just diagnosed; worried and unsure - Advanced Prostate...

Advanced Prostate Cancer

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just diagnosed; worried and unsure

BobinShowLow
BobinShowLow

Healthy and active married man age 79 is Just told I have aggressive prostate cancer; getting info from radiation oncologist which scares me. Not only do they not yet know the extent of cancer (whether contained in the prostate or cells migrating to nearby tissue or perhaps fully metastasized) they are recommending treatments that will turn me into a eunuch. I'm hearing conflicting info on the relationship of testosterone to cancer; also hearing of alternative treatments which are less destructive to tissue AND less deleterious to normal sexual activity. I need to become very much more educated to this issue because I don't want to be totally controlled by indifferent medical practitioners. HELP, please.

31 Replies
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Bob, For now we will hope it is localized, and that you can have local therapy. Do not panic, get the facts, learn all you can. Knowledge is power! In advanced prostate cancer removing testosterone is the proven science, once it has metastisized there is no cure yet, but we can control it and keep it in check for sometimes many years, and live our lives. Myself I will go with proven medical science as opposed to online testimonials. We are all here for you, please keep us posted

Dan

BobinShowLow
BobinShowLow in reply to Dan59

Thanks, Dan for your helpful information. I'll do as you suggest. God bless you.

Bob- You can help us by supplying more details of your diagnosis - biopsy findings? scans? DRE? PSA? PSA pattern? prostate size? symptoms? comorbidities? current continence and potency status? any metastases detected and where? If you can't answer those questions, start your research with yourself.

Thanks, Tall-Allen. I'll do as you suggest. God bless you, too

Dan59 said it all in one short paragraph---only thing you got to do is wait for all initial results---and make sure you have a top notch Medical Oncologist who specializes in Prostate Cancer. I do not like being controlled either---know the feeling---pray every day for myself, and for all the men on this site, and that GOD will Bless someone in finding a cure.

Nalakrats

Thanks, Nalakrats. I'm overwhelmed by the rapid response to my request for help. God bless you, too.

As everyone posts, you will need more information for you to make an educated decision regarding what to do. And for us to help. I know the waiting is agonizing. But let’s hope it is localized.

In the meantime, I’d recommend your read a book by Dr. Patrick Walsh, entitled: Guide to Surviving Prostate Cancer. It is an easy to understand explanation of the various stages of prostate cancer and treatment options. He also clearly explains the side effects and frames up what to expect. Wish I’d found this book much sooner. Make sure you get a current edition - lots of new treatments. You can find it on Amazon- including an e-book version you can download.

Please keep us updated. You are in our prayers!

James

Thanks, James. I'm ordering the book immediately. God bless everyone who has responded to me.

Happy to help. One additional, very helpful resource is the prostate cancer foundation. Their website is: pcf.com

Best of luck with your journey!

James

Take a deep breath, compile all info from test. Bone scan, ct, biopsy, ect. You have time to do this. Go get a second opinion from a accedited cancer center.

Then you can start to make a decision.

Thomas

BobinShowLow
BobinShowLow in reply to Tjc1

Thomas; deep breaths and test result both on their way. Planning on second opinion, perhaps consulting with Phoenix's Mayo Clinic.

To Bobinshowlow I’m scottintucson, welcome to the jungle. Dr P. Singh now at mayo in Scottsdale I attribute my success thus far to this smart and compassionate man , he saved me from the pit. My wife and I both love him . He’s a prostate cancer specialist. To me it sounds like you’ve lived 80 yrs pretty darn healthy.. Thats something to sing about.. sorry that you’re down in the trenches , but there is hope and much to be done in order to live with APC... see Dr Singh .. he knows ....good luck Sir!

I will be blunt. Forget about sex, it is NOT that big of a deal, as compared to being alive. Second, you indeed need to update yourself so that you can make informed decisions about your treatment and options therein. You never stated your psa score, nor if you had a biopsy, what your Gleason score was, both critical, as well as previous psa scores that will enable one to determine the redoubling time. Get what you have to me and I will give you my thoughts. I will be straight with you and not bs you.

Lastly, as I tell all men, make a bucket list and start Working on doing things that you always wanted to do but were holdback from, for whatever reason. Life is for living!

