What To Do

[Number1gland]

For those that don't know me I was diagnosed back in early July with Advanced Prostate Cancer. A biopsy found it in all core samples taken. (12) Gleason 7, stage IV, grade group 3. It wasn't found in my bones but was found in my right iliac chain lymph node & aortocaval lymph node. This was really my first visit to an oncologist but here is what they want to do. They want me to start taking 50 mg of Casodex every day. Get a CT of my upper abdoman. Come back in 2 1/2 weeks and take a shot of what I think they called Lupron. Then a week after that start chemo for 6 sessions. I got the impression I was to be on hormone treatment the rest of my life with no breaks. I know everybody has different treatments for different stages but does this sound right for me? I don't know. It really sucks trying to make a decision like this. How many more doctors do I go to before I have to make up my mind?

[Tall_Allen]

With only 2 lymph nodes affected, chemo is overkill. It significantly extends survival only in men with many distant metastases. Talk to a radiation oncologist about whole pelvic radiation for a possible cure.

[Number1gland in reply to Tall_Allen]

I kind of thought that chemo wouldn't do much good right now. There was suppose to be a radiation oncologist at this visit but for some reason they weren't able to make it. I'm hopeful they will call before my next visit. It's just kind of overwhelming with all the different things I have herd and read about pc. Thanks for replying.

[Tall_Allen in reply to Number1gland]

You are in control, not them. If you want to talk to a radiation oncologist- call and set up an appointment. On a previous post, you mentioned Cleveland Clinic. You can meet with Rahul Tendulkar there.

[Number1gland in reply to Tall_Allen]

It's just kind of hard for me to feel like I'm in charge when I don't know what's best for me. I guess with my condition right now I should start ADT. Shouldn't I? I got a prescription for the Cosodex Thursday but I haven't had it filled yet but will do it tomorrow. I do plan on seeing a radiation oncologist or two before I start anything but the ADT. The Cleveland Clinic was my first stop but once they told me I had pc and would need treatment I ask them if they could refer me to someone closer to my home. It's a 4 hour one way trip for me to go to Cleveland and I didn't think I could keep going there because my work is in Cincinnati but I might have to try and go there for treatment. I don't know. I'm so confused right now.

[Tall_Allen in reply to Number1gland]

Dr Tendulkar may know someone in Cincinnati who can do the daily radiation treatments. You will need 2 months of hormone therapy before the start of radiation, so you might as well start it now.

May I also recommend you talk to Gregory Merrick at Wheeling Hospital in WVa. He will probably recommend a kind of treatment called brachy boost therapy where you would get 20-25 external beam treatments and a brachytherapy treatment. The brachytherapy part of the treatment is a one-shot deal, and the external beam part can be done locally.

Just call these doctors yourself to set up an appointment.

[tkalaf]

I agree also. The other option is obtaining surgery RP, to rid yourself of it. During this procedure, they can remove lymph nodes in the region. Since they detected Pc (outside) in nearby lymph nodes, I'm unsure whether this is an option.

In my case, I was Dx non-metastatic. It wasn't until surgery, they found extra-capsular Pc. They proceeded to remove 24 lymph nodes as well in the pelvic region. I am part of a clinical trial, where my RP was preceded with ~3 months of extensive ADT.

I wish to add, make sure you are comfortable with your team of specialists. Also ask about potential clinical trials you may qualify for. Stay focused, you can beat this!

[Number1gland in reply to tkalaf]

Thanks for your input and hope all goes well for you. I've been thinking for a couple of days since my visit and I don't think I am going to be comfortable with this team. One reason I feel way is, and I don't know if it really makes a difference but, I had all my medical records with me along with cd's of ct scan & bone scan. Ended up they had everything I had. I thought there was more to a team than just two. There was an Hematology oncologist and a urologist and the radiation oncologist didn't show. They looked at my pathology report then the results of my CT. They never looked at the actual CT. They just read what another Dr. said he found by looking at it. Shouldn't they have looked at the CT to see if they saw something on it or is this normal? I also don't think I will be comfortable with one of them being a Woman. Not that I got anything against women doctors. I just don't think this is the kind of doctoring they should be doing. And I'm not prejudice. I hate everybody. Just kidding. I just don't think I'm comfortable with this.

