Advanced Prostate Cancer - my missed diagnoses

[Dave Evans]

I first noticed prostate symptoms in 2010. I knew what there were, peeing many times in the night, difficulty in urinating etc. so I mentioned it to my then female GP. She ordered a PSA test which was about 4, so she referred me to an urologist. I had no family history of prostate cancer, but was still very worried and anxious.
He did a DRE and suggested a biopsy. The biopsy was negative, so I left relieved. He drew out the telling of the result however, saying... the... biopsy... proved ... pause... negative.  But I still had the symptoms. So my GP said it could be a benign enlargement and put me on DART medication. That shrank everything!  It also didn’t do much for the symptoms.
Then in 2015, the symptoms got worse and my now male, GP, suggested I go to the urologist. I felt the last guy had enjoyed the power he had over me when he was telling me the result of the first biopsy, so I asked to see another urologist.
The new urologist did a DRE and said it was a bit enlarged, but did not suggest immediate action.  Shortly after that, on a Friday night I had a few beers with mates and then found I could not pee. At all.  So I had an uncomfortable night, woke up at 8 and rang the urologist who said get to emergency.  So I drove to the hospital in the morning. Told the nurses what was happening.
Two young doctor interns showed up, a young man boy and a young lady, with a nurse and the male intern said they needed to put in a catheter. “It won’t hurt” he said. “How do you know” I quipped, he replied he had been told it didn’t, but he would have to try it. The young lady giggled.  By now, I had gathered something of an audience, the cleaner, another old lady who turned out to be the incontinence nurse and others were looking on as the “numbing” syringe was inserted. Followed by the catheter.
The relief was instantaneous and nearly 1.5 litres went into the bag.  I was beyond embarressment at this stage, thanked them all and drove home with the bag strapped to my leg. Catheter inserted.  Wife found it quite amusing.
On the following Monday I returned to the urologist who checked out the catheter etc., and suggested green light surgery.  He did some very painful tests with a camera and checking flow through the badder. The nitrous oxide was only soaringly given and was whisked away by the nurse. Lesson 1, ask to keep hold of the old laughing gas yourself!
Anyway, had the green light surgery where a laser cuts through the excess prostate material and wow! I could pee like a racehorse. I did not ask, but had a nagging question in my mind if he had taken biopsy samples while I was out. I wish I had now.  Anyway, returned to work and all seemed well.
Fast forward to 2019. I was under regular checks for diabetes, hypertension, gout and high cholesterol. All well under control, if a bit overweight (96kg 172cm).  My GP also ran regular PSA tests. My PSA on the May bloods had moved up. From 4 to 5. Worried, the GP said we had better watch it. I was not too concerned as it seemed a small change. The the November PSA however was 8.4! The GP was concerned and sent me back to the urologist.
This time he did a biopsy. It was now around Christmas.  I was called to the urologist, fearing the worst after waiting three weeks for the result. He told me I had cancer, and it was Gleason 9. Nearly as aggressive as it can get. “Very disappointing” was how he put it. Told me to organise a PET scan. Positron emission tomography involves getting a drip into a vein for an hour while your heart pumps a saline mixture of PSA doped with a radioactive isotope of gallium around your body.
Then a sort of geiger counter scanner which takes twenty minutes shows where the cancer has spread. Luckily, the PSA sticks to other PSA and find where cancerous prostate cells have travelled along the lymphic system.  The results went to the urologist a few days later. Even more “disappointment” - it had metastised and was in my lymph nodes, ureter, bladder and iliac bone.  An MRI scan got more details, and confirmed the PET. I had stage 4 Gleason 9 advanced prostate cancer. 
I was then really worried.  The urologist said there was nothing he could do, but without treatment I had less than two years to live. He wrote down the name of the surgeon who was my only hope.  After paying his bill, his receptionist wished me good luck.
I made an appointment with the surgeon.  He was a no-nonsense, competent sort of a guy.  He explained I was in deep trouble, and went through the MRI images, showing me the cancer. I did not want to look but he made me.  He said next week we would have a look inside.
The following week I returned to his hospital surgery, the usual urologist set up with a flow machine, catheters and laughing gas. This time I said I wanted the mouthpiece in my hand. No problem... “suck away”. He put up a camera and showed me in colour, while I was high on the gas, my cancer in my bladder. It popped out like a pink cauliflower, about 1cm in diameter, then popped in again. That was very, very bizarre. Thankfully I had the gas, and was feeling no pain. The surgeon was making wisecracks throughout so it was, unusually, not unpleasant. There were two nurses, a black guy and an Irish lady. They seemed to be having fun too.
