Newbe, June 19th 2021: Uncertain Future... - Advanced Prostate...

Advanced Prostate Cancer

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Newbe, June 19th 2021

Djorko profile image

Uncertain Future, just diagnosed June 19th 2021.

65 Replies

What do you know at this time---we are here to help!

Nalakrats

Djorko profile image
Djorko in reply to Nalakrats

PSA is 40, MRI is showing that it's in the bone. They didn't bone scan the CT I think it's called and I'm yet to get the results. They want to do something to shrink the lymph nodes?????

Lulu700 profile image
Lulu700 in reply to Djorko

Probably rt . Adt can shrink the nodes also .

This may help you understand your current options - there are many.

prostatecancer.news/2017/06...

Most recently, this option emerged:

prostatecancer.news/2021/05...

Lots to discuss with your oncologist.

Just a note, there's a PCa support in San Diego that meets 3rd Saturday of the month (virtually during Covid) that may be useful in learning more about your options.

ipcsg.org/

Djorko profile image
Djorko in reply to timotur

Thank you I'm at the VA in la Jolla.

You found the right place. Welcome.

We're all sort-of in the same boat. More specifics please, so we can help.

Djorko profile image
Djorko in reply to TwilightZone

PSA is 40 they did an MRI it shows it's in the bone and they want it and they did a bone scan the CT scan haven't seen the results yet and they want to shrink the lymph nodes. This is all new to me not sure even what I'm talking about.

Lulu700 profile image
Lulu700 in reply to Djorko

Adt , Rt or chemo all can shrink those nodes . Follow the pros. Live healthy to counteract the poisons we do.

By more specifics we mean your Gleason score, your PSA history, results of any scans etc etc.

Schwah

Djorko profile image
Djorko in reply to Schwah

No Gleason score yet 40 PSA and I haven't heard the result of the bone scan. I hate talking about this.

Did you get a bone scan? How many metastases were detected?

Djorko profile image
Djorko in reply to GP24

Will be getting the results of the bone scan soon

Tell us more

Djorko profile image
Djorko in reply to Bodysculpture

40 PSA bone scan have not heard the results yet they want to shrink the lymph nodes. And start treatments???? I'm more concerned about my wife.

Djorko profile image
Djorko in reply to Bodysculpture

PSAs 40 I had a bone scan have not had the results they want to do treatments to shrink the lymph nodes. That's all I know so far I'm at the VA in la Jolla California.

Djorko profile image
Djorko in reply to Bodysculpture

I think the hardest part about this so far is the uncertainty, doctors are so vague and I understand why. you can't plan for the future so it throws you in the moment which actually has been a pretty good feeling I'm here and now for the first time. LOL

treedown profile image
treedown in reply to Djorko

I know, but the beginning is a process and it takes time. Try to find calm in this storm. Once all the intial tests are done they will have a better idea of what your specific prostate cancer looks like. This will take time. I suspect the term shrink the lymph nodes mean they want to start you on ADT right away. Since it's in your bones one drug to stop the flare of pain in your bone the main drug might create. I read Surviving Prostate Cancer 2018 edit and it helped a bit. This forum even more so but there's a lot of opinion here and some of us know less than others though most know about their own disease. I to care most about my family and the whole experience has put many things in perspective. As you learn more the forum will fill the gaps in what your doctors leave open. I know it's hard but try to find joy in between the appts, as this goes on they will be farther apart as they watch how each treatment works. Good luck as it seems to be what we all need most IMO.

Djorko profile image
Djorko in reply to treedown

All of you have been appreciated thank you so much and keep in touch.

Lulu700 profile image
Lulu700 in reply to Djorko

It’s a day to

TMI overload with APC info. Whatever you do, take time out of each day “ not “ to think about this. Anxiety can be brutal. Not good to worry on the heart. You can do better than doctors will tell you .

Lulu700 profile image
Lulu700 in reply to treedown

The beginnings are pure hell 😩

treedown profile image
treedown in reply to Lulu700

I agree, all the uncertainty.

Lulu700 profile image
Lulu700 in reply to treedown

Torture

Lulu700 profile image
Lulu700 in reply to Djorko

Not knowing sucks brother. You’ll know it all very soon. Then it’s no looking back. Hit the pc hard and hope it slinks back into its funky dark hole! Love yourself while you fight this for your life. Some say pc is slow growing and not as bad as others . Baloney! APC gone wild is a painful killer . We don’t let it go . Stomp it down and love those around you .

