New and concerned wife here. The Reddit group suggested to come to this form.
Yesterday we got the worst news possible after waiting 3+ weeks for results. I waffle back and forth between anger, sadness and hope.
My husband was diagnosed at 61 with metastatic prostate cancer. Gleason 9, it has spread to his pelvic lymph node(s) and in his scapula and lumbar spine (stage 4) possibly hip. Cribafrom on one of the sites. The doctor said it’s aggressive and wanted him to see an oncologist.
We are currently in costal NC due to being homeless from a hurricane in FL, life has been exceptionally cruel the last few years. I have no faith in the rural HC system here. I’ve been fighting to get him appointments (9 calls to get a MRI before his biopsy) only to have a biopsy with no instructions post biopsy and then to wait 3.5 weeks to hear this news. We are returning to FL and I have obtained an appointment at University of Florida for a second opinion with a urologist oncologist on the 22 (next week).
I have questions for those with Metastatic. Yesterday I asked if he should start hormone therapy and the doctor left the room to call the oncologist. He came in and said he would submit it to insurance for approval. My question is should we wait to see this other cancer center oncologist doctor before starting? Firmagon is what they requested approval for. Will a week make the difference, could this affect the other doctors treatment plan. I’m thinking we should wait until we see the oncologist at the cancer center. I tried to reach out to them and he’s not a patient yet. I also left the original urologist a message.
My other question is what should I be looking into. I started watching The prostate cancer research institutes YouTube I have the Dr. Walsh book. Anything we need to be aware of. Thanks
6/1/20 PSA: 1.7
6/4/21 PSA: 2.5
11/29/22 PSA: 1.83
10/6/23 PSA: 6.33
1/2024: MRI shows 48 cc prostate, large ROl PIRADS 5 L apex.
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you can get online and submit an urgent request for an appointment with Cleveland Clinic. You do not need a referral. Just a quick questionnaire, and a narrative telling your story. Request urgent appointment due to delay of care. We did this and they were very accommodating 🙏
" should we wait to see this other cancer center oncologist doctor before starting? Firmagon is what they requested approval for. Will a week make the difference, could this affect the other doctors treatment plan."
NO! the other doctor can continue based on Firmagon.
If you're in NC, how far are you from Duke? They have a great Prostate Cancer center.
Get as many opinions as you can. When I first started this journey, I saw 9 Dr's while putting my team together. I later added MD Anderson as well with my local MO as the lead. He did his fellowship there so he knows them well.
My situation is not unlike yours although my PSA was much higher. Gleason 9. Mets to lymph nodes in hip regions and to several vertebrae in the spine and some ribs. Firmagon (aka Degarelix) is a typical start-fast ADT because it doesn't cause a flare. I'm on this. I'm not a doctor but my advice is hurry up and if you have a prescription for Firmagon get going. Don't wait. I don't think it's controversial to say that everyone in our situation gets ADT.
Thanks, sending you wishes of good results and skilled doctors. I’m in a better place mentally today. The doctor we saw made us wait over an hour to give us this news and seemed like he didn’t know what to say. I asked how often he sees this and he said rarely. It was not a hopeful conversation. After being on here and seeing people’s positive comments it gives me more hope. Best wishes and keep up good spirits.
The current standard-of-care for men with his diagnosis is triplet therapy:
1. androgen deprivation therapy (ADT) using Firmagon, Lupron, Orgovyx or the like
2. 2nd line hormonal agent using abiraterone or darolutamide
3. Docetaxel for 6-10 infusions
If there are only those 3 bone metastases, he should also have radiation to his prostate (called debulking) and the rest of his pelvic area, and to those 3 bone metastases if safe.
In NC, Duke is the preeminent hospital. Andrew Armstrong or Daniel George would be top choices for oncologists.
Hi Allen, I saw your in FL. Thanks for responding with details and support. The problem is our insurance is FL based and we are out of network in NC.
Our choices are UF in Jacksonville or Moffitt . I have made an appointment with UF for this upcoming Thursday with a urologist oncologist. I called Mayo and they don’t take our insurance. I have a support network in Jacksonville. Sarasota is our closest friends for Tampa. Would love to hear your thoughts on this. Thanks again for your time and advice. Wondering if should seek a third opinion at Moffitt.
