After experiencing frequent urinating, including getting up 3-4 times a night, I paid a visit to my GP.
He did a DRE,and said it was normal, told me to come back in a few days to have a PSA test. The result came back 4.56 and he gave me a referral to a Urologist, saying "worst case scenario is Prostate Cancer!" That was the first time the dreaded "C" word was mentioned.
3 weeks later the Urologist detected a "nodule"on my prostate. After a biopsy I was diagnosed with Stage T2a Prostate Cancer, Gleason 7 (4+3) and PSA 5.1 at age 48. As he suspected it was still localized, I had a choice of either surgery or radiation. However he recommended the radiation treatment saying I had a 79% chance of being cured compared to 64% with surgery. So in fact he made my decision easy. I figured a 15% better chance was significant, that you've got to come out with all guns blazing so to speak! ( the difference in predicted treatment outcomes was because of the Gleason score )
After a consultation with a Radiation Oncologist, I decided on the radiation treatment (ERBT) No ADT.
My ERBT comprised of 37 treatments over an 8 week period. Totally painless except for having to turn up every day with a full bladder and trying to lay perfectly still! 3 weeks into treatment the side effects started, i.e., more frequent bowel and bladder movements and some tiredness, but these were never really a major issue. I continued working, I played drums in a rock band and as a runner continued my training as usual. I kept a positive attitude and made a decision that the cancer was not going to control my life!
My PSA slowly went down over time, finally reaching 0.08 in July,2009, 2 years, 6 months post treatment. Doctors were happy, I was too!
Over the next 4 years or so I had put it all behind and had gotten on with my life, just getting a bit anxious about each PSA test. Everything was still working fine in the romance department, except for ''clear" ejaculations. I had suffered with IBS for many years and it would be fair to say that the ERBT made the IBS slightly worse. A colonoscopy in 2007 showed slight inflammation from the ERBT.
In April.2013 my PSA was 1.3,after hovering around 1.0 or so for a few years.
Then in Feb,2014, it had suddenly jumped to 2.5! My GP said not to panic and to get another test in 6 months, but I couldn't wait that long. The anxiety level was just to much! Was it recurring?
A subsequent test on 8th May,2104, came back 3.3.
So I have an appointment on Thurs,29th May with the Urologist. All I can do is go and see what he has to say. To go through the initial diagnosis nearly 8 years ago. and now be facing a relapse is disappointing to say the least. But I'm ready for a fight! Bring it on! Let's go and kick this thing's ar** once and for all! I used to run 42 km marathons, and anyone whose done one knows how tough you have to be mentally and physically!
Will post a update soon.
Saw Dr S on the 29th May,2104, and after performing a DRE said that the tumour has grown back in my prostate. This explains the rise in my PSA. In his opinion I have suffered a biomedical relapse. Had a pelvic MRI and bone scan done. Go back to see him on June 17th. for results. He doesn't expect to see any evidence of spread going by my low PSA, lack of symptoms and general good health. (fingers crossed!)
It would certainly be correct for me to say that the last 6 months has been a roller coaster ride!
A prostate MRI in June showed an enlarged right common iliac lymph node that the Oncologist Dr S said he considered it an 80% chance of being cancerous and the bone scan showed "several suspicious spots" in the pelvis and lower spine. Not good news. However, his prognosis was at least 5 year survival, possibly closer to 10 years. He would start me on ADT either when my PSA starts doubling in 3 months or goes to 10. (at the time it was 3.7) He directed me to have my PSA checked again in September, and a progress bone scan and a pelvic CT scan in December. My wife and I left his office quite shocked. With the knowledge that my cancer was not curable, but controllable, but for an unknown period of time.
In September PSA rose to 5.0. Still no symptoms and feeling fine.
On 8th December PSA had risen to 6.2, still feeling fine.
But get this! A pelvic CT scan on the 15th December,although still showing the enlarged lymph node,showed NO bone mets! Then a bone scan the next day was clear! NO bone mets. The suspicious areas seen previously are just arthritis and bone spurs. They were mistaken for cancer. So this news is the best X Mas present we could ever hope for. I will be changing doctors in the New Year, and I would imagine to at least expect possibly a slightly better prognosis! Wonderful things CAN happen if you stay positive and hope,wish and pray enough!
Merry XMas and a happy and healthy New Year to all!
