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User
Posted 07 Dec 2022 at 11:35

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

Gabriel 

User
Posted 07 Dec 2022 at 15:07
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 18:49

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 20:09

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 23:31

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 23:51

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 01:43

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 09:31

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 10:10  | Reason: Not specified

User
Posted 08 Dec 2022 at 10:37
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 16:19

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 00:21

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 02:09

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 23:13
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 23:31

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 23:57  | Reason: Typo

User
Posted 10 Dec 2022 at 08:07

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 16:33

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 23:46

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 11 Dec 2022 at 00:18

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 01:09

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 01:13  | Reason: Not specified

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

User
Posted 11 Dec 2022 at 01:31

Excellent, Gaz, may the road rise with you!

Gabriel 

 
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