Hi I am Tom and was diagnosed with advanced prostate cancer PSA 358 with 3 possible locations outside the prostate 2 weeks ago. Right now under a Drs care but so many questions and fears. I’m afraid this whole thing is going to be Hell for my family. When I know enough to ask intelligent questions I will
Newly diagnosed : Hi I am Tom and was... - Advanced Prostate...
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Hi Tom
We r here for you !!!
We ll get u thru it
Lots of smart men here and they all care......
Praying for you and your family
Here are some options to consider for men in your situation:
pcnrv.blogspot.com/2017/06/...
In addition, two new drugs will probably be approved in the next few months:
pcnrv.blogspot.com/2019/05/...
Lots of options!
A Urologist probably diagnosed you but now is the time to see a Medical Oncologist....I'm a G-9 with a bad prognosis but I'm still fighting this thing 10 years later...Many guys here have similar stories...Your first step in treatment will probably a fun thing called ADT or Androgen Deprivation Therapy..Learn all you can about it and prepare yourself and your family for it...Best of luck to you...
Wow, gives me hope for mu husband G9 PSA 320 3mets in bones, may I ask what treatment you have over the years.
I'm jumping in here to tell you my story, which might be similar to yours (hopefully, even better).
I was diagnosed as G9 with a PSA of 300 (>) with lymph node involvement, about 2 years ago.
I was treated with radiation (79 Gy) and ADT for 16 months.
Today, I am symptom free, undetectable PSA (<0.02) while watching and waiting.
Don't panic - there's lots of hope and healing happening all over the place.
You have just begun the fight, which is very manageable in many circumstances.
We all wish you well .....
Hi, my husband started on ADT, had 6 Chemo sessions, and 6 sessions of RT (1 per week) on no 5 this Friday. His PSA went down to 1.5, in Dec but up to 2.1 as of March, so a little concerned. Have a new PSA done this Friday, and see OC wk on Monday
He still has his prostrate, 1 lyn involved. is on ADT for life, how long did it take for your PSA to get to 0.02?
How many RT sessions did you have.?
Thank you for sharing your story with me. Are you saying you don't receive any treatment now?
If so that's brilliant news
My radiation treatment was daily (5 / week )for 9 weeks.
1/2 of the treatments involved the pelvic area AND the prostate.
The other 1/2 was the prostate only.
I also started ADT prior to the radiation to try to reduce the size of the prostate.
I had a complete urinary blockage that required a TURP, so I had a catheter for 4 months.
The ADT was for 3 months before the radiation and continued for more than a year afterwards.
It's clear that no two cases are the same. My treatment plan is not intended to be taken as advice.
Just thought I'd share something positive, because you'd be surprised that things aren't as bleak as they might initially appear.
Do some research on 'best practices', concerning prostate cancer patients, specifically.
There is one thing that is more certain. You are past the treatment phase that only a urologist could provide.
Another major difference is that in Canada, we aren't dealing with insurance companies and coverage issues.
Based on what I've seen and read, there is a huge difference, in terms of outlook and some stark realities a patient may face.
Being your own best advocate is a major incentive for quality care and quality of life.
Are u treatment free?
I am treatment free. Had my last ADT (Lupron) shot in July of 2018.
I take some select supplements.
I have regained a lot of my old strength and feeling better as time moves on.
It doesn't sound like you have bone mets do u?
No evidence that scans and tests could find at the time of Dx (2+ yrs. ago). I was node positive. (T3B - one step below Stg 4)
I do have CTCs (circulating tumor cells) that were identified by my RGCC tests.
The RGCC tests identified supplements and conventional chemo agents that were effective in apoptosis and/or managing the disease thru targeted receptors.
Those are the focus of my supplemental and dietary strategies, along with lifestyle changes.
Played 4 rounds of golf this past week already .....
If only those trees would get out of the way !
What supplements are u on , if u don't mind sharing?
I should prepare a cut and paste version, because I get asked this a lot.
You get what you pay for - CHEAP supplements and too low dosing are factors in NOT purchasing anything.
Briefly - Curcummin (longo / highly bio-available)
Vitamins C (at least 6 grams / day) + D (4,000 IUs) and B Complex
Medicinal mushrooms - reishi + chaga
Pre + probiotics
Fish Oil
Deep Immune Tonic
Hops
Medicinal cannabis (oil based) tinctures - CBD (daytime) and THC (nightime)
I have a bad case of arthritis and insomnia - those pain management / inflammation supplements are not included in this list - but they are a mix
of off label or herbal remedies that are not related to PCa.
