Hello all - just starting in this scary journey. I am 48, so starting off relatively young. No family history of prostate cancer. I was having issues with always / suddenly / needing to urinate. This led me in to my gp.
In June, had a blood test come back with a PSA of 105. Had an appointment with a urologist 2 days later. 2nd blood test confirmed the number.
Next up was a biopsy. Gleason score was 10, and doctor indicates each sample indicated cancer.
Bone scan and CT came next. Bone scan was clean, but CT showed enlarged lymph nodes near prostate.
Doctor started me on Trelstar and Bicalutamide. He also prescribed Venlafaxine to help with the hot flashes. (This step happened last week)
My next appointment is in September to see if the PSA numbers have dropped at all. He said that we would discuss further treatment based on what the numbers are doing then...
Just looking for ideas for what I should explore for treatments / what questions to ask at my next appointment.
Thank you!
Written by
TrashPanda72
To view profiles and participate in discussions please or .
Hi Magnus1964, you give great hope living 27 years with advanced prostate cancer! I was diagnosed with gleason 9 and psa of 162 at age 47 (2018) . Got my prostate removed but it had already spread to the lymph notes. What has been your sucess formula for surviving for 27 years?
There's a lot of talk on this list of doctors prescribing multiple treatments at the same time, prescribing a drug for short duration then switching to something else. I do understand the logic for some of this, but I am a big believer in monotherapy. If you are on a drug, milk it for all it's worth. Then go on to the next.
Second, I am a believer in supplements. Particularly vitamin D3. I also drink a lot of Japanese green tea.
I became a vegetarian a few days after being diagnosed. With what is fed to domestic animals, antibiotics, growth hormones etc, these cannot be good for Pca.
I don't look at a vegetarian diet or green tea or vitamin D3 as cures. Every thing you do for yourself to slow the cancer becomes a change in lifestyle and chance to slow the progression.
If you don't change your ways it's like having lung cancer and asking a doctor to cure you while you still smoke.
Watch that venlafaxine. It worsened my hot flashes, hurt my balance, took my eye site from 20/30 to 20/300, Got me pulled off the job and wrecked my driving skills. Had to work hard with company med dept and local management to get back to work a month after discontinuing that drug. Added it to my drug allergy report to Drs.
It kept me awake for the 1st 3 days - but after a week I seem to have gotten used to it. 1st couple of days the hot flashes were terrible. I am down to 1-2 a day, and they are tolerable... hopefully that means it is working as intended!
Hope so. I was on it for more than a month before my eye sight started to deteriorate. Then double, triple, quad vision and eyes wouldn't work together. Balance just slowly worsened. Hot flashes just stayed triple what they were before start.
We are here to help you on your journey patience and prayer will get you thru...there is a lot of expertise and experience that will guide your path and the best humor to enjoy!!!!
First, sorry that you’ve become a member of this club. It is doubtful that you’ll hear much about proton therapy as the primary treatment of your cancer, but you should know about it before you decide upon surgery, radiation or alternative treatments. I had a RARP after biopsy confirmation of G9/10, but I was 72 years old, so the decision was easier for me than it will be for you. I would follow the same path that I’ve chosen. Now, I plan to use proton therapy for adjuvant radiation therapy (ART) because some PCa had escaped my capsule and was found in the margins after surgery. This is common with surgery, and the follow-up treatments are confusing but they can be sorted out. Good luck, and use this website for your beginning source of information. These guys have been down the same road were you’re going.
If all your metastases are in pelvic lymph nodes, you should discuss whole pelvic radiation with a radiation oncologist. If you can, find a radiation oncologist who specializes in brachytherapy. It is possible that whole pelvic external beam radiation with a brachytherapy boost to your prostate and 2-3 years of hormone therapy may be curative.
TA: I thought there was a recent study that showed that 36 mos ADT was not superior to 18. If that's the case, what the rationale for being on ADT a minute longer than 18 mos?
Welcome to the group brother .... you are younger than most here ..... but the up side is that you are strong and vital and can fight it well. Sounds like you got DXed early enough to hit it hard for a possible cure. I think you have every reason to be optimistic in that respect. Most of us are stage 4 and have no expectations of a cure . Lots of very knowledgeable and experienced guys here that will be glad to lend their expertise.
Some humor too , at times, to help things stay on the lighter side. Once again welcome , good luck with your journey.
