My apologies for not seeing your post earlier, Sambo, but I hope this may help you or others contemplating androgen treatment. As you probably know, androgen injections reduces testosterone which is the food for prostate cancer. I had an18 month course of androgen which knocked down my testosterone & PSA to virtually zero. 18 months later both testosterone & PSA are sub 1. The side effects that I experienced were: -loss of libido -some muscle turned into fat -loss of energy -slight breast enlargement & sensitivity -penis reduction by about 50% -testies reduction by about 40% -severe tightening of foreskin (was not circuncised) with difficulty washing -mild depression That said, I elected to take the androgen injections to shrink my tumour before radiation and as a safety measure to possibly destroy any cancer cells that had escaped into the system. My testies and penis are gradually returning to normal so I elected not to have a circumcision. "Staying Alive " is now my favourite song. My current blood tests indicate that I am probably clear of cancer because both my testerone & PSA are sub 1 and I have just embarked on psychological councelling to get me out of my mild depression and make me whole again. Cheers Zol
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3 years since my diagnosis: Prostate Cancer Gleeson 9 Tumor T3A Treatment: 18 mos androgen Injections + 39 sessions of external radiation. It is now over 3 years since I was first diagnosed with prostate cancer, two and a half years since my radiation & 2 years since my last androgen injection. My blood tests are all clear: low PSA & low testosterone. My oncologist went into great detail before I had my injections as to how they would shrink the tumour and reduce testosterone ( the cancer food) She did not tell me, however, what side effects to expect. They were: -an increase in body fat -mild breast enlargement & sensitivity -fatigue -loss of libido -penis shrinkage by about 50% -testies shrinkage by about 40% -severe tightening on the foreskin (I was not circumcised) -difficulty cleaning under foreskin -penis nerve pains -mild depression That said , howevre, I would have still elected to have the injections even if I knew what these unwanted side effects were going to be and I am now eternally grateful to the team who provided me with amazing treatment & care. Over the past few months I have been having occassional erections while sleeping which wake me up due to my foreskin being still tight. It is loosening gradually so I am now reluctant to have a circumcision because if things progress at current , I should be quite normal within a year. I have tried sex a few times and I climaxed without ejaculating (anejaculation) I believe that this is quite normal for someone like me who has had both my prostate & my seminal vesicles radiated. I am not complaining because I elected for safety and longevity first. I am being treated for mild depression: -excercise -diet -out in the garden early in the morning (sunlight-seratonin) -setting small goals & achieving them -sleep hygene -at least 3 positive thoughts/actions for every negative one (dopamine) -catching up socially with friends (was inclined to be homebody post treatment) -stress & anxiety reduction strategies* I trust that my experience will not deter those contemplating androgen/radiation treatment because, in my particular case, it was by far the best option. I have had no bowel or urine incontence or related aches or pains and I am as happy as "Larry" that everything has turned out much better than I initially expected. Cheers Zol * "The Upward Spiral" by Alex Korb PHD, is a useful starting point t understand the neuroscience behind depression and how one can reverse this process one small change at a time. It costs about $30 but you can reserve it via your local public library.
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Good to hear that you are progressing well with your radiation program.
I completed 39 sessions of external beam radiation (2 Grays per session ) last July
and even though I had minor bowel & peeing problems I am very pleased with the result.
My diagnosos was:
Gleason Score: 9
PSA increased from 2 to 4 over 2 years
-6 mos Androgen injections
-then 39 sessions of external radiation
-then another 12 months of androgen injections (5 months to go)
-Aug 2015: PSA 0.03, Testosterone: 0.06...............In remission
-Jan 2016: PSA 0.03. Testosterone 0.05................still in remission
-side effects mild.......bowel movement 3 x times daily after radiation and settled back once daily
4 months later
.......woke up 3 times nightly to pee for first 2 months post radiation, then selled back
to once nightly
.........hot flushes from androgen regular.......twice or so nightly and 4 or so during the day
these cause tiredness but I am advised that these side effects are quite normal
Prostate cancer is fed by testosterone so the role of the androgen injections is to minimise testosterone
thereby reducing PSA which is the blood fingerprint of prostate cancer.