I wish I had the courage to do what you're doing. I take supplements but I also take Lupron and Xtandi. These hormone drugs are a nightmare. I had three bone mets that no one has seen for 7 years. I also have an undetectable PSA. QOL is not that good though, the side effects are brutal. I'd sure woud like to stop them but the doctors scare me with dire consequences. Everyone's story is so different. In your case it's hard to believe that you have no bone mets with such a high PSA. In my case PSA 31, I sometimes wonder if I had any bone mets right along. They're finding arthritic tracers everywhere but no progression. The original 3 bone mets , one on L3, one on sacral and one on shoulder blade are resolved. I really have no idea what this all means. I'm in a clinical trial so I get Xtandi for nothing. I therefore take 4 a night...the full Monty. The side effects , I need not list u probably are familiar with them. I go to NIH so I get bone scans, cat scans and pet scans, scores of blood tests...no progression. This is great but going through life feeling lousy is no bargain. Maybe soon they'll come up with something that will knock it out with no side effects...I won't hold my breath.
The worst side effect for me was the hot flashes / night sweats.
I was never able to find anything that worked to combat them.
I suspect the answer lies in what menopausal women do to combat
the the flashes.
Whatever the RO team offered as a relief failed miserably.
I did, however, set speed records for how fast I could rip my shirt off to cool off.
I always wore a tank top underneath to make sure I didn't gross people out - LOL
IF I ever have to do those drugs again, job # 1 will be to experiment to find some relief from my number 1 complaint ...
Thanks for your input
Hi Tom, I am also Tom 
Yes, the beginning of the journey will be hell, but you will come out the other side. I'm only about 8 months since diagnosis (with countless metastases) and my last scan showed huge improvement, my PSA just went undetectable, and I'm feeling great!
Hey Tom. I didn’t find this group til a few days ago and am so glad I did. I was psa of 500 2.5 years ago with at least 15 points of metastasis diagnosed at 50. After chemo, radiation, and ADT, I joined the PSA ‘zero club’ 1 year ago. I feel and look great and my quality of life has never been better. Hang in there! Doug
Gosh, that’s encouraging. I’m about to have to begin ADT and it scares the crap out of me.
I was a sexually active 50 year old...and that was over two years ago. Transition was traumatic for me but I didn’t have this group! The light is bright at the end of the transition tunnel, AllenMarco...and it’s a new beginning as weird as it may seem.
No reason to be scared..... just be concerned and live your life..... LAUGH A LOT
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/11/2019 4:55 PM DST
Welcome Tom,
To the forum that no one wanted to join. You are not alone. I was diagnosed in October 2017--had surgery, and had recurrence--1 met lesion on clavicle. You joined a Band of Brothers. I had trouble sleeping early on....I found Melatonin 5 mg to be helpful. Ask questions when you are ready and we'll help. Especially, once you find out your treatment plan. Let us know where the 3 mets are, your Gleason score, and we'll have suggestions. Good luck....
Don Pescado
Hang in there Tom. You are not alone, this band of brothers will help you through this.
Tom...." Let not your heart be troubled". I was diagnosed with Stage 4 PCa with metatsize to bones since Nov last year. First and foremost, have faith in God...and find a good oncologist and learn about the ADT and its side effects...and ask any question in this forum. Someone will be able to help. Another suggestion ..."Have a positive expectation of good"....eat right, rest well, start an exercise regime ( even it is just walking )...My treatment has done very well....PSA down from triple-digits to very low single-digit . Good luck and God bless you
pcnrv.blogspot.com/2019/05/...
You have heard from a lot of people who are traveling the road you are on. They are smart and they care. The attached article is important for early stage decision making. I was diagnosed with low PSA and high grade disease. I was told it was contained and the evidence supported that. I rushed to get it out of my system. I doubt I would have done anything different in hindsight. Having said that, the advice in this article to put together a team, listen to all their perspectives, and talk with veterans like the well-informed on this forum is very important. I have used the quote at the top of this article my whole business life, but did not put in practice when my Pca was diagnosed. Each discipline has a bias and it could be helpful to digest it all and decide which path forward makes the most sense for you, your family, and the pathology of you. Oncology, Radiology, and Urology doctors should communicate together and be patient and clear when talking to you and your family. I recommend recording consultations. I have started to do that with my Ipad. Sometimes I focus on one thing I heard and zone out on the next 3 things a Dr says. Listening the next day has been helpful.
I never spoke to the radiation oncologist because they took too long to respond to me. I am more deliberate in analysis now, speak to more than one Doctor about everything, try to make sure I understand completely the reasons for doing things, and read this board religiously. It helps me to be more decisive. It also helps me to be more optimistic. Good luck.
Tom. We all are in the same spot, some longer than others but real life experiences. Good luck with the monster 🙏🙏🙏
Prayers for you brother. I look forward to following your journey. Never lose hope and do your best not to let this consume you. You have a lot of living ahead of you.
