It's been 9 months of tests and waiting, but finally on Sept. 17, 2018 I was diagnosed by my urologist with aggressive prostate cancer.
I'm 45 years old with a Gleason of 4+4 and a last known PSA of 8.2 (taken back in March.) Had nuke med bone scan and CT's on Sept. 25th showing suspicious spots on rib cage, so went for additional CT on Sept. 28. My urologist says it's up to me to decide what treatment I want, but he really hasn't discussed options with me. So, instead of messing around any longer, I've asked to go Mayo Clinic (Rochester, MN) for consultation and treatment, which is scheduled for Oct. 22nd.
With that said, I've got 3 weeks from tomorrow to figure out as much as I can on the pro's and con's of treatment options. I'm glad I found this Community and have been reading as many posts as possible on treatments and side effects. You guys are troopers and I can't imagine what you and your families have been through...I guess I'll find out though.
I'm over the shock of having cancer, I now just want the crap out of my body!
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Jeff_H
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I am just one voice, most know far more than me. My choice was DaVinci surgery and Lupron injections. Everybody here can give you great advice, in the end you will pick what you are most comfortable with.
I'm sorry to tell you that if those are metastases on your ribs, you cannot get it out of your body, but you can manage the disease for, hopefully, a long time. Here are treatment options and clinical trials for men in your situation:
Dr. Jeffrey Karnes, Mayo in Rochester I highly recommend him. Ask for Urology department because they will be more aggressive with the treatment. If you need a place to stay I can help you with that too, just message me.
Strap yourself in because your about to get busy and you did yourself a great service choosing Mayo. Keep us posted.
Thanks for the recommendation and info! I've always wanted to visit Mayo...didn't expect it to be in this capacity though. I have a friend that saw Dr. Karnes and I would like to see him also, but my urologist has me scheduled with Matthew Tollefson. I would assume as equally qualified?
I have heard of him and I'm sure he is good otherwise he wouldn't be there. Like Karnes he is also around our age and I liked that. I seemed to relate with him very well. I'm sure they are going to be aggressive.
As far as the mets don't give up, even if you do have bone mets. You don't know what can happen with aggressive therapy. If you don't have many you have a chance. You gotta get that in your head. Gourd_dancer is a frequent poster here and check out what he accomplished having bone mets. Early in my treatment when someone would tell me it wasn't possible I always thought of him. Be your own statistic.
You have several things in your favor going into this. Your young, strong, hopefully only a few mets and heading to a treatment center that will give it everything they have. Now is the time to knock this shit back while your cancer is sensitive and you are strong. Stay focused and learn as much as you can.
What you have got, sucks, but, what you also have are thousands (yes) of brothers here..,we will do our best to answer your questions and share our commonality. One practical thing: use the search box in the upper right to find replies, reports and explanations that have already been posted.
Great that you are going to Mayo. Make sure to bring all of your reports, but also these places usually like to have the scans themselves. You should be able to get these by requesting disks of all of your scans from the place you had them done.
You also need to get an *oncologist* to work with. You are beyond the urologist now. They are good for early prostate cancer but not advanced and complex PCa. Urologist at Mayo is fine -- that's a different situation, with urologists who specialize in Cancer care. But at home, it seems like the urologist you have is already not very helpful, and it probably is beyond his scope.
The good news (as you might glean from posts here) is that there are many possible treatments ahead of you, and these are now standard of care treatments (= covered by insurance). You are a Gleason 8, which is better than 9 or 10! and you don't really know about those spots yet. You will likely need some more specific scans and testing.
And you don't have to know everything when you on Oct. 22. Good to get informed but they are not going to ask you decide then and there what you want to do. Really try to bring someone with you to take notes, and if you have notes ahead of time, write down your questions (all of them), and this person can help make sure everything is covered.
You probably should get on Lupron and/or bicalutamide soon (or some other early treatment) - things have changed even since 4 years ago when my husband started treatment. He is still on Lupron, even though he's now been through more advanced treatments. And Just FYI -- he was diagnosed in March 2014 and today he is riding a bicycle century.