The big test will be next August when I finish the Androgen injections and have the PSA & Testosterone
test. If testosterone increases as expected and PSA remains low (sub 2) then I should be right.
If not its back to the drawing board.
George, have you been advised what your tumour rating is and what your Gleason score is. These
values are crucial because the T rating indicates the extent of the cancer( T1 being mild and T4 being extensive after which N & M levels follow) and the Gleason Score indicates its rate of growth of which 2 is very low and 10 is extremely high. Most prostate cancers are slow growing (Gleason 6 or less) with low T ratings.)
It seems now that radiation theraphy is having similar results to radical surgery with less side effects.
Cheers George and dont worry if you get some minor side effects in the last week of radiation because,
in my case, these cleared away over a few months. Also ask the hospital for the CD on strengthening
the pelvic floor exercises.
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I have had my 6 month Radiation Oncology follow up consultation last week and I am still in remission.
My PSA was 0.03 and my testosterone was 0.06. The Radiation Oncologist was very pleased with these very low levels. I will be getting my last 6 month androgen injection early January. I will have 3 month blood tests for another year and then 6 monthly thereafter.
The real test will be this time next year when the androgen wears off and testosterone levels get back to normal.Any abnormal rise in PSA after that would indicate that radiation did not get all the cancer but
my Radiation Oncologist has assured me that such is highly unlikely and that my blood results are as good as it gets.
From my radiation /androgen experience so far, it has been not as bad as expected and I would recommend this treatment as a preferable alternative to radical surgery.
If you are on this journey and need more info about my experoience so far, just post a note and I'll
get back to you ASAP.
Cheers and a happy Christmas to all.
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You seem to be at the stage that I was at this time last year.
For me the anxious time was between diagnosis and getting treatment under way and understanding
what my cancer is and what the labels mean For me there were three key measures:
(a) The tumour rating ( T?)
(b) The rate of growth (Gleason score)
(c) PSA level and the time it took to double
Then there are the treatment options depending on your age, general physical condition -incl weight
and the nature of the cancer.
-surgery- conventional or DiVinci Robotic
-radiation (internal or external) with option of androgen therapy
These options are mainly determined by all the variables and your Uroligist-Oncologist-Radiation Oncologist with others working as a team will usually offer the best course of treatment
The key item to qualify is what is the tumour rating:
-T = generally confined to the prostate and has not gone to the nodes
-N= gone to the nodes
-M= Mastastisided ( gone beyond the nodes)
In my case my Tumour was T3B & my Gleason Score was 9 (4+5)
My treatment was:
-6 mos androgen injections to shrink the tumour
-gold beads inserted in the prostate to focus external radiation
-39 external radiation sessions with 2 Grays a pot.
-Follow-up Testosterone & PSA blood tests (testosterone feeds the cancer)
-in remission since late August because my testosterone and PSA were both sub 1
Then there is the Gleason Scale
It is arrived at by adding nimbers between 1 & 5 for the two most prominent cancers
eg 2+4 +6 etc.The higher the total the more agressive the cancer is. 9 & 10 are considered
very serious while sub 6 are considered not serious and can involve watchful waiting.
In my experence there are two distinct type of prostate cancer sufferers:
-those like me who want to know everything about it
-those who do not want to know much about it; just simply trust the specialists and the
During the whole journey, it is important, IMO, to stay positive and find useful ways to
attract ones interest and attention ( a friend of mine with cancer said: "read lots about but dont over-think your personal situation) I have found that staying positive has helped my family and friends to deal with it
and , in my case. it has warded off depression.
I now volunteer 2 half days a week on cancer wards at my local hospitals and i find this very rewarding.
The Cancer Council and Mayo Clinic have good websites but if you have concerns that your
specialists are not clearly explaining please feel free to post and perhaps some of us survivors
out here may be able to let you know what their specific experiences are and how they are coping
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8th Dec 2015.
