There is no treatment that will cure, but you will live many years with this disease. Do not try to act quickly, it will not make a difference, believe me.
Your doctor will recommend radiation or just hormone therapy to stop the tumor from growing further for several years.
Thank you for the response and positivity. It’s is helpful. I’m grateful to have found this community. The world is full of people who do not understand how devastating this disease can be. Best, Trina
I suggest he come to UCLA to get a scan called Ga-68-PSMA-11. It will cost $2650. It will tell you if there is any spread outside the pelvic area. If not, he may still be cured by intense radiation to the pelvic lymph nodes and the prostate. There are two kinds of radiation that may be curative: SBRT or a combination of HDR brachytherapy to the prostate with IMRT to the surrounding pelvic area. Because of the lymph node involvement, he will also need about 2 years of hormone therapy, starting 2 months before radiation begins. I recommend he start by talking to my RO, Chris King at UCLA.
Genomic tests of tumor tissue tell one nothing about heritable genetic abnormalities.
Even if it were a germline tests...Even though both my parents died of cancers, and I had prostate cancer, I had no interest in getting it. What would I do differently?
"Germline genetic testing increasingly identifies advanced prostate cancer (PCa) patients who are candidates for precision therapies. The Prostate Cancer Clinical Trials Consortium (PCCTC) established the Germline Genetics Working Group to provide guidance and resources to expand effective use of germline genetic testing."
Maybe it would not impact your decision about what to do about your cancer, but germline testing may be beneficial to others.
I just scheduled my psma test at Ucla. The price is up to $2,780 now. Still, critical tool if one can afford. How long do you think until insurance will start paying for this test that virtually every dr in know says is the best ?
It doesn't matter how many doctors "like" it, the FDA only evaluates hard data. That's why they do clinical trials. Insurance/medicare won't cover it until the FDA evaluates it.
To get a PSMA scan you have to have your urologist or mo, or surgeon fill out a clinical trial survey.
You could this this survey either by making an appt with a Dr at UCLA and telling that Dr you want to apply to psma scan trial,
Or I believe calling there clinical trial department and asking for application directly.
3107941005 is the number to nuclear medicine at UCLA. They are who contacted me once we were accepted for the trial.
I’ll look to see if I have any other relevant info and ask the nurse of Dr we are seeing what the best way to go about getting an appointment for psma is.
Longterm is correct with the number. But I’m not sure there is stil any clinical trial going on for that scan. When I tried to get in the clinical trial 2 years ago they turned me down because I didn’t have my prostate removed or radiated. I did a partial chryo. Now anyone can get in with a prescription and payment of about $2,700. Have you dr fax (310-267-0227) your prescription and call that number. Daisy seems to be the only one there that can set an appointment. It took me 3 calls an a lot of waiting on the phone. She never called back so I had to wait to talk to her. But I’m in next week.
I feel the fear in your post .. I’m no expert by any means, but it’s not that bad. Stay calm. You husband is gonna be fine for many years hopefully. A good MO and RO will start him on many different paths and have tons more to back that up if and when it fails .. I don’t know how old your husband is or how long ago his dad died, but he’s far from that IMO. I’m only 50 and have been fighting for three years and feel amazing with a .1 PSA from 17.5. It’s a battle but he can win .. we have had in the last 5 years amazing new treatments we’ve never had .. SBRT and Zytiga I’ve had and am on .. its gonna be ok
Sending hugs. I know this is scary. Really scary. It’s a new world and I’m sorry that you are part of it. HOWEVER, don’t let the stage 4 diagnosis wear you down. Do not google this. I believe that with a stage 4 diagnosis there are so many levels and variances. This is not the end by any means. It sucks sure but life can still be good. Hang in there.
This site will be a wonderful research. I POURED over everything I could find when my husband was diagnosed Gleason 9 PSA over 600 20 months ago. We did ADT plus Docetaxel right away. Your Medical oncologist will help with options. Research oncologists specific to prostate cancer who are top. We are in Philadelphia and visited with three great places to decide which fit us best. My husband is doing well- PSA continues to drop and scans show shrinking/less tumors each time. He feels good as well- continues to work out and eats to fuel his energy. You've got this and will get lots of help here❤
I’ve done very well with Dr Kwon at Mayo in Rochester - already close for you. Mayo’s choline PET scan is very good. They have everything in house. Having care close to home makes the process much easier.
