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In January 2004 was having problems with ED [erectile dysfunction]. I had type 2 diabetes since 1998. I went to my doctor and he did blood work. He then called me in to surgery and said your PSA is 22 ng/ml and I need to check out your prostate with a DRE. He was sure there and then and told me I had Prostate Cancer.
I was seen by urologist within 10 days and he confirmed diagnosis. I was staged T2b but the urologist stated possibly T3 but N0 and M0. I had a biopsy done and my Gleason Score was 4+4 8. After biopsy I complained of dull ache in pelvic area behind pubic bone, was put on antibiotics for one month.
From this I was called in to see urologist and radiologist together. Urologist stated he was reluctant to do RP (surgery) because he may not get it all. Radiologist stated she was pretty sure she could get it all by bracketing the site. By this time I had done a considerable amount of reading and agreed with the radiologist. I complained again at this time to them that ever since the biopsy I had a dull ache behind the pubic bone in the pelvic area that reoccurred. They put me on antibiotics again.
A date was set for radiation treatment, early July - five days per week for four weeks. Was told I would be on Zoladex for at least three years. I was put on one sort of tabs for one week to control flare and given a Zoladex jab. Radiation was started about a month later and after one week the dull ache in my pelvic area subsided. Radiation concluded and to date have slight problems with faecal incontinence but no urinary incontinence but am completely impotent.
Two month after radiation was completed, October 2004, the dull ache in pelvic are started agian. Again I was given one months antibiotics. This cured it for a while but it still to this day it bothers me to some degree all the time. I have hot flushes, which I can handle, no fatigue, loss of body hair, but otherwise feel OK. Have resigned myself to the loss of any sex drive and the inability to perform. I would be a nice to have but not a need to have. All my energy goes elsewhere - boy have I got a wonderful garden. Quality of life is good considering.
I would like to say at almost three years after diagnoses I am about to stop hormone therapy. I will have one more injection in January and that will be the final one. I will then be watching my PSA like a hawk. A word about the ache that I complained about earlier. I was given advice from a fellow sufferer to exercise the pelvic muscles. within a very short time, days, the ache had subsided considerably. I persisted with the exercises and have had no further trouble.
PSA has been steady at 0.04 ng/ml now for about two years. Am looking forward to the gold star. Be positive.
I had my last Zoladex injection in January of 2007 after 3 years on ADT. After 3 months my PSA was still down at 0.04. In July my PSA had risen to 0.1, by September it was 0.34 and in December it was 0.55. In January it was 0.67 following a visit to a prostate cancer specialist in LA who recommended tests ever month.
While in LA I had a CT and bone scan done and both were negative. All blood tests done indicate that I have no Mets. The DRE examination indicated that the initial radiation treatment had completely fried the prostate. It is obvious if cancer still persists it is below the detection size of the scans. If the PSA persists in this continual rise I am told I should go back to ADT with other drugs. This will make the treatment IADT3, (intermittent androgen deprivation therapy with 3 other drugs to control DHT).
While in LA I was also advised to take per day, 300mg of CoQ10, 30mg Lycopene, 200mcg Selenium, 200IU Natural Vit E, 100mcg B12, 2000IU D3 and 1000mg of Calcium Citrate. Because of a reflux problem I was not allowed to take Actolel to prevent osteoporosis. It should also be noted that I take medication for Diabetes and reflux and because of the quantity of pills I now rattle when I walk :)
Since stopping ADT last January I still have little or no libido and erections are still impossible. But otherwise I seem to be a healthy 68 year old with little loss in stamina and capable of a "normal" life. Am happy with my past decisions because the alternative, to do nothing, would mean by now I would be in deep trouble and would not have the quality of life I now enjoy.
Have been troubled by a rising PSA from <0.04 when I stopped ADT April 2007 to 0.67 in January 2008. I was placed on a strict diet by an Oncologist in LA USA and given a regime of supplements. Latest PSA reading is 0.56. the trend is now down. I am hoping that this last test is not a "flier" and that the downward trend continues. My diabetes has responded well too and has needed a further drop in medication. It needed a change in medication when I came off of ADT.
My final PSA before deciding on further treatment was 1.07 in July 2008. I visited a medical oncologist in LA California and in St. George Utah and was advised by both to go onto intermittent androgen deprivation therapy plus. That is IADT3. I was also advised to take supplements, I will give you a list of these if you email me.
The therapy consists of Lupron as an injection every 4 months and with Casodex and Avodart daily. So I'm back to the hot flashes, not too bad and easily tolerated. Other side effects are a lowing of libido and again loss of bodily hair and just a bit of lack of get up and go.
As I write this in early October 2008 my last PSA was down to 0.16 and other blood tests are normal. Will now wait to see when my PSA gets down to undetectable hold it there for over 6 months and then stop the Lupron and Casodex but continue with the Avodart.
One problem you all should be aware of is the price of the daily drugs if you do not have an ongoing prescription insurance, About $1500 per three months. I have hit the gap in my insurance and if the cancer does not get me bankruptcy will. Am trying Overseas supplies at $250 but the quality can be questionable so I am told. However my income is such that I have no alternative.
Because of a rising PSA - my PSA rose from 0.04 to 1.07 and was advised to start IADT when it rose to 1 - I started IADT3 (lupron + casodex + avodart) in August of 2008. Within 3 months my PSA went down to 0.06 and has stayed there for 9 months.
