Has anyone with Gleason 8 or 9 said no to radio therapy?

Cancer
1

Although I have aggressive cancer (Gleason 9) there is still no evidence that it has spread outside the prostate. But my oncologist tells me that it probably has spread already, even though it doesn't yet show up on the scans. He recommends radio therapy on the off chance that it is still contained within the prostate. He accepts however that it probably serves no purpose if the cancer has already begun to metastasise.

My question is - should I go ahead now with radio therapy and accept the possibly gruelling side effects? I am a fit 74 year old and the next five years are more important to me than living to be 90!! As I understand it, hormone therapy alone will keep the cancer under control for most, if not all, of the next five years. And who knows? New hormone drugs may be developed over that time which may extend my quality of life a little longer.

Is there anyone else out there facing my dilemma?

2

Hello again Peter,

As you know I am facing roughly the same dilemma as yourself.

I had not wanted to engage in pro active treatment of my Gleason 7 ( 4+3 ) , T2b. , PSA 10 condition.

But I have not been able to maintain that stance. Since I last posted I have seen one of the top Urologists at Royal Adelaide Hospital and a Professor, the senior Oncologist/Radiologist there.

I feel very fortunate because the costs have been borne by the Health Service.

The advice I got from both these very experienced men was to definitely have treatment. In my case E B R T. with probable follow up with hormones.

They both spent absolutely ages with me explaining what they consider to be the advantages*of treatment , even though there may be and probably will be side -effects. ( *It's too much to go into in print ). Nonetheless I was initially adamant that I wouldn't have treatment. But they kindly and patiently reasoned with me both individually and together.

You see the 4 element of the Gleason score means the cancer is moderately aggressive and can and probably will go anywhere. They are sure mine is microscopically outside the capsule now. There is a chance that the E B R T will knock it off and if it does that will give me extra years of worth living life.

If I do nothing I stand a good chance of being dead inside 5 years with the last 2 years being hell on earth. If I'm worried about the odd nappy and E D now, then that's nothing compared to what will be in store for me. The Oncologist spelled a fair few of the nasties out for me and I can promise you , you will not want to know !

You say you are fit and I assume otherwise healthy. ( as am I ). Good. That means you will have a much better time of dealing with the side-effects.

Yes, I've done a 180 degree shift in position.

With what I know now Ivan only encourage you to do the same.

Good luck Peter

Regards

Dudley

3

Many thanks Dudley. Your advice couldn't have been clearer! My wife is especially grateful as she has been very troubled by my wavering. So, good luck with the radio therapy and let's hope we both get away with minimal side effects.

The only point I am still not clear about is whether the radio therapy will knock on the head any cancer that has got out, even microscopically. My oncologist has talked of zapping the lymph nodes as well, but he says that there is some evidence that the cancer gets out through the blood stream, in which case, there would be no point.

All the best and we'll keep in touch. Peter

4

It is good to hear from you Peter, and I am gratified if I have been of assistance. The problem I had was perhaps not dissimilar to your own, I. e. : contemplating treatment that could quite possibly have debilitating side-effects for me; when I had been accustomed to having both good C V fitness and musculature; and apart from a reduced flow, no other symptoms.

I also thought, erroneously, that what I consider to have been an amazingly good physiology for 7 decades would somehow see me through again. But I was wrong.

Common parlance invariably comments on 'fighting cancer'. But the reality is you cannot. Unless turning up for treatment, and possibly eating sacks of carrots etal qualifies.

I now know that by far the best and most effective treatment for cancer is early intervention. And unfortunately for both you and I, we have missed that window of opportunity.

So what we are now left with is damage limitation.

And we do not have options.

From this point on, although there are a potentially confusing number of ways. ( confusing to us, but not to the medicos, who have seen it all ), in which treatment can be administered, we nonetheless do not have any viable alternative to what may be recommended for us.

One Specialist said to me " We are trying to keep you alive, Dudley. " And they are doing this at not inconsiderable expense, in the hope that a more effective and permanent treatment regime may eventuate in the meantime. ( This does I think, go some way towards explaining the variety of approaches by the medical profession that we patients tend to find confusing. It seems that no-one really knows what might work best for which particular patient. But they are dedicated to trying to do something ( because the alternatives are truly hideous ) and they are seriously trying to help.

Not surprisingly, I began to feel like a bit of a Cad.

Of course I don't know and this may sound stupid but it seems to me that, what might be the best outcome for myself under the circumstances ( and possibly most of us in a similar position ) would be to keep the Prostate Cancer at bay and ' try ' and die of something else in the meantime.

Believe me, from what I've been told, we really don't want to DIE of Prostate Cancer.

