your surgery didn't work, Was that because there was undetected cancer beyond the prostate?

As for the hormone treatment I will be on this for two years as my cancer is high grade. That cannot be good news for my libido!

On a separate matter, I have been very surprised to note that the majority of profiles that I see relate to Gleason 7 experiences. I guess 8 and 9s have got less chance of seeing out the trip? 

Gabriel

 

 

Edited by member 09 Dec 2022 at 22:57  | Reason: Typo

User
Posted 10 Dec 2022 at 07:07

Diagnosed gleeson 9 two years on after 37 lots of radiotherapy and 2 years on hormone therapy psa now steady at 0.01 for last 18 months had last result yesterday so some high grade at diagnosis can do quite well hope it remains so  gaz

User
Posted 10 Dec 2022 at 15:33

A diagnosis of PC is obviously unwelcome and worrying, but you will find that in most respects life can continue as normal. A marked QOL reduction is not an inevitable outcome.

My advice would be to stay positive, try to be more physically active, allocate more time to doing the things you enjoy, and identify a circle of family and friends with whom you can talk openly about your condition. Don't allow yourself to focus on the negatives - spending too much time on google looking at prognoses serves no useful purpose.

There are a lot of people here who will have gone through the things that you have, and will do, and are happy to share their advice and experiences.

Good luck going forward.

User
Posted 10 Dec 2022 at 22:46

Originally Posted by: Online Community Member
On a separate matter, I have been very surprised to note that the majority of profiles that I see relate to Gleason 7 experiences. I guess 8 and 9s have got less chance of seeing out the trip?

Hell no, there's a lot of us G9s here! We're just naturally modest. I don't think there's any G10s, though it's theoretically possible.

Jules

User
Posted 10 Dec 2022 at 23:18

Sadly, OH is G10 so they do exist! Over 2.5 years since dx. HT/chemo/RT and no change in PSA as of yet. Incurable so no hope of the dreadful HT ending. Be kind to your wife as I hope she will be to you. 

Best wishes. 

 

User
Posted 11 Dec 2022 at 00:09

G7 is probably the most common diagnosis, partly because there is 3+4 and 4+3 ... 3+5 and 5+3 are rare so almost all G8s are 4+4.

I think we have a fair few G6s but many opt for active surveillance so don't necessarily have a lot of issues to post about on the forum although we have had a G6 man with mets recently.

If diagnosed at an early stage, G8/9/10 don't necessarily have poorer outcomes than G7 - unfortunately, too many G7 men have a recurrence following radical treatment or are diagnosed when it has already spread.

Devonmaid's husband was G10 and lived for a number of years with advanced PCa.

 

PS - no, not a professional. Sadly, have just had to learn a lot as my dad, father-in-law and husband have all had prostate cancer. 

 

Edited by member 11 Dec 2022 at 00:13  | Reason: Not specified

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

User
Posted 11 Dec 2022 at 00:31

Excellent, Gaz, may the road rise with you!

Gabriel 

User
Posted 11 Dec 2022 at 00:33

Nice one Jules. At 61, I'll settle for modesty if I can get to kick the can down the road for another decade.

Gabriel 

User
Posted 11 Dec 2022 at 00:52

JGH that is sound advice and I agree. I think I am fairly positive, but as all of us who are human and indeed men, I have some concerns about how I will be following treatment.

First, and foremost I would like to be here. Second, I am a man. I identify as a man and as such I would like to remain as much a man as possible.

I try to not feel sorry for myself and to balance my thinking with the thought that there is always someone worse off than me. In hoping for the best I aspire to survival and preserving as much of myself as I can. 

However, life is full of twists and turns and being diagnosed with PC does not prevent death from another cause. My diagnosis was very unwelcome but it has really focused my attention on the present, on the precious quality of each day and the transience of life.

Since joining this forum I have also become very aware of the many possible side effects and errors associated with RT.

Here is hoping, indeed praying.

Gabriel 

Edited by member 11 Dec 2022 at 01:13  | Reason: Not specified

User
Posted 11 Dec 2022 at 08:58
Bear in mind that it's human nature to publicise the rare problems that occur, while the majority for whom it's plain sailing tend not to talk about it. As I've told you before, I found my treatment to be pretty straightforward. The biopsies (I ended up having two) were probably the worst part of it all; the actual RT process was very straightforward and relatively problem-free other than the usual few weeks tied to the loo at the end, but that quickly passed.

All the best,

Chris

User
Posted 11 Dec 2022 at 21:01
Gabriel, you made me laugh with "Half man half biscuit".

To be honest, I don't that much feel I have been through the wars with RT, certainly compared with the original surgery. Though obviously I would prefer not having needed it!