Number one stay calm and don’t panic, if the scans were clear and just the lymph node that should be pretty easy to fix. Listen to the doctor about the options, myself I went the aggressive attack on my stage 4. Just did the genetic testing,unfortunately it came back normal and no surprise. Might suggest a Auxium scan to make sure there are no bones involved. Fight that monster 🙏🙏🙏
Lots of hew treatments. I was diagnosed in 2013. Taking Lupron and XTandi. Change of diet, exercise, supplements and prayers hope to live a long life. Last PSA .00 His Case sounds similar to mine. More meds and treatments coming down the pike. Stay positive. Nothing feeling like your in the palm of God’s hand and mercy.
I will echo what others have said here, first, don't panic. It's really hard, but try to relax and take a breath. Read, read, read, but do it here, not on Google. You can google information you find here for further exploration, but my advice as Mish80 posted, don't start at google. Ignore averages and anyone who says anything about life expectancy. There is no way to know. Google Todd Seals. He posts here, too, as Todd1963. His story is inspirational, as are those of many members here.
My husband was diagnosed in March of 2018 with a PSA of 34 and a huge prostate that was 80% tumor, Gleason 9, clean bone scan and nothing identified in lymph nodes, but two months after surgery his PSA was at 17.6 and rising. He started Firmagon last August and his PSA has been undetectable (less than 0.01) for several months. He just had a CT with contrast and another bone scan and the results were "no sign of cancer."
It's so hard to keep back the feelings of panic and despair, but they won't serve you well. There is much more reason for hope than despair.
Not sure where in Minniesnowta you are, but wherever it is you already have the Mayo Clinic in Rochester as your neighbor. Dr. Kwon and his colleagues up there are top notch, so don’t rule them out. You should anticipate multiple visits, sometimes just a few weeks apart, particularly during the beginning of your hubby’s treatment. Also, the Mayo has a network of 3 medical centers that have share their knowledge and patient records. At diagnosis 4 years ago I was already Stage 4, Gleason 7 (4+3), oligometastatic . I have been going to the Mayo in Jacksonville since then. I’m really happy with them.
Hopefully you can get the genomic testing done at some point in time...just make sure your insurance covers it! I recently had the Guardant 360 done. Found I had an ATM gene mutation. There are several PARP inhibitors in phase 2 and 3 clinical trials, most prominently Olaparib (Lynparza) and Rucaparib (Rubraca). I believe both have already been approved for ovarian and breast cancer patients with a BRAC 1or2 gene mutation, and both have FDA “breakthrough” approval (not yet final FDA approval) for CRPC prostate cancer following androgen therapy and chemo. They also have some efficacy for ATM gene mutations, but much less than for the BRAC mutations.
Best wishes to your hubby and you as you start on your journey.
It is hard of course to "stay calm and not panic." But several have written to tell you this -- because it is true. The temptation is to act quickly. You both have plenty of time to weigh possibilities, to avoid paying for things that will not help and to target his treatment toward what will help. That his PSA is relatively low for stage IV is a hopeful sign. There is more expertise and personal experience with prostate cancer on this site that any one oncologist could ever provide.
OK...I know you have heard this, but it's not panic time...yet. We're talking years here, so make the most of them. I've been a member here for about two years. I had to have someone share their Glossary with me so I could figure out what people were talking about. (Many who post assume we all know the acronyms and abbreviations. That's just not so.)
My main focus has been on the process, on mental effects, and on my treatment (currently it's chemotherapy; as of this writing I am moving into my fifth round of Taxotere--and whatever else they throw at me.)
Every 'round' of the chemo brings different side effects. The round is three weeks long, so the first week after the infusion is where the fun begins; however, the second week moves into a recovery period. And by the third week some strength and positive results start to accrue. SO...of course...it's time to do it all over again.
I was told by and onc that I had 5 years exactly 5 years ago with my stage 4 disease yet here I sit. Kwon is great. He will custom tailor a treatment program.