Anyway, once the examination was over, the surgeon explained the problem. The bladder cancer was too near one of the ureters, the tubes from each kidney into the bladder. And did I recall, one of the ureters was also cancerous in a small area. That too had to come out.  And... lose some weight. Have to be 85 kg max for surgery.  Duly done, I was on the Herbalife plan anyway and had been 100kg in October.
So in early February 2019, I went for the first surgery. To move the ureters, put stents in them, and excise the cancer in my bladder.  This was “tricky” explained the surgeon, and as a chemical engineer, used to pipes and pressure vessels, I believed him.  The operation went ahead and I was knocked out. I was relieved to come around to learn I was not wearing a pee bag! My bladder and ureters were safe, at least for now. Wow. One hurdle over.  Made to walk the next day and told exercise was a crucial component of recovery. I went home two days later with stents and a catheter.
I stayed home for a week then had the catheter removed. Bladder function almost normal, mild incontinence.
Meanwhile got a Dexa scan to check body composition to reduce fat. Down to 82kg.
Main Da Vinci robotic operation took place at the end of February. An 8 hour operation involved radical prostatectomy, removal of 16 lymph nodes, and various other cancerous material. Took 3 days and walking around again. Still with catheter. Home again for a week then catheter removed.
A CT scan showed all was as expected except for a 600ml seroma near the surgical site.
PSA test showed a reduction to 2. Looking good. Then put on testosterone reducing tablets and implant.  I had an interview then with my first oncologist. We discussed my situation and he seemed optimistic. I asked him for a prognosis, but he said he didn’t have God’s number. We laughed.  I told him the best blood group was B-Positive. He thought that was funny, and told everyone in his surgery.
He said now I was recovered from surgery, chemotherapy could start along with testosterone suppression.
A month later in April, began 6 cycles of docetaxel every 3 weeks.  My hair fell out almost immediately, my toes went numb. I could not taste anything. But otherwise I felt great. The steroids you get for the first week saw to that.  Went back to work straight after and all went well with PSA levels down to 0.4, then 0.08.  Soon after 4 cycles down to 0.04.
In August, a check up with the surgery was very positive. I worried about the seroma but the surgeon said unless it was symtomatic, there was no problem.
I had a bone scan and the iliac cancer showed up, along with a tooth fused to my jaw.  I had the badly infected molar extracted under local.
Then I felt confident enough to do some DIY, because I was freezing after sweating at night. It involved attic work. After a while I got exhausted, missed my footing and came through the ceiling. That hurt like hell. But I went to work anyway.
After two days I started feeling very ill and became delirious. My wife took me to the local GP, who ordered me to A&E immediately.  I went to the local hospital, not the place they operated on me.  I thought seroma. I wanted it drained. But after 4 pain filled days, around midnight I was prepped for surgery. The surgeons said they were going to resect my bowel and give me a colostomy bag. I said no way, I need my seroma drained.
They said ok, they were not sure. Next morning I was taken by my wife to the original hospital.  Then they checked the seroma and it was full of e-coli.  It was drained, and I was on continual intravenous antibiotics for a week. With a bag again, plus I had tremendous pain in my ribs. Then a second seroma was identified by CT scan. Drained but not infected. I then had a PICC line inserted.
Feeling better after 3 weeks, went back to work with the clear drain bag on my leg and the PICC line for outpatient antibiotics.
I kept the PICC in to resume my last round of chemo so rudely interrupted by my fall.  THE PICC does not hurt and avoids using canulas. It is 0.5 m long and goes up into a main vein in your arm. This was November 2019. My last chemo cycle ended. The symptoms remained. Numbness and strange growths under my nails.  Taste of everything was cardboard.
But, by now, my PSA was below 0.02. Yay!
Anyway another bone scan in December  for the iliac and surrounds, in preparation for radiation treatment showed I had broken 3 ribs in my fall. No wonder it hurt.
Met my radiation oncologist and nurses and began 35 cycles of radiation on 2 Jan 2020. My hair grew back, thicker than before. The weird nails grew out.  I am now one third the way through radiation. So far it does not hurt. But the long term effects of the chemo make all my joints ache, and I have fatigue. My next PSA is in March.
I am so grateful to all the people who helped me get as far as I have. I am confident I will be in the 27% of survivors after 5 years.  I need that to finish my doctorate!
Thanks for reading this.  I hope it gives some hope to those newly diagnosed. My advice is to follow doctors’ advice, most of the time. And don’t do strenuous DIY!