[Number1gland in reply to Number1gland]

I meant to ask you something else. Did you not get a CT or bone scan because your psa was low or what?

[tkalaf in reply to Number1gland]

My ordeal started at my annual physical Nov, 2017. My PCP detected a suspect nodule during a DRE and my PSA came back elevated. He next referred me to an urologist (specialist) in their health care system. The urologist performed a DRE and took note of my PSA and recommended biopsy.

As with many, when you hear this news it brings about fear of the unknown. With no symptoms, and knowing nothing about this disease, I starting asking many questions. However, in his replies I started to feel uncomfortable with him. It is not that I ever questioned his capabilities. He did though seem to take objection to my questioning as if I was challenging his expertise. It was weird, to say the least. After digesting this over a few days, I decided to research my condition and specialists in my area. I found an urologist who specializes Pc, in his lates 50s, well reviewed, specializes in nerve sparing, etc. He is also networked in with research centers in the area.

I asked and got a referral to him from the first urologist. I said I wanted a second opinion. He agreed, however their clinic sent this request out by (snail) mail. It took weeks before contact was made. I was pissed, but pushed on. Contact was made for the referral late Dec. and told my (current) urologist was booked out to May for new patients. Thinking this would be too late, I asked for reconsideration, to contact the referring urologist and my PCP and review my stats, to find out if I could get in sooner. A day later, they agreed to see me Feb. 1st.

I feel blessed that I went with my intuition, as I've been so fortunate to have found this doctor. He confirmed my diagnosis Feb. 1st. I had my biopsy Feb. 6th. I pushed the Medical Center where his clinic is to have both CT and Bone scans on Feb. 13th. My surgery would of been soon after, however I joined a clinical trial (though his recommendation) that pre-faced RP surgery with ~3 months of ADT.

So I consumed trial ADT months of March, April, May and has a RP on June 4th.

I just read back, and this is long.

I'll sum up by saying once diagnosed from suspect nodule, and elevated PSA (more that doubled in years time), a biopsy gets recommended. The biopsy showed advanced PC, so both CT and Bone scans get recommended. It is with results from scans they determine if your Pc is localized non-metastatic or not. I hope this helps. I wish you the best finding good specialists. Best of health!!

[Hidden]

Number1gland sorry that you have to go through this. As far as the 50 mg of Casodex (I would assume 30 days) and Lupron I have done it for 4.75 months. The hot flashes and low libido are certainly a trip but it worked for me. Others have used hormones for years and can tell you more. Starting Chemo this early is pretty aggressive, however, it may be the best thing. Also, adding some genetic testing to gauge the aggressiveness of your PC might provide you a little more information. Certainly, if your insurance will allow getting some additional consults with other medical oncologists may also be useful. It would be nice if radiation or surgery would help, however, if it isn't recommended to help there wouldn't be any reason to deal with it the additional side effects and quality of life issues. Be sure to consider each consult carefully especially if a urologist or radiation oncologist is not looking a the whole picture. If possible find a university-based cancer center with a multidisciplinary prostate cancer team -- urologists, radiation oncologists, medical oncologists, pathologists, and radiologists all working on your case together. One that has a lot of clinical trials, perhaps John Hopkins or another member might recommend others. Hang in there!

[Number1gland in reply to Hidden]

My first stop on this nightmare train ride was to the Cleveland Clinic but once they said I had pc I didn't think I would be able to go there for treatment because it was so far away and I still have to work. They referred me to the University of Cincinnati and I thought I was getting a radiation oncologist. Just haven't meet with them yet. And I'm not sure I know what a radiologist is. I'm still learning and I think a lot of it is not sinking in because I'm trying to cram to much information in my brain at one time. I never was an A student. Thanks for your thoughts.