Whimpy-p
Whimpy-p in reply to billyboy3

That a boy ! billyboy3, life is for living! 80;yrs was a pretty good run at sex.. a real,stud.. hard to accept the no T blow for a macho guy. APC isn’t about sex. It’s about life or death. And enjoying time not suffering.

You are right about the bucket list...most men on this site will not be alive in 10 years...IMO the treatments for PCA...radiation (trading the cancer you have now for one in the future)....chemo (weakens the immune system)....ADT (wipes out your T)...all contribute to a shorter lifespan...Dr. Myers said he lost more patients from the side effects of ADT, radiation, and chemo than to PCa.. I believe for most men diagnosed with PCa the best course of action is an RP then supplements to slow down its progression...the problem with chemo and radiation is if they fail, which is usually the case, the cancer comes back far more aggressive

BobinShowLow
BobinShowLow in reply to gusgold

Thanks for your thoughts, gusgold. I'm totally unfamiliar with the new terminology; IMO, PCA, ADT, RP. Can you please interpret this new language for me? I'll appreciate that. Bob

Dan59
Dan59 in reply to BobinShowLow

IMO = In my Opinion, pca= Prostate Cancer, ADT Androgen Deprivation therapy(treatment with testosterone reducing Pharmacueticals) RP Radical Prosectomy(surgery to remove the prostate) It is important to get the best of the best to do the surgery for minimal side effects. More are here. prostatecancerinfolink.net/...

All right, billyboy3. here is what I know so far: PSA's, previously in the 4 to 6 range, hit ten and then jumped to 19. Biopsy indicated Gleasons in the range of 9, 8 and down to 3. I'm scheduled for an MRI this Tues. and a bone scan on Wed. both of which I'll report in this forum. I hear you about the sex, as my wife indicated similar thoughts. I'm taking your advice totally serious. It's comforting that others like you are empathetic. Absent any test results, my radiologist gave me cold statements without any options; perhaps I need to keep looking in that area. Thanks for your thoughts and concern. Bob

You’ll be a scientist before it’s all,over....

Try not to panic. Prostate cancer, even aggressive prostate cancer, is never an emergency. You have some tough, life-altering decisions ahead of you. Take the time to educate yourself and be ready to make a choice that you can live with and won't regret.

Get second and third opinions! I can't stress this enough. Urologists like to cut, radiation oncologists like to burn (with radiation), and medical oncologists like to poison (Lupron/castration, chemo). See at least one from each of these disciplines before you make any decisions.

You might consider seeing some "alternative" doctors (I call them competitive medicine) for a different perspective. The competitive medicine docs I respect combine both traditional and non-traditional treatments, and tend to be much more compassionate and concerned about quality of life and your whole life rather than just your prostate gland.

Get a pelvic MRI. Personally I avoid radiation from CT scans and bone scans, but that's another topic and many don't agree with me. But there is definitely no harm from a pelvic MRI and it will tell you if the cancer has spread beyond the prostate.

I prefer whole-body MRIs to CT/PET aka bone scans as they are more sensitive (more likely to detect the cancer), more specific (less likely to call something a cancer that isn't), and have zero ionizing radiation. Cancers are much more sensitive to ionizing radiation than healthy cells, but the risks of exposing cancer patients to repeated large doses of radiation are uniformly ignored.

The whole body MRI or bone scan find distant metastases, those outside of the pelvic region. You might have to pay for this yourself, but they cost less than $700 with the radiologist's report (from a doctor who will talk to you - many radiologists won't) delivered to you in a day or two instead of weeks. PM me if you want details.

Good luck! There is a lot to learn, but prostate cancer is slow. The quote that "Prostate cancer is never an emergency" is from a prostate cancer specialist being interviewed by Dr. Snuffy Meyer, a well-known prostate cancer survivor and physician, in his newsletter Prostapedia. Both Dr. Meyer and the specialist agreed that too many men are rushed into decisions they later regret.

Don't be that guy.

Whimpy-p
Whimpy-p in reply to FCoffey

I like the rest of what you say in principal . But you can never say never. I started off in reverse . PC was an emergency at my advanced stage. Pc tumors shut off my urethra and I went into kidney failure. That’s emergency.. or am I wrong?

FCoffey
FCoffey in reply to Whimpy-p

Kidney failure is certainly an emergency. But I suspect they didn't treat your kidney failure with RP, radiation, chemo, seeds, etc. Resolving the kidney failure is extremely urgent, but deciding which treatment(s) to use for the underlying cancer deserves careful consideration, and that takes some time.