I just called and it was easy. I just re-read your post. Looks like your husband hasn’t had his prostate removed? I had heard Kwon won’t take someone unless they’ve had a prostatectomy.
And your psa has to be high enough for the scan. My husbands is still too low for a appointment with him but they offered one to the urologist because of my husbands prostatectomy and my husband ended up with a urostomey.
Release the hounds....my half shilling worth.....if adt......exercise...excercise....good diet....dont put off any thing that will make you happy . Also if you go to ATT route get him a boxes of Kleenex cuz his emotion level we'll get off the chart at times we cry at the stupidest okay things welcome to the club but it's the best one around
God bless you & your family. My husband was diagnosed with same thing 6 weeks ago. He starts chemo on Monday at city of hope in Duarte, Ca. I will try and give updates on how this treatment is working.
It’s horribleMy husband to was diagnosed in April with the Gleason 8. My head was spinning I was sick then I met all these men that are fighting for their life and even though I didn’t know them I felt 1 million hugs from them they are my heroes they keep me sane every day I may never meet them but I will love them forever They won’t answer any question and help you through this nightmare from one Wife to another
Greetings Dachsundlove. That'a a tongue twister. You mentioned that your husband is Jewish, is that because of the type of care he may receive may be restricted in any religious way? BTW how old is your husband?
Let me repeat what almost everyone has already posted.
D O N O T P A N I C
Your dear husband will be around for many many years.
My husband is 69. He is of Russian Jewish decent and has a significant family history of cancer, so we are curious about his genetic makeup and how that factors into the pc.
He started firmagon yesterday and it feels like things will never be the same again.
Thank you for your response. Let me reiterate Do Not Panic... This is a slow growing disease and he will be around for many many years. True things will never be the same but it will be better. This disease brings families closer together and gives every one the opportunity to asset their lives and to make every day count. So from now on enjoy every day and please laugh... God Speed to you all.
Hi and welcome. You are right, life will not be the same again. However there is a deeper type of living that comes about through the journey that is priceless. You are in the right place coming to this group. A virtual hug to you from one of the wives on here. 🤗
Sure can😁. But we already know ex-wives and dirtbag daughter-in-law’s only see and hear what they want but In my eyes and a lot of others You’re a great guy and don’t ever forget it😍
Stay calm and choose wisely. You already got good suggestions from the forum. My dad was diagnosed with metastatic prostate cancer stage 4 in May 2016 , look at my profile for treatment history , he has his ups and downs but still going strong. There are lot of treatment options available now based on individual cases. Best wishes. God bless
After getting the talk about the effects of firmagon yesterday, I said to my husband why don’t we ask what about doing nothing. The side effects of the conventional meds for this sound life changing and I wonder how many people forgo treatment all together for this?
He started firmagon. He is Doing acupuncture. We are both very into healthy diet, but I’d love more information about alkaline therapy.
1 tsp each Arm and Hammer baking soda and pure maple syrup in cup of water.
Twice a day, 1hr before eating anything in AM and 1hr after last meal PM.
Do this for 10 days, then stop for 7 days, then another cycle for a couple months. Do PSA test before and after first cycle. If PSA significantly improved as mine was, (1300+ down 70% to 362 with no other treatment in 12 days, and then down to 1.6 in the next 3 mos coupled with ADT Leupron),
After about 8 mos I changed cycle to 10 days out of each month. Staying below <2. Expect to continue until It quits working...
Get genetic testing for mutated BRCA 1 or 2 gene. If positive other medical treatment options are now available.
Research everything, meet with support group for their experience and guidance.
If I lived closer I would be there in a heartbeat. I decided to seek care close to home where the docs are close by when I need them. I don’t believe that one medical center has a “secret” cure...research is
Shared openly. The logistics of going to UCLa or M D Anderson or wherever are costly and tiring. Obviously not everyone agrees as plenty patients travel the world looking for the silver bullet.
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Looking for help - newly diagnosed dad
Husband is Stage IV Metastatic to Bones with Rising PSA
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3 Years After Stage IV Diagnosis