We have direct personal experience with Johns Hopkins, MSK, Duke and FL Cancer Specialists in Sarasota. Suggest you look at vita for Dr. George (as TA suggests; my MO), Dr. Jonathan Rosenberg (Chief, Sidney Kimmel Institute at MSK) and finally Dr. Elizabeth Guancial (trained under Dr. Rosenberg, who recommended Dr. Guancial to us) at FL Cancer Specialists in Sarasota (my wife's MO) We are in Jax and travel to Duke and Sarasota. IMO, avoid Mayo in Jax.
Our insurance doesn’t cover Mayo. I called yesterday. We are originally from MN so it was my initial thought. We even thought about going to Rochester because many of our friends and family have went there. Unfortunately insurance company won’t allow.
Greetings from Florida, we used to live in Sarasota, now we live a bit north of Bradenton.
In Spring 2023 my husband got the 'news', and we had numerous consults with Moffitt, local Brandon treatment, and UF Jax. Ultimately we went with UF Jax. Part of it was due to the daily treatment regiment - Moffitt and the local Brandon center required a daily, round trip drive up I-75, and there are always accidents, so a 2 hr journey (r/t) could well take 3 hours or longer. The other part is that part of the radiation treatment routine requires certain bowel and urine/drinking lots of water and rention of urine, and for my husband it was incredibly painful to have to be in a car that long, holding his bladder.
We made the trip to Jax and visited the UF center. The folks there are very understanding and a commute through Jax is super easy compared to 1-75. We booked an apartment at 3rd and Main (they work with UF and get discount rates/pets ok) and that was our life for 6 weeks.
I know that doesn't tell you much about each place,if you send me a PM I can give you add info on why we didnt go with Moffitt. And the local treatment center RO told us that if he was in my husband's shoes and the insurance covered it, he, himself, would go to UF Proton Center. So we explored and went with that option.
Let me add: call UF and speak to an intake person about the program. They will FedEx you a package (free) that has a lot of info and a book that explains everything about the treatment process.
I have been extremely pleased with MD Anderson in Jacksonville. I have been treated by them for over 1 1/2 years now and have only positive comments about the treatment, the care, and the education I have received from them.
When I initially had an initial Zoom consultation with my MO at Johns Hopkins (30 years experience and is Director of the Brady Urological Research Center at Hopkins) he highly recommended Moffitt. I chose him as my MO but would not have hesitated to go to Moffitt. He said they individualize their treatment and are very up to date.
Praying for you and your husband. You are doing the right thing, research, research, be your own very aggressive advocate.
The Prostate Cancer Center you tubes are also very informative, and they have a phone number where you can talk to a Prostate Cancer advocate, I did.The wonderful support group here will help you as much as they can, they have been a wonderful help to me!
Decisions with prostate cancer are generally not urgent. Gleason 9 does push it toward quick action. I would certainly start whatever you can including ADT which will help to keep things in check while you fight the insurance racket. As TA suggests standard of care is triplet therapy but if you can only get ADT approved right away it will buy you some time. You really can fight with the insurance companies if you persist. They have specialists in denying claims but if you squeak loud enough you might get some oil. I have about the best insurance one can get in this country but still have to fight when I think they are being assholes. I have medicare so that does make it easier because they have national and uniform coverage. You might qualify for additional coverage such as medicaid if your financial situation is difficult and or you qualify as being disabled. Don't be afraid to ask for everything and consult advisors if available through your health care network. You need to ask for help as it is not freely offered. For example we got our hotel paid expenses when we need treatment far from home. This has saved us many thousands of dollars. Make as many friends as you can, be nice and don't be afraid to ask. You might also contact FEMA if your area qualifies for disaster relief. They might help with local housing to keep you in your insurance covered area.
I was diagnosed with gleason 9 metastasized to bones20 months ago..
Had higher PSA than you but no lymph node issues.
Considering your insurance issues and the fact that you have an appointment next week, don't panic ... but should consult with medical and radiation oncologists.
Primary therapy is ADT, radiation since you have only a few mets and possibly chemo for triplet therapy.
I had ADT (still on it) and radiation.
My oncoligist and cardiologist strongly recommend good diet (see a nutitionist working with an MO) and resistance training as very important.
If you have any issues with glucose levels but not on diabetes meds yet, you might consider starting meds as ADT impacts glucose levels and cholesterol.