Above all keep a Positive Mental Attitude -- very difficult at this emotional period -- but the sooner the better. I'm 3 years into Lupron and getting ready for vacation from it. Just see positive things that you have and enjoy them and get good treatment as suggested by experienced guys here. Best wishes!
Tom,
As you start this journey you will be bombarded with new terms, medications with various side effects, you’ll wonder what this means for you and your family.
I recommend educating yourself and your spouse on what the standard treatment protocols are and what the newer treatments are ( there are a lot of new treatments). Get a team of great doc’s as others have stated, get to a center of excellence, there are many, and be and advocate for yourself.
Lastly you have a great support network on this site so please ask questions and know you are not alone.
Hello Tom,
The first piece of advice would be to slow down and take a breath. We were all where you are right now and all went through the initial stage of panic and pity. As others have said, you need to get set up with the following: Medical Oncologist that specializes in Prostate Cancer, Radiation Oncologist that specializes in Prostate Cancer, and preferably a Urologist Oncologist or at least a Urologist that has performed a number of RP or Robotic surgery. I would suggest that you find some kind of prostate cancer support group for your wife also. She will be experiencing a lot also during this time and might like to have a support group that she can share with and lift her up.
I am 52 and was shocked to find I had an elevated PSA on my 50th birthday. After all was said and done, I too was diagnosed with advanced prostate cancer. My Gleason was a 9 (4+5) with positive margin in three places. I was negative mets. I had an RP in Oct 2017 with right side nerve sparing. After the RP I went through 40 treatments of radiation with a regiment of Lupron/Zytiga/Prednisone. I am part of the Stampede Trials and will continue the Lupron/Zytiga/Prednisone for another 12 months. Currently my PSA is <.008 and has remained steady through this treatment. The prognosis for 15+ year survivable life is pretty good at this point (I think the said in the 75% range).
Your ultimate outlook is good and the likelihood of an early departure is extremely slim. You have a journey to make, but remain positive, focus on beating this diagnosis, and living with your family.
Zytigadude, you’re like reading my own exact age of diagnosis, treatment, results so far and hopefully, prognosis. Tom, you’ve found a good group. I was alone in all this my first year and it became very isolating for me. You’ve got brothers here!
Hi Tom. Welcome to this forum. Yes, this is a very trying time. But you have come to the right place for some brotherly advice. We all here have been where you are right now. Take care and listen to your doctor.
A good read to start with (Kindle)
amazon.com/Key-Prostate-Can...
Good places to go,
Centers of Excellence
MD Anderson, Mayo Clinic, UCLA Medical, Memorial Sloan, John Hopkins, The Levine Cancer institute, Duke Univ. Medical, Et Al--where they have everything on one campus; such as Radiation, Scanning Capability, Prostate Cancer Trials, Prostate Cancer Research, Medical Oncology, Medical/Surgical Urology
Welcome Tom to the club none of us asked to join. There is awesome men on this site that have a wealth of knowledge and information. Do yourself a favor and take a deep breath and try to stay positive. There are many options for us now and more on the horizon. Never give up never surrender. Leo
I strongly suggest you find a daily exercise routine you can live with, ASAP. I think the evidence, much of it anecdotal, is very strong that this will minimize treatment side effects (SEs) as you go forward and generally improve your quality of life (QOL). You will find many on this blog, including me, who swear by it.
I’m fairly new to this forum. Had nerve sparing prostatectomy followed by radiation. PSA started rising 2 years later and have been in a clinical trial at NIH for the last 3 years (Xtandi + vaccines). PSA rising, doubling time 1 mo. About to start ADT and scared. The forum gives me hope that I may still enjoy my life, although the changes frighten me.
Hi Tom, I am based in the United Kingdom so won’t talk of treatment options as yours will be different (better) than mine however 4.5 years ago PSA 342, Gleason 9, 3 sites outside of prostate with mets so similar to you. PSA now 0.12
In the early days I cried a bunch to be sure but after a month or so I realised that on my death bed (whenever that may be) I won’t wish I spent more time being sad and sorry for myself.
I ran a bit before but then went for it, I have raced/run thousands of miles across the Sahara desert 4 times, the Arctic twice, done races in Albania, Cambodia , Spain, countless events in the UK and just finished the 600 mile Camino de Santiago.
Whilst doing so I have met amazing people , seen amazing places and raised over $750,000 with the help of my friends for Prostate Cancer.
Now running may not be your thing but I write this to give you hope for much more than the 2 years you (and I) were given and along the way have had more fun than I would have even if I had not been ill!
Learn all about your cancer sure but don’t forget to live every day in the best possible way as you will have more amazing times ahead if you want them.
Take care, dream like you have forever live like you only have today!