Whimpy-p
Whimpy-p in reply to FCoffey

Yes sir, I agree. I emerged after a week in the ICU to get my dx and firmagon shot. Friday the 13th 2015. Radiation and adt shrunk PC tumors to the point of removal of all tubes and foleys. That took 11/2 yrs . I did have the specialist that made the right moves for me.I was given a 50/ 50 shot of surviving the initial treatment . So It s all kind of gravy for me now. I feel lucky to be alive and thankful .If one catches PC before it’s APC and aggressive it’s not a state of emergency.From someone that has been in that state with PC , I would not personally recommend anything (But ) an aggressive treatment plan and total healthy lifestyle change. APC is a killer with no sense of remorse ,a true psosiopath . That’s my opinion of PC .

Bob,

Sorry to hear about your diagnosis, and (easier said than done) try to get out of the panic mode that all of us get when we are first diagnosed. I know I did. I was already Stage 4 at diagnosis in 2015, so my cancer is incurable and my treatment options are limited. As trite as the maxim sometimes sounds, knowledge really is power. Study up as much as you can, and get to a good medical oncologist (MO) who specializes in prostate cancer.

Once you have all of your test and imaging results, you and your MO will be in a better position to formulate a treatment plan.

I hate to say it, but if you are concerned about the sexual side effects of the disease and treatments, you need to prepare yourself for the possibility of a “new reality.” It’s not fun, as many of us in here can attest to, but in the scope of things, it’s a small price to pay for adding years onto your lifespan, with an otherwise good quality of life.

I echo what already said. I pray everyday for myself and for all of the other men on this site. I thank God for every day I am given, and ask him to provide a cure for this insidious disease.

In the past few years, many advances have been made in the knowledge of how prostate cancer works, the pathways it follows, how it has the ability to mutate and become castrate resistant, and how to fight it. New drugs and treatment protocols have been approved and are in the works. As Dan59 said, we can keep it in check for many years. Hopefully, the lifetimes of all of us in this group, they will find the “magic bullet” that will eliminate castrate resistance and make PCa a chronic disease.

Mark

Litlerny; I thank you for your thoughts, and will pray for you and all who have taken the time to counsel me. I am so glad to have found this blogsite. God bless you. Bob

Breath in that fresh mountain air....stay a2ay from that fire... keep your faith and you will do what you have to do . Just smell the roses as much as possible. Ain’t no guarentee s for none of us. Breath in breath out... being otherwise healthy and of sound mind you can fare as well as anyone. We are all caught in the same boat bob . Keep paddling until we reach the falls.....

Whimpy-p
Whimpy-p in reply to Whimpy-p

Niagra falls awaits us all ! No getting out of the boat. No paddling up stream . Believe me , I’ve tried, lean back take in the sites along the way and love life. It’s a short trip for some for others they live for decades with the pleasurable choice of treatments that confront you. Stress , worry, anger, it’s all part of the first blast . Hopefully with effort and luck you’ll have more days under the sun than if you do nothing at all. Big decisions bob that we’ve all had to make. Good luck and a lot of prayers...

Lulu700 and all who have sent me messages to date: THANK YOU for the information and counseling. I have made diligent efforts to absorb all that has come to me from this website since I first posted, and I am settling down to the tasks at hand. Since the first blast announcing my aggressive cancer, I've had my Lupron shot and daily dose of Bicaludimide. Bone scan, CT scan and additional blood work looks promising so far, but Dr. still wants an MRI for suspicious spot near my spine. Lots of procedure and research yet to be done before I choose my optimal treatment. It's my hope that I can soon offer to others the sage advice and psychological assurances that I'm currently receiving.

Welcome to the club Bob!! After the brutal reality dims a bit , then you can take a deep breath. Until then its a whirlwind. Fight to stay on your feet with a positive attitude. You’ ll have some hell to pay but then the clouds should break .At that point and everyday enjoy the good that does exist.Block out the bad..Live long and do whatever it takes to make treatments more tolerable. See-Singh, I would follow his advice.

Thank you...

Don’t worry be happy!! Easy to say, nobody can avoid worry .We must work daily on our own happiness . I try not to panick when I look in the mirror everyday.I keep the lights dim .Vanity and ego are gone.

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