Hi there.. And so sorry to hear you join this club. Your story is close to a copy of mine. 7 months ago (45 years old, just turned 46 four days ago), I got the same diagnosis as you.. No other cases in my family... nor breast cancer on so on.. So I just got it.. Had urinating problems (age 44).. doctor took several months before initiating a urinating 3-day scheme.. and after that... a PSA.. which was taken.. 88.. Then things went fast.. biopsies.. all 12 gleason 4+3 = 7.. cancer had broken out of the prostate gland and spred to several lymphs, bones and ribs. I got on Eligard (=Lupron) and Bicalutamide (first month) and after 1 month also Zytiga+prednisone.. After 3 months I got RapidArc radiation to prostate and also the three bone mets in the pelvic area.. That's now 3 months ago, I ended radation and still get Eligard and Zytiga+prednisone which I will continue to take until PSA rises... My PSA steadily dropped from the 88 to now 0.47.. I got PSMA PET/CT scan on diagnosis and also one 2-3 weeks ago.. It showed that most mets were reduced.. a few gone.. one the same and one increased in activity..... Oh forgot to say that I took IVC 26 times during 2.5 monhs until I started radiation (they wouldn't radiate if I took high dose vitamin C)... so that's my story... I have all the side effects too.... no libido, impotence, hot flashes, fatigue (think after radiation), can't smell my sweat, weigh the same but my jeans don't fit me anymore (my belly got big.. all fat is now there and can't go away), my hair under arms and pube hair stops to grow.. my bald spot on top of my head started to grow hair again... it is SO WEIRD how my entire body changes !!! I was on top of the busy years with 3 kids of 4, 8 and 10 years old.. a good job as a scientist in a medical company.. From one day to the other EVERYTHING changed... But I am stable right now.. treatment is working.. but man... it is a full time job to have advanced PCa... it takes a good health to be serious sick !!!
Feel free to write if you want to know more details....
NB: Danish doctors will not do more at this point.. they wait to see PSA rise.. I am therefore now trying to get a 2nd opinion from a specialist from another country (Finland as I have Danes in my network who did that too).
My journey is very similar to yours but I was a bit older at 56. I found out on a random PSA test at annual wellness checkup, neer had one before. PSA 156 last June. So far have been on Lupron since Oct and Zytiga since Nov. Finished radiation on March 2020. PSA is currently <.1. My treatment was "curative in intent" due to only having enlarged lymph nodes like yourself . I do have some of the side effects like no libido but married 27 years so that does matter much. Loss of hair everywhere but my head which doesn't bother me. Some bloodwork issues that I finally decided to quit worrying about because there's little I can do as all are pretty assuredly meds. No fatigue, no hot flashes, no issues urinating. I stay very active and eat a mediteranean diet for the most part. Keep in mind you're in this for the long haul as far as answers and outcomes. This forum is a great place for information for diverse views and support. Welcome aboard.
no expert on treatments but i do think a second opinion at a national cancer institute and a consult with a genitourinary oncologist is beneficial. - along with your urologist.
Hi T.P. welcome to the club none of us asked to join . in my journey the treatments available to us are many and always new ones on the way. My advice to you is to do the research, find the best medical team you are the most comfortable with, and stay positive Cancer hates that. The medication you will need to survive are definitely life changing but the key word there is " Life" . You have made one of your good decision all ready by joining our forum there are many Brothers here that have become just that Brothers. Never give up never surrender. Leo
Sorry to hear of your diagnosis. And like everyone else says welcome to the group none of us wanted to join. My story is similar to yours. I was 46 had frequent urination PSA of 43 and my 12 biopsies were positive Gleason score 9. Scans did show metastases to my ribs one in my spine and pelvic area. The next month was the worst month of my life feeling like I had a black cloud over me. Then I went to duke university medical center, thankfully I live close to there about an hour and a half away and have been treated with hormone shots, Zytiga first then switched to Xtandi after my liver enzymes were elevated and I had radiation done locally to all my spots. Thanks to God I am still able to work raise my three kids and I drastically changed my diet which I believe has helped. I have had issues of more fatigue lately which I actually posted recently but it does not stop me from running and lifting weights and working. Some people swear by changing to a plant-based diet others think it is a waste of time but there is no doubt eating a healthy diet more plant-based influenced will help you feel better and control your weight along with exercise. I am actually in the best shape I have been in since high school but you must pace your self. I always get second opinions and this forum is great but take everything with a grain of salt . Make sure you take time each day for yourself, quiet time maybe yoga meditation devotion prayer along with getting enough sleep exercise and eating healthy will go a long way . For me it’s every morning when my kids are still sleeping, because of the coronavirus and no school my kids sleep late so I always have the mornings to myself .
There is an Australian paper on PSMA PET/CT for primary staging. The gentleman from Denmark already mentioned it here. A family friend in Berlin biopsied GS 8 took it recently prior to deciding on initial treatment.
Greetings TP, Well we know you're a 48 year old male. would you please be kind enough to tell us your location? treatment center(s)? doctor's names(s)? Thank you!!! All info is voluntary but it helps us help you and helps us too....
I live just south of Atlanta Ga. My urologist is Dr J Libby. Once we see how my PSA level changes, I will go up to Winship Cancer Institute at Emory Hospital.
Thank you for your quick and detailed response. You may wish to add that info to your home page bio (copy and paste) for future reference by you and by members.
You're a young whippersnapper who has great odds in being around for a very very long time. We all have gone through the mill regarding our diagnosis, but remember Pca is a slow growing disease and new meds are being introduced almost on a daily basis. So take a deep breath and live your life. Stay with us and keep posting.....
