I live in Denver Co and found out I have advanced Prostrate Cancer. PSA rose in late 2019, Had a biopsy done, CT and Bone scan shows local not spread. Got a Lupron shot end of April going to have marker done July 7th then on to alot of Radiation at Saint Josephs Hospital in Denver. I'm very afraid, very worried about Prostrate Cancer and the Virus don't like going out or to be around people. Would like to speak with others who are in the same position and treatment suggestion, etc.
Gregor
Sounds like you have a curable cancer. Good luck with the radiation.
Thanks
Hey Pinstripes, how old are you and what was your Gleason score (from the biopsy report)
I'm 68 my Gleason varied some 7 and couple of 9. Psa 4.2 then 6.8 then a couple of 9.8
.
So you do NOT have advanced prostate cancer, according to what you posted. It sounds like you have localized, high risk (I assume) prostate cancer (you did not supply your Gleason score and PSA at diagnosis). If so, a combination of external beam therapy and brachytherapy to the prostate has been found to be much more curative than just external beam radiation.
prostatecancer.news/2017/03...
Your right it's called high risk....brachytherapy is recommended in combo with Radiation by the doctor??? I'm afraid of doing both. I'm 68 my Gleason score was as high as 7 and 9. I feel very scared ......Gregor
Well, the good news is that it's potentially curable with the right therapy. As you can see, the long-term cure rate is 85% with the brachy boost and 65% with external beam-only. This also assumes long-term of hormone therapy. Because the therapy is more intense, the risk of urinary retention is higher with the boost. The brachytherapy part of the treatment is done by an expert in brachytherapy. Unfortunately, there aren't a whole lot of experts anymore. Where are you located? I may know someone I can recommend.
I'm in Denver Co. Do you recommend.end the brachytherapy ? I'm thinking of doing just the radiation? My Dr is Patton at Saint Joseph's Hospital.
I've told you what I know - it's your decision. 20% cure difference, but 17% had long-term urinary retention. I do recommend that you talk to an expert in this kind of therapy. I don't know anyone in Denver, but if you talk to Brian Kavanagh at UC Denver, I'm sure he would know someone there.
Hello Pinstripes,
I suggest that you take Tall_Allen's advice very seriously. He has more scientific understanding of all aspects of prostate cancer than any other person I've encountered on any of the four prostate cancer forums that I have frequented.
I had Androgen Deprivation Therapy (ADT) + HDR brachytherapy + external beam radiotherapy (EBRT) in 2003/2004 for a Gleason 4+3, PSA 10.7 cancer. I'm still here and have had no additional treatment after 2004. I did have the urinary retention problem that Allen wrote about and had to take a drug (Flomax - tamsulosin) for about five months after my radiation in order to be able to urinate. It was inconvenient but manageable and worth it for the improved chance of a cure.
In addition to the improved chances of a cure by adding brachytherapy to the EBRT, you may, possibly, require fewer sessions of EBRT at the hospital. When I had brachytherapy plus EBRT in 2003/4 they only gave me 25 sessions of EBRT compared to the 40 that were proposed if there was no brachytherapy. You'll have to ask your radiation oncologist about what protocols he is using.
I looked up Dr. Patton on the Internet and found a couple of reviews for him. See: healthgrades.com/physician/... Two reviews by non-experts isn't much to go on, but both were very positive - which is better than negative reviews.
Best of luck with your treatment.
Alan,
I completely agree with you regarding Tall_Allen's wealth of knowledge and his devotion to all of us warriors. He appears to have this tremendous database of information in his head since he answers almost every post in record time. You also are an invaluable contributor with your vast PCa expertise. I don't believe anyone can dispute any recommendations/suggestions that you or 'Tall' make.
I want to thank both of you for being here for us!
Ron
Radiation is scary but it's not as bad as you are imagining. I was scared of it also. But you can do this. Even as an old hand at prostate cancer treatments I was afraid of Radium 223 infusions. That is nowhere near as bad as I had imagined it to be.
COVID-19 or not you have a good chance of knockin' this out of you.
I agree with Magnus1964. We often fear the unknown. I'm doing it myself with chemotherapy. Since I've been able to kick that can down the road for so long, I'm now dreading the eventuality of it when other options are no longer available to me.
