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[thevvy]

I was diagnosed in May 2013 with Prostate cancer. PSA was 9 and Gleesons was 7.

I was 63yo. The cancer had spread beyond the prostate and both seminal vesicles were fully involved, as well as a small part of the bladder wall.

Treatment was 2 years or ADT plus 8 weeks of targeted radiotherapy.

I was on Zoladex 3 monthly until June 2015, when my PSA was at 0.08.

Followed up with 6 monthly visits to Urologist whilst monitoring my PSA which climbed slowly to 1.14 in January 2017. On my last visit my urologist said he did not need to see me again, and all was well.

PSA test in May 2017 was 3.26, and I was cleared as OK. Fast forward to late November 2017, when my PSA came back at 6.2. My GP spoke to my urologist who suggested prostatitis, so a course of antibiotics and anti inflammatories. In the first week of January 2018 my PSA was 8.1, and I was referred to a new urologist.

A further PSA test on the 10th February 2018 came back at 9.9.

Following a pelvic CT scan and a Whole of body nuclear bone scan I was diagnosed with stage 4 prostate cancer, with lesions in my pelvis and spine (T6), as well as a lymph node.

I am currently on ADT again (Cosudex tabs daily, plus a 6 monthly Triptorelin22.5mg injection)

My heads all over the place at the moment, and I am still trying to come to terms with everything. No one seems to be able (or willing) to give me a prognosis at the moment, so I am winging it until I next see the urologist in May.

Should I be pushing for a referral to an oncologist at this stage, or leave it until May after we see how everything is going after 3 months of ADT?

Any help or advice would be sincerely appreciated.

Cheers

Thevvy

[Dr_WHO]

Yes, please find a medical oncologist that specializes in prostate cancer. There is nothing that the general practitioner or urologist can do anymore. Please try to get an appointment as soon as you can. Why wait and let the cancer become more entrenched?

[thevvy in reply to Dr_WHO]

Thanks Dr_Who. Its all new to me, and I am on a steep learning curve.

I have a wonderfully supportive wife (47yrs) which helps tremendously.

Cheers Cobber

[JoelT]

Thevvy,

As Dr. Who has recommended you should be stepping up to an oncologist with prostate cancer expertise,

You also asked about prognosis. Nobody can answer that question. Each of our cancers is different and each of our bodies is different. Each of us will respond differently to each treatment, at this point in time we do not have the technical ability to make even reasonably accurate predictions.

Even more important than knowing the long haul is how you deal with each day of your life and each treatment. Some of us will be very responsive to a particular treatment while others might not have any response. There isn't a way to know if you are response how long you will respond.

If you read the statistics hormone therapy (ADT) will only work for 18 months, but there is an extraordinary number of men who are long-term responders. I remain hormone responsive after 12 years and I work with other men who are pushing 20 years.

When I found out that I was metastatic I was led to believe that at most I would be around for 5 years. That was 12 years ago and I have no reason to believe that I will not be here in 12 years.

Joel

[thevvy in reply to JoelT]

Thank you so much Joel... I appreciate that. I live in a remote rural area of South Australia where there isn't much in the way of support groups. ( There are 14 people living in Wanilla, the town in which I live)

My wife and I have come to terms with it a little bit, and have decided to "live for the moment", there being not much we can do about tomorrow or yesterday.

This outlook has improved my mental state considerably.

As for a Medical Oncologist... most of them are in private practice, which puts them considerably out of my price range, so I will have to work with what I can afford.

Thank you again. I have a bit to learn as I am only just starting my journey by the sound of it!

Cheers Cobber

[Hidden in reply to JoelT]

Fantastic story JoelT ! Thanks for sharing and inspiring us...

[j-o-h-n]

Hey Mate, great advice from Dr_WHO and JoelT.

I just did a google map of Wanilla SA, Australia (Aerial view), Man oh Man you're really under the "down under". Alice Springs looks like a metropolis compared to Wanilla.

Good Luck and Good Health.

j-o-h-n Sunday 03/11/2018 3:29 PM EDT

[thevvy in reply to j-o-h-n]

G'day cobber

Yep all but wiped off the map in the 2005 bushfire, but coming along nicely now.

I've got an appointment with my GP on Friday, and am planning to ask for a referral to a medical oncologist then.

Scary thing is, if I hadn't been told I was sick and could pee properly, I wouldn't know I was crook.

I am now advocating to any bloke who will listen to keep their eyes open for symptoms, and demand a PSA check annually. It is surprising the number of GP's who think the PSA check is not worth the effort.

Cheers cobber, and good luck and good health to you too!!

[j-o-h-n]

Make it a "Medical Oncologist that Specializes in Prostate Cancer". =============================================

Good Luck and Good Health.

j-o-h-n Monday 03/12/2018 2:09 PM EDT

[Hidden]

I second Dr_who . Personally I think waiting until May is not good . Time can make a difference. A specialist is much better than a urologist. It can be dealt with , not with out some suffering . I think you can push it down again. A tenacious opponent for sure. I’m still in the first chapter with some success . so we all pray to delay pain and suffering and limit it in the end. It’s not over for you yet . Time to write another chapter. I’m pulling for another round that you win to fight another day. It’s mind boggling on so many levels, but it’s the nature of the beast inside of us not to stop eating us alive so we can not give in either. , not now, not yet , someday we all will throw in the towel. Sorry for this upsetting turn but it’s not unexpected statistically . I’m told if lucky and with help,from above that my current status typically last 4 yrs I’m 2 in But there are no written or implied warranties in life but especially with metastatic APC . We’ re living on borrowed time.I pray you find relief and answers soon . In the meantime don’t blame yourself or go down in flames emotionally. It’s just another step climbing to the top of the pyramid. In a few months , I’ll bet you’ll see some light. Otherwise buckle up!!! We all know the cruel phycology of APC . The ultimate test for a man and his family.. You are not alone in this...

