Recovering from prostate cancer

[Leger2015]

I was diagnosed with prostate cancer in December 2015. I had 39 fractions of radiotherapy in July and August 2016 and have been on hormone therapy since January 2016. I suffered from weight gain but now controling it but of course suffer from hot flushes and the famous erectile dysfunction. It is a problem but I have a very caring partner but I am just grateful to be alive because there is so much more to life now I have a second chance. I would like to share my experiences and get advice any advice that might help. I am happy to discuss my circumstances and answer any questions without any problems or hangups whatsoever. Thanks

[Darryl Partner]

Hi ledger. Welcome aboard. Since you are on aft, consider following the advanced prostate cancer group too

[Leger2015 in reply to Darryl]

Thanks for your welcome reply what is aft short for by the way? Thank you and speak soon.

[Darryl Partner in reply to Leger2015]

Androgen deprevation therapy. Adt

[Roger2Dodger]

HI Leger

Your attitude says it all. Just getting through treatments, and going forward , just gives one's out look on life a different perspective.

I am having EBRT treatments, just finished 18 of them , 25 more to go. Side effects to me has been bothersome. Burning while urinating, and the frequency urinating at times just drives me nuts. I am not on Hormone thearpy. Sure am glad of that. However, my libido is down to Zero.

What is your age? I am a young 76

I am also curious why the hormone thearpy? MY Gleason was 4 +3=7 and Guided MRI showed PCa still in caspule.

Comparing treatments with others, and side effects etc. Is very supportive for me. I am just wondering if Hormone thearpy is in my mirror after treatments.

Roger

[Leger2015 in reply to Roger2Dodger]

Hi Roger

Thank you for your comments.

I am 65 this year and when diagnosed I was very surprised to find I had a PSA of 54. Actually I did not know that it was bad and why would I. My Gleeson was 4+3 and the bone scan showed clear. I was rather worried because I was told what it meant for it to be in the bones. I was worried go be honest. The treatment went well but by session 37 I found it hard not to want to pee before the radiotherapy session finished. It was a struggle. I am on hormones to keep the testosterone blocked as I understand it feeds the cancer or gives it a chance to be mischievous again. I urinate about 3 times a night sometimes more but occasionally I have peed about 14 times and that is just crazy. It is rare though.

I have had pain in my muscles and some muscle wastage but was advised to do gentle exercise. I used to do lots of exercise. Fatigue was a massive problem but that is improving a bit. I have had to change my eating habits because I was gaining an unwanted stomach but now controlling it and will do more exercise soon as the weather gets better and my fatigue becomes more reduced. I feel lucky apart from now lacking libido and not being able to obtain hardness if one can call it that. I know most of us are in the same boat so it helps and I know it is not just me. Life goes on.

[Leger2015 in reply to Leger2015]

So my radiotherapy treatment finished on 5 September 2016 but hormones for the next 2 years at least but when I saw my consultant most recently in January 2017 my PSA was 0.03 and my testosterone was 0.5. They were very promising scores. I will see my consultant at the end of March for my next blood test and review. Hoping results are much the same. My consultant suggested I take Pomi T when I was diagnosed as is supposed to assist the body. I have been taking it for 13 months now. I should say it is a concentrated form of Tumeric broccoli pomegranate etc which you could not take in sufficient quantities in pure form.

For my erectile dysfunction I have tried Viagra and Cialis but both to little effect. They no more effect than the mind and normal arousal if I can even call it that. I think it is a question of getting your head around what loss of performance means and understanding that what I used to be able to do is not really all the act with your partner means. Once i understood that it did help. Also knowing that I was affected at the age of 64 and not 43. It rather puts things in clear perspective.

[Roger2Dodger]

Leger,

Your scores do look promising. Like you said the ED at your age does put it in perspective. One can be thankful to be alive, and can still have good years to live and enjoy life.

I understand after EBRT your sexual function will age 7 years, the radiation does harm to the tissue surrounding the area where you get your sexual arousal, or stimulation. In other words a 70 year old man goes to 77 in sexual function. Well, at age 76 no concern of mine lol.