I hope this may help additionally Peter and I am pleased to hear that your wife is relieved that you are receiving treatment. Well done. They suffer too.

Take care of yourself.

I am by no means a Senior Statesman in these matters, but if you ever want to run anything by me, then feel free.

Best wishes

Dudley

5

P.S.

As your Oncologist is talking about zapping your lymph nodes, then have them zapped when he recommends it Peter.

He is only talking to you like that because he has seen so many other patients in your position and he knows what is almost certain, to happen next. At Gleason 9 you must have at least, a permutation of 4 & 5. That score means your cancer is now within the higher degree of aggressive behaviour and really beginning to ' get on with it '..

And he wants to try and prevent its progress.

It means that as of now, you've got a fair chance of slowing it down. And if I were you, I would take it.

Because otherwise, sadly, you probably do not have much of a long-term chance.

The Medical Profession generally seem reluctant to and will even avoid, talking to you in this seemingly bluntmanner. But that is the reality.

This does not mean that you cannot spend every day as a celebration of life itself and with gratitude for both its longevity and the blessing of having the love and support of a caring partner.

I am sure you will go well Peter and both yourself and your Wife will have months and years of happiness despite recent developments.

Attitude is all. I believe.

And so I spit on my cancer daily !

Dudley

6

Thanks Dudley. Actually zapping the lymph nodes is now off the menu as my private health insurers are currently refusing to play ball. But I take your general point - go for anything they can offer in the hope of delaying stage four as long as possible.

On reflection though, I think I prefer my own oncologists reticence to spell things out too brutally to your oncologists Australian candour, particularly when the truth is so depressing. So thank you for not going into detail. And actually there are some specks of light on the horizon. For example, a friend in the pharmaceutical industry was telling me today of a Norwegian company that has developed a drug so effective in combatting metastases in the bone that Bayer has promptly snapped them up!

I'm going to avoid the forum now until I have had my radio therapy as I find it more depressing than uplifting. But I'll be in touch. In the meantime, let's both deal with each day as it comes and celebrate what we have. Best wishes from both of us. Peter

7

If I may Peter...a few final words, before you go 'off air' ?

Firstly, please accept my sincere apologies if the information I have imparted to you has caused a deepening of depression.That was not my intention at all. I was trying to advise you about what I now KNOW so that youwould hopefully abandon your instinctive reaction to diagnosis, to not have treatment. A stance* I once fully appreciated.

Secondly, I hasten to advise you that actually the Australian Specialists are very far removed from being ' as rough as guts ' ( an Aussie phrase ). Quite the opposite. Quite genteel, highly intelligent men so far. All of them. ( We are talking Medicine, not Cricket ! ! ).

And believe it or not, I am quite sensitive too. I assure you that I am not a ghoul, nor a doom-sayer, in any way at all. And I visit forums, but rarely.

To know what I now do, I was pushing very hard indeed, against having anything done. I had been non-attending for regular PSA tests and refusing a needle biopsy for about 5 years.

I remember now more accurately, the the phrase they used eventually once poor test results were to hand and I was still resisting treatment, was : " We are trying to save your life, Dudley. " And even then, for a while, I thought : ' That's a bit dramatic isn't it?' . ( I guess, that's an indication of how ' special' I vacuously thought I was. But, I am not ).

Also I felt I had too much to lose by being unwell. My Partner of the last nine years ( we maintain separate houses ) is extraordinarily physically lovely for her age. A real head -turner. Men have always tried to hit on her and in some ways, this has led to her becoming vain and dare I say it, a bit Bimbo-ish about the attention she receives. And because we hadn't got kids and a long shared history together I was scared she might sooner or later do a runner if I was to announce that I have a serious infirmity.

So far, she is still in the frame, but to quote a lyric... " Things ain't what they used to be." She is definitely wavering. Less available. Less engaged.

Best to let it drop it there, I think. This is a Public Forum.

I am pleased to note however Peter, that you have a loving, caring and concerned wife at your side.

( Another Aussie phrase... " Half your luck " ).

No, but seriously, I am not jealous of your good fortune.

May you go well Peter.

Regards

Dudley

8

Thanks Dudley. I appreciate your message. And I needed a reality check! Best wishes and good luck. We'll keep in touch. Peter

9

Hello Peter

Thought my hubby's experience might help you. He was diagnosed with Pca aged 76 with a Gleason score of 8 and was treated with daily radiotherapy sessions for 7 weeks followed by hormone implants to block testosterone for some 18 months plus (testosterone apparently feeds the cancer). He sailed through the radiotherapy, still working in his part time job (he is now 78, and had few side effects from the 3-monthly hormone injections, the main one being night sweats. He had the last injection about 3 weeks ago and has now been discharged from the regular urology/oncology appointments, with just PSA checks for the future. Have you looked at the Pca forum (can't quote the website here as it will disappear for a while) but there is loads of very helpful and professional information the.