Djorko profile image
Djorko in reply to Lulu700

I feel like I'm up and down and up and down all day, sometimes I feel like I don't have long, and then I feel really really good and I'm ready to take this on for the next 5 years or more. The uncertainty is real mental masturbation.

Lulu700 profile image
Lulu700 in reply to Djorko

A dx is a rollercoaster . Not knowing is torture. Soon you’ll know. A year from now you’ll know more than you ever thought possible. Some men seem to glide through without major side effects . You’ll need to consciously practice Daily happiness every day once the Testosterone is cut . No one has all of the answers. But there is someone that has been in or is in your same shoes. We can relate. It boils down to how much you want to live. We all suffer . Our reasons to live are in the forefront. I didn’t find this cite until over 3 yrs in. I had nobody to talk to or ask questions. Doctor visit always seem

So rushed . We can tell you things that the dr won’t. Always self advocate and heal yourself anyway you feel fit.

Djorko profile image
Djorko in reply to Lulu700

I've been extremely tired I'm sleeping 8 and 10 hours and I wake up and I'm ready for bed. I'm feeling more lower back pain, and my left hip is starting to hurt just like the right hip which is where the cancer is spreading. When I cleared my nose this morning there's a very strong taste of blood. These are problems I've never had before. Not reading into it. I'm hopeful when I read all of your comments and they are appreciated but I feel like s***

Lulu700 profile image
Lulu700 in reply to Djorko

Fatigue is common. T was our main driver our entire life’s. No t is it’s own syndrome. I had chronic fatigue syndrome for those first years . Sam-E helped me out of lethargy . Just don’t sleep more than you wake. I Felt like rip van win like back then. Also suicidal ideation due to my weakened health . That’s all over now. It’s a common thought. We grasp on to our reasons to be here. We must have one..No sugar coating it. I still feel like shit six years later. But I’m still here. Many perished. We must deduce if life is worth suffering? It’s about how much can we endure? I’ve had every type of inexplicable pains . I don’t have any signs of pc in me. That’s the hope brother.we live with the rest of the pain side effects and bullshit. Take fine care of yourself . We fight all the way. But all we need to do is quit fighting and the APC will finish its goal . It a fight of misery and drudgery . You need someone to get you up and walking everyday in which you don’t feel like it. My gorgeous wife cracks the whip on me with diet and to get moving. If I didn’t have her I would not have made it through the hard times or day to day . I got a puppy on dx. Best thing ever . Love yourself or there in no point in suffering . We have some brave men that survived for decades beyond a worse dx.. put that pc to sleep. Then you’ll make a new path forward. Hang in there dude.. if I could , so can you ✌️😂

Djorko profile image
Djorko in reply to Lulu700

Thank you my brother good good word. I think that at gut level I'm ready to fight. Mymy wife is going to be an influence as well a big influence it's nice to have a great wife isn't it? Thank thank you so much. This support group has been a real blessing.

Lulu700 profile image
Lulu700 in reply to Djorko

If you are sleeping 8-10 hours you’re ahead of the pac. Many cant sleep or take sleep aids. If you don’t work out your bones can go by by like mine did . Drink green tea even some coffee is good for us. I went with a naturalpathic oncologist plan for diet and nutrition. Plant based. Many say diet doesn’t matter . That is bs. Food is medicine.

Lulu700 profile image
Lulu700 in reply to Djorko

Welcome to the club . There are many of us . You ain’t alone in this .

You came to the right place. You will find support and so much knowledge in this group.

Djorko profile image
Djorko in reply to Ignace

The support group feels great. PSA is 40 had a bone scan no results yet. I know they want to shrink the lymph nodes the MRI shows cancer in the bones. Appreciate you. I no longer feel alone. More concerned about my wife. I hate that it happened to her.

Sam1962 profile image
Sam1962 in reply to Djorko

When my husband was diagnosed and we were both afraid and confused, I tried to learn as much as possible about his disease and stage of cancer and although I was trying to protect him I realized I could not research our treatment options (and make decisions) alone. I required his participation so I decided to be direct and told him I needed his help. At first his fear made him want to hide from it; I think he felt that if he didn’t think about it and we didn’t talk about it, it would go away. I was reading books in secret afraid to upset him. It was overwhelming. It was much better and critical to address the elephant in the room. I was afraid to talk to him directly but I did it and it was the best thing to do for both of us.