I will be happy when these treatments are over, it is a mental thing, drinking that water and holding it. Some days I pee constantly, some days not. I do get up 2- 3 times a night to pee, before treatments it was only once. At age 76 my libido was great, an erection on demand, now after the MRI guided biopsy , and the treatments. I went to zero. The burning is worse at then goes to mild tolerable. Bowels are not the same, very different than before treatment.

Well I will stop whining and go and finish what I started. Some days I wish I would have stayed on AS, too late now.... I hope the best for you, take care and stay in touch!

Roger

[Scruffybut1 in reply to Roger2Dodger]

Roger you've spoiled my day! Yesterday I was only 71but you tell me I am really 7 years older. I don't know how to live like a 78 yr old. I suppose with no self propelling libido I already do! David

[Roger2Dodger in reply to Scruffybut1]

Scruffybut1 ,

Sorry I spoiled your day. My family tells me I read to much, and I probably do. Since my PCa diagnosis I try to stay informed, but sometimes you find out specific details that adds to the facts of a dreadful disease. However, I try to take what life gives me one day at a time.

Roger

[Scruffybut1 in reply to Roger2Dodger]

At least you made both Mr and my lovely wife laugh.

Thanks. David

[Leger2015 in reply to Scruffybut1]

Morning David

Well though I did a little bit of exercise the spur from you guys has had an effect. Some four months ago my weight was such that even walking was not enjoyable. I have been fit all my 64 years but since 2016 it changed. I changed. I was positive but I possibly wallowed in self pity. I am in week 5 of my healthier eating regime. I have lost weight and it shows as my stomach recedes from attack of healthy eating. In the last two days I have walked 7km and yesterday 2.5km from the station after work. This I will do every evening now.

I have been reading the book by Richard Wassersug as recommended and it is enlightening. It doesn't have all positive news ie fairy tale ending but it is a great manual telling us what we need to know and maybe didn't know for fear of knowing. I am ready for all I need to know because it is important to be healthier when having PC than when not.

One thing I will say is that for all of us who have been given a reprieve it is vitally important we do our best especially for our loved ones and for those who would dearly love to be in our position but are beyond that.

Ok so I have E dysfunction but then so do lots of men.

Can't wait to walk home in 7 hours time. Heaven help the fat cells.

Enjoy today.

[Hidden]

RE: "will do more exercise soon as the weather gets better and my fatigue becomes more reduced"

Nope. It's exercise (both mental and physical) that helps protect us from both mental and physical fatigue. "Weather, Smeather"; get your butt moving NOW, and move it hard and fast, snow or no snow, hot or cold, rain or sunshine. Your health depends on it. Even when it's 40 below zero and blowing 40 kts outside, it's perfect indoors, and there are countless ways to work up a good sweat and build some muscle in your living room or den. For the brain, study some new subject (such as cancer) every day and write something (such as about cancer) every day.

Is a "consultant" an oncologist? If not, hie thee to an oncologist.

[Leger2015 in reply to Hidden]

Hi

I know and I see that I was using the fatigue as an excuse for not moving my butt. I agree. Yes I have been tired but not to the extent I cannot walk down the road or walk a few miles. I feel rather embarrassed because there no real reason why I can't climb on my indoor spin bike or put walking clothes and jacket and walk a few miles.

Doing this now could be crucial and why put off what we ought to do today.

Thank you and sometimes we need the obvious pointed out to you.

I used the wrong terminology because the consultant is an Oncologist and I think I am lucky to have an extremely good one.

We have both national health and private and I have had the good fortune of being treated privately. It means everything is done quickly or rather you don't have to wait months which can be vital as we know.

Thank you!!

[Hidden in reply to Leger2015]

You're welcome. Now buy an exercise book (or find an exercise website full of exercises) and get WAY beyond walking or spinning. Two general topics to look up are HIIT and using your body as your gym/ bodyweight exercises. Here are just two of countless examples:

greatist.com/fitness/50-bod...

and

dailyburn.com/life/db/hiit-...

Either HIIT or bodyweight exercises (both is better) will increase your energy levels, your health, and the way you feel in no time, and nobody's keeping score; you just do what you can, and what you can do will increase rapidly. The older and lamer we are, the faster we improve.