10

MrsO,

Many thanks for the feedback which I found very encouraging.. I hope you and your husband have many more trouble free years together. Peter

11

Hello there Mrs O,

It is good to hear of your Husband's experience which seems better by far, than any of the scenarios contained in the written material provided by MY Hospital.

So would you mind stoking the fires of hope, for both Peter and myself by confirming, that your Husband experienced : no urinary &/or foetal incontinence, no diahorrea, no bowel irritation and no fatigue? Because the literature supplied by my Hospital's Radiotherapy Dept. expounds upon these symptoms, with a confident air of expectation.

And indeed one day post my T U R P & B N I and when I was still leaking and undergoing further tests, I needed more' Tena ' pads than I'd left home with. So I asked at the Rad. Dept if they could let me have a couple.

Their stores had no frontal urinary pads at all. They don't keep them . Their stores were comprised of two types of pad only. Either insert pads that went from front, underneath and to back. Or literally huge ' Baby ' style wrap- arounds that you stepped into. These had to be seen to be believed.

So if your Husband had no need for any of these aids, nor any other symptoms that would spoil a good day's sailing, then he was very fortunate to be on the ship he was on. And we'd rather like to know, where to get tickets.

Kind Regards

Dudley

12

Hi Peter,

As you are having a break from this site I don't know if you will get to see or be interested in this but, I started my Radiotherapy yesterday ( 31/ 3 ).

I am having 42 radiations. 30 will be at a relatively high strength and then 12 more at lesser strength.

The young bright cheerful and generally attractive female staff ( a bonus and a tonic ) appear to be super professional and are infinitely careful in getting the radiation beam laser guides to exactly the right positions .

With that amount of care it is obvious that they are seeking to minimise collateral damage.

Surprisingly, although I thought my Prostate to be the size of a large walnut and that they would be zeroing in on my tumor, that is not the case.

For the first time in the history of the development of my disease I have been shown M R I pictures of my internals and what they are actually targeting, which turns out to be a general area the size of a medium to large avocado, incorporating my prostate. So they are certainly zapping a margin much larger than I had any idea might be affected by cancer.

This would appear to be conclusive proof positive of the error and folly of my earlier thinking, which centred around the tactic of denial, avoidance and delay.

Mrs O hasn't yet revisited the sight with confirmation and details of Mr O's stellar progress through Radiation Therapy. That's a pity.

I do hope he actually exists and this is not a case of a well wisher-trolling the site administering emotive panaceas. As with all medical claims, proof is required, especially when they are so far removed from common experience and It would be good to hear from Mr O himself, even if it's only a simple " Yus Mate, I never felt nuffink. Honest. "

Why I say this is because at my Hospital I was sat down and given so much individual attention, I literally began to feel like ' The English Patient '. It was as close to physical comforting as you could possibly get, without touch.

Additionally I was given:

1) a tube of Sorbolene moisturiser, with an assurance of unlimited re supply, to use on expected sore patches

2) advice to buy a hand mirror, in order to regularly check my skin where the radiotherapy exits the body.

3) an 11 page booklet titled ' Coping with cancer related tiredness ( fatigue ).

4) and three more booklets, namely : Emotions and cancer

Nutrition and Cancer

How can I relax

These in addition, to the all booklets and pamphlets previously given to me about incontinence and impotencetal.

So if Radiation Therapy is something you can ' sail through' , why do they scare the sh_t out of us, if it is not going to fall out of us anyway?

After all, those of us who have had to overcome grave misgivings about having any treatment at all, only held that position because to us, the treatment sounded worse than the disease

So I say, ' Come on Mr and Mrs O. Could you please be more specific? '

( Also we are real and genuine people with real problems and who care about each other, so why I wonder, the ambiguity of using ' Mrs O '. Or, given our respective predicaments, is that something of a cruel tease? ).

Best Regards

Dudley

13

Hello Dudley - my post was really just in response to Peter's question: "Has anyone with Gleason 8 or 9 said no to radiotherapy?" as my hubby had a similar Gleason score and underwent radiotherapy with few side effects which I thought would help to reassure Peter.

It was also to point Peter and anyone else with a similar query and looking for answers to the Prostate Cancer UK Message Board, a very active forum where you will get lots of very helpful advice from those who have been there and got the proverbial t-shirt. If you haven't already done so, do contact the Prostate Cancer Charity who will send you essential information on prostate cancer entitled 'Tool Kit'.