You need your wife to be strong for you now; she can be weak another time; plain and simple. This is not about her. You cannot afford to worry about her at this moment in time. I know it’s easier said then done, but you will have time to worry about her later. I am sure that if your wife was given a choice to never have met you at all verses having you for even a short time she would choose the latter.

To bring my husband into the equation, I told him we both needed to put our minds together to fight the disease as a team (my husband is a smart man and I needed his brain) and we made a list of questions for the urologist. A list of questions is important because it’s hard to remember your questions when you are trying to listen to the doctors. I try and send my questions in advance and always bring a paper copy. Make sure you make them answer your questions. The most important advice I was given was that it was not important to “like” your doctor and not to worry about their feelings and they are not here to be “friends”. You need an honest relationship where you know the benefit / risk ratio and can make informed treatment decisions. Good luck and stay strong. I suspect your wife is stronger then you think.

Djorko profile image
Djorko in reply to Sam1962

I had a reply and I pushed the button and I don't know what happened to it. LOL. So here I go, what you said was beautiful I appreciate the time and insight my wife and I were meeting with the doctor on Tuesday I hate putting my life in the hands of doctors my history is that you could ask for doctors the same question and get four different answers. The vagueness of time is stressful you don't know if it's 6 months 6 days 6 years. .... Who knows?

Sam1962 profile image
Sam1962 in reply to Djorko

Yes, that is the frightening aspect of this disease. I can tell you that my husband was given two years to live four years ago and now they say he has 7+. California has all of the current treatments and state of the art equipment so you are in a good place for treatment. There are new promising cancer treatments emerging all the time. I don’t know what they are for bone cancer but they are emerging now and treatment is very likely to include chemotherapy. We were afraid of chemotherapy but we developed a plan to make it as emotionally and psychologically painless as possible. So, I brought a small snack for him to eat before treatment session (usually cheese and crackers, a small steak sandwich Post treatment session); he wore sunglasses and put his Headphones on with nice music and reclined in the chair with a blanket. The six sessions went well. He continued to work the entire time which involved international travel. I went with him to make sure I knew the cancer hospitals in the city we were in in the event of an emergency. It all worked out well. I also found amazing solid black men’s underwear that are fashionable and padded. They look like Prada made them. My husband is a man of fashion and I knew it would be hard for him to wear some of the items suggested for side effects of treatment. The other advice I have is to decide to live each moment to the fullest regardless of how tired or depressed you feel. This is still your life and you must continue to live it to the fullest that you can without letting fear invade you. I hope my experience helps you. I try hard to only discuss the disease every three months when he’s tested; and to create a “cancer free” home for him so he can go on vacation as much as possible from his cancer. If you don’t make a conscious effort to do that it will take over your life.

Lulu700 profile image
Lulu700 in reply to Sam1962

That doctor didn’t take into mind the power of the will to live . Love it.🙏

Djorko profile image
Djorko in reply to Lulu700

Amen. The support group has instilled in me hope. Thank you thank you all so much

Sam1962 profile image
Sam1962 in reply to Lulu700

Agreed. 👍

Lulu700 profile image
Lulu700 in reply to Djorko

That happens?

Lulu700 profile image
Lulu700 in reply to Sam1962

A dx is horror for all.. I’m happy he has you❤️

Welcome, tell us a little about yourself.

Welcome!

Djorko profile image
Djorko in reply to Lasered

Thanks.

Welcome. A number of participants here are wives. I do the research and reading for my husband (and me). Invite your wife to join the group as well.

Glad to have you join our group (a group no ones wants to be apart of, but grateful it’s here!)

All of us were in the same boat as you when our journeys began. Take a deep breath. And start reading, ask your oncologist questions, and also ask questions here.

I’d recommend you start with a couple of actions. First, read this patient guide provided by the prostate cancer foundation. It’s free and very informative. pcf.org/guide/prostate-canc...

And if you update your profile here with your case history it will help us give you any advice you are seeking. We are certainly not doctors, but do have the benefit of real life experience. Sounds like you need to see your doctor to get more diagnosis details. In the patient guide, it suggests questions you may want to ask your doctor.

Everyone’s prostate cancer outlook is different. There are men here that have been battling PCa for 20+ years. You have to approach it from the start like a chronic disease. Personally, I’ve been on this ‘crazy’ journey for over 6-years. PSA 227, spinal metastasis. Had chemo, radiation, a prostatectomy, and 5-years of hormone therapy. And had to get a pacemaker. But I’ve battled it into remission and have been off hormone therapy for 18-months and still have an undetectable PSA.