Will keep you all posted.
My latest PSA test on 3rd March 2015,came back with a result of 6.7ng/ml. So I still do not have to commence ADT yet. (The Dr is waiting for my PSA to get to 10ng/ml, or doubling time of three months )
So this is great news.In fact my PSA has actually slowed down slightly.
In the three months June to Sept 2014, there was a 1.3 rise, Sept to Dec 2014,a 1.2 rise, but Dec 2014 to March 2015, the rise was only 0.5!
I'm not on any medical treatment, so it can only be my diet and lifestyle.
I drink 2 cups of pure Japanese Gyokuro green tea daily, my diet consists of plenty of fresh fruit and veggies, the only bread I eat is Burgen Soy Lin (recommended for women because of the high phytoeostrogen content, phytoestrogens have been proven to be prostate cancer cell killers as well) I also take Selenium, Vitamin E and Taurine supplements, pomegranate juice and I run 3-4 times a week.
Interesting to see if the trend is continuing at my next PSA test in June. The longer I can put off going on ADT the better!
Staying positive and still feeling good!
Just when I thought my healthy lifestyle and my Naturopath's treatment protocol had this beast on the ropes, I was a bit shocked to find out my PSA has suddenly jumped to 9.1 at the 4th June test! But never mind, it's just a minor setback! Dr S has decided to start me on ADT late September after I told him I wanted to wait until I got back from an overseas holiday Debbie and I have planned.
So I'll wait and see what the PSA is in another 3 months. I still have faith in my Naturopath and my Japanese Gyokuro green tea, still regularly jogging, looking after myself and staying positive. I've also left my full-time job (55 hours, 6 days a week as a Motor Mechanic) and now working for myself part time. At the end of the day, one's health is the more important than bills, they'll get paid eventually!
Will keep you informed.
Cheers and good luck to all my PCa buddies!
On 18th September my PSA result was 15ng/ml. Despite my diet and lifestyle changes, it is climbing rapidly. After seeing my Oncologist,DR S, today (22nd September), he said it was time to start ADT. I will receive my first 4 monthly shot of 30mg Lucrin as soon as I get a Bone Density test and full blood tests. Lucrin is an LHRH agonist which blocks testosterone production. The good thing is sometimes the side affects subside after the drug is stopped.
Will keep updating on how I'm coping with the treatment and side effects, etc.
One month after the Lucrin shot (ADT) my PSA has now dropped down to 1.5 ng/ml. It feels good knowing this beast is actually being harnessed in some way, hopefully for a long time.
The main side effect is the hot flushes. They started about 2 weeks after the injection.I'm getting them quite frequently, for about 5 minutes but on the hour,every hour. It's hard to sleep. I keep waking up covered in sweat. I've also noticed when I go for a run, I am suddenly struggling. I'm breathing harder and the old legs are feeling heavier! But the main thing is my PCa is under control at the moment!
I've also noticed my erections have stopped. And my blood glucose level is suddenly elevated. I really hate this disease!
Good luck and all the best to everyone on this same crazy journey!
Talk soon.
Mark
Greetings from Down Under!
Latest PSA reading on 6th Feb was 0.24ng/ml. A good result.
Just had my second 4-monthly ADT shot (Lucrin) on 11th Feb. Will see the Oncologist in about 4 months, and hoping that he will give me a break from the ADT if my PSA is still very low.
Hot flushes are still occurring approximately every 30 to 45 minutes around the clock, actually, I'm getting one right now as I type, including the sweating. The old sex drive is definitely not the same but, and maybe it wouldn't work for every man, with a little yellow pill called Cialis, I'm able to achieve a reasonable sort of erection. I'm working out at the gym twice a week, running 2-3 times a week and trying to watch what I eat. No weight gain so far after 4 and a half months.
All the best to everyone out there!
Cheers
Hello all,
Most recent PSA test on 16-05-16 was 0.18ng/ml. It appears that the beast is well and truly "asleep".
My Onco, Dr S., is very happy, so am I!
I told him about my 40-50 severe hot flushes and sweating per day, and he has decided to let me go intermittent. Just monitor my PSA every 3 months and resume ADT when it hits 10ng/ml. He said because of my age,my Testosterone,and therefore my PSA will probably start to rise fairly quickly.Good and bad news at the same time. I've been wondering how I will feel mentally about being off ADT, i.e., it is emotionally comforting knowing that I am doing SOMETHING rather than just letting the PCa go on the march again. I wonder if other blokes feel that way!
