I know it could be worse and for that I'm grateful but atm this really sucks. I don't know how I'm going to tell my husband when he gets home from his night class.
Dr Says it's all over and very involved in the groin area. From the scan reports I picked up today it doesn't look like other organs are involved and bone involvement only in the groin region.
Any suggestitons?
CLINICAL PARAMETERS: Age: 53, cT2c, PSA 393 ng/ml, Gleason 4+4=8, Volume: 51.0 grams, Bxs: 5L + 5R
Yes, that sucks, but incurable does not mean unmanageable. Embarking on an aggressive approach can mean he can live with the disease for a very long time. There's a really good nomogram that can give you some perspective on this - it tells you his odds of dying of prostate cancer vs something else vs surviving at 10 and 15 years, even if he does nothing:
webcore.mskcc.org/survey/su...
Of course, if he takes an aggressive approach, his expected survival may be much longer. In the last few years there have been tremendous strides made with medicines that have been shown to improve survival significantly by using them early enough. Docetaxel and abiraterone both have been FDA-approved for this purpose.
Here's an article describing his options as well as clinical trials he may be interested in:
pcnrv.blogspot.com/2017/06/...
Your first step involves finding a Medical Oncologist who you can work with. The best tend to be associated with major teaching hospitals. If you say where you are located, I and others might have suggestions.
Well I guess that nomogram can't hande us. "You have finished taking the life expectancy survey. Because you have reported positive nodes and /or metastatic disease, we are unable to calculate your life expectancy using this tool. Please click the close button."
Darn.
Wouldn't put a lot of weight in it anyway but was curious. We're stronger than they think. 😉
It does not like us Stage 4D1, 4D2, 4D3 men. Guess we are just to tough for them!
Welcome to the group, What did his Biopsy say in regards to Gleason score, percent of involvement ect, and what is his pretreatment psa, I am not reading anything definitive here , just suspicious and likely, and needs to be seen with a bone scan. To me means they are not really sure. None the less, even if it is true, there is lots of hope now for managing this disease for many years, with more new things coming out every year. Huge strides have been made in recent years ,and lots more in the pipeline. I was dxed almost 12 years ago with widespread metastatic disease to distant sites in my skeleton, with also soft tissue and a 3by 4 cm spot on my lung, which later was determined to be something else, I would suggest if it is found to be true, find the very best medical oncologist you can who specializes in Prostate Cancer, a good one can add many years to ones life . We are all here for you, lots of informed patients on this site, please keep us posted.
Dan
I added the additional information to the original post to help with clarification.
I would say a lot of men on here have had similar presentations, and knocked the psa back to undetectable with the new protocol of 6 cycles of chemo with initial adt, Adt (androgen deprivation therapy) works very well with most men. Here I am all these years later after a stage 4 diagnosis, Find the best Prostate specialist medical oncologist you can. What part of the Country are you located in?
Colorado
I had my RP removed at MD Anderson and now being treated at UC Health In Aurora.
I think they’ve been excellent in my Care. In fact my RO came from MD Anderson and he now is at UC Health.
So sorry you have to be here in this group, but glad you found this great group of fellow cancer fighters and supporters.
I second Dan's comments, also being one who had a very similar diagnosis as your husband one year ago. I was diagnosed at stage 4 with a PSA of 463, extensive mets all over my skeleton. I was in lots of pain on opiate-based meds, tons of night sweats, felt like I was not going to make it much further.
Yes, it's a shock to find that out, but then I remember distinctly the day I woke up in the morning and realised I was getting better. That day was about a week after I started ADT treatments which took my PSA from 463 to 12 in one month and the pain was gone. I followed that up by starting chemotherapy. That along with ADT took my PSA down to .2 in 7 months.
My great response to treatment is not unusual so there is so much hope for your husband to have a similar or even better repsonse to the excellent treatments available.
I was shocked to find out I had stage 4 prostate cancer, but I was also shocked how effective the treatments were against it. Many here have gone more than 10 years with good results.
We are all hoping for the best for your husband. We are here to help and support you and your husband in this fight. Please keep us posted.
I was 53 with same stage same Gleason , but I was worse ie; kidney failure and tubes out of back. Believe me , you don’t want to go there. You will push this back with effort and some suffering. That’s what it takes to live longer. No guarantees. Others have had success in your same shoes including myself.. You are in the hardest phase , the diagnosis! With love and support there will be treatments and recovery. It possible to live along side APC for decades. Prayers help..
I hope that no one takes my encouragement as I m gloating over my current status. Thats not my intent. We all know the nature of APC is to return and if we live long enuff it will kill us. Why get stuck there . If a schlep like me can have some success with Adt and Radiation anyone can. I’m in the second round of a lifelong fight.. You’re in round one. Just concentrate a on getting to a better place and you will.