I have had my blood test today for PSA & Testosterone and i have an appointment with my
Radiation Oncologist next week. This is an anxious time because the result of the blood tests will
determine whether I'm still in remission or otherwise. The hope is that both variables will be significantly sub 1.
I am into my 5th month of androgen injections and the side effects are still as expected: fatigue,
hot flushes and disrupred sleep. My toilet visits have dropped to two per night and my bowel movements
are at two per day; down from three. My abdominal pain has dropped to virtually nil.
I'll let you all know the results of my blood tests and the Radiation Oncologist's feedback next week.
Zol: (Gleason score 9 & Tumour T3B )
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I was diagnosed with prostate cancer (Gleeson score 9 & Tumour T3B)
just a year ago and I am no in remission. Age 70.
There are two types of cancer patients; those who want to know everything about it and those who dont.
I belong to the former kind but some of my friends who have had prostate cancer for a few years just
dont want to know very much about it and simply leave it to their urologist and/or their radiation oncologist.
In my case I researched and studied the condition and sought second opinions.
My progress was as follows
-PSA test indicated 4 (doubled in 2 years)
-My GP referred me to a Urologist
-digital exam , could not feel anything
-he said that the usual proceedure was watchful waiting for 6 mos & then another blood test.
-he also offered an MRI scan which showed 35 shadow on the left hemisphere
-then had a biopsy which indicated 60% of prostate effected (Gleeson 9 & Tumour T3B)
-had bone & soft tissue body scans and all were clear.
-Then offered radiation (surgery had similar prognosis in my case but possible more side effects)
-Then given androgen injections for 6 months (reduced testosterone from 8 to virtually zero)
(testosterone feeds prostate cancer and androgen therapy reduces tumour)
-after 4 months had gold seeds implanted to guide radiation.
-then had 39 sessions of radiation (5 per week) @ 2 Grays per session.
-6 weeks after radiation I had blood test (PSA 0.5 & Testosterone 0.03)
-declared by Radiation Oncologist that I am in remission)
-put on a further 12 months androgen injections with review every 4 months.
-nil until the last week of radiation; more frequent peeing and loose bowel movements
-5 months later and these side effects still persist , albeit abit less"
I have found that it of benefit to take ownership of one's own health; ask questions , read about
prostate cancer, talk to others who "have been there and done that". I'm keenly aware that
urologists who are the first specialist port of call tend towards radical surgery because that's their
specialty remedy. In my case I had team of 6 made up of my urologist, radiation-oncologist, the
lab specialist who did the biopsies, a radiation scientist & two others.
In surgery there is convertional surgery or the robotised Divinci machine proceedure, Both can be nerve saving.
In Radiation there is External Beam,(which I had) Bracky Seeds or Bracky Rods .
The best advice that I can offer 12 months after my diagnosis is:
(a) talk about it
(b) dont over-think it once you have done the research
(c) seek professional psychological advice if needed
(d) join a gym and keep fit and stay socially in touch with friends and family.
(e) Athough there is no emperical evidence to show that diet or vitamins are of any use; just eat
well and relish your food and dont consume alcohol. Green tea is great.
In my case I volunteered as a Volunteer Carer in the Cancer Ward of my local hospital and i find that
Hope that helps.
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My neghbour passed away last week following an 8 year battle with cancer. He had radiation for
prostate cancer which reappeared 5 years later in the form of bladder cancer. This progressed to his right kidney and 14 months ago he had it removed. Last June he was diagnosed with terminal cancer which
had moved to his left hip and upper leg, his right kidney, his lungs and liver.
It has been an agonising 4 months to see him waste away.
We scattered his ashes yesterday.
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Have you considered volunteering? It is good for your self-esteem and gives one a sense of worth of
which unemployment can deprive one . It also looks good on a CV when pitching for a job. The other alternative is to take an education/training course to better position yourself workwise.Even in remote areas you can take an online course.
Have you asked your radiation oncologist/urologist about HT. While it has its downside, it certainly knocks down the PSA within 6 weeks and starves any risidual cancer of food (testosterone) Perhaps you could ask for a second opinion.?
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.