[JoelT]

The treatment recommendation that has been recommended is called early chemotherapy. The data from the early chemotherapy trial did not show any benefit for men with Gleason 7 (which is what I believe you have reported).

I strongly recommend that before starting chemotherapy you get a second opinion on your pathology to confirm the Gleason 7. Then, if it is confirmed, you get a second opinion from another oncologist who is an expert in treating advanced prostate cancer.

You should go ahead and start hormone therapy using Casodex and then Lupron. Lets wait and see before making the decision if you can take any breaks in the hormone therapy (called intermittent hormone therapy).

You need to expand your understanding of advanced prostate cancer

Joel

[Number1gland in reply to JoelT]

I have since seen the data on the trail you are talking about and chemo is the last thing I want to start right now or have to do anytime. Hell, I haven't even filled the prescription for the pills to start the ADT. I've spent many sleepless nights trying to expand my knowledge about advanced prostate cancer but sometimes I have to read things 2 or 3 times before it sinks in. I do recall reading about a trail where half the men that were first diagnosed with advanced prostate cancer started ADT immediately and the other half didn't start any treatment until they started feeling symptoms, like me, and they said the ones that started the treatment right away didn't live any longer than the ones that waited to start treatment. I just don't know what or who to believe right now. I sent a message in my chart asking them to send my pathology report and slides to John Hopkins pathology department and got a reply saying they would then a couple of days later I got another message saying I had to send them a written request before they would do it and gave me a phone number to call. Will they be asking for a written request from me or a doctor? It's 5 in the morning and I'm already up trying to research this condition and am going to go to the sites you recommended and subscribe to the one. I'm sorry it's 4 in the morning. We moved the clocks back an hour this morning. Thanks for all the info.

[JoelT in reply to Number1gland]

I think that you should re-read the trial data, the men who started early chemo did live longer as long as their Gleason scores were 8 or higher, that is why I recommended a second opinion on your slides.

As far as the side effects for hormone therapy, they vary from one man to the next. I recommend that you take the pills which I assume are Casodex (bicalutamide) and then consider a 1 month shot of Lupron, this way if the side effects are too hard you can stop sooner.

Not doing treatment is a legitimate decision, but you should also understand as bad as the side effects might be, diving from prostate cancer can be much worse!

Joel

[diatom]

I was diagnosed 4 months ago. Non metastatic Gleasson 9, Stage 3.. I started Lupron every 4 months, Casodex daily.. I will continue those meds for 2 years or I stop responding. I also has 25 txs of external beam radiation followed by brachytherapy boost.

My worst experience is fatigue and constant tiredness.

I agree to get a second opinion and consider radiation.

All the best.

[Number1gland in reply to diatom]

I've put my plan in motion. I just got my second shot of Lupron and have been taking Casodex daily. Well almost daily. I've missed a few. I will be getting a shot every 3 months for now.

Since 10/04/18 my psa has gone from 44.1 to .11. A couple of days ago I went through a simulation to start Pencil Beam Proton Therapy in a week and a half. They say 5 days a week for 5 weeks to my prostate and the 2 lymph nodes.

Only side effect I've noticed for now is hot flashes every once in awhile. So far so good. I'm staying positive and am out to beat this crap.

[diatom in reply to Number1gland]

Great to hear about your psa results. I met with my urology oncologist 2 weeks ago since it had been 3 months since I had brachytherapy. My psa is down to 0.01 from 37. The question is how long will I respond to the Lupron injections. I had to stop taking the casodex as it was making me feeling extremely ill.

With radiation therapy, it may be beneficial to take the alpha blocker minipress. You can google minipress and prostate cancer.

I would also consider bradytherapy. I think the more tx to the cancer area the better.

All the best in your journey

Dan