[thevvy in reply to Hidden]

G'day Lulu700

Its all good, cobber. I have fantastic support from the love of my life (whom I have been married to for 47yrs), my kids, and a swag of friends who have rallied around to push me.

I feel quite positive about the future, whatever that might hold, but I plan to live life like a Jack Russel terrier. If you can't eat it or screw it, piss on it and walk away!!

Can't change the past, can't change tomorrow, so I give today everything I've got!!

I'm still working, helping a farmer friend who has just had a hip replacement, and my son, who is an upholsterer, and who refers to me as his apprentice.

Reckon I got a few years in me yet.

Cheers

Thevvy

[Hidden in reply to thevvy]

Thank you sir, for sharing your story with us. You are blessed with love and support. Your greatness shows through in your spirit. .. Its good to be an “ apprentice.. enjoy what ever life we have day by day. God bless!

[snoraste]

All good advice from members here. Don’t despair, there are plenty of treatments available. And don’t ask for prognosis from your doc - your prognosis is in you head. I admire your positive attitude - keep it up.

You need specialized PCa oncologists. Doing all the tests and labs locally, and asking for consultation with remote centers would be an option?

Hang in there, it’s the beginning of a long journey.

[Hidden in reply to snoraste]

I like that. Don’t stick a bad prognosis in your brain like I did.. it’s fuuny how the spoken word from a Doctor stays with you. Negative or positive thier words have weight. So does our inner voice. So if I tell myself I’m Fu####, in my own mind I am ..That old positive thinking is good for your health stuff. Gloom and doom kills the immune system. . thevvy can take your message and prevail.. Thanks

[thevvy in reply to snoraste]

Well, made an appointment with a Medical Oncologist in Adelaide who specialises in prostate cancer. Earliest appointment is for the 10th April, so we are taking the caravan on a mini holiday for 4 days. Works out cheaper than motels and hotels, and is certainly more relaxing. More blood tests before I go to check PSA and Testosterone levels so we have a level to start at. The Triptorelin/Cosudex combo certainly hasn't given me the side effects that the Zoladex did (grateful for that!) and we'll find out if they are doing their job shortly.

They are doing something as I am peeing the best I have in 12 or 14 months.

Good luck to all of you, and I will post the results of my Oncologist visit when I get home.

[Hidden in reply to thevvy]

It’s good to pee..

[thevvy]

You betcha !!

[Daddysdaughter]

Someone on HealthUnlocked looking for you in the thread this morning. Hope your doing well.

[JimVanHorn]

I talked with two oncologists and started 42 radiations in 2007. In 2011 they found bone metastases so I had 30 more radiations and used Lupron injections every 3 months. I used casodex for 6 weeks when I started Lupron, because Lupron causes Testosterone spikes and Casodex keeps the spikes down. Over the long run Lupron lowers the PSA better than Casodex. I stayed on Lupron (Eligard - generic) for 6 1/2 years. I have had no cancer therapy for 9 months now, and I am cancer free. There are no guarantees with this disease and I am on active surveillance now. I am just letting you know that I had a good experience by asking several doctors who were specialists. I wish you well and just keep truckin'.

[Hidden]

My hope is to follow you with some years or living.. and enjoying the ride... Thanks for encouraging those beginning this bon voyage..

[Originalsnds]

Sorry to hear all the changes in your urologists. I dealt with only one urologist for 2 years and was not totally convinced that I had the best care. I did the radiation and was on Firmagon injections every 28 days. However it failed me after 18 months and urologist still kept me on it for 6 more months, only to get higher PSA readings. At that time he was considering Chemo for me, I wanted to make sure I had the best treatment next. I went to Fox Chase Cancer Center in Philadelphia an hour and 10 min. away for a second opinion. Met a new urologist, after our session he felt it was better to refer me to Medical Oncology. I am so glad I did that. My care in Research at Fox Chase has been # 1 for me.. No Chemo.. I was put on Elligard a form of Lupron. After 1 and 1/2 years it was also failing me a bit. Psa rising etc. Fox Chase Research discussed more options that would be better for me as the cancer had Metastasized several places. In my Left Hip, My Spinal Column from my neck base to Mid back as well as into my Ribs. MO Research did me great.. They have me on a Clinical Trial now for approx 9 months. It is working and holding the cancer from spreading further. I have testing every month and then every other month I go through an 8 hr. Day at Fox Chase Research. Full Battery of tests, Blood work lots, Scans many, including nuclear bone scans. Things are holding.. I tell everyone this as I truly believe a Second Opinion is crucial. I also believe that urologists are good at a Hospital Cancer center. I DO BELIEVE that a CANCER RESEARCH CENTER is the BEST> It worked for me quickly. I am loaded with cancer, it has been controlled so far.. Dec is 4 years fighting this beast with additional radiation as needed. I truly do not now where I would be today if I had not explored a Research Cancer Center .. My MO only treats Prostate Cancer, Not other cancers. There are many other Medical Oncologists there that specialize in other types of Cancer.

I fell I am is the safest hands with the best technology available. treatments that cannot be given by my local Urologist at my local hospital cancer center. No blame on him...They can only do what they are allowed. I still see him once a year to keep him up to date with my situation.

To EVERYONE out there, KEEP FIGHTING and search all your options for your BEST POSSIBLE CARE..