I'm sorry to hear of your serious diagnosis, especially at such a relatively young age. Here are my thoughts on the matter:
First, your doctors did a good job. They took quick action. Hopefully, the Trelstar will stop metastasis for at least the near term future and give you time to plan your full response.
Second, I'd look for new doctors to take over your treatment, doctors who specialize in prostate cancer and keep up with the latest research. The guys you saw sound good but cancer is a very serious disease and, in my humble opinion, should be treated by specialists. If your present doctors aren't specialists in prostate cancer (a urologist can be a specialist, but usually isn't), it is not at all disrespective of you to look for specialists. You may be able to get recommendations here. You may also get help from the National Cancer Institute's list of Designated Cancer Centers. See: cancer.gov/research/infrast...
I would think that the most important kinds of doctors to look for are a radiation oncologist (as per Tall_Allen's always well informed recommendation) and a medical oncologist (i.e., a doctor specializing in drug treatment.) I'm not sure that a urologist, i.e., a surgeon, will be best for you, but the urologist you consulted may be able to give his opinion. Ideally, you may find a treatment center where your case will be reviewed and discussed by multiple specialists of all types.
Third, additional diagnostics may be appropriate. I'm thinking of either an MRI or a PET scan, of which there are multiple types. It may be that these more precise scans will give your docs more insight into whether local (e.g. radiation) or systemic (e.g. chemo or Zytiga combined with your Trelstar) is going to be best. The big cancer centers like on the NCI list may be best at providing you with additional testing as well as good specialists.
You're at the start of a long and difficult journey. Everyone here will be rooting for you.
TP: one option you should explore is HDR-Brachy + IMRT + ADT (as mentioned by TA), especially if your PCa is contained to the prostate and nearby LN's, i.e. stage 3. There are many good discussions on this forum about it that can be found, and see my profile to see a typical progression of this treatment path.
Trash, enjoy your life! Whether you have 4 days or 40 years make every day count. There's lots of trucks and buses out there, prostate cancer isn't the only way to go! LIVE EVERY DAY LIKE IT'S YOUR LAST👍
Welcome to the group. You have a LOT of options. Seek out experts in the field. Get a couple of consults with centers of excellence. Do your own research of course. At your age you will need multiple treatments to hit it hard and push into durable remission. Good luck!
You should contact Emory sooner rather than later. They have a trial of an advanced type of scan called PSMA PET. This scan can determine which lymph nodes have cancer with more precision than the ct scan. I think they want to do it before your psa goes down too much. The advantage of the scan is that when you get radiation they can zap the nodes that have cancer with extra radiation. Here’s the contact:
Emory University Hospital / Winship Cancer Institute
Contact: Ashesh B. Jani
Phone: 404-778-3827
Email: abjani@emory.edu
You should call them right away.
I was in a similar trial at UCSF when I was diagnosed with Gleason 5+4=9. The PSMA PET scan found 10 positive lymph nodes. I had HDR brachytherapy and external beam radiation, including radiation to each pelvic lymph node (Whoke Pelvic Radiation) plus an extra 33% to the nodes with confirmed cancer. I had 2 years of Lupron plus Zytiga (and prednisone). My PSA became undetectable and is still undetectable 5 months after finishing the 2 years of Lupron/Zytiga. There’s a chance this treatment is curative as Tall Allen pointed out, though no one has told me how high the probability is
The scan won’t work if you’ve been on Trelstar too long so you should call the contact today to see if you can still get the scan.
You have had a lots of great responses here. My journey is different Stage 4, PSA in 2012 was 71, with 4 bone mets, now on Zytiga, and my PSA is undetectable for 71 months.) But with Advanced PC, I most strongly recommend go straight to the experts in PC now, Thank your Urologist, but move on. Emory University Hospital / Winship Cancer Institute sounds great for you!
Listen to your lead Oncologist, and on the side, Tall Allen he knows a world of great advice. Many others here got similar stories to you, several great great stories here. Let them assist. Listen ,l earn be your own best advocate, and above all keep the faith that you can live on many many more years with treatment, albeit it will be many not too desirable side effects. I've learned to live with them, Your health comes first, and your family. Don't put too much into work, it will wear you down. Keep posting,
Ok - finally got my appointment set. My consult with the prostate cancer team at Winship Cancer institute is set for July 31st ( 1st available date). It is set up with Dr Pattaras. The nurse Navigator said we will go over everything that has happened up til this date, then come up with which direction to head into the future. I will update again after the consult.
My dx was similar to yours but my lymph nodes were not biopsied, CT scan showed they were enlarged. PSA 156, bone scan clean. Put on Lupron, Zytiga w/ Prednisone and radiation after 2 months approx. Doing fine so far and PSA <.1 so just living/loving life 3 months at a time for now. I was told after 24 months I stop all drugs and see what happens. Since I am a high PSA producer I should know pretty quick if the treatment plan worked. I wish you the best. You found a great place for information and support, welcome.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advanced Prostate Cancer Alternatives
Advanced Prostate Cancer Treatment
Radiation for Advance Prostate Cancer?
My brother has advanced Prostate cancer
Advance prostate cancer.