[Victorq1 in reply to Hidden]

Great advise on exercise.

BUT I walk almost daily 2 km

and swim almost daily ,for one hour. I feel improvement in my muscle toning ..

BUT the stomach does not co-operate. In about 2 years it about tripled in size.

I listened to a talk on hormonal changes

(age or chemically induced) and the specialist was commenting, that this stomach size increase is typical for lowering the testosterone.

I see these stomachs in Bavaria Germany, on almost all men,they have this stomach, after uncontrolled beer drinking - smile !

Can anybody recommend a better diet or a book, or articles on the subject, while surviving / controlling advanced PC. One, which not excludes an occasional beer or glass of red wine, smile again !

Our friend and moderator Allan once commented, that changing the diet ,during Advanced PC , is like trying to extinguish forest fire with a cup of water.

(Am I right Allan?)

Any further thoughts?

Thank you.

Victor

[Scruffybut1 in reply to Hidden]

You can have a top dog Consultant Oncologist, a Specialist Registrar Oncologist (SpR) 1 level down, a Senior Registrar. Even a Registar. These levels in the NHS UK apply to all disciplines.

I see my consulting team 4 times yearly and my lead specialist nurse 8 times. Great service and fun people. Even my hospital dentist laughs at me. David

[ng27868168]

Hi Leger, welcome. Please don't read anything into my question, but I'm Just curious as to why you opted for radiation rather than surgery? As a 76 year old, 24 year PC survivor, following surgery, radiation treatment and hormone therapy by orchiectomy (testicles removed) and an active member and facilitator of our local PC Support group, I have observed men who have been treated successfully by radiation alone and some who have had a recurrence when treated by radiation therapy alone. But I should also say that the same success rate happens to men who have had the surgery first. Just curious. Thanks and good luck.

[Leger2015 in reply to ng27868168]

Hi and thank you for contacting me. The simple fact is that when diagnosed I had a discussion with two consultants and they laid out my options to me. Surgery was the first and obvious option but I was advised that there is a risk of the cancer spreading, complications which may still require me to have radiotherapy and hormones. It was felt that there was a bigger risk than simply having radiotherapy and hormones. I bowed to their knowledge and agreed to radiotherapy and three years of hormones. At the moment everything seems under control and I am grateful for that. I will know more at my next consultation at the end of March. The other point I should make is that they carry out a discussion with 10 other consultants to agree the best treatment for their patient.

I trust you are well. Regards

[ng27868168 in reply to Leger2015]

Leger, thank you for your response. I basically did the same when I was diagnosed 24 years ago at age 52. with a PSA of 10.8 and a positive biopsy. I asked several other Docs at the time as to what they felt was the best option to take. Their advice was to have surgery. But a lot of progress has been made in the 24 years since my diagnosis and there have been major advancements in surgical procedures as well as radiation and hormone therapy. As long as we are sharing, I noticed you mentioned that you are having Hot Flashes from the hormone therapy. I consider myself to an "expert" (not really) on hot flashes since I suffered from them for 18 years following my version of "hormone therapy" which was having to have my testicles removed to stop the production of testosterone. (at that time my health insurance wouldn't pay for the 90 day charge of $1800 of the medicine to eliminate the production of testosterone) My Urologist at the time who did the orchiectomy casually mentioned that "you may a "few hot flashes" from time to time". Unfortunately I was one of the few who have more! Like 1 or 2 an hour for 18 years and at times I thought I would set the bed on fire. I tried many drugs and "old wives tales over the years for relief with no luck. But finally my new urologist told me about a study from Sweden which involved some 38,000+ older men who experienced Hot Flashes and who were years out of active PC treatment and were given monthly testosterone injections to control hot flashes. I agreed to try it and it has worked as I have been getting monthly injections and having my PSA monitored every 90 days for the last 3 years with good results and no PC detected. Good Luck.

[cpcohen]

There's a book you might find useful, on ADT, its effects, and ways to get around them:

"Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" -- Richard Wassersug.

It's available from Amazon.

. Charles

[Leger2015 in reply to cpcohen]

Charles

Thank you ever so much.

