ZOL: My Prostate Cancer

ZOL
This is my cancer story. I'm 69 and living in Qld Australia. The Diagnosis. In late August my GP informed me that my PSA had moved from 2 to 4. For a 69 year old the number itself was not alarming but he said that the doubling of my PSA in 2 years was of concern so he recommended another PSA test in 6 weeks time. He said that having sex or riding a bike before the blood test could elevate the PSA reading. 6 weeks later the second readings came through which confirmed that my PSA was 4. The GP then said that he would refer me to a urologist. He said that without symptoms and with a PSA of 4 that I would have to be very unlucky for anything serious to transpire post the urologist's check up. I asked my cardiologist and gastro specialist for recommendations and they both mentioned my current urologist whom I'm very pleased with. My first check by the urologist involved the review of my PSA data and a DRE. This digital examination revealed no abnormality and the urologist said that I had 2 alternatives: -watchful waiting (to wait 4 months or so and repeat the PSA test) -have an MRI scan if I was a worrier. I elected to have the MRI scan because I am a worrier. The scan cost $500 and is not covered by Medicare or my Private Health Insurance. While I awaited the results I was quite confident that nothing much was wrong. After all I did not have any problem passing urine, just the usual trip to the bathroom at night if I had drunk water, tea etc before going to bed. Nor did I have any pain whatsoever. By now its early October 2014. The urologist called me and asked me to attend his office for a review of the MRI scan. This was my first inkling that I might have cancer and the weeks wait was nerve wracking to say the least. The urologist said that the MRI scan indicated a shadow in the left hemisphere of my prostate which clouded one thirtieth of the hemisphere; that is one sixtieth of the entire organ. He said that a biopsy was the only way to confirm if it is cancer and, if so, what stage and what Gleeson Score. This was all new language to me and, being a worrier, it started feelings of panic and dread. The biopsy was a day procedure under general anaesthetic. Needles are inserted in the prostate via the rectum and minature core samples are extracted for lab analysis. There was minor signs of blood in my urine for 2 or 3 days. The procedure was virtually painless. The urologist called again and he said that he would like to explain the rsults of the biopsy the following day. I guess that even for an experienced urologist it is not easy to break the news to a patient that he has prostate cancer with a tumour stage of T3A and a Gleeson Score of 9 (4+5), which is my diagnosis. I sat stunned, like a roo in the headlights. I'll follow up in a days time with the impact of the diagnosis on me, my wife and friends; together with the treatment plan and prognosis. Kind regards, ZOL
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ZOL
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Continued: No matter how prepared one imagines oneself to be, the C word is a stunning diagnosis. My first reaction was to study it by every means available. I read all the publications by the Cancer Councils of Queensland and Australia,. I talked to my GP, Specialists and friends and acquaintances who have cancer. I even attended a two hour post Doctoral presentation on a two year Queensland prostate cancer study which was attended by urologists, GPs, Radiation Oncologists, nurses etc. And then I Googled prostate cancer for months to learn as much as possible. I soon learned that a Gleason score of 9 is a very aggressive cancer but at least a 3a staging means that the tumour is confined to the prostate and perhaps the seminal veslcle. I had a bone and soft tissue scans which came up clear: there was no sign that the cancer had migrated to the nodes(N) or beyond (M). These tests are about 95% accurate which means that there is still a 5% chance that microscopic amounts of cancer may have already escaped. During this time my wife , family and friends have been very supportive but I still had niggling fears and doubts. Perhaps the best advice that I got was from a friend who has breast cancer. She said : "don't overthink it, just pick the right specialist team and then trust them to do what is best for you." Finally the team came up with the treatment regime: -6 months Zoladen (androgen theraphy) -40 sessions of external radiation -a further 12 months of Zoladen. Inclusion in an advanced androgen theraphy study was offered but the offer was withdrawn due to my testerone level not falling within the study parameters. Surgery was not offered because of risks for my cancer and my age: the prognosis with the above treatment regime was the same as surgery.ie: a 90% chance of being alive in 10 years. The Zoladen injection lasts 3 months and can have some side effects including a heightened emotional state, hot flushes and loss of energy and loss of libedo. Other side effects that have been reported have not effected me yet. I have had some slight depression which at this stage and I'm unsure whethet that is attributable to the androgen therapy or the psychological effect of cancer. I had my 3 month follow up in late February and my testosterone had reduced from 6.5 to about 0.6 and my PSA was 0.3 down from 4. This was a great result. Some explanations : The prostate is a sexual organ which produces seminal fluids to enhance and protect sperm which is stored in the attached seminal vesicles.(google a sketch) The nerves are located on the outside of the prostate which makes possible nerve saving surgery. Prostate cancer starts on the outside of the prostate and works inwardly and this is why some cancer patients can have had cancer for some time without symptoms. Testosterone is the driver of prostate cancer and this is why androgen therapy (hormone therapy) is used to shrink the cancer and to impede its progress. In my case that is why I'm receiving the AT before radiation. I'll post a follow-up post 22nd April when I'll have received my gold seeds implants and my planning session for radiation. Zol.
