May ‘19 - Bone, CT, and PET scans identify 2 lymph nodes
July ‘19 - RP
Oct ‘19 - PSA of 24 (start Bicalutamide)
Nov ‘19 - new scans reveal 4 bone mets (Lupron 22.5mg injection)
Dec ‘19 - starting chemo
2020 and on - who knows
If there is a lesson to be learned here, this disease needs to more aggressively treated. Starting with an MRI or scans as soon as the first signs show up. Not this “wait and see or monitoring” BS.
You can say but it took 8 years to get where you are now. But that doest sit well with my 2 kids who lost their mother and my wife 10 years ago to cancer.
I’m sorry if this comes across as cynical but being told you got 3- 5 years really sucks.
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Rondief
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I understand and agree with your point of view that PCA should be detected and treated quickly at first sign of it. Prevention is better than cure. Early treatment is better than waiting and watching it grow . Believe me all is not lost...you are already on treatment
and eat plant based, anti inflammatory foods and learn on this forum. This forum is goldmine of information about PCA. Best wishes.
Thanks Learnall, I actually started reducing my processed food and more plant based over a year ago. I feel better just from that. Yeah, I agree this site is a gold mine. I’ve been following it since spring. I just had to vent some frustration. 😌
Consider a Peloton to work out on....I have been in and out of a gym, jog, Pickleball, paddle board, but the Peloton is the best piece of workout equipment I have ever come across ...it will get you in shape which helps keeping the monster at bay...Blue Skies Sky King and Penny
Thanks Magnus, your point is the point I’m making. Why not start out with the stronger ADT drugs? I understand if the cancer eventually finds a way around it and once that happens there’s nothing else to stop at but why not kick it in the a$$ from the start. This is actually a conversation I need to have with my RO.
I actually just talked with my RO about Zytiga. Since I was given have the shot of Lupron and I am starting Docetaxel, he said they do not incorporate all three (adding Zytiga, Xtandi, or Durolutimide) at once. He said that will come at the next step.
Because I respect your opinion I'd like to keep you up to date.
I just talked with my RO about Zytiga. Since I was given have the shot of Lupron and I am starting Docetaxel, he said they do not incorporate all three (adding Zytiga, Xtandi, or Durolutimide) at once. He said that will come at the next step.
No - you wouldnt take multiple hormonals outside of a clinical trial, and darolutamide has only been approved for non-metastatic CRPC. Did you ask for a biopsy?
It might be worth your time and money to have some genetic testing done on your tissue removed during the R/P or on a new sample taken from a met if possible. There are several new genetically base treatments that are effective but they require you to express the correct genetic factors for them to work..Also, it might be worth your time to make an appointment and visit one of the "Centers of Excellence" like MD-Anderson, Johns-Hopkins, The Cleveland Clinic, Dana-Farber, there are several others.. They will evaluate your case in detail and perhaps point out things the local doctors have missed. You can then come home and confront your doctors with far more information than you have now..Lets hope you get a good response to the chemo...Probably Docetaxel...That can have some rough side-effects..If so, maybe try Cabazitaxel, also called Jevtana, which worked better for me with fewer side-effects...Hang in there and best of luck to you !
Fairwind, thanks for the insight on Docetaxel & Jevtana. I’ll keep that in mind. We discussed genetic testing, samples from the RP are in the way as we speak. I’m considering a trip to Hopkins. I had the RP at Fox Chase in Philly and those guys are great. Thinking about Hopkins or MSK for a second opinion on treatment.
With confirmed cancerous bone mets, you might also ask your doctor about whether or not you might start either of the bone protective agents Zometa (zolendronic acid) or Xgeva (denosumab). If you Google "full prescribing information" plus one of those names, you can read more about them before talking with the doctor, if you wish. (Other variations of these drugs are also given at lesser doses/frequencies to help post-menopausal women delay the impacts of osteoporosis.)
From a practical legal side of things, I found it helpful during the first year after diagnosis to update/review all of my Estate Planning and other documents .... with particular notice to capturing my wishes for the best possible scenario outcomes for all my family members.