Hi, once it has spread Hormone treatment is the way to go now, I would not wait. I had my Cancer diagnosis after a blood test, PSA was 7, MRI confirmed a small amount on left hand side, biopsy confirmed Gleason score 3/4. Had Prostate removed but two weeks later hospital called telling me cancer got out and was in one of the lymph nodes that they took out at the same time, more blood tests followed PSA now 11 should be zero, had a Petscan which showed cancer in 15 lymph nodes on pelvis and lower blood artery, was put on two weeks hormone tablets straight away for two weeks to get the ball rolling, I asked like you about how this would effect further treatment was told it would not it just strinks tumors while I wait to see oncologist.Since then I am on three month ATD jabs and enzalutamide (Xtandi) and also started seeing homeopath who has helped throughout with fighting the cancer and helping with the side effects. PSA 0.05 since have been on this road for 28 months. My advice get on the hormone tablets now and then work on a plan when you get to see your oncologist. The treatments that seem to be out there for people that has the cancer on the bone is a three prong attack. Hormone injection, enzatutamide and Chemotherapy. Hit with everything straight away.
This is a journey with ups and downs, I was at a village show last week had a hot flush and started feeling unwell ended up in a side room on the floor lying down while listening to everyone laughing having fun.
Stay strong for your husband and give him support plus a kick up the backside when he drops his efforts fighting this. He will change, going on hormone treatment is life changing, his personality will change. It's like a woman going through the change ok one moment bitting your head off the next.
I get fatigued, angry and fed up but just keep going. Hot flushes are hard to deal with sometimes but I am still alive. Stay fit and exercise every day if he can. I brought a swim spa and swim 6 days a week. Feet nerves are suffering because of drugs I am going to try acupuncture to see if I can fire up these again as presently my feet are painful and numb.
Thanks, all really good advice and appreciated. Today we went on a 2 mile walk. On Monday I plan to make some calls again. Meanwhile I am reading all the latest information and resources suggested. Thanks again for help and I hope your treatments go well.
take a few minutes to breath. See the new Dr next week. I’m stage 4 since last September. Had RT in Oct for Mets on ribs and pelvis. Now on ADT and Erleada. Crazy roller coaster but that’s how it goes.
don’t mess around with the urologist , he’s done his job . Let the oncologist get to work as soon as possible. Time is your enemy. Stage 4 here 2016. My treatment went like this. 2 weeks of treatment to settle my system. Then 6 rounds of taxotere chemo with a bone shot the following day. When the chemo was done the doctor ordered me on Xtandi a chemo pill. I get two shot every 28 days a bone shot and an anti hormon shot. Forgive me the names escape me at this point. Doc originally gave me a 50/50 of 5 years. Now into my 8th year.
Very thankful for my doctor. Do what you want but don’t mess with the urologist Good luck there warrior 🙏🙏🙏
As you learn more, we also reference UroToday and NCCN.
Depending on your insurance you may find some of the choices of the oral drug part for the triple therapy vary greatly in price. My husband went on abiraterone instead of one of the alternatives for that reason. It is generic and we actually bought it outside our insurance through GoodRx…but there are other plans like M Cuban’s
research, make a list of question each time before you and he go to the doctor….if he wants you there. We found it very helpful to have two of us listening.
Make sure to get a copy of the MRI and have access to his records before you go to FL
Stay positive! that's huge. Diagnosed 14 months ago s4/mets in lymph and spine, psa was over 80, peeing blood and I was knockin on the door. Everyone has a unique response to the model gameplan - triplet therapy > radiation and multiple chemo. Radiation took care of the 10/10 pain I was admitted with. My MO said in my case 5 docetaxl doses was enough. Maintaining on Lupron, Abiraterone and Prednisone. I feel great now, my psa is .3, the lymph mets are gone and my vitals are really strong. You do have to surf the drug waves - did I say stay positive?! I know guys in who are 8-10 years into this from roughly the same starting point and they are doing very well. Treatment is so much better than even 20 years ago. My dad died from it, so did his dad. I was diagnosed a lot later but things are looking good. Prayers to you and your husband❤️👍
I had an almost identical dx back in 2014, you can read my profile to see what treatments I’ve undergone. Aggressive treatment was key for me, as well as seeking out an oncologist who specializes in prostate cancer, I had to be willing to travel for that, despite living in suburban Atlanta. Feel free to PM me if you like. I’m still here, coming up on 10 years enjoying life. Aggressive treatment, good doctors and lots of prayers are key for me.
Ed, thanks. I read your bio and it’s full of great info. I’m glad you’re getting out to fish. We love to sail so I am hoping we can get some of that in our future. Nothing like being on the water for giving you peace.