I am going to get the book by Richard Wassersug now.

Speak soon.

Leger

[Vitruviusman in reply to cpcohen]

I have been reading all of these different treatments. The one that scares me the most is this Hormone therapy. My friend is on it, and he said it "feminizes" him and his body. Seriously?.. I mean Seriously? I mean having PC is enough but to add this too? The Doc gave him one shot good for 3 months and he has to go again in another 3 months.. Breast development Loss of male muscle mass and male hair patterns... What actually are the side affects of this "THERAPY".

[Scruffybut1 in reply to Vitruviusman]

Not much. Shrinking penis, rubbish testicles, loss of desire, difficult erection if you ever feel like it! It replaces the effects of Orchiectomy and gives you the opportunity to return to a more normal sex(y) life. If you've had your testicles removed that's not an option. And a host of other things!

[David1958 in reply to Scruffybut1]

Scruffybut1 said,"Not much. Shrinking penis, rubbish testicles, loss of desire, difficult erection if you ever feel like it!"

Now you have done it! Millions of men around the world are running around with their hair on fire (where ever that hair may be), saying,"I'd rather die than do that!".

[Victorq1 in reply to Scruffybut1]

Yes, I have had all the "horrors" described above!

I am on Hormonal Therapy, Intermittent, until now and my Oncologist wants me to go on Permanent ADT, from now on (I am 72 ),because of the PSA doubling time.

I have been trough all the described side effect of ADT.

BUT

as our friend and Moderator Charles (Chuck) once

stated:

In this "game" it is better to look at the grass from the top

than at the roots from down bellow !!

Great advice and thanks Chuck.

I am (was) a chemistry teacher and rely on all the briliant young people who in time will bring us a better PC treatment--

or eliminate PC altogether, to the "horrors" of medical and pharmaceutical "industry".

Cheers to it with red wine ( Resveratrol)

with Pomegranate seeds added.

Victor

[cpcohen]

Side-effects vary widely, man-to-man. But "breast development" and "loss of muscle mass and male hair patterns" are both on the "common side-effects" list.

By and large, when someone _stops_ "hormone therapy" ( = ADT = androgen deprivation therapy), the side-effects disappear, and the old male self returns. And there are some things you can do to minimize the side-effects.

Remember that a doc's job is to give you treatments for which the _positive_ results outweigh the _risk of negative results_. ADT is serious business. But it has been shown to improve the effectiveness of radiation therapy, and it's really useful against metastatic prostate cancer. So you must weigh the side-effects against the benefits.

A book on this topic (I keep recommending it):

"Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" -- Richard Wassersug, PhD.

. Charles

PS -- I haven't been through ADT myself.

[Leger2015 in reply to cpcohen]

Hi Charles

Thank you very much for recommending ADT by Richard Wassersug. I am reading it now and finding it both interesting and informative.

It can only help and I now realise that the more information and understanding one has the better you can cope.

The focus must never solely be on how unfairly treated you think you are because that is simply not the case.

I am more positive eating healthier will meditate more and step up my fitness.

Recovery is not just about drugs but also ensuring your body has the right equipment for the task ahead.

Understanding more fully what ADT does to the male body and sharing with others experiencing similar symptoms is so valuable.

I am not alone.

Leger

[Scruffybut1 in reply to Leger2015]

Leger you are definitely not alone. Since my 8 months of chemo plus ADT I now only pop a few pills each morning, pretend I am not ill, and get my Zoladex quarterly. Have worked hard to drop the rising weight and am now level with the more slimline me from 1991. Figure if I keep the same drugs doses I'll be even healthier. Less of me to treat!

[Bab52413]

I just had the robotic prostatectomy. I get catheter out tomorrow. Still very nervous and uncertain of the road ahead.

[jdfamily]

Thanks for all the information and comments on this site. I had prostrate surgery in March and am doing well, just had my psa checked yesterday and it is where it needs to be, thank you Lord. Working with two great doctors, who are the best through all of this. I do have a question, the famous, or infamous ED is there, interest is high, but performance is not coming along. Any suggestions??? My doctors keep saying it is too early, be patient. Thoughts????