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ZOL sorry to read about what is happening in your life with your Prostate Cancer ,a very informative post ,it is good that your levels are dropping.keep it going. kj
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Am going through something similar to you. Have Prostate Cancer at T2c, 4 gold beads and at day 22 of the radiotherapy sessions with 15 to go. Have not had to have any medication to shrink the prostate or for hormonal treatment. 4 years ago my PSA level doubled and no one noticed. Last year after the yearly test it was at 5.2, 3 hospitals later and after the biopsy it dropped to 4.4 and I joked with the doctors saying a few more biopsy session's and the cancer will be removed. Hope all goes well with your treatment
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ZOL
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Hi leftoeva, What is your Gleason Score? The Gleason Score indicates the level of your cancer aggression. As you are no doubt aware, testosterone drives your prostate cancer and your blood test apart from indicating your PSA should also tell you what level your testosterone is at. The higher it is the the more rapidly your tumour is likely to grow. The role of the HT (hormone therapy) is to supress the testosterone and thereby starve the tumour of fuel. Its a cheap and non-invasive therapy. Why not check with your Radiology Oncologist re your testosterone level and seek advice from him/her if HT is suitable for you. Good luck and thank you for your post. Perhaps you could let us know later how the remainder of your radiation treatment went, your PSA & testosterone levels etc? Cheers Zol
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Gleason score at 6 and Testosterone at 13 and Vol at 30. Will be close to end of June before allowed to do the blood test. Have not had MRI and am intending asking a Doctor about that but missed her on Friday. The Urologist I have only seen twice and that was in the initial stages before the biopsy but he has me down for two procedures at another hospital which are due to be carried out this month and still nothing confirmed as yet. Living at a Cancer Council Accommodation Lodge in Perth from 8th March till 5th May. The Hospital is next door making it easy to attend the appointments as I live 600 kms east of here and I thank them for it as it has saved me a lot of hassles.
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ZOL
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Hi lefteova, You are very lucky to have the accommodation available; i'm sure it takes the day to day stress out of commuting to and from. You are lucky that your Gleason is 6 which I'm advised is the lower end of the scale for intervention. The T2a is also moderate too. Have you had any side effects from your radiation so far, like fatigue or diarrhoea etc.? it seems unusual that with a testosterone of 13 that the oncologist hasn't recommended HT because testosterone feeds and drives the prostate cancer. My planning session is next week and the radiation begins a few weeks later. I'll post further details after the first few radiation sessions sessions. Zol
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The Cancer level is at T2c which is still in the Prostate it has not apparently escaped into the surrounding tissue but I unlike you have not had an MRI just a short CT scan to find the gold beads before they stab 3 tattoo marks into your body. For me the middle of week 2 the diarrhea and Urinary tract problems kept me busy for 3 to 4 hours a day and yet at Easter the 4 day break along with cutting caffeine intake in half it subsided. Finding it very hard to urinate after the treatment if I try to stop myself going to the toilet before the treatment so of late I just go when the urge is too great as the machine is not always running on time and the "30 minute late" sign spells disaster for trying to get the bladder right and on time. Yesterday I noticed tenderness of the skin at the middle tattoo mark. Along with hair loss hahaha Fatigue I did not give that any thought until you mentioned it and the last 2 days I have been noticing some but thought it was due to a massage getting things moving again. HT I do not have as my prostate is at a volume of 30 and testosterone of 13 the Doctor is happy with.
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ZOL
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21st April: The Planning Session. I had my radiation planning session today which involb=ved the following: -was on Movicol for 5 days to loosen bowel movement. -had an education session last week to generally outline the radiation program including possible side effects -had to have a bowel movement at 6 am followed by an enema. -checked in to the hospital at 7.40 am -filled out health & history forms -advised of specific risks and specific procedures -emptied bladder and drank 500 ml water -waited 40 minutes and then I was placed on the radiation table for measurements which took about ten minutes -had 3 mini tattoos; one on each hip and one central in my "pubes" - first radiation appointment for 11th May -further advice on parking and bowel/full bladder requirements. -advised that it can take up to two weeks for the team to design the radiation program. -I'm scheduled for 39 sessions. -support services offered re exercise, social worker and relaxation programs. I'll post again when I've had a few treatments. Cheers Zol. -