From an emotional support side of things, after I was diagnosed as very metastatic about 6 years ago, I found benefits from my attending local face-to-face cancer and Prostate Cancer Support Groups. It was helpful for me to share, vent, "tell it like it is", learn, and, with time, to support others in the group(s).
There are resources out there (and people here) who may share helpful experiences in "talking with your children about cancer". Your family obviously has lots of first-hand experience with that from before, but I'd imagine that it will be different now that you have an advanced cancer diagnosis, too.
Just some thoughts .... If in doubt, Hug and Love those kids, even it it might embarrass them now that they are getting older.
ctarleton, thanks for the info on the bone protestants. I actually did my estate planning (DNR, PA, living will, etc) after my wife passed away, but I need to look it over in case of updates. Thanks again.
Oh, and embarrassing my kids is just one of my many talents 😌
Normally when the PSA hits 4.0 the standard of care is to do a biopsy. Your doctor waited seven years! Now, having said that, your point is well-taken. An aggressive disease like yours (Gleason 8) or mine (Gleason 9) will be relentless. I had my biopsy and RP at age 56 and was Stage IV from the get-go. Earlier interception while the cancer is still encapsulated in the prostate gland is what we need.
Since my RP I have failed EBRT, taxotere chemo, a second round of EBRT, and now ADT (Eligard). Once your cancer is declared "systemic" (progressing despite the ADT) it's indeed time for the second-line therapies like abiraterone. As Fairwind states, you must have a urologic oncologist on your care team. Mine has just ordered a biopsy for genetic marker testing of the current tumor (not tissue from the original RP 7 years ago). This will help inform us regarding what clinical trials are possible that add drugs to the aberaterone (Zytiga).
After that, Rondief, there are a lot of tools left in the tool kit, with many more in early developmental stages. Let's both plan to be around to benefit from these developments, all of which will involve what is called "precision medicine."
When in god's name are doctors going to stop with their "3-5 years" crap? What, they like the sound of themselves proclaiming authoritatively that someone's going to die on the doctor's self-invented schedule? They don't know! Every person is unique, but way too many doctors want to make us into statistics. They should broadcast hope, talk about how quickly treatment is progressing. Instead they inspire resignation and surrender. They're undermining their patients' health with such garbage. They have no standing to say such things. I'd reject that doctor and any doctor who talks that way - I don't want a doctor who has his head up his butt.
I actually had 3 biopsies, 2015, 2018, & 2019 (in 2015, my PSA was just over 5, 2018, was a 6, both came back negative.) He also ordered genetic testing last week.
I have a pretty solid team, a family doc, a urologist, a MO, 2 RO's (potentially a 3rd RO) and all are in contact with each other.
I talked with my RO about Zytiga. Since I was given have the shot of Lupron and I am starting Docetaxel, he said they do not incorporate all three (adding Zytiga) at once. He said that will come at the next step.
I'm with you, I do not planning on leaving anytime soon.
Were your biopsies TRUS biopsies? Done before a MRI? A 1.5 T MRI or a mp 3.0T MRI?
The most accurate biopsies are done in bore using a mp 3.0T MRI. The in bore biopsies aren't widely available. Good info for everyone here that still has a prostate but also for our friends and relatives. If you make it known that you have prostate cancer, other men with concerns will have questions.
Some alternative supps, treatments and diet changes can help. Check with your doctors first.
We men aren't educated enough about "our" health and some of our primary care docs aren't either.
The 2015 & 18 were done without an MRI. The 2019 was done with an MRI (I'd have to look back to see if it says 1.5 or 3.0). I do not know if they were "bore".
They were using some type of camera which identified an "area of interest". The biopsy from that area was positive. The other 12 samples all came back negative.
I hear you, but on the other hand I don't want a false sense of hope. They are just working with the data they know.
For what its worth, I started preparing for this back in 2011 when my family doc noticed my PSA was rising. I realize that everyone is different and treatments effect everyone differently. I plan on being that ONE person that beat the odds.
I'm so glad to see that you are still participating here. We need caregivers like you to guide us through this terrible disease. Thank you...and stay well.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 11/11/2019 7:35 PM EST I salute all veterans today and everyday.