I appreciate your honesty, either way but it is good to hear the positives a long the way. Otherwise one might wonder how much of this is truly worth it? I understand why some choose only natural methods and turn down western medicine's reccomendations. How young are you now? Keep on keeping on. 🤗
It’s a conundrum . I don’t think that doing nothing is an option for#4. I asked my specialist in the beginning what would happen to me if I did nothing. He said within 2yrs I’d die a horribly painful death like a women in childbirth all in my pelvis . I was in sad shape. Sign me up doc..Life thru chemistry or no life at all .Wasnt much of a choice for me . You will do what’s right...
Hi Lulu700!
How long ago were you diagnosed? My dad is 76 and recently diagnosed a day after Christmas last year (2017). Saw urologist day after new year's and sent for more bloodwork and nuclear medicine for a bone scan to compare. Started him on Casodex 2 days after we saw him. Within a week his pain starting lessening (he has bone mets mainly in lower pelvic area). He started walking again and actually stood up straight to walk! He started on Lupron on 01/29. Had bloodwork done 5 weeks later (3/9) met with oncologist yesterday and she told us his PSA went from 334 to 14!
Reading all these posts of warriors gives us daughter's and children HOPE! Keep on fighting! You will be in my prayers!
elliefight4dad, It’s great that pain has abated and the Psa dropping in the right direction. 4-15 I was diagnosed. I’m now 57.. only love can heal our Emotions. We go into menapause. Just daily happiness is a goal for him once Testosterone is gone. We feminist, lose that male prowess and confidence. At least I have. He’s almost 20 yrs my senior but now I’m feel at his age nor 57..I’m improving from the first year and a half with tubes out of kidnies there for I attrified and lost al muscle and joints suffered also. So we all have one million complaints. If not in severe pain that’s indeed a blessing.The rest we just learn to,accept with time. For me your pops and most of us here this is a maintenance issue we live with.. no cures... doesn’t mean hopes not on the horizon... I was pulled back from near death for APC.. so I’m fortunate to be here. Spend quality time with him . A daughters love for a father is one of the strongest bonds. God bless you and your father... I’m the best I’ve been in 3yrs.. Hope your dad can get into a better place..Maybe you can plan a vacation or a special time together.. Those are the moments that count.. Just being there mentally to support him is 99% of the battle. My dad died 20 yrs ago .Not a day that I don’t feel him in my heart. These bonds transcend time... Thank s for replying.. take care....
I'm happy to hear that you're headed in the right direction. And any bit of triumph, as small as it may be, towards this beast, is worth smiling about. I'm so happy to see that you smile at those moments; please don't ever stop! My dad was recommended to go on Zytiga and he's going to require quite a bit of monitoring, but he had planned to travel. I talked to him last night and told him to take that trip before he started on Zytiga. After all, the MO said we had 3-4 months to think about it, since they recommend adding it early on.
I will have you in my prayers, and know I'm here if you ever want to vent. Keep fighting and keep smiling!
Love & Light,
Ellie
Sorry if I’ve vented. You can vent also to me. I think it’s smart to take the trip if time isn’t of essence . Time spent now together is priceless... Your prayers are appreciated. Love ❤️ & light , thank you!
Hi Auburn Angel,
Depending on where you are in Colorado (I'm in Boulder) I'd suggest you call the Urologic Cancer Center at the Anschutz Medical Center (which is U of Colorado). Number is 720-848-0170. They're a National Cancer Institute designated Cancer Center. Ask to be seen by Dr. David Crawford. He's a urologist but is involved in a lot of research. Very knowledgeable. Then, I'd suggest adding Dr. Mark Scholz in Marina Del Rey (essentially LA), CA to your team as the medical oncologist. He specializes in prostate cancer. Sounds far away but it's really not (again depending on where in CO you are). Numerous flights between Denver and LA every day, often at $40 each way. And it's a very short ride from the LA airport to Dr. Scholz's office. Or you can have phone consultations with Dr. Scholz though he's not covered by most insurance unless you see him in person. You can easily fly in, see him, and fly out the same day. He and Dr. Crawford can coordinate your husband's care.
Hi Auburn Angel,
I live in San Diego and travel to LA to see Dr. Jeffery Turner in the same office of Dr. Scholz, Prostate Oncology Specialist Inc. As the name states that is what they do and they are very good. I have a local MO for administration of treatments but get great comfort in the second opinion of someone who specializes in Prostate cancer. Best of luck. You and all on this site are in my prayers.
George
We're farther north but using the UC Health system.
We don't have the budget to be flying but with being part of the UC system, information is shared so everyone has access to the info.
U C is as fine as any in my opinion.