Kev
It's a difficult blow to the mind when one is first diagnosed. Hang in there, There are many treatments available. Happy to try and answer your questions or provide info when you are ready to ask some Qs.
Hi Tom, I’m John...It will be tough for awhile, no doubt..but when the precise treatment is found ( soon enough ) for your PC you will be just fine..I’m 13-years out; had the Beast surgically removed; found just a few wayward C Cells on Seminal Vesicles; no problem, zapped them right off.
Get the best Drs. who are Artists in what they do best and you’ll all set.
Welcome, some great info here.
Hey there Tom,
Great pic of you and your...daughter 😉. Welcome to the monkey house. There’s a lot of great men and women in here who will give you tons of support, empathy, good (and occasionally not so good) advice, and links to resources that will help guide you through your journey. It’s a long ride, so buckle up, and keep the faith. We will be here for you. 😎
Make petscans and 3t mri your first request from your oncologist. Not just bone scans and biopsy. Get the information before they drive your psa to low to allow the pet scan to show anything. They want them but sometimes insurance gets in the way. Spend the money if you have to.
The best advice that I have seen on your query is by far, Nakakrats’ post.
Nothing wrong in de-bulking; either surgery or radiation. I chose Brachytherapy with 25 sessions of external IRMT. When that failed, I went straight to a Medical Oncologist that specializes in advanced prostate cancer. I found my guy through one of my ROs. He was in academia; teaching at a medical school and doing research. He sold me on early aggressive systemic treatment and I enrolled in a Chemotherapy-Hormone Therapy clinical trial. His reasoning was sound and atypical of most early metastatic treatment. I enrolled for this six month trial in 2004. Quite frankly I haven’t worried nor looked back since it’s completion. It was my shot at cure with a fallback to increase life expectancy if the trial failed for me,
My advice is simply to killed the bastards while your body is strong and the tumor burden minimal; before co-morbidity sets in.
Gourd Dancer
Welcome Tom, as somebody else said, to the group none of us wanted to join. But we are all very grateful and thankful this group is here. It is very helpful for me when I have so many questions. I was diagnosed October 2018 with multiple mets, Gleason score 9, and PSA 43. I am only 47 years old. After my diagnosis was the worst month of my life, then through a lot of prayer and seeking second opinions at a research university, the black cloud has gone away. Seek great doctors but also learn as much as you can. Learning about living stress-free, staying very active with whatever exercise you can, and eat as healthy as you can will help you feel better. My PSA is .02 and right now I am finishing radiation which has been smooth. This can be treated for many years, and I approach each day thankful for that day and praying for many more . Prayers for you and your family .
Hi Tom and wife,
I too am a wife of a metastatic PC husband.
We are a team!
We were in your place more than 8 years ago and felt the same despair.
This forum is here for support and help guide you if you need.
Ask any questions as many here are informed through experience.
No questions are limited .
Stay positive!
BOOGEE
Hi Tom, I understand your situation. I am only about a month or so ahead of you. This site is so informative and full of good people willing to share their experiences and treatments. It is really almost unbelievable . Hang in there we all are going down the same road, some are farther along and are paving the way for us.
I feel and felt exactly what you expressed 3 yrs ago when i was given 18 mos to live, and then a second opinion gave me 12 mos funny now. Because there are many options for us to live a very long time. I am currently on zytiga and predisone. So there is much hope.
To Tom wife , I was where you are in April and these men here keep me sane I have good days and not so good but My husband still here and will be starting chemo. But when I feel down I just look on these pages of these guys and they give me Strength I need
Greetings Tom and to the nice looking woman sitting next to you. You've come to the right place for help and info..... Would you please be kind enough to give us some more info about you. AGE, LOCATION, SCORES PSA/GLEASON, WHERE TREATED, WHICH TREATMENTS AND DOCTOR"S NAME(S)? all info voluntary but helps us help you and helps us too. If you should reply please do so on another day and NOT to me. Thank you....
P.S. Give that pretty lady a kiss every now and then.... and remember to Laugh.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/11/2019 5:08 PM DST
Hi Tom. You are in the right place to deal with this disease, along with your lovely family, the people here will help! You know one day we won’t even be using the word cancer at all... there are so many new treatment options coming out all the time and with pca if one fails there seems to be another than can help... try to think of this disease as being treatable! You are here for the long run...
I hope you get the best care available & wish you the best of luck.
This is Bob and my pca has recurred just shy of 4 yrs after initial diagnosis.
Lots to tell but remember that each case, each stage, each of us are different.
That said feel free to ask your questions and if I can help I will.
Tom 545 here. I have been on Lupron and casadex for 6 weeks and PSA has gone from 358 down to 48 but have 3 metastic tumors so am going on Zytiga w/prednisone
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