One of the central problems with prostate cancer is that it is not one disease but around twenty variants on a theme depending on the genetic basis of the tumour and maybe other factors that w e do not yet wholly understand.
For instance there are a group of men with Gleason 6 cancers that depending on age and the rate of growth of the tumour can be assigned to watchful waiting where the cancer is observed, sometimes this can be continued successfully for years.
There are other patients that have higher Gleason numbers where hooking the cancer out as quickly as possible is the only thing to do. Some Gleason 10's can have a cancer that appears to be totally confined to the gland and they will log undetectable PSA results for some time after the operation only to find that it will pop up a few years or even longer afterwards.
Most men are treated appropriately but there are men who are under and over treated.
Google "thomas Seyfried cancer " put yourself on 100% plant based (70% -85%raw sprouted live and less cooked food) ( take these anti cancer foods in your diet daily brocolli , brocolli sprouts, kale , spinach, celery, cabbage, cauliflower, bell peppers, mushrooms, green tea, pomogtanates, tomatoes, garlic, onions, leeks, ginger, cayenne pepper, bluberrys strawberries, kiwis, beet root,) Curcumin , tumeric, extra virgin olive oil, milk thistle, read books of Dr Thomas Lodi, Dr valter longo, dr David jockers, Miriam kalamian, dr Dominic d agostino ...allot some time of your life in research some time with your kids love them teach them lessons of life make a bucket list and start completing it.... trust me no doctor in this world can tell you how many years you are going to live....and whatever time you going to live make it worth happy enjoy the life I have seen very healthy young people talking to me today and dies on the next day..... gratitude....I know its difficult but...that's the right path....also watch this videos youtube.com/playlist?list=P...
And don't worry there many treatments are already there to keep you alive For many years and many more in pipelines going to available soon just stay strong and keep fighting...God bless you.
I had similar scenario and was told 3-5, I’m coming up on 6 years and my PSA is undetectable. You can click on my profile to see what I’ve done. I recommend you get with a MO who specializes in PCa and is up to date on the latest treatments. A general MO doesn’t cut it. Good luck, hang tough.
Oh brother. I’m with you , my urologist messed around to long until I was diagnosed stage 4 in August of 16. Lucky ( if you can call it that ). My oncologist hit the monster immediately with chemo and lupron with a Xgeva chaser. Still on the cocktail. But on Xtandi after chemo. PSA <0.05 since chemo. Fighting the monster now not going to accept that 50/50 of 5 years. 🙏🙏🙏🙏🙏 Amen
Radiation may help. It is in your best interest to get someone you have confidence in, a doctor with a track record of success.
Don't give up. There are new treatments that might not be too far away.
Maybe a good read would be about Ruth Heidrich and how she overcame her cancer. Breast and prostate cancer are often referred to as the brother and sister diseases.
Use the best of what medicine has to offer and some of the alternative things. What you feel comfortable adding.
Good thread here, Rondief, and hang tough. At 50, I had PSA of 500, bone mets from skull to ankle, and Gleason 9. Was told I had hopefully 1, maybe 5 years. 3 years later, my PSA is ND for almost 1.5 years (I’ve had or am on most of these drugs, chemo and radiation). Now on lupron, Zytiga, and prednisone. Between the best that western meds, herbs, and diet/exercise can deliver, my goal is to do all I can as the science progresses. You’re dealing with this wonderfully. Peace, man. ✌️
Thanks buddy, just curious, what chemo did they treat you with? My doc has me going on Docetaxel and I've heard the side effect can be rough a few days after the treatment.
Good morning. He did docetaxel and carboplatin simultaneously while I was on bicalutamide. When I finished that, I switched to Zytiga (Stampede and latitude studies had fortunately been published) and Lupron. Insurance balked at carbo at first but he convinced them somehow. He really wanted to nail my psa. I’m CHEK2 also, btw. Honestly each dose got worse than the previous but I made sure to walk every day and rest. And I took quite a few half days off work. So, it’s hard for me to separate the two chemos since they were combined for me. And, honestly, for me, the emotional side of chemical castration was just so much to work on that the chemical aspect of taxotere was a bit dampened. So glad you found this group. I didn’t have it in the early days and I felt so frickin’ alone. But you’re not! 🌞
I am hoping to work during this. I just started this job in September. They know I had a RP and was hoping not to tell them I was doing chemo. Of course I didn't know what I would be needing until a week ago. I guess that's a call I'll have to make once I see how I feel.