My point is take one day at a time. When I was diagnosed, I didn’t even really know what a prostate was other than seeing “enlarged prostate” commercials on TV. You will learn.

We will help.

Best wishes on your journey as “prostate warrior”!

James

PS - you will hear lots of acronyms here, like ADT. There is a glossary of terms and abbreviations posted to the bottom of the site. This helps a ton to make sure you understand what people are saying.

Djorko profile image
Djorko in reply to JamesAtlanta

Thank you and I will follow the information you had suggested that I can see online. It looks like this is going to be the mission for the rest of my life. since I was told the bad news I think of nothing else. I'm going to do whatever it takes. The support group has changed everything. It's giving me confidence and I feel like there is direction in all this chaos.

Shooter1 profile image
Shooter1 in reply to Djorko

"Think of nothing else".. Read that statement and realized that now, even with recurrence, I can go days now without thinking about it... Way different than at the onset. Time will pass and you will learn to live with aPca. Just make sure you keep up with your calendar so you don't miss any appt.

One thing you should know is that compared to say cancers like lung cancer, liver cancer, pancreatic cancer and many others, prostate cancer generally allows you to live much longer. But the science is moving fast and options many. Therefore being your own advocate and being willing to fight for yourself is critical to both how long you will live and your QOL (quality of life) going forward. Start now by eating healthier. Losing weight if you’re over weight, and working out regularly especially with resistance training (weights). Find a local gym and a trainer to get you started with proper technique. If you choose to face your fears ( hopefully with your wife by your side) and learn as much as you can about this disease, your odds of living a long time, 10 years or more, will improve dramatically. Your first step finding this site, was a great one. So much experience and knowledge here that it will amaze you. I have a great dr but I’ve come to him with things I’ve learned here and had him say , “hmm, I did not see that study yet. Makes sense. Let’s try that”.

Draw on something you were good at (sports, music, art, science, cars etc) and remember how hard work allowed you to succeed. One thing I learned here is that we are all dying the day we are born. We just don’t know when. We all know people who died suddenly in car accidents or heart attacks etc. You on the other hand are fortunate to have many more years. So Give yourself another few days to be scared and feel sorry for yourself, Then start learning to enjoy every day, appreciate your life and get down to the hard work of living with prostate cancer.

A first key will be getting your bone scan results. Post them here and the guys will help you interpret them. If you only have 3 or for bone mets vs numerous ones, your treatment plan may vary. We are here for you emotionally and advise wise but time to get to work.

Schwah

Djorko profile image
Djorko in reply to Schwah

Excellent thank you, and I will post the results of my bone scan. I haven't felt sorry for myself. As I said it's more of a concern about my wife. I remember the first time we talked about it she said; we didn't plan for this. It's funny to think about now. But I believe it's not the end game yet, I'm not knocking over the king.

Schwah profile image
Schwah in reply to Djorko

Good for you. Think About what you would do if your wife just got diagnosed with breast cancer. You’d tell her you were there for her, not to worry about you and that you’d help her fight this. Don’t expect less from her. Do you think you can get your wife to help?

Schwah

Djorko profile image
Djorko in reply to Schwah

She will do whatever it takes

Lulu700 profile image
Lulu700 in reply to Djorko

Mine too. We are are lucky .

Schwah profile image
Schwah in reply to Djorko

That’s what I figured. You have to admit you feel a little bit better already having found this site and being able to vent and talk to many men and women in the exact same position as you guys?

Schwah

Lulu700 profile image
Lulu700 in reply to Djorko

Hey Djorko! She’s right . Nobody planned for this . Yet here we are. I’m more than six years past a stage #4 dx. Some guys have survived got decades after being told that they’d live for months. Please stay away from any negative thinkers. If the doc gives you bad stats they are just guesses . Your strength stamina and maleness will be diminished . No testosterone is the first goal . This is a major adjustment for most Good job finding this cite early on. Now you will know instead of guessing .. Take care Dear Sir! ✌️

Djorko profile image
Djorko in reply to Lulu700

You're kind words are appreciated.

Welcome to the club no one wants to join. You must be feeling pretty overwhelmed by now, so at the risk of overloading you, here are a few additional general thoughts that may help you.

There’s so much to think about right now, and so much anxiety. For starters, disregard 5 year and other survival statistics you see on the internet. Most of them are outdated, not considering the latest advancements, and more importantly, everyone is different and responds differently. Nobody’s dying next week or year. Even with stage 4 metastatic cancer people are talking about durable remissions, and in some cases - cure. But figuring that out is not possible or necessary right now.