My hubby didn't suffer any side effects to his bowel from the radiotherapy but did find he couldn't ignore the call of nature with regard to his waterworks for some time - simply solved by the reassurance of Tena Pads from Boots for special outings. Yes he did have bouts of fatigue, but after all was working part-time throughout.

All good wishes.

14

Hello Mrs O

Thank you for replying. I am very happy for both you and your Husband that he has been, as you put it, ' discharged '

He must be very pleased that after such an outstanding passage through Radiotherapy, he is now going to be having an undefined long break from Hospital visits too.

You also must be very relieved. And therefore I just wonder why it is that you are not taking a break yourself from the Forums ?

As we know , hormone injections suppress the multiplication of cancer-cells. And so, if your Husband is now post both Radiotherapy and hormone treatment not requiring more treatment, then would you mind telling us what his successive 3- monthly PSA scores were, which led to this confident approach ?

Thank you

Dudley

15

Dudley - hubby isn't here at the moment but if my memory serves me right his PSA is something like 0.1. I know the reading remained stable throughout his treatment. Expected to rise a little now as the treatment has ended.

As for why I'm still involved in the forum, I'm very involved working for a Charity and running a support group for sufferers with another medical condition, was looking up something entirely different on the Pat.Exp site and came across the PCa one by accident, noticed Peter's heading to his post and thought my reply might be reassuring.

16

Mrs O

Currently, PSA scores and DRE are the most reliable ( non- surgically invasive ) means of determining the degree of cancerous activity remaining within the prostate.

For your Husband to have a score of " something like 0.1 " just three weeks ago, must be most encouraging.

Also Him being 'discharged' would seem to predicate that his MRI and bone scans do not reveal any traceable metastasis. And I wonder, did he have those scans, and with clear results ?

But then he has just three weeks ago received another hormone injection. Hmmm, it's puzzling...and without being fleshed out with clinical detail, sorry, it is not very helpful to us.

Also from what you say, your Husband ( seemingly, like yourself, another name-less entity ) has been receiving treatment for 18 months to two years.

How curious then, that given both your apparent underlying philanthropically curious nature and the prominence of this site on the www. you did not discover this site, until " by accident " just a few days ago.

Regards

Dudley

17

Dudley

I'm so sorry that you have found my reply "not very helpful to you". On the contrary, I initially posted in the hope that it would be encouraging for Peter and others in the early days following a diagnosis of PCa to hear of someone who had been diagnosed, gone through treatment and recovered.

Yes at the outset my hubby had all the routine investigations such as CT and bone scans and no spread was found.

Nothing "curious" at all about me only recently finding this site - I have already pointed you in the direction of the very active Prostate Cancer UK Message Board, and also the Prostate Cancer Charity - both these gave all the reassurance and advice I was looking for in the early days following my hubby's diagnosis. I feel sure you would find it immensely helpful and informative by registering with the former.

My hubby is not much into the computer, so not involved in any forum. As for your description of both me and him being a "name-less entity", surely that is the nature of joining any forum, and I think you will find that most people prefer to remain anonymous, and I'm sure the moderators are happy with this.

I wish you well but I won't be joining in any more dialogue, especially as you have found my well meaning replies "puzzling", "curious", "not very helpful".

18

Hello Mrs O

Thank you for your sensibility and the wisdom of your concluding decision.

Regards

Dudley

19

Hi Peter,

Thought you may be interested to know that I am  7 sessions of EBRT from completing my 42. In my case on completion it will have been 28 to a general area including the seminal vesicles followed by 14 of  higher intensity and focus specifically targeting the tumor itself. It is this latter stage that poses the greatest risk to the functioning of bowel, bladder and sexual organs.

So far, I have  managed O K . But there are the expected side-effects, which start to kick in and increase in severity from about end of week three. 

Fatigue is a reality as is sleep disturbance, possibly due to being hotter and sweaty at night. ( Another patient described themself as being cooked!). Also, bowel function is somewhat ' confused ' and I struggle with treatment induced urinary frequency and rectal proctitis. I am advised These symptoms May, May not persist and or become permanent.

PSA will be taken at three months post treatment and only that reading will determine success or otherwise,  the indication that hormone therapy is required.

They have advised me that they have given me the max EBRT I can ever have in that area now, in the hope that they can get it all.

i remain positive and optimistic and am doing my best to enjoy life regardless.

I hope you are going along o k.

best wishes

dudley

 

20

Hello Dudley

Good to hear that the radio therapy hasn't been too bad and that you are near the end. Mine starts on June the 18th - 38 sessions in all, which is slightly less than you are having. Though I have been on hormone therapy since February and have been told that it will definitely continue after the treatment as the oncologist suspects the cancer has already spread microscopically. But let's hope it hasn't in your case and you get a nil PSA reading. let me know. Best wishes,  Peter