I am not sure. Since he is an Ex the communication can be tricky.
Were you getting those nasty DRE screening tests yearly along with the PSA measurements? I mention that because my PSA was only 2.7 when a DRE detected a palpable difference one side vs the other and got me sent for a biopsy. I was gleason 8. This was at age 66, 3 years ago. Good luck with your treatments and sorry to hear about you losing your wife at a young age.
I shouldn't speak in acronyms -- the jelly finger is same as DRE (digital rectal exam)! If I had used my other way of describing it -- the fickle finger test -- you would have known what I meant. Anyway, unlike many, you were well screened.
FYI- I eas diagnosed at age 54, 7 years ago with PSA in 40s, and Gleason 9, with a few bone mets. I am still here 7 years later, although, I just added Zytiga to the Lupron, as my PSA became measureble at my last visit. I am just one of many who have lived past the 3-5 year forecast, including some who have made it to 20 years and beyond. Wishing you, and all of us, the best.
My treatment was a bit different then most. At the suggestion of my treating doc, and understanding that doing so was looked down upon by 2 other famous docs I consulted with, I had my prostate removed. I have no idea if that helped me in any way. I also was treated INTERMITTENTLY with Lupron, which was questionable at the time, and I think is now viewed as being not as effective as continuous treatment for metPC. Lastly, I was given Zytiga along with the intermittent use of Lupron for 5 years. For the last 2+ years I was on Lupron only. But- since my last test showed my PSA became measurable (.08), I was put back on the Zytiga. I did make some changes to my diet, but they weren't extreme. Basically, I just started eating better: more fruits/veggies, no red meat for a few years and now I eat it sparingly. More fish, but not nearly as much as I should. And- I cut out the real bad stuff entirely for a few years and now have it sparingly (i.e. french fries, potato chips, ice cream...). I miss that stuff but what are you going to do. I should exercise much more than I do, but a total knee replacement 3 years ago, (without a great result )along with another weak knee from disc/nerve damage in my back ( for which I had surgery 2 years ago) make exercise difficult. So- eat better than me- exercise more than me- and hopefully you will have a better outcome than me.
Sorry to hear where you are at. And sorry about the wife. Lost mine over five years ago now. I just hate it when young people are robbed of the years they should have had. And of the young people, who suddenly find themselves battling Advanced Prostate Cancer. I've passed my original 2 and a half year max expiration date a few months ago. Still going strong. Don't dwell on 3 to 5 years. Good chance it will be 5 to 10 years, or more. Enjoy each day.
Good for you, that’s what I’m shooting for. Just curious, did you make changes to your lifestyle, diet, exercise, any major or subtle changes? Thanks for the inspiration.
My lifestyle sucks. My stationary bike is stationary. I do need to get back in the saddle though. Am 69 now and don't think diet changes would help much. If I was 49 I probably would check diet out a little closer. I live alone and am too lazy to cook. I am almost on a fasting diet, but still have gained 20 pounds since cancer. Go figure. I am certainly not a role model! Did 8 cycles chemo and lupron and xgeva since day one. Xtandi for 28 months. Psa now 0.1 Have stable extensive bone mets. Lymph node mets not seen in scans (a couple of cycles of chemo and very bad night sweats disappeared, I am sure that was the lymph nodes.) Added celebrex to go with xgeva. Now only take Vitamin D and BroccoMax occasionally. Good luck, and I hope they can knock those 4 bone mets out!
3 to 5 sounds like you're going to jail.... Look at it this way, if those doctors can predict a time frame and be accurate do you think they would doctors?
I offer my condolences regarding your wife's passing from the Emperor of all Maladies. May she Rest in Peace and forever keep her eye and blessing on her two children's lives.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 11/11/2019 7:31 PM EST I salute all veterans today and everyday.
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