So here’s my practical non-medical guide on how to get through the next month:

1. Start reading and studying. Knowledge is power - and comforting. You’ve seen some useful links in earlier responses. Us Too Intl. Has an easy to use list of free, plain language publications that will answer most questions. (ustoo.org)

2. Take your wife to all consultations and initial treatments. Have her bring a small notebook, write down questions in advance and make notes of what doctor says. Ask lots of questions.

3. Follow your doctor’s recommendation for that initial appointment with a medical oncologist, but already be thinking about that essential second opinion. Mayo Clinic and MD Anderson are at the top of most lists, but there are other centers of excellence that are great, typically teaching hospitals associated with universities.

4. Insist on a medical oncologist who specializes in prostate cancer. One size does not fit all.

5. Learn about the concept of “standard of care.” Treatments are evolving so rapidly that the standard of care typically lags behind the “state of the art,” so find out if your doctors are leaders or followers.

6. This is a highly personal decision, but think about opting for the most aggressive approaches out there. There are risks, but the benefits are huge, especially if you are otherwise in good health. There are different names for this approach, but my Urologist used “kitchen sink,” meaning throw everything at the disease hard and early. As more data becomes available, this approach is gaining scientific acceptance.

7. Dont be embarrassed and secretive. Feeling the warmth of support and love from people who care about you is incredibly therapeutic, but those people have to know. The ones who matter will all be there for you, just like we are virtually all here on this site for each other.

8. While we as members agree on the value of exercise and regular physical activity, we bicker about diet and supplements. Oncologists mostly ignore this subject, so do your own research. Regardless, a heart healthy diet is generally accepted as a good thing.

9. Last and most important, smile, love, and live every day to the fullest.

Djorko profile image
Djorko in reply to Canoehead

Thanks so much for your immediate replies all of you are appreciated and I do feel the love and serious concern and the want to help. Mucho gracias

Lulu700 profile image
Lulu700 in reply to Canoehead

👏🏼👏🏼

nonm profile image
nonm in reply to Canoehead

Good advise !

Welcome Djorko. You’re in the gym? Keep that up. Keep you heart healthy .

Welcome. I am the wife of hubby diagnosed 2 years ago. It’s thoughtful that you’ve concern for your wife A wise urologist told us this is a couples disease. I was the first one to need information and sought forums, books, personal experience from the many friends we know with the diagnosis. I found men rarely talk about their prostate cancer but when I began my information search, it was quite common among our friends of similar age. (71 at diagnosis) A first symptom was urinary retention while we were camping out in the boonies. A trip to an ER via ambulance started the process. And it is a process. You have been given excellent advice so far on this Forum. I noted your are being treated at a VA hospital.

Are you by chance a Vietnam Nam veteran ? My husband was in country during the Agent Orange era. The VA recognizes prostate cancer as a presumptive result of agent orange. One of the positive things during his treatment was his designation of 100% disability from The VA with compensation. That sure helped. Application for benefits through VA was also a process. Keep all your records. Keep track of Dr visits. Keep track of your symptoms, having that info at the ready will be helpful.

I’m betting your diagnosis will become a time to reset priorities and that you’ll take better care of yourself than you ever have. Good luck on the journey. The first few weeks of not knowing and waiting for results were the worst!

Djorko profile image
Djorko in reply to Snoopboop

I went into the army in 1971 never went to Vietnam. my wife and I are both one of those that do take care of her so I was pretty well I was a runner for 17 years until I blew my knee out and we take vitamins and supplements and eat right best we can pretty regular, this whole episode we're both very surprised. Just had a great conversation with my wife who we were both upset in the beginning I have yet to cry but my wife did cry a couple days in a row and today's conversation was good. Real good. she had basically said what you said there it's a couple of deal and she just said Robert listen we love each other very much and today you enjoy your life you feel good today enjoy it if we got six months a year five years enjoy each day don't let this thing take you out mentally. she's the best thing that ever happened to me my favorite person in the first woman I've ever loved. It's crazy love! Smile!

Anxiety is a major factor for many a fellow. Many take Lexi pro or other mood drugs or sleep aids. I take homemade high thc canibis oil and I smoke the shit out of the strongest neiva I can. Wasn’t a pot head before pc. Now call me Bob Marley style . I would not do well with out the weed . 🍀I’d probably on pharma too. 🍀

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