I was just in looking at the recommended doctors and comparing their stats... The stats seem to lean in favor of who we're currently working with.
I'm right there with you. It really is scary. I have come to rely on this site for grounding and perspective. The people here are encouraging and knowledgeable and can help you understand what should be coming next. I was just diagnosed myself and reached out here in terror and the responses were so helpful. Anyway I just wanted to say hang in there and have faith that you will manage this for many years to come. 
Very good man. We’ve all faced the same terror.. It will get better. If I had found this site when I first was diagnosed it could have saved me a lot of fear and anguish. I’m not saying that there won’t always be glimmers of dark thoughts just don’t get stuck there. Stay in touch . I’ll follow your progress. I expect good results. Do anything you deem useful in your comfort and your recovery.. massage, accupunture , this forum, eat right, keep moving as much as possible. Do not think for long on the worst case scenarios. There is much to be done . There is strength in numbers and knowledge. You’ll find both here..
Sorry that you are here but you will never find a better group of warriors. Yes getting that information that you are Stage Four sucks (it is what I have) but like you said it could of been worse. I had G 8 that went to the lymph nodes. I had surgery, radiation and hormonal treatments that may continue for the rest of my life.
I had to fight to get surgery. Now they are changing their mind about surgery even when it has spread to the pelvic area. It may be something to consider. Here is some information.
urology.jhu.edu/newsletter/...
Radiation with or without surgery may also be an option. It can be done in conjunction with hormonal therapy.
To me it looks like you are a candidate for the Stampede/Latitude treatment of Lupron and Zytiga (with prednisone). After surgery and radiation it is what I am on. Listed below are some references on it.
nejm.org/doi/full/10.1056/N...
You may also want to go with chemo. Listed below is a article that compares Zytiga vs chemo.
ascopost.com/issues/october...
It is scary when you hear that you have advanced cancer. But there is still hope. I just passed my two year anniversary for surgery and I am getting ready for a Caribbean Scuba trip to celebrate. There is no reason that you can not kick that cancer down! However it will be a battle, but one you can win! Hopefully your strongest caregiver will be your husband. Also know that you are part of our family. You will never be alone. After all, people like us we have to stick together!
Well , first. Welcome, second be prepared to cry a bunch a real shocker for me and my wife. Diagnosed August 16 stage 4 with cancer in the lymph nodes,rib cage and Back bone. My doctor went aggressively to work with 6 rounds of chemo. Three weeks apart, a nulaska shot the following day , add a lupron shot and Xgeva shot monthly. When the chemo was done they put me on Xtandi 4 pills a day, and I remain on the Xgeva and started elagard shots monthly . Plus several other things. Keep a stiff upper lip, as my doctor said no one want# to get cancer but there has never been a better time to have it. . Oh and don’t forget the Effexor for the hot flashes and depression . 😜😜😜😜😜😜
Never been a better time. Well ,I guess he’s right. That’s lookin at the bright side.
Better than 10 years ago I suppose...and their coming out with new treatment ideas all the time.
With out hope life is dismal. I pray for sunny days ahead for you both.
My love and I cried like babies for two weeks after my dx. Then she accepted my hand , what a honeymoon it’s been. 3 yrs now. You will probably go thru the entire gambit of emotions while riding with APC. It s an emotional train wreck for many. It has been for me. Now I’m finally getting a rosier outlook concentrating on “The Present” and finding some daily happiness instead of thinking about the doomsday scenario. Start all healthy habits now to better the affects of treatments and help speed recovery. You must fight for yourself , a new way of life for sure, but life still the same. Love each other.......
Thought I'd pop in and give a brief update to those of you that helped me better find my way early on. This last year of riding the roller coaster of my husband's stage lV metastatic prostate cancer PSA of 467 prior to treatment, Gleason of 9 4 + 5 all 12 cores with lymph nodes involved. He continues 3 month Lupron shots, ended his 6 rounds of Taxotere September 6th and his PSA hovered around 30 at its lowest. Hubby just finished 47 sessions of IMRT that included everything from the waist down and we won't have an updated PSA till mid to late March. It's been an overwhelming and exhausting adventure, to say the least.
Now we're trying to play catch up on all the other things that fell through the cracks... eye appointments, my cancer follow-ups, Primary Docs, etc. As well as let him recover better. Right now we don't know where we go from here but we should start seeing the plan come together by the end of March. I know that redoing all his scans will be down the road and then we will learn more about the progress we've made.
Thanks for all your help along the way in this adventure.
💙 Exhausted spouse
stage 4 prostrate cancer 
Stage 4 , Veterans Administration
Prostate Cancer stage 4
Stage 4 Prostate Cancer
Edema with Advanced stage 4