The side effects were slight sweats and swelling and pain of the breasts, I have also been suffering from fatigue but am able to work through it most of the time but with muscle pain after the workout. The pain within the nipples has been easily controlled with Femara used when needed.
I generally feel good and am able to carry out a normal life style. There has been complete ED throughout my treatment and I have made no effort to seek improvement with this side effect. I was having problems with this before diagnoses and was told it would not improve. During this phase of treatment I have had trouble with control of my type 2 diabetes necessitating increased medication to affect adequate control.
In August 2010 Stopped ADT3 on advice of current medical Oncologist in Las Vegas. He considered after a 2nd three year term on ADT it was time for my second rest.
In Feb of 2011 it was noted that my PSA was rising with a doubling time of three months. He referred me to a salvage brachytherapy specialist in Phoenix. After many tests to find no mets and no cancer elsewhere but the prostate he agreed to perform the planting of seeds. This was conducted early March 2011.
A little discomfort but no incontinence and no need for catheters. Still awaiting for more PSA tests to assess treatment outcome.
Following the planting of the seeds in March of last year, my PSA has continued to drop and is now 0.01. However following the ceasation of treatment my testosterone level has stayed at castration level of around 30. My get up and go has got up and gone and left me lethargic in the extreem. Am happy to sit and watch TV which is not like me at all. Am to see my Phoenix oncologist in early june and he has asked for full blood work before I see him. So I can expect some action regarding the reluctance of the testosterone to return to normal. On my last visit to my oncologist I was informed that my cancer is in complete remission. However he also informed me that initially, in the UK, the radiation treatment that I was first given was insufficient to completely fry the cancer. remnants were still within the prostate capsule.
Following the brachytheropy treatment I have had minor problems with stress incontinence. This started at about the nine months mark from treatment. Not severe enough to wear any special garments but anoying when I sneeze or cough. Otherwise no other side effects once the soreness of the procedure had subsided. About a month at the outside.
In May of last year I had a heart attack and had three stents inserted. With medication my blood pressure is stable and normal and I have no restrictions on my activities.
My diabetes is under control but I am now using insulin and metformin to keep my blood sugar around the 100 mark. The stopping of cancer and the starting of heart medication medication has not affected my diabetes control.
Now every 6 months I visit my oncologist in Scotsdale Arizona. for a queck-up. He gives me a general body exam, comments on any new skin blemishes or tender spots. Asks about my general health and takes copious notes. He also asks about any concerns that I may have. This was conducted August 4 2013.
My concerns this visit were stress incontinence to whick he replied that Kegels exersizes would fix if I did them religiously. I was doing them but not as often as I should. Got ticked off about that. And he was right. My second concern was my very low testosterone level. Around 30. Should be over 300. He stated he did not want to give me any testosterone replacement therapy until he was happy that the aggresive cancer (8 gleason score) at diagnoses in 2004 had shown no re-occurence for 5 years following the implantation of the seeds which was done March 2010. I am having problems with fatigue. Can get work done in a morning but then have to rest up for the rest of the day.
I exersize, a brisk walk, for about an hour every morning and then chores around the house, Mowing the lawn, painting and general fixing etc. Then in the afternoon its rest only. No more energy. My cardiologist is happy with my heart health so have to keep up with the walking 6 days a week.
I have no groin pain and no other ill afects from the seed implantation and am so glad that my PSA; is in the undetectable range.
Visited my Oncologist in Scotsdale in late October 2014. PSA is below 0.01 and has been there for the last three and a half years. My testosterone level is 38. My diabetes was under control with insulin injections and Metformin. However I found out I was having an adverse effect from the Metformin and had to stop taking it. An increase in the daily insulin injections kept things under control. However I was overweight and lethargic. Dicided to diet in an attempt to loose weight and control diabetes. started dieting mid June and have lost slowly 20lbs. I also started taking different supplements and have reduced my insulin intake by 75%. Feeling good but clothes hang like sacks on me. Have had a dramatic decrease in fatigue since stopping the Metformin. Still have a very low libido and no change in the ED. It has been so long now since my wife and I have been able to "perform" that we don't miss it now. Never in my wildest dreams would I ever have made that statement ten years ago. But there is a rich life after prostate cancer treatment without sex.
Saw my oncologist Mid October 2015 and there has been no change, that is, I am still in remission.
My testosterone is still in the 30s and my oncologist says if all remains the same he will put me on testosterone replacement therapy.
I have had ED problems since diagnosis in 2004. It was this problem that sent me to the Doctors in the first place. I am not expecting any ED improvement when I go on replacement theropy but an increase it stamina would be appreciated.
Have had another heart attack in February of this year that was caused by scar tissue build up at the end of one of the previously inserted stents. This was dilated and I have had no further problems.
Am having problems with peripheral neuropothy in legs and feet and this somehow has upset my sense of balance. Am undergoing physiotherapy to help with this. Had a fall that preceded this diagnosis.
Over the last two years I have lost 30lbs, down from 220lbs to just under 190lbs. This reduction in weight has enabled me to stop all diabetes medication and control my blood sugar with minimal diet restrictions and exercise. Just a brisk mile every day.
Peter's e-mail address is: peterjcks39 AT hotmail.com (replace "AT" with "@")
NOTE: Peter has not updated his story for more than 15 months, so you may not receive any response from him.