As far as Radium 223 dichloride (Xofigo) treatments are concerned, I know, for men who've had previous chemo, their systems seem to have a harder time staying in the acceptable range for white blood cells and often can't complete all six treatments. For me, it was a walk in the park. It elevated my blood pressure while I was having the infusion but they soon got me back down to a safe level and sent me on my way. I also enjoyed the break from ADT (no hot flashes, yay!!!). BTW, If you're someone who marvels at the mechanisms of cancer treatment and like to research, the science behind Radium223 is absolutely fascinating! talk about doing WAR against cancer!
Hi Gregor,
Any cancer diagnosis is scary. I finished 39 sessions of external beam radiation in April. I had been diagnosed with locally advanced Prostate Cancer. As I understand it, locally advanced prostate cancer is curable, whereas advanced prostate cancer is not (currently).
I am also on 3 years of Androgen Deprivation Therapy (ADT) consisting of 12 weekly injections of Zoladex (Goserelin), plus 1 50mg tablet daily of Casodex (Bicalutamide) given than my PSA began to rise again 3 months before I had the radiation treatment.
That is the Standard of Care (SoC) available here in Ireland for high risk locally advanced disease assuming that surgery has been ruled out, which in my case it was.
For the radiation, each day I had to drink 2 litres of water, have a full bladder and empty bowel before treatment (they provided laxatives). There was a planning pre treatment session Including a CT scan with contrast.
Overall the radiation sessions were easy, except that it was a130Km round trip each day, which was very tiring. So if you need to travel a distance for treatment, having some help with the journey especially towards the end would prove useful.
With regards to Covid19, my treatment hospital had the greatest number of Covid19 patients in the country at the time of my treatment, and I know of no infection getting into the oncology radiation centre.
I wish you the best on your treatment journey, I’ve found excellent help and support here.
Hugh
I recently finished radiation and must say I was more put off, not sure scared was the right word for me, of starting ADT. Neither was close to what I expected but it is clear now we all react differently to treatments. Hopefully yours go well, in my opinion they are nothing to be scared of. Eat well and stay physically active no matter how you feel, if you can. Best wishes on your journey it is just starting and will be a long one so take heart and don't be afraid. If you let them good things can come from this. At least that is what I have found. This forum is great but also look for support from family and friends and a local group if you can find one.
Gregor , jump on this and cure yourself and get back to no fear again . Fear drives stressor hormones that advance cancer’s footing . The sooner you take action the better. No looking back . Treat yourself and others well and you’ll survive this . Good luck
Fear is normal, but I wouldn’t make my decisions based on fear. Every decision has risks that only you can assess for your situation and values. Once I concluded we are all going to die of something some day, I let go of all fears.
Death from prostate cancer is the biggest risk I’ve personally chosen to avoid since seeing it happening to another person. Very glad I had prostatectomy, two rounds of external radiation (each 37 treatments), and chemotherapy ASAP on each of my three occurrences. Now 69 and doing great with undetectable PSA. First diagnosed at 54 with Gleason 4+3.
It sure is normal. Great advice Ron.
Listen up.
Your going to make it just fine.
Follow this site and ask any question.
The Standard Of Care will guide you.
It will just take some patience and self education.
I wish you the best.
2Dee
It hasn't spread that's comforting
What's your Gleason score ?
Today they can take the whole prostrate with a robotic operation
You are gonna be find Pinstripes
We all go through the fear stage
You are in the right group of people
Speak to Tall Allan
Nakrats and many others here that are quite knowledgable
Hey Pinstripes,
I am in Salt Lake City, not so far from you. I was diagnosed 17 months ago, had very similar Gleason and PSA scores as yours. I also had a very high risk Decipher score. I was and truthfully still am scared but I am better informed now, in part thanks to this forum. I had 28 sessions of whole pelvis external beam radiation plus HDR brachyboost. I have been on ADT since diagnosis, initially Lupron plus Casodex, then just Lupron for several months, currently Lupron plus Erleada (apalutamide). My PSA has been <0.1 since I finished the radiation a year ago.
I totally agree with Tall Allen that you should do the brachytherapy. This involves two days (not overnights) in the hospital, about two weeks apart, not unreasonable to travel to Salt Lake City for if there is not a good option for this in Denver. For brachytherapy here I highly recommend John Hayes, at Gamma West. The brachytherapy comes after the external beam treatments, at least that’s how it was for me. Get started on the ADT and external beam series and in the meantime consider having your biopsy reviewed by a second pathologist elsewhere, such as at Johns Hopkins. If the second reading concurs with Gleason 9 I would definitely proceed with HDR brachytherapy. Hang in there!
Pinstripes