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Post Info TOPIC: Prostate Cancer, now the journey begins.


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Prostate Cancer, now the journey begins.


2 years ago I was diagnosed with prostate cancer and was advised by my doctor to treat it with radiation . There was a lot of cancer there but was wholly within the prostate. He described it as aggressive as The Gleason score was 8 (I blew high range). I underwent 9 weeks of radiation and had hormone deprivation therapy received injections every 28 days.

After around 6 months I developed pain in the groin, this lingered on right up to this current day. Every 3 months I underwent PSA tests all good until 6 months agowhen they increased minutely then increased a larger amount. Was told no problem there ( I had doubts). I insisted something be done to try and sort groin pain out as it was now wrapping around to my lower back and I was losing strength. So off I went to a surgeon who wanted to rule out the pain wasn't coming from hip or back, CT and Xray done CT showed a mark on my spine. So off I went foe a full body scan and yep it showed cancer on my spine.

Went on Thursday to oncologist ..... result, stage 1V incurable cancer. So now it's going to be a pretty rough road to travel. At this stage the main issue is controlling what goes on in the head, I have finally been given something for the pain which will be bumped up as the pain increases.



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Hang in there and keep positive. My nephew was diagnosed with stage four about 18 months ago and was given a pretty grim prognosis. He is out the other side now with it in remission.

Don't give up.



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I am not a medical person, but I did have prostate cancer, so I know just a few of the pitfalls

It is important to stay positive, and never give up

All the best for your future fight

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Tony

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Good Morning Tony.

Sorry to hear you prognosis, I had my prostatectomy just over 12 month ago and I agree the head is a tough nut to crack; however as others have said; keep positive.

I had to visit my doctor last week re post prostatectomy "mens stuff" maintenance, when he reminded me that we are part of an exclusive club; and help groups are out there IF NEEDED. My Doctor had his removed when he was 52 (10 years ago) and he is a good source for support and recommendations.

My thoughts are with you on your journey, and if I can help in any way; please ask.

Regards.

Hetho

 



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Good luck Tony......I hope you kick arse and that will make it special when you come out the other side.

Tony says.........."Every 3 months I underwent PSA tests all good until 6 months ago when they increased minutely then increased a larger amount. Was told no problem there ( I had doubts). "......

 

As a point of interest my DR told me...... "watch for sudden/large increases in your PSA "..cheers Bilbo

PS ...PM me if you want to exchange phone numbers



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Good luck mate.

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Trevor


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G'day there Tony.

Sorry to hear your news. Thanks for sharing. Sometimes that can help.

Like others have said, try to keep positive.

Remember, things can change and miracles do happen.

By the way, great photo of the dog you have there.

All the best, Joe.

 



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Big day this Thursday, I had my PET scan on Friday to find out if the cancer is anywhere else, they are concerned about lymph nodes as the ones in my groin are enlarged, I see my oncologist to get results and from there they then will work out what treatment I will be receiving. Fingers crossed.



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After my latest appointment with my oncologist, I was left with mixed results from my PET scan. Although the cancer has advanced to my spine and lit up like a spotlight, there is a bit of an issue with my lymph nodes in my groin and chest lighting up red. She said they don't know why, so a biopsy is due on Wednesday. Adding to that my left leg has swollen up to now be 12cm larger than my right leg above the knee, it gets a little heavy lugging it around by the end of the day. Now the fingers are again crossed for the biopsy results, then they set out a treatment program for me.



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They are now saying the Lymph nodes aren't a standout problem, whereas the spine is, so they are going to hit it with Stereotactic radiation (high density radiation). It will apparently rid the cancer from the spine, the downside, it will cause a hole in the spine, which eventually will grow back. Apparently it will cause a significant increase in pain, which is pretty ordinary already. He did say that the cancer will come back somewhere else, as it will be lurking undetected in a bone or bones elsewhere already, so a constant eye on PSA levels is a must. They are saying 2 hits of radiation a week apart, towards the end of September.



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Going to be fitted for a mold today so I will be kept absolutely motionless during radiation, which has been locked in for the first hit on 15/9. Ducking off for 10 days away in the van from next week to get the mind in the right state.



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Just an update, radiation completed so I assumed all would be good. The pain that remains in the back is extreme which the oncologist has put down to damage done by the treatment. 3 months after treatment they reviewed xrays and the like, they have told me that it appears that there is another tumor on my the bottom of my rib cage. So here we go again.



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S-H-1-T! Wishing you the best Tony.

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Possum; AKA:- Ali El-Aziz Mohamed Gundawiathan

Sent from my imperial66 typewriter using carrier pigeon, message sticks and smoke signals.



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Good luck Tony.....I wish you all the best....cheers Bilbo



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Hang in there mate weird things happen. Was told in NOV 2019 maybe 24 months left, had 8 months of chemo in 2016 and beat it, but like Arni it returned this time angry, different oncologist and he said we can do something, Jan 2020 put on chemo that the KGB designed, was i crook wow, eventually pulled me of the chemo end of April cause it was knocking my body around to much. However Nov 2019 no detectable cancer in body, Have I won the war who knows but at the moment I'll take winning the battles. ( he pushed my use by date out to 36 months )

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After a scan on Tuesday, I got the results from my GP yesterday. The good news was nothing showing up on the rib cage, however, the cancer on my spine that I thought they got, when radiation was done in September, has returned, bigger and more angry than ever. He has referred me to palliative care, in an attempt to get rid of some of the pain, explaining that all my medications will have to be reviewed and many changed for this to happen. I have an appointment with my oncologist on the 14th but something tells me I may hear from her earlier than that. So much for a happy New Year.