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ZOL
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More to come later.
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ZOL
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Radiation Treatment: I have had 8 radiation sessions out of the scheduled 39. The dose is 2 Grays per session and a total of 78 for the complete program. I was a bit apprehensive about the initial radiation session because despite assurances from my radiation oncologist and the oncology nurses that it was like having a prolonged X-Ray, I had to have that confirmed before I felt comfortable. Four weeks ago I had the planning session where, among other things, I was put on the radiation machine for a measure up and having my tramp stamps (tattoes). They are small dots, one on either hip and one in the middle of my pubes about 50 mil above my penis. The proceedure before having radiation is: (a) empty one's bowel at least once a day (movicol is recommended) (b) drink two large glasses of water 2 hours before radiation (c) pass water 40 minutes before radiation and then drink a half litre. The objective during radiation is to have an empty bowel and a full bladder to minimise collatera damage. It took a few goes before I got the timing and the water quantity right. For those who have not had prostate radiation the idea is to radiate the prostate only and not the surrounding organs or tissue. That being said, however, I'm having my seminal vesicles radiated as well which are outside the prostate capsule as a safety precaution. (my Gleason Score is 9 & my tumour rating is T3B). One removes outer clothing and shoes before getting on the carbon fibre slab. When one is lying down the assistants put a small props under the head and knees and ones heels fit into a moulded support. The idea is to have the body in approximately the right position and then this position is finely tweeked by aligning the tats referred to above with the electronic beams. Of course, the machine also reads the 3 gold seeds implanted earlier in the prostate. These seeds give a 3d map of the prostate with a focal point which acts as a reference point for plotting the radiation targets. Once on the slab you simply fold your arms across your chest or clasp your fingers and the staff scurry out of the room. Then you hear electronic beeps and groans fron the machine as it circles ones lower torso. Its like a Dr Who contraption The machine circles the lower torso about 3 times stopping now and again (thinking perhaps). After about 6 minutes the carbon fibre slab moves ever so slightly and the the machine continues. There is one large rectangular screen which occassionally comes around and pauses directly overhead. It has 13 x 13 black squares about 40 mm square (169 in total) I havent asked what it is but I assume it is a grid device for 2 dimensional measurement and/or photo imaging.Its odd and spooky to have a grid of 13 by 13 squares ! The whole proceedure takes about 10 minutes When the machine finally stops the attendants rush in, help one up from the slab with the assistance of a pull rope and hey presto, you are on your pegs like Lazarus ready to don one's dacks and face the non_radiated world and make a bee line for the nearest toilet. There is no risk I'm told of one's watch etc becomming radioactive. I'll report back when I'm half way through my radiation treatment PS: My testosterone now is 0.08 & my PSA is less than 0.03 and the radiation oncologist was very pleased with these readings. Before commencing my HT 6 months ago my testosterone was 7 and my PSA was 4. Cheers Zol
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Worst thing I found was getting all ready for the treatment and see a sign saying "running 30 minutes late" when I got there. Some days it was good having some access to other machines.
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ZOL
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I'm now half ways through my radiation treatment. I have got used to the daily ritual Monday to Friday; bowel movement at least once a day, 2-3 glasses of water 2 hours before radiation, pass urine 40 minutes before radiation and drink half a litre of water and hope that my bladder is full for radiation but not too full to be uncomfortable, Then stay hydrated for the rest of the day. I have a weekly follow up meeting with my radiation oncologist. Its a two way info session: she asks a few questions regarding how I'm going and I ask a few questions about what to expect and what her impression of progress is. The session dose of 2 Grays is accumulative but so far, touch wood, there has been little or no side effects.I have taken up the hospital's offer of a weekly light fitness program and I have busied myself gardening and painting the house. Occassionaly I get nightmares which I suspect is my subconscious mind working out this cancer kick. I intend to have a few sessions with a talking doctor just to make sure that this is normal and that it will abate as treatment progresses. My androgen injection ran out 2 weeks ago but I'm still getting the hot flushes, albeit not as severe as before. I am building up muscle strength in lieu of the loss caused by the androgen (HT) treatment. I think that I'm now past the "why me" and "what have I done wrong song" stage and I have now resigned myself to the medical experts and the radiation regime. I try to tell myself that it is what it is so there is little point stressing about worst case scenaria. The radiation oncologist has reaffirmed that the chance of a cure is 90% which in agressive prostate cancer is almost as good as it gets. Relaxation is very important so I have embarked on an on-line program called Mindfulness Base Stress Reduction and its free.I also find gardening relaxing because it takes my mind away from overthinking the treatment and feeling sorry for myself. I'll report back in two weeks or so. Cheers Zol.