But I'm looking forward to hopefully, maybe, getting back into shape again. Despite 3 weight sessions and running 3 times a week and watching what I eat, I've gained 5 kilos, mostly around the waist. But at least I'm still on this side of the grass!!
All the best to everyone,
Cheers
Last PSA result was up a little from 3 months ago. Now 0.30ng/ml. Testosterone is also rising up to 4.3.
I put all this down to not having another Lucrin shot which was due on June 11th. Dr S is giving me a break from ADT and I'll keep monitoring my PSA. Even after 2 and a half months off treatment, the side effects, i.e., hot flushes, no libido, tiredness, still persist as bad as ever.
Looking forward to celebrating my 10th Anniversary of diagnosis in a couple of weeks! I've also been invited to tell my story to a local PCa support group.
All the best to everyone,
Mark
It's now 8 months into my "off cycle" from ADT.
I still don't feel 100%, even though my Testosterone has almost completely recovered to pre ADT levels. But I've got my "Mojo" back! (libido and everything is working again!) Although still struggling to lose the 6 kilos I put on.
As predicted by my Oncologist, my PSA has increased rapidly. November 17th it was 7.2, I had it checked a week later in case of a lab error and it came back 5.4., 6 weeks later it was 9.5.
I saw the Oncologist and he said it was because of the rapid increase of Testosterone,and that he expected the PSA rise to"moderate". A month later it went down to 8.39.
He wants me to check it in 3 months and if it's 20, will resume ADT.
This is a mutual agreement between my Dr and myself. There are no definite rules with IADT.
All the best to everyone out there.
Mark
In March 2017 my PSA went to 15.8. A doubling time of 6 weeks. The oncologist was wrong in thinking my PSA would slow down as my Testosterone leveled out. He immediately put me back on ADT. I began to lose confidence in him.
By June it had fallen to 0.05., but I still wanted to seek a second opinion on treatment.
I am now under the care of a Medical Oncologist who specializes in PCa treatment. He suggested that I stop ADT to let my PSA go to 1.0 and have a PSMA scan done. He wants to see exactly where my PCa is.
Will update soon,
Cheers,
Mark
A Gallum 68 PSMA Pet/scan on 15th November,2017, showed metastatic spread to the right common iliac node (which was first found on MRI in 2014), but now almost double in size at 26mm x 23mm, and several other pelvic nodes involvement. A small met showed up on one rib. No other bone or soft tissue mets were seen.
MO advised me to go back on Lucrin and get another PSA in 3 months. I'm still responding to ADT which is good. I asked him about chemo and he said I'm not a candidate for it as I have "low volume disease".
Will try Estrogen patches for the hot flushes. It was so awkward when I went to get the script filled.The Pharmacist was puzzled as to why I had been prescribed female hormones.
Will turn 60 in a few weeks but I don't have any intention of a big celebration. Depression is starting to become an issue for me. Don't know whether it's the cancer, ADT or not being able to go running because of a broken metatarsal in my foot I incurred 9 weeks ago.
Update soon.
Mark
Most recent PSA on 15th August was 0.70. A good result. I'm still "hormone sensitive".
MO doesn't want to see me for another 6 months, Feb 1019. That's good news.
Trying to stay positive despite pretty much feeling like crap all the time.
Good 'ole ADT.!
Still, better than the alternative I guess.
Cheers,
Mark
Hi all,
Coming up to 13 years as a survivor. Still struggling day to day with side effects of ADT, and emotionally just knowing I've got advanced PCa.
As my PSA is creeping up, I am "technically" Castrate Resistant, but with a doubling time of 10 months, which isn't too bad. My MO will put me on Zytiga when PSA goes to 5.
I'm still in relatively good health, all my blood numbers are normal, I'm still working as a self-employed motor mechanic, there are others worse off than me.
Wishing everyone all the best,
Mark
PSA has gone up to 3.4. MO wants me to have a Bone scan and CT scan later this month.
Depending on the results, He's talking about enrolling me in a clinical trial with a PARP inhibitor in combination with Zytiga. This is one way to get access to Zytiga, which is outragously expensive if I had to pay for it. Otherwise, next option is Darulutamide.