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Tony, I have no words other than try to alleviate the pain, both physical and mental to make the best out of a bad lot - Feeling for you and your Family.

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Possum; AKA:- Ali El-Aziz Mohamed Gundawiathan

Sent from my imperial66 typewriter using carrier pigeon, message sticks and smoke signals.



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Addendum; I'm just a dumb old Engineer mate with limited medical knowledge (gained mainly from personal experience and limited FA training) but if you need someone to yell at in frustration or just talk to give me a PM.

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Possum; AKA:- Ali El-Aziz Mohamed Gundawiathan

Sent from my imperial66 typewriter using carrier pigeon, message sticks and smoke signals.



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Possum3 wrote:

Tony, I have no words other than try to alleviate the pain, both physical and mental to make the best out of a bad lot - Feeling for you and your Family.


 Thanks mate, certainly doing it pretty tough at the moment.It's the type of thing that you cant put into words, its almost like your mind turns to mash.



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Know what you mean m8 it just will not leave / get out of your head. Ive been bit lucky could see 24months ( just over there ) but 36 months cannot see that far. I think what helped me was our daughter in Queensland sent one of her dogs down to me ( i know the dog very well ) we go for a walk to get the paper every morning, she comes with me when i go detecting, I talk to her and she listens. etc
Cheers Warren

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Hi Tony.

Just to say I am thinking of you.

 I have a good mate on the same journey. He reckons half the battle is winning what goes on in his head.

Take care,

Joe.



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Thanks Joe. Palliative care have been and changed all my pain meds. Now on large dosage of Oxycontin and some Lyrica thrown in along with 6 Endone a day. No change at the moment but its early days. I have confidence in the palliative care so we'll see how I go.



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Another update. After my medications were changed, I took an anaphylactic shock and finished in hospital as my airways closed up. Once again medications have been changed. The ones I'm on now have better receptors so are less damaging to organs. They are indeed 5 times stronger than Morphine, now its up to fine tuning dosages. I have been told that there has been irreversible damage done to my spine thanks to the high amounts of radiation they hit me with, so the only fix is threat it with medication. They have assured me the cancer will return so its wait and see where it raises its ugly head, meanwhile I'm just getting on with life, still doing my casual work and attempting to play golf through the pain barrier, but I'm not going to sit back and let it stuff my life anymore than it has already.



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Bloody Hell Tony - Golf to me seems a bloody good waste of a walk anyway, but do what you can while you can - the biggest problem now is letting your loved ones in and forgiving any past transgressions maybe finding some solace in the philosophies.

Just treat yourself with ever you want, need or desire, remembering you are the most important person.

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Possum; AKA:- Ali El-Aziz Mohamed Gundawiathan

Sent from my imperial66 typewriter using carrier pigeon, message sticks and smoke signals.



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Possum3 wrote:

Bloody Hell Tony - Golf to me seems a bloody good waste of a walk anyway, but do what you can while you can - the biggest problem now is letting your loved ones in and forgiving any past transgressions maybe finding some solace in the philosophies.

Just treat yourself with ever you want, need or desire, remembering you are the most important person.


 I am very fortunate in that regard as I have a wonderful support group in family and friends that would do absolutely anything for me. I have not had to drive to one appointment during this whole ordeal, and some of the appointments have been quite long in duration, they would bend over backwards for me (just as well, with my back I can hardly bend forward biggrinbiggrin)



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Here we go again!

I have had 3 blood tests for a PSA reading. The first really good, second a bit worse but still good, third worse again but Dr said she thought nothing to worry about (.58) the don't worry until it gets to 1.0. However, I just didn't feel right so I asked it I could get a PET scan done. Got the referral booked in four weeks later had to have another PSA done as well.

I got the results from my GP and the news not good...multiple lesions on my spine and PSA reading now 2.1. Appointment with the oncologist today to see which way we go now.



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So sorry to hear about your condition .

God bless you Tony.



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Blues man.



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I started tablet form chemo on Saturday, so now hoping that my body accepts it. The only side effect so far, that I've noticed, is a increase in tiredness, which is a pain, as all the pain killers do a good job of that already. Just hoping that the extra cancers start to shrink as they are very close to the spinal cord. The original one on my L5 (that was radiated, and not supposed to come back) is the problem child because its back bigger than before.

The impact on the mind is the hardest thing I'm having trouble with at this stage. Maybe palliative care might be a help there.



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Gee Tony, whatever you decide on from here is the best choice, palliative care, more pain killers even voodoo witch doctor - voice your opinions, hopes and fears to those nearest and dearest because it is now a mind game with the objective to live your best life for as long as possible. Do what you want to do, not what you think would be better for others - God Bless you Mate.

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Possum; AKA:- Ali El-Aziz Mohamed Gundawiathan

Sent from my imperial66 typewriter using carrier pigeon, message sticks and smoke signals.



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Have a close friend with this cancer ! Get on to it EARLY !! Keep getting tested !! He didnt !! Thought the operation cured !! Oh no it didnt !! So sad !! SORRY to be negative
Please guys get onto this and keep doing it !

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