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ZOL
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Hi leftoeve, I have had a few delays so rather than overstress my bladder I simply went to the toilet and recommenced to 40 minute countdown by drinking another half litre of water. i have also had the linear accelerator break down but lucky enough they transferred me to another one right away so there was no bladder overfull problem. Generally though everything goes like clockwork; I go to the toilet 40 minutes before radiation and drink the half litre of water. I then get into the car and drive to hospital which takes about 30 minutes so my wait is only 10 minutes or so.. How far are you into your radiation program? Cheers Zol.
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Yes overthinking is not a good thing so I have found out. Some days are worse than others but it's not the cancer that is the problem it's the lack of a job that is getting to me. Close to 2 years I have been unemployed and I am not doing well on that subject. My cancer treatment finished a month ago Zol so in 2 weeks I do the 6 week blood test to see how things went.
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No follow up plans as yet Zol. The Doctors kept asking about Urologist appointments but none have been made as I suspect since I took the Radiotherapy path instead of the Surgical path the paths have not rejoined and so I am a lost soul hahaha Arranged the blood testing along with a few more tests added on for the 25th June. Hows the body holding up in your treatment Zol?
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ZOL
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Hi lefteove, I've had my 35th radiation today (35/39) with 4 more to go. Things have been going better than I expected; few side effects except for fategue in the early afternoon and waterworks frequency. Over the past week I have been waking up 3 or 4 times a night to wee. I have had pills for this but they dont seem to have any appreciable effect. My hydration timing is still a problem; just difficult to get a full bladder that's not uncomfortably overfull and I guess the cold weather has had an effect also. Radiation causes a swelling of the prostate; hence the difficulty in fully emptying the bladder. I have had a few close calls when I've had to use a bottle before getting off the machine. The hospital oncology dept has been very professional yet personal. The staff gave me a signed birthday card which was a bit of a laugh because, as you'd know, the first thing they ask is DOB for ID purposes. I have becone very familiar with the Linear Accelerator and we joke about me developing a Dr Who relationship with it. I guess a machine like this in the hands of the Spanish Inquisition could have done alot of damage !. Once on the carbon fibre slab with the tats lined up the therapists leave the room and the session starts. First of all it gives a gentle whizz and then circles my lower torso for 380 deg. and then pauses. This locates my innards and gold seeds with a very low dose of xrays. The machine then thinks for about a minute and then sends a short-sharp beam of radiation into my prostate. It then pauses again for a minute or so. The operator next door then does the fine adjustments of the carbon fibre slab remotely to get the ducks all lined up. There are then a few electronic whizzes and the machine starts circuling my torso again; this time delivering the 2 Grays of radiation to my prostate with mild doses to the surrounding area. I had an appointment with my Radiation Oncologist today and I quizzed her about what my prostate would look like post radiation. She said that over the next weeks it would shrink considerably with the capsule cover in tact but the interior mostly scar tissue. She said that in my case the objective was to kill all the cancer cells in the prostate and the nearby area (if any) I finish radiation next Tuesday & I'll post further comment then. In the interim I'm keeping my fingers crossed that there will be no further unwanted side effects. How are you travelling post radiation? Cheers Zol.
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Hello Zol so the blood test at 6 weeks results finally got here. Depressing at first and the 20 minute walk home to make a phone call to the cancer nurse 600 kms west to hear him say that he is not surprised at the raised levels as it will be another 6 weeks before there is a drop in the PSA level. PSA level went from 4.4 to 5.3. Yes Zol I know it is low or under 10 but it's the highest I have had so far. So why bother doing the test is my question if all it is going to do is scare the crap out of me with an increased level? May as well wait till the 3 or 4 month time period has past before getting the tests done. So anyway I arranged another blood test for the 23rd July a week before I go to Perth and after talking to the cancer nurse he will see what else I am supposed to be doing or getting checked while I am over there. Urologist for one as I cannot recall the last time I saw him. And Zol smile it's nearly over for a while for you. Remember to keep busy it takes ones mind away from the hassles of all that water you have drunk. Old friend of mine asked me if he could drink beer instead of all that water. Hmm why not I have to wonder?