To put it in context, the salvage RT was to deal with a recurrence in PSA readings that was tiny compared with before surgery. Surgery had knocked it down to be undetectable. It wouldn't be reasonable to say it "didn't work". Unfortunately there was a small positive margin, which was always a risk when the surgeon goes for nerve sparing (which I am glad he did, even if I am not currently benefitting). After the operation I put my information into the online risk predictor (published by Memorial Sloan Kettering Hospital in the US) and that suggested I had a one in six chance of PSA rising within 5 years - unfortunately the wrong number on the dice came up. But it also predicted my chance of dying from prostate cancer at any point in the next 15 years from the operation was only 1%, which doesn't sound too bad.

User
Posted 11 Dec 2022 at 21:48

Good man JB. Fight! I am a bit down as i have gone straight onto Zoladex but without Bicalutamide, which seems to be what others have received.

 

 

Gabriel

User
Posted 06 Jan 2023 at 02:25

The more I know, the less I know. 

I have now seen two radiologists. One has advocated risk management of including the Nodes in RT but the other has said that he does not think this is necessary. He believes that survival rates are similar but radiation of the Nodes carries additional risk. Yes there may be micromets lurking there but I am N0. As he said there may be micromets lurking in my blood.

My original predicted RT was 20 sessions, I forgot to ask if including Nodes would alter this!

I wondered if anyone has faced this choice?

Gabriel 

 

User
Posted 06 Jan 2023 at 08:14

Originally Posted by: Online Community Member

The more I know, the less I know. 

I have now seen two radiologists. One has advocated risk management of including the Nodes in RT but the other has said that he does not think this is necessary. He believes that survival rates are similar but radiation of the Nodes carries additional risk. Yes there may be micromets lurking there but I am N0. As he said there may be micromets lurking in my blood.

My original predicted RT was 20 sessions, I forgot to ask if including Nodes would alter this!

I wondered if anyone has faced this choice?

Gabriel

I had 3 nodes treated specifically with RT at the same time as my prostate was being irradiated. I don't understand what form of treatment would be covered by "including nodes" unspecified, in your treatment. There are a number of lymph nodes in the vicinity of the prostate but I do not think they are not grouped in such a way as to be suitable for cover-all radiation. Similarly, if no cancer has been detected in your nodes, there's no specific nodes to be targeted either.

Unfortunately there might always be cancer cells lurking somewhere but there's nothing we can do about the unknown, plus some aspirational cancer cells never fulfill their ambitions anyway.

Jules

Edited by member 06 Jan 2023 at 08:24  | Reason: Not specified

User
Posted 06 Jan 2023 at 09:08

Thanks Jules. It's also a comfort to know that some aspirational cancer cells never fulfill their ambitions anyway. In this respect they would be following the life of their master 

Gabriel

 

 

 

User
Posted 06 Jan 2023 at 10:17

I was PSA 58, T3aN0M0, G3+4. Regarded as high risk, hence possibility of lymph node micro-mets.
I remember all too well your thought that life will never be the same again.

I opted to have my pelvic lymph nodes treated too, even though no disease had shown up in them, hence they were done at just over half the dose (46Gy) they would have been done if there was known disease in them. I remember asking about risk of lymphodema and my oncologist said it's rare anyway with RT, and he'd never had a case of it with the lower dose, so I went ahead with that.

I'm now nearly 3½ years after treatment and 2 years after HT (for 22 months). At my last consultation 6 months ago, I said to my oncologist I now almost wouldn't know anything had been done, which was not at all what I was imagining at your stage. Everything still works just as it did before. There are of course no guarantees and I know not everyone is so lucky. I'm also aware I was a high risk patient and recurrence is a possibility, but I could worry about that the rest of my life and it may never happen, so I think you have to put that out of your mind. I do have one long term side effect and that is some minor painless rectal bleeding, but it doesn't cause any incontinence or any impact on QoL, so I don't care about that.

Lots of detail in my profile and do ask anything.

User
Posted 06 Jan 2023 at 10:41

Andy62 

I appreciate you sharing. May I ask why were you high risk, was that because your PSA was 58? What were you self medicating with? 5mgMCP.

It's a very hard decision for me. It appears localised but it is Gleason 8 and all along the capsule anterior for 1.8cm but no invasion of the capsule.

I think you were very brave deciding to do lymph nodes that had no visible signs. Incidentally my PSA was 10. 

It's a bloody tough call for me. I wish they had some way of detecting micromets in the lymph nodes.

As an aside , I got really p****d off by my brother just now, who told me that with prostate cancer I have a 98% chance of surviving 10 years!

Gabriel 

 

 

Edited by member 08 Jan 2023 at 02:42  | Reason: Not specified

 
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