All the best to everyone,
Cheers,
Mark
Hi all,
It's been a while since I updated my story. The news was good from the Bone and CT scans from last May with no bone mets and a reduction in size of the lymph nodes.
But now PSA is 8.3., I'm well and truly castrate resistant. Just had blood drawn so it can be tested for the BRCA genes. If positive, I will be enrolled in a clinical trial using a PARP Inhibitor in combination with Zytiga. If negative, I'll be on Zytiga alone.
Still feeling ok but urinating on the hour every hour with a very weak stream. I'm on Duodart which helps a bit. I'm having an Ultrasound next week to see what's going on.
Keep up the fight men,
Cheers,
Mark
Hi all,
Recently celebrated being a 15 year survivor. People say things like " so you got it all fixed? you look good" and I reply no I'm Stage 4, it's incurable but controllable.
Results of the gene mutations testing all came back negative, which included the BRCA genes, good news as I have 3 beautiful Daughters and an amazing Son.
Started Xtandi (Enzalutamide) 4x40mg daily tablets early July. After 5 months, my PSA has dropped a little,my MO was expecting it to drop a lot more, but he's keeping me on it for at least another 3 months.
I've noticed a lot more fatigue and tiredness with the Xtandi, more so than the Lucrin ever gave me,which I'm still on. But I'm still working in a fairly physical job as a Mechanic, but I'm lucky to be self employed. I've just cut my work load back.
A Merry Xmas and Happy New Year to everyone,
Cheers,
Mark
Hi all,
Most recent PSA result was 12.0 ng/ml. I've been on Xtandi now for 10 months. Even though my psa is going up, recent scans showed no evidence of metastisies, ( the previously affected lymnph nodes have returned to nearly normal size ) so the Xtandi, in combination with Lucrin, seem to be still somewhat effective. My MO says my cancer is "under control".
The only real issues I'm having is with my urinating. After being on all types of meds for it for the last 12 months, the frequency, urgency,week stream,incontinence have only got worse. 2 weeks ago, I ended up in Hospital in agonising pain and not being able to urinate at all.They inserted a catheter so as to drain my bladder and kydneys. A CT scan showed a kydney stone, which I ending up passing. I still have the catheter in,which is getting taken out in a few days. My Urologist says it's a combination of the Radiation treatment I had in 2006, the cancer in the Prostate, and the stone causing my problems. Ah! the joys of having Prostate cancer!
**Footnote- It's not possible to have my prostate removed (Salvage Prostatectamy) because of previous Radiation treatment, and any way, I'm still Stage 4, just no mets big enough to be evident on imaging.No point shutting the gate after the horse has bolted.
Keep up the fight fellas,
Cheers, Mark
Cancer has progressed, growing into my bladder and rectum. Xtandi and hormone treatment are no longer effective.
Started 6 cycles of Chemotherapy ( Taxotere ) on 11th July.
Side effects start about 4 days after each infusion and last for about 10 days, and just when I'm beginning to feel better, they hit me with the next dose. But the good news is that my PSA has fallen from 86 to 46. I'm starting to look like that skinny, pale, bald cancer guy. (my hair started to fall out so I shaved it all off, and I've lost about 7 kilos (about 15 pounds ) so far.
Will keep you posted
Mark
After successful chemotherapy last year the cancer is progressing again.
In May I was rushed to Hospital and had to undergo emergency surgery for an obstructed bowel.
The prostate cancer had invaded my lower bowel and rectum. A secondary tumour had also caused a blockage at the left ureter at the rear of my bladder, so I now have a colostomy bag as well as a nephrostomy tube coming out of my back to drain my left kydney.
I'm undergoing more chemo (Cabazataxle) to hopefully shrink the tumours.
So far after 4 infusions, PSA has fallen from 79 to 17. Will have scans in 4 weeks.
Keep fighting,
Cheers,
Mark
PSA is still falling now down to 7.7 after 6 Chemotherapy (Cabazataxel) infusions.
Tumour at rear of bladder has shrunk so the Nephrostomy tube in the kydney was removed. There is no ureter obstruction any longer.
Will get scans soon.
Keep up the fight,
Mark
Mark's e-mail address is: markdeane1 AT live.com.au (replace "AT" with "@")