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ZOL
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I have had my 39th and last radiation today and I'm relieved that this section of my treatment is over .My day was quite busy with the radiation-oncologist consultation, two and a half hours of a "Look Good-Feel Good" patient session followed by radiation. The radiation-oncologist session went really well with a question/answer session and then an outline of the way ahead. She said that the side effects (principally fatigue and urgency/frequency of waterworks would likely last a few weeks with a gradual improvement after that.Over the past week I have had difficulty in the half litre water drink and then holding out for 40 minutes for the radiation. Thank goodness that all behind me now but I'mm still waking up every 2 hours at night to go to the toilet. The waterworks pill prescribed has had little or no effect. The "Look Good-Feel Good" session was interesting with about 10 patients and their partners attending. There was the usual tea & bickies and general introductions followed by a presentation by a volunteer manager on ablution techniques, grooming, massage etc. There was a generous handout of lotions and portions with an emphasis on skin maintenance. There was a mix of radiation, chemo & Chemo/radiation patients with a variety of cancers. Most of the ablution/grooming tips were principally for the chemo patients but I found it quite useful. My wife found the prices of the hand-outs online and the bagfull amounted to $260. These products are donated by the manufacturers/distributers and very much appreciated. Follow-up: Next week I restart androgen injections for another 12 months. I was advised that this is for safety reasons and normal for my tumour stage and Gleason score. My 6 week follow up will include tests for PSA & testosterone & the plan is that both will be sub 1. After that I will have blood tests every 3 months follow-up radiation-oncologist consultations.Of course if I have anything abnormal, I can have extra consultations right away. The hospital radiation-oncology department has been fantastic with very caring/professional staff who provided first class care and advice and the free parking at the door was convenient and took the stress our of the daily ritual. I'll still attend the gym for another 5 weeks which was part of the package. Androgen injections deplete muscle and calcium so it is of paramount importance to maintain a daily exercise regime including weights & walking. So my advice to all of you who are early into your prostate cancer radiation program is to ask lots of questions to allay fear , trust your radiation-oncologist and radiation therapists and dont be shy in asking for a bottle if your bladder is overfull rather than limping to the toilet post radiation and then having bladder pains for hours afterwards. I was amazed by the number of prostate cancer patients who were recieving radiation who did not know their tumour rating or their Gleason score. Some did not know what their PSA level was! So in summary, one has to take responsibility for one's own health and , in my opinion, information and an understanding of ones condition is absolutely neccessary. Had I not asked what the alternative to "watchful waiting" was I would likely be still waiting while I had an agressive cancer. I'll report in 6 weeks when my blood tests are available. I'm now confident that my PSA & Testosterone will be sub 1 then. Zol.
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ZOL
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to come later
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ZOL
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Hi leftoeva, Your PSA will be affected by the radiation so this is why here is usually a 6 week wait before the test. I'm going back on androgen injections next week (finished radiation yesterday) and then I'll have the testosterone and PSA tests 6 weeks later. Are you on androgen injections? They supress testosterone which drives the PSA & cancer. My testosterone before the injections was 7.2 and after 0.6 and my PSA before was 4 and after it was 0.3. In 6 weeks time I expect both to be sub 1 or at least that's the plan. Cheers Zol.
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I am not on Androgen and no Doctors seemed too interested in doing anything about the Testosterone level and last blood test had Testosterone at 14.5 which is up one from the first test for that earlier this year before the radiotherapy sessions. What is "sub 1"? I did have another blood test because I can last week just have not bothered at this point in time to check the results as the nurse says there will be not much difference until 3 months is up. Bye me
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I am not on Androgen and no Doctors seemed too interested in doing anything about the Testosterone level and last blood test had Testosterone at 14.5 which is up one from the first test for that earlier this year before the radiotherapy sessions. What is "sub 1"? I did have another blood test because I can last week just have not bothered at this point in time to check the results as the nurse says there will be not much difference until 3 months is up. Bye me
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ZOL