Welcome to the board and best wishes. Aim for triplet therapy as TA says. In the meantime, consider dietary changes which can help postpone or slow progression. You must realize that ADT may reduce testosterone, but it does not eliminate the disease, it simply slows it down. I'm not a doctor but I have put up with this monster for over 16 years. I was 62 when I first discovered I had it, now I am 78. I avoid beef and pork as they seem to encourage PC cell growth. I ty to consume foods that slow aPC progression, including tomato-based foods and condiments. I also eat, daily. black pepper, tumeric, and paprika. I use heat on the metastasis frequently, and work lycopene pills into my food daily. You must realize that each case is unique, and therefore you need to read and learn as much as you can. The ADT is vital but you need to do what you can to go further. Also, a lot of this disease is psychological. Try to get to the point where he will die with aPC, not from it. Others here have their own dietary solutions, try to see if they help.
Well that sucks! First off, don’t despair. ADT(lupron) helps. There’s two drugs abisterone and Xtandi that work well for a while. I’ve been stage 4 for over four years and life isn’t awful. Muscle loss is an issue so lift weights. Stay active and enjoy life as best you can.
my husband started casodex and zoladex when the found the mets . A week or two won't matter too much but keep pushing . Mine was Gleason 9 , mets to t-12 and a pelvic lymph node , he is 5.5years post treatment and is doing well .. remember to breathe ... best of luck
I'm very sorry to hear about what you and your husband are going through! I've got a similar story. I was diagnosed with a Gleason 9 prostate cancer back in 2018 with metastases to the left lower back, right rib, and lung. After several consultations, I decided against surgery and I underwent radiation therapy, plus receiving Lupron shots. The oncologist wanted to reduce the testosterone level as soon as possible, thus the Lupron. In 2019, there were more mets, so I underwent chemotherapy for three months, including a chemo port which helped. Over the next few years, there were more radiation treatments and a fractured rib due to the tumor. The cancer is back now so I'm taking an oral drug called Xtandi, which has reduced my PSA level for now. I've been getting CT and bone scans every 90 days to spot new tumors. I'm telling you all of this not to scare you two - just to let you know that there is hope for years of good living ahead (I still get out in the woods in the Pacific Northwest to make photographs, I still go to the gym, etc). I'm no doctor, so I can't comment with any knowledge about the need for rapid treatment. However, my feeling is that it is really important to get that testosterone level down as soon as possible to stop or slow tumor growth. And treatment for your husband's existing tumors through radiation, chemotherapy, etc is important. "Watchful waiting" isn't a good option for him, in my non-doctoral opinion. Last, I think that it's super important that both of you go to some supportive therapy sessions. It's a "long haul" cancer diagnosis, meaning that it keeps coming back and it's not curable, probably - and sittin down with a counselor may help with the shock. I'll pray for you both. Blessings.
Thank you! We meeting with the cancer doctor on Thursday. We are not going to do watching and waiting. My concern is that specific hormone therapy isn’t something the treating doctor would not recommend or mess up his course of medication/treatments. I probably worded my post poorly. We know he will need hormone therapy. I just don’t know what this new doctor will want. I don’t want to derail an option based on this other doctor. We are 5-6 days away from the appointment.
I hope you treatments provide good results and thank you for responding.
I was diagnosed with extensive mets and Gleason 9 just about 10 years ago. Current treatment will give me more years, so try to calm the fright. Stress is the greatest killer, of both the patient and the caregiver. So: take. care. of. yourself.
That said, Mayo Clinic has a big hospital in Jacksonville, or if you're father south Cleveland Clinic is in Weston, or in the Tampa area Moffitt is great.
You have lots of choices and you should find the doctor/hospital that you find the best fit, but still keep contact with at least one other specialist to question when you need a second opinion.
The doctors know disease treatment and, generally, not much more. So care of people is actually outside their scope. You will be tasked with not just asking questions but finding out what questions to ask. It's a big climb, but we're here to help.
Again, breathe. Find something you both enjoy and do it now, right now. Reducing stress right this very minute is the only thing you can do for yourselves. Oh, and brace for impact as the US healthcare system is about to challenge you mightily!
Seenif they feel Lupron will work instead of fitmagom. I started with firmagon the first few months of rx and it was quite uncomfortable during and after the injection. Plus lots of hot flashes. When I switched to Lupron rx I had none of that. I hope he is able to go the Lupron route. Good luck.
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