[GregMac]

Hi Dave,

 

Thats one hell of a journey. I am going to stop feeling sorry for myself with regards to my own journey and consider myself lucky by comparision.

As I start my radiation treatment on the 24th of Feb i am going to keep your journey in mind and count my blessings.

I wish you every success and happiness as you move forward with your journey.

 

Cheers

Greg

[Patrick Turner]

Hi Dave, the time to have taken action against Pca in your PG was in 2010, even though you had a negative biopsy, which was then very possible if the tumour causing swollen PG was only the size of a pea or less.

In 2010 I read a lot of posts of men in Pca chat groups then which soon became dysfunctional because those who ran the groups died of Pca. Where a negative biopsy was obtained, men ordered another asap and often the 2nd or 3rd biopsy yielded a positive result, and  Gleason score was estimated, usually below 6, and then an RP was likely to be successful in ridding your body of all Pca cells because spread of Pca has not yet begun.

But standard procedure in Australia is to give first biopsy when Psa went to 5, and mine did, in 2009. At end of that year the biopsy gave 9 out of 9 positive samples and a Gleason 9 and 99% chance of many mets I found the whole process was never a laughing matter, nor did the nurses or doctors or specialists; they saw I had a horrible problem. I had a low Psa for what was a big pile of inoperable Pca. But no spread was found at that time, before PsMa Ga69 scans had become available. These scans did become available here in 2015, and I had one on 2016 which showed the first two lymph node mets, but no other mets. 

See my story at   http://www.turneraudio.com.au/Patrick-other-concerns.html

This shows the Psa graph from before 2009 to 2019, and how I responded to ADT, Cosadex, Zytiga, Chemo and Lu177 last year, which seemed to work well. I am now on Xtandi but Psa was 0.32 last November, and I have no symptoms. 

I am now 72, having survived Pca and its treatment for 10 years. 

I did find the worst side effects were from 5 x chemo shots which affected leg & feet function. I only had 5 chemo shots because it didn't work; Psa went up, not down, and my finger and toe nails were beginning to change, and all hair fell out. But now hair has grown back, more than before I had chemo. 

Yesterday I cycled 53km across town with average speed 24.3kph, so I am healthy. 

Weight is well under control with BMI 22.2, waist 90cm. I still wake up to pee 4 times a night. So far so good. But my Pca is likely to grow back again, so the fight ain't over yet.

Patrick Turner.  

[Dave Evans]

Patrick thanks for that.  I feel it was a pity my cancer wan not found in 2010 but hey.  I wan annoyed the urologist in 2015 gave me green light surgery, but did no biopsy.  I found chemo bad on my toenails finger nails and my hair also fell ut.  Now grown fully back, and curly/ PSA now <0.02.  But still vigilant and I have also just had cataract surgery on my right eye as a  result.  With one  lens in and one out of my specs, I am a bit lop-sided until we can again get surgery.  Good luck to you and to Greg Mac.