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Update: I'm now 12 days post my last radiation session. I have had a 6 months androgen injection last Thursday which was given to me by the supplier's nurse and i am starting to have renewed hot flushes. At least this time around I know what to expect. I am still doing weight bearing exercises to counter the negative effects of the androgen therapy. Since the finish of radiation my urine urgency-frequency has increased from every 2 hours to hourly. My Radiation oncologist said that this is quite normal and should stabilise over the next 2 weeks. She said that it was like a 2 week recovery following a major operation.I'm keeping my fingers crossed that my waterworks will normalise soon. My bowel movements have also increased from daily to 3 times a day which is quite manageable. The radiation oncologist has recommended gastro-stop if it becomes uncomfortable/inconvenient. At present its ok. Cheers Zol.
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ZOL
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I am now 4 weeks post radiation but I have still got some side effects -slight fatigue -passing water every hour or so and getting up at night at least 4 times -bowle movements twice a day -hot flashes from the androgen treatment. That said, I'm quite pleased that the symptoms are not worse. I'm looking forward to my radiation oncology consultation and the results of blood tests in 2 weeks time. I expect that both testosterone and PSA will be sub 1. Cheers ZOL.
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ZOL
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I.m now 8 weeks post radiation. I have had my Radiation Oncologist's 6th week consultation and the results are as follows: PSA: 0.3% Testosterone: 0.6% Result; I'm in remission. The PSA has dropped from 4 to 0.3% since last November and the androgen injections are keepeng testosterone levels low which has deprived the cancer of growth. I will be on androgen injections for a further 10 months as a safety measure. This threapy has some downsides: Hot Flushes Restless sleep Irritatability fatigue Cheers Moorooka PS: If there is anyone out there who is contemplating treatment similar to what I have recieved, just post me a line and I can offer more specific comment based on my experience. Zol
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Morning Zol Your results are quite low compared to mine and I am presuming it's due to the androgen injections. My next blood tests are for end of January but I will organize a set to be done at around end of November as per normal to see what is going on. Only other thing with me is weight loss of 6 kilos since about 2 months ago so that's on the list for the Doctor to check next month.
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ZOL
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Its now almost 3 months since I finished radiation and I'm in remission. I still have some symptoms despite my Radiation Oncologist assurng me that they would go away in 4-6 weeks post the end of radiation. I'm waking up every 2 hours or so to go to the toilet and I still have prostate region pains when I lie down. I take panadol to get to sleep. My bowel looseness is improving and I'm back to once a day movement. I'm 3 months into my second stint of HT, The first stint was 6 months prior to radiation and the current stint is for 12 months with 9 months to go. After a while one gets used to the hot flushes and the mild fatigue. My Radiation Oncologist always reminds me that I should be glad because this is evidence that HT is working. Psychologically I'm comming to grips with my cancer and I'm not having nightmares any more. I guess the favourable testerone & PSA tests have allayed my serious fears. I'm keeping active painting the house and Volunteering at my local hospital. Occassionally I'm assigned the Cancer Ward and I can now really emphatise with patients going through treatment; most of whom have away more serious cancers than me. I have placed discreet Ps throughout the house to continuously remind me to be positive and to not worry and be happy. I highly recomend this simple strategy for those in recovery mode. Cheers Zol.
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Afternoon Zol PSA today is 4.4 same level as a year ago after the biopsy was carried out. Dropping slowly and Doctor is happy with it. Whereas I would like to see it well below 2.0. Weight loss to date is 10 kilos for no apparent reason. Blood tests were clear on anything abnormal. Probably due to the continuing stress of unemployment and getting close to 3 years and no job.
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ZOL
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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.? Cheers Zol.
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ZOL
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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. Zol.
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ZOL
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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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ZOL
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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. Zol
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Happy to hear, Zol. Bravos. Continued wellness. Healthy Xmas... George.
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Well done Zol...very good and imformative posts..I`m sure this will help a lot of people. I wish you continued success against this horrible disease and hope you have a lovely Christmas and New Year. Greg
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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.

