Things are changing rapidly - Advanced Prostate...

Advanced Prostate Cancer

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Things are changing rapidly

BrianE profile image
8 Replies

In my last report I had just received my first PSA result over 1.03 (3.70) and had my water works pack in. On 20 November I had surgery to sort things out. This showed that my cancer had now spread to the outer sphincter and blocked off the urethra. I had a Supra-pubic catheter inserted in my bladder and given a night bag. I found the whole thing most uncomfortable and I was having regular bladder spasms and passing blood and urine through my penis. I therefore had to wear incontinence pads as well as bag connected to my catheter.

I had also been put on Androcur along with my Zoladex implant in case it might work. This increased all my ADT side affects and I had miserable couple of weeks before my scheduled heart procedure on 20 December. My daughter, her partner and big dog drove the 2,300Km from South Australia to look after me.

The procedure, a left atrium appendage occlusion, was supposed to reduce the chance of a stroke due to Atrial Fibrillation. The procedure went off without any problems apart from bladder spasms upsetting my 24 hour heart monitor. Each spasm meant that I had to grab my urine bag and my holter monitor and stagger of to the loo. Here I had to struggle to to arrange my hospital gown and incontinence pad and sit down. I had considerable pain with each spasm and generally passed blood and urine through my penis. Then it was back to bed by which time the automatic monitoring system had alerted the nurses who had to check the monitor leads and reset the monitor. After about the sixth time the Doctor gave me a strong sedative and pain killer and I slept for 10 hours.

I was home for Christmas which is also mt daughter's birthday and we had quiet celebration with old friends punctuated by bladder spasms.

Early in the new year I had the catheter replaced with a different design which immediately stopped the spasms but I still leaked blood from penis and I still required a pad. I also had a full series of blood tests for review on 15 January. My daughter and companions drove back home in 40C heat and I tried to get back to normal life.

I had been experiencing increased pain from my hips and lower back and my daily chores including walking my dog were taking longer to complete.

On Monday 14 January I had completed my pre-breakfast chores - remove and sterilize night bag, shower and cleanse catheter site, dress and make bed when I collapsed on the bed. I literally could not move. After a little while I was able to phone for the ambulance service. I have private medical cover and I was taken to the ER of my Urologist's hospital - bad move.

On admission I was diagnosed with a bladder infection, put on a drip and handed over to a Consultant Physician. My attempts to get them consult my urologist were ignored. In the end it wasn't until Thursday that she received my message when the shit hit the fan. My blood tests showed that PSA was 27 nearly 1,000% increase in 6 weeks and my hemoglobin had dropped to critically low levels. My heart specialist was also called in and a brief conference resolved that my cancer was spreading quickly and causing the drop in hemoglobin and subsequent lack of energy, my metastases were causing increased pain and I was too weak to return home to independent living.

I decided not to have chemo or any other treatment a decision supported by my Urologist and and Cardiologist and to set up a Palliative and Pain management plan. I remained in hospital a few more more days before my daughter drove back to take me home. To date there are no plans in place.

I see my GP next week and hope to bring a Medical Oncologist and a Palliative Care specialist on the team plus the government department who control home care services.

New scans will be arranged and blood tests taken to see how fast things are moving. All I know is that I am too weak to shower myself, drive or go outside except in a wheelchair.

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BrianE profile image
BrianE
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8 Replies
savingdaddy profile image
savingdaddy

It sounds like you have been through the wringer. I pray you gather strength each day and you get some answers with a plan soon. Best wishes to you! I will keep you in prayer. God bless.

Tub111 profile image
Tub111

There are no words that I can write without tears. I will be praying for you...

Sheri

RalphieJr64 profile image
RalphieJr64

Dear Brian, hang in there. I am praying for you. God bless you.

Ralph

I am sorry for this nightmare that you’re going thru right now...... for we ‘re all on the same path... just wishing you peace ..You write well . Thank you for sharing..

George71 profile image
George71

You didn't say whether you are on some form of ADT or not -- It would likely shrink the size of the tumor for a time -- either way I would try and get gene tested for immunotherapy. People have had some miraculous turn arounds with Keytruda and such.

BrianE profile image
BrianE in reply to George71

Hi George

I am still on Zoladex implants. I live a long way from any major PC research center and am not really able to travel too far.

I will take my MO's advice on future treatment.

Brian

George71 profile image
George71

Wishing you the best BrianE

j-o-h-n profile image
j-o-h-n

With a name like Brian you gotta be a tough guy.... so keep hanging tough...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/03/2019 10:17 PM EST

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