You are doing well to be informed. I suggest getting a book that you keep a constant log of every appointment and your data (ex: PSA, weight) and write down questions before each visit and make notes at each visit. It really helps to have this in the long view, because you can go back and trace things.
Fortunately prostate cancer is making a lot of advances, and you have a lot of options ahead of you. A lot to think about at every junction. Again - your decision to go to Mayo sooner rather than later is excellent.
Best wishes for this visit and check in here with your new friends!
9 months of tests and waiting??? It doesn't take that long to diagnose prostate cancer. I don't know who you were seeing but glad you chose to switch to the Mayo clinic. If they determine you need to have your prostate removed make sure you opt for the DaVinci.
With the treatments available today (and more in the pipeline) they can treat you successfully for a long time. But you need to understand that medicines alone will not treat your cancer, you need the love of family, friends, and the compassion of your doctors and staff along with God's Grace and you can live a good life. You will have good days and bad but all-in-all you will be good.
Depending upon what stage your cancer is, the doctors at Mayo know what treatments to apply and if any of the clinical trial treatments may help you. God Bless you and keep a positive attitude, cancer loves people with "woe-is-me" and depressed attitudes.
Can I ask about the 9 months of waiting? I had an MRI, TRUS and am waiting for biopsy results, which should be the last piece of the puzzle. All of the above took a few weeks. Just wondering if I'm missing something. All the best to you.
Hi Jeff, your diagnosis sounds very close to what my husband was diagnosed with in 2016. At the time, there was a small spot on the ribs and in the pelvic area. The doctor at that time told us he will just need a 3 monthly hormone injection called Suprefact (name in South Africa). I asked about chemo or radiation for the bone spots and he said it was not necessary. After 18 months the hormone injections no longer worked. He then had metsases to the spine and head and the tumour in the prostate grew to 5 cm. He has had 5 cycles of Docetaxel which did nothing and there is more spread. We have changed Oncologists now and they started Cabazitaxel on Friday. I do not want to scare you but PLEASE do not let the doctors to "watch and wait". Rather try and start treatment early. Also three different Urologists refused to do a prostatectomy because of the metsases and also because of the side effects that the surgery will have on the nerves and vesicles in the lower male regions. I am twenty years younger than my husband and the last Urologist said my husband will have better quality of life if he does not have the radical prostatectomy. It is a rather frightening journey but one must be positive and stay strong. Good luck !
The truth is always best. I’m sorry for your husbands hard fight. I pray for some turnaround . That you love each other completely . That you keep you body and spirt strong. I wish the same for my wife now and especially if things turn south for me.. God bless you both!
Thank you for the information and support!!...and NO, I'm not going to watch and wait any longer. I'm done with my (expletive) urologist. Onwards to bigger and better!
everything u said here means at this time your cancer is small which means with the right tx good chance of getting rid of it. have the surgery and be done and forget it
Hi Jeff...The fact that it took your urologist 9 months to make your diagnosis is very troubling. Also, given the results of your tests, if he didn’t discuss treatment options with you, he is worthless to you and all of his patients.
I’m so glad to hear you have hooked up with the Mayo in Rochester. It is one of the best cancer facilities in the country. With bone mets, you need a medical oncologist (MO) and possibly a radiation oncologist. All of them at the Mayo are top shelf cancer doctors. Their support staff is great, from the PA’s down to the phlebotomists and schedulers, and they will treat your cancer both aggressively and appropriately. Based on my experience with the Mayo Clinic in Jax over the past 3+ years, I expect you will also be given considerate, compassionate, and timely care there.
As Tall_Allen mentioned, if your PCa has already metastasized to your ribs, it is (unfortunately) not curable. But, it is treatable with very good prospects for long term success and a (relatively speaking) very good quality of life. Now that you are over the initial shock of your diagnosis it’s time to go to work.
Before your 10/22 visit, go to the Mayo Clinic Patient Portal (Google it or download the app), and set up your account. It is an invaluable tool for you from this point on. Also, gather all the medical records and information you have, including all of your treatment records/reports/physician notes, biopsy results, and all Lab reports. Get copies of the actual scans (X-Ray, CT, PET) not just the summary reports. Either send them to the Mayo prior to your first visit or take them with you. They will be very helpful in establishing a starting point for your new oncologist. Have a list of questions prepared to discuss with your MO.
What to expect? Your Mayo oncologist may want to re-do some of your tests and scans. However, instead of taking 9 months for results you will get most of them the same day, or within 2 days—-tops. On my visits I have labs and (when needed) scans done in the morning. They are already available to me and my MO by the time of my afternoon visit with him. He may (or may not) refer you to a radiation oncologist to assess, and maybe zap with SBRT, your rib hot spots. You will likely be started on ADT with Lupron, Eligard or other LHRH agonist, and bicalutamide (Casodex) or other LHRH antagonist. And, depending on your situation, he may prescribe upfront chemo with docetaxel, or abiraterone (Zytiga) + prednisone.
Take a deep breath, get ready to do battle, and (above all) STAY POSITIVE! Best wishes to you as you start your journey.
Thank you so much for the excellent, and detailed, advice! I am absolutely shocked at the information that you, and others here, can convey to complete strangers!
I agree with your opinion of my previous urologist (dumped him for good today after getting all my files/records) and so now I have a check by your paragraphs 1-4 and anxious to get to work on #5 at Mayo! I've always heard such great things about the care provided....heck, it's gotta be good if critically acclaimed Ken Burns produces a documentary on it!!
Glad to hear it Jeff. 😎 I know that starting this process is confusing and more than a little scary. You have a lot of people in here who are with you every step of the way. Speaking of which, take the advice you get in here with a grain of salt. The situation for each of us is unique. None of us, to my knowledge, is a medical practitioner, and we can only relate our experiences and points of view (and we don’t always agree). But we all genuinely want to help each other live longer and better. Also, there are a gazillion You Tube videos, articles, etc. out there. Many of them are pure crap. Even some of the valid ones are out of date. Do your own reasearch and arrive at your own conclusions. You, obviously, have already done a lot of that, which is a great start. Well done! You probably have already been there, but if not, check out some of Dr. Kwon’s You Tube videos. Very impressive guy, and great choice for someone to be your point man in your treatment. Have a great day. Keep the faith, my man. You’ll be around for a long, long time.
Look at hystology...in pathology report from biopsy.....look for"ductal"....your sounds like it might have atleast some as it is low psa...high gleason...if so...get on lupron or similiar asap.....i speak from experience....brother in arms.....
I am 73 years old diagnosed in 2007 and had 42 radiations. In 2011 it metastasized so I had 30 more radiations and started Lupron (Eligard is the generic). A shot every 3 months for 6 and 1/2 years. I had a few side effects but my life continued, In June this year they stopped Lupron and at this time I am cancer free. So I will be watchful waiting to see if my PSA goes up again. I wish you the best of luck, and I am glad you will have excellent doctors.
My Canadian Oncologist said much the same “your choice, Chemotherapy or Aberitone first”. My feeling was your the expert! But afterwards realized most Oncologists don’t want to commit themselves for fear of law suits, especially in the USA, if the situation doesn’t work out as they stated.
I read many, many articles, and found this site which together helped me make up my mind. One phrase my Oncologist said at the outset, coupled with the collective information I’d gained elsewhere, made up my mind: she said - “Chemotherapy kills most of the cells in your body, no matter where they hide, then hormone treatment keeps any remainders packaged in the Prostate”. So, I went with Chemotherapy first. When I told her of my decision two weeks later she said “good choice”.
I went through six sessions of Chemo, spaced three weeks apart. side effects for me were Constipation (Restorelax greatly helps ease this, along with a small glass of Prune Juice), Fatigue has been a constant (rest when needed), Neuropathy in the soles of my feet (foot massage helps to a degree), occasional skin rash on back and underarms (aloe Vera cleared this up in a matter of days), Dizziness was also a constant (it cleared a few days before the next Chemo but returned as soon as the next Chemo, Docetaxel, was administered, it’s a cycle that doesn’t clear up until all sessions have been completed), Shortness of breath over the four cycles, then started to clear. None now. Following the fourth Chemo I had considerable sensitivity in my teeth. It too has dissipated and is almost clear. Slight tingling in my mouth and tongue from the first to last Chemo session. Now cleared up. No diahhorea, thank goodness.
I’d drink lots of liquids, they say water, but soups, herbal teas, water, fruit juice all counts as liquid.
Buy a Thermometer and Digital Blood Pressure Monitor. Take your readings twice a day. BP will by lower in the morning than that taken in early afternoon.
Chart your readings, as well all other feelings and events on a day by day basis. It helps you to understand trends as well the Oncologist and Nurses find it most helpful. Chemo brain happens, you cannot remember all of the above “stuff” over a six session Chemotherapy, so your own daily chart helps you and the professionals when they review it with you. Always take your chart with you to every Chemo session and every Consult with your Oncologist.
Jeff, You original oncologist should have been able to figure it out sooner than 9 months. It’s great you are going to the Mayo I see Dr. Kwon who is the best (at least for me).
Hit it hard, fast and often!! There are lots of options and the Mayo offers them all.
To Jeff_H ; Welcome to HealthUnlocked.Its been a great help to me. only wish that I had found it earlier. There is no easy fix for us..That doesn’t mean there is no hope. One hell of a blow at 45 young man. Good to find this cite early on. People that have been exactly were you’re at Will give you the best info from experience.. You are already brave
to be over the shock.I was seven years older than you upon Dx. PC is a brutal beast that has the intent to finish us all off rather quickly once advanced and left untreated. There are many men that are surviving with PC for decades.. Mayo is a great choice. They will give you a PC specialist and the best plan for you.Then there is no looking back..I almost died on the onset of PC so I’m lucky to be here today , feeling as good as I do with no signs 4yrs past dx.They told me I’d be dead 6months ago. Do not listen to bad stats or life expectancies given..Take excellent care of yourself from this point forward.. Rid yourself of any bad habits . It is a bad road for us boys to be on.But here we are.Some breeze through treatments, others suffer a lot. Your age will give you better results because you can endure more. Build your strength and immunity starting now. You will find your way through what initially appears overwhelming . After treatments it takes time to recover and regroup .. I went thru life before PC never sick and thought I was invincible. Our chemistries are now permanently challenged . Its up to us to have strong reasons to live and adjust accordingly in order to enjoy the people and things that you’ve always enjoyed. Read these pages and you will be armed with some knowledge before your Mayo visit.. Not fearing the reaper and having a calm frame of mind is to your benifit. I was scared to death and I’ve gone through the entire range of negative emotions and thinking. With no good outcome.. Remember, Things can always get worse or they could get better... be grateful for what you’ve got.. you’re going to be around for a long time.. A book that helped me is “Radical Remissions”. In particular “chins story” .. please get back to us with you Drs viewpoint.. I believe that you can do well! Keep faith in self and your beliefs... You Can Do This!
WOW!!!....as I said to Litlerny....Thank you so much for the excellent, and detailed, advice! I am absolutely shocked at the information that you, and others here, can convey to complete strangers!
You’re not a stranger anymore.. When you have doubts or concerns, someone here has been there and can answer... mostly we fear the un-known and what “Could” happen. We fight our chemical imbalance ..Half or the fight is keeping happy and positive when faced with suffering.. We want you to handle whatever treatment comes to get you with no Psa or signs of PC.. Not knowing sucks... soon you’ll be on your pathway ...I thank you .... you’ll make the correct decisions..
Got to break some eggs to make a real mayo! I hope Mayo Clinic breaks the back of PC...
You will want to visit a sperm bank before any treatments if you and your wife were considering having children or more children. Find an oncologist you like and trust. This is like getting married to a doc like nothing you have experienced before and the trust factor has to be all in. Now having said that...you have to be informed and be ready with the right questions for every appointment. Have a note taker with you or someone on the speaker phone taking notes at every appointment.
This is not the end for any of us, but the awakening that you have a precious life and you need to start living it with intent. Be strong be brave! Have hope!
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I have a friend that saw Dr. Karnes and I would like to see him also, but my urologist has me scheduled with Matthew Tollefson. I would assume as equally qualified?
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