 

ZOL
Occasional Contributor

While I was going through my radiation, this was my favourite music:

 

Cancer Council NSW

Thank you for updating us @ZOL, it sounds like you've had quite the experience!!

 

I'm glad that you are doing well, despite all the side effects you have encountered. We'd definitely love to see more of you around these parts Smiley Happy

ZOL
Occasional Contributor

Three and a half years down the track since my diagnosis, I'm motoring well despite my almost "gender reassignment" via radiation and androgen injections.

 

I am pleased to report that :

-my body hair is sprouting again (like a second puberty; eh !)

-my testicles have reversed their shrinkage and are now back to 75%

-my willie is back to 80% but who is measuring !

-my foreskin is still a tad tight but I was lucky not to take my urologists advice and have 

  a circumscision when things were minature. (I should have had a circumscision before

     treatment )

-my bowel & bladder movements are fine (I dont have to get up at night if I don't have

   liquids after 8 pm.)

-my weight has peaked and I'm on a serious weight loss program /exercise program so that

    I can reclaim  my wardrobe.

 

In today's scientific world where evidence/data is everything there has been an unreal silence about the sexual aftermath of radiation/androgen injections in general and 

anejaculation in particuluar. Admittedly my oncologist is a very competent lady in her 

late 40s and it is difficult for a mature gentleman like myself to broach this subject tastefully. The conversations invariably get sidetracked into diet, mindfullness and excercise and sleep hygene.

 

Just the mention of the loss of libido, without going into the mechanics of it, induces  perceptable signs of anxiety not the least in my first wife who monitors the visits. She likes to document things on the Ipad just in case either of us looses our marbles later on. Dont laugh; a generous share of the over 80s are hit with dementia  and one thrid of those get Alzheimers to boot.

 

So my advice to all who are considering treatment just qualify the likely ourcomes first;

particuluarly all things sexual. For me it would not have made any difference to my treatment program but it would have just spared me the surprises and the speculation

and the  epiphanies of  body & mind changes.

 

Zol 

 

PS: For those struggling with the horrors of diagnosis and the prospect of a protracted 

and unsure treatment program, may I suggest ACT (Acceptance & Commitment Therapy).

A good starting point is " Act Made Simple" by Russ Harris. You can order it from your local Library or online.  

 

ZOL
Occasional Contributor

16th Oct 2018

I had my 6 month check-up last week and all is good:

-PSA sub 1

-Testosterone 9.2 & rising

-general health good except for my BMI which is over 30!

 

Even though I had at least a holf dozen all clears so far there is always anxiety regarding the results of these 6 month tests. One hears of cases where a cancer survivor has been clear for years and then out of the blue, its back. We have had at least a half dozen friends who had the all clear for years only to be hit with an unexpected reoccurance . This is the reason , while I'm usually a positive  person , that days leading up to the 6 month review I feel tense, anxious  with recurring nightmares. I have grown now to accept that as par for the course and my sleep hygene rituals are of great benefit.

 

I have taken up volunteering at a cancer ward in our local hospital and, although very early 

in that role, I feel that I can listen non-judgementally to patients concerns and fears ,

offer a sympathetic hand and give them  some useful Cancer Council literature and contact details to help them on their journey. I highly recommend volunteering as a 

symbiotic quest; it benefits both the volunteer & the patient.

 

To others who are  in the early stages of prostate cancer diagnosin/treatment, please feel free to drop me a line via this thread. I know that when I was in that position I greatly appreciated talking to others who had "been there, done that".

Cheers

Zol

 

PS: It would be valueable if others who elected to have radical surgery rather than radiation/androgen injections give an outline of their experience and how they are going now.

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ZOL
Occasional Contributor

PS: Occassionally we may get into a rut by overcaring and the mental anguish that comes from the dreaded cancer but I have found it useful to sometimes step back, not over think it and for a few minutes be indifferent to life's tragedies. It is bad enough to be physically suffering but when we add mental suffering it can get overwhelming.

At such times I play Bob Geldof's "I dont mind at all" (or The Great Song of Indifference)

It may not be for everyone but here it is:

 

https://www.youtube.com/watch?gl=ID&hl=id&v=NoweGN8cm5g

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