Joining the Reluctant Brotherhood (and Update on Progress)

Welcome Jay. I'm sorry about your Diagnosis but welcome to the discussion board. As far as your question, Your medical team is approaching this as cautiously as possible. Joining us here is a good step. Ask your Uroloigist if there are in person support groups in your area. You might investigate going to a meeting and seeing if it's for you. My urologist invited me to a webinar for patients about PC and I found it helpful, you might ask about that or do some searching for open webinars. Do you have a public library someplace close? you could search for some articles there or use google Scholar that provides access to free articles. You aren't alone. If your anxiety is getting to you, ask your PCP for something to help your mind stop grinding.

You have a Gleason nine, none of the other numbers matter the highest number is all that counts. That is very aggressive and you are really wasting time with the urologist The urologist is not a cancer specialist. They are urologist and surgeons. You want a lot more options than just surgery as you well know.

You probably want to get a decipher score, which can show how critical it is to get quick treatment since it gives you an idea of the risk of spreading and death.

Get the PSMA pet test and then go with the results to a center of excellence. Recently a list was posted of where to find them. Were you able to find that information? Maybe someone can post it again. There is a mayo clinic in Scottsdale, Arizona, that would be an excellent place to start if it’s not too far. If you go somewhere like that, you can get treatment much quicker than you’re getting it now. Knowing that you have a Gleason nine, with a quickly doubling PSA , they will definitely not hesitate to treat you quickly.

There are groups that help cancer patients get hotel rooms for free or very low cost. Do a search on the web and you will find out that information if it is necessary.

You should get a hereditary genetic test to see if you have anything in your genetics that can cause prostate cancer. Do you have a family history of cancer? If you go to Mayo clinic, they will have you get one.

To try to cut back on your cancer growing, you should cut out all red meat, eggs and milk. They tend to exacerbate prostate cancer. There are a lot of prostate cancer nutrition videos on YouTube. You might go check them out.

The information you get about the machine that you’re having your PSMA pet scan done is really not useful. The PSMA results are all that matters. Which chemical was used to do the scan is really not critical information either.

There are a lot more treatments than radiation and surgery. HIFU, cryotherapy and TULSA-PRO are just some of the other options.

Jeff, thanks you SO much for this reply. You’ve hit on exactly what I was thinking so it’s great to have a confirmation of that. I do plan on connecting with Mayo in Phoenix area as that is closest to me. Great new info to me on choices other than surgery or radiation. I’ll get studying for sure. Next Tuesday for the scan can’t come fast enough for me. Thanks again. Jay

Hi Jay,
I sympathise with you. I found the waiting the worst bit. Here is my contribution so far.
The Psa blood test is not the definitive test. I think your reasoning is pretty sound. An MRI scan and follow up biopsy will give more valuable information on size and location.Your hospital should be able to advise. I was lucky once I was in the system I got rapid responses.
I can only give you my opinion, I had a prostatectomy and, so far, it looks positive. The removal is over with fairly quickly, your hospital can advise and maybe give you the options available for you.
The waiting is the worst bit. I hope all goes well.

Jay:
1st, sincere best wishes; you have a lot going on and it can be emotionally unsettling.
The Prostate Cancer Foundation pcf.org has a free 2 part Patient Guide that can be downloaded and/or ordered in hard copy. Also Patrick Walsh MD's book Surviving Prostate Cancer is a much recommended information source.
While not a MD, with rapidly rising PSA and identified Prostate Cancer (PCa), after your PSMA PET scan, you might inquire about beginning ADT asap to "hold" the cancer at bay while you evaluate and make treatment decisions.
There appear to be many variations of the treatment protocols, and others have reported beginning ADT therapy prior to either surgery or radiation.
There are 1 or 3 mo injections or Orgovyx, a daily pill, which might be recommended by your doctors pending further evaluation of your PCa and treatment options.
I am a layman here making suggestions only. My PSA rose quickly from MRI to Biopsy to surgery, and I know that I was concerned about the rise while navigating the course of diagnosis and treatment.
Again, best wishes.

Jay, welcome to the "Reluctant Brotherhood." I am 4 years on this prostate cancer journey. Here's a 10K over view of my "Reluctant Brotherhood" story. Like you I am 71 years old. Like you my urologist was the first to know. He referred me to a bunch of doctors in his network; surgeons, oncologist, radiation oncologist, and there were more. But it was right around November, Veterans Day. He glanced at my hat which I proudly wear "United States Navy Vietnam Veteran." He asked if I was a vet, when and where I served and added the VA to my referral list. Sadly I was in lots of pain. I ended up in the ER that night, after scans, blood test, MRI, X-rays, I received my official Stage IV Advanced Prostate Cancer diagnosis at 2am in the morning. They gave me some pain pills and sent me home.

Around 9am that morning an oncologist, let's call her Angel, from that hospital calls. She wanted to see me now, like right now. My wife brought me to Angle's office within the minutes. Test, talks, and a call from a VA Oncologist, let's call her Arch Angel, who informs me I am in Community Care and between the two Angels my treatment plan is developed, and started. The Arch Angel calls me the next day to check up on me, lets me know she cares and the VA will support me any way it can. Jay, I now believe in Angels.

Radiation therapy (28 session), Chemotherapy (three months), ADT (Hormone therapy ever since). Jay, these three treatments are prostate cancer standards.

Wellness Program; exercise, nutrition, mindfulness, and staying social are the keys to maintaining quality of life, which is what my life is all about now. PSA numbers will rise and fall, test, scans, and oncologist are my support system. And, you're 100% right the "Reluctant Brotherhood" helps guide and support us all.

Welcome aboard Jay.

If you go to Mayo in Phoenix there is a Hope Lodge in North Phoenix that is operated by the American Cancer Society. You can stay free while getting treatment. My local urologist gave me two options which was radical surgery or beam radiation. I did research and found many better treatments but they are usually located in larger metropolitan areas. I traveled fours away to get my TULSA PRO treatment. I stayed at a Hope Lodge in OKC. They are wonderful and caring and there is no charge. I'm 5 days post treatment and doing really well. I'll have a catheter until Dec. 3rd. when I go back to have it removed. I called Hope Lodge and have a room for one night after the drive. Do your research and be proactive. Waiting is a torment. I wish good things for you.

When I switched doctors after 2 1/2 months from one who was nonchalant about everything and offered no options to one who was head of the dept at the local hospital he sped things up quickly. My PSA was 40 and a Gleason 9 and I just completed my pet scan and a week after calling I got an appointment he offered options and quickly got me on Orgovyx to basically stop the spread until my surgery about 5 weeks later. He said it was very important to get it under control quickly.

Luckily I am in NJ and there are many doctors and cancer centers here

Jay, sorry to hear of the G-9 grade lurking . Try and find a zoom or unperson support group in you area , get to 2 or 3 of them for social support and knowledge . Also , get to a Hospital that specializes in Cancer . In Canada we have the 'Cancer agency hospitals' , all they do is cancer treatments and investigation. PC is a huge one for them . Then talk to a radiation oncologist - there are many treatments out there for this kind of PC so dont worry too much . BUT , no more delays . Do you have any other health issues ? Do you have any gland cancers in family ? Anyway , keep us in the loop of what Oncologist says and PSMA-PET scan says . Your should also have a Boone scan next week and a MRI with contrast .....but im not a Dr. , just what is usual here on Vancouver Island . Chin up ! and Keep us informed . James on Vancouver Island

Jay, I am in the southern suburbs of Denver, Littleton. I am 73 years old and I was diagnosed two years ago almost to the day with Stage 4 prostate cancer, grade 5. It had spread to one lymph node, and various spots on my pelvis and sacrum. I have a Medicare Advantage plan through Kaiser. My urologist called me immediately when he reviewed my initial MRI, I was skiing at the time, and he insisted that I start on Casodex immediately, schedule a meeting with an oncologist and schedule a PSMA pet scan. Within two weeks I met with my oncologist, received a 6-month Eligard shot and started on Aberaterone. I also had a DNA test done which indicated I was a good candidate for Keytruda if it became necessary. My oncologist recommended radiation because my cancer load was relatively light. I was referred to Sky Ridge Hospital in Lone Tree which has a Sarah Conner Cancer Center. My radiology oncologist there discussed my PSMA scan with 6 other radiation oncologists and they collectively decided I should have two radiation sessions, one for my prostate and another 6 months later for the lymph node and my bone mets to insure my colon had healed before the second round. I had another PSMS scan just before my second radiation treatment to make sure the ADT treatment and the first radiation treatment was working, which they were. The cancer in my prostate was essentially gone and my bone mets with the exception of my sacrum showed no signs of cancer. The bone mets were all treated in my second radiation session with a concentration on my sacrum. Now that the radiation is done my ADT treatment will end in January. I am scheduled for another PSMA Pet scan in April. My point is, Denver is a lot closer than Phoenix and you can get state of the art treatment here. In all my study about prostate cancer treatment, my care has been exactly what someone would receive at any "center of excellence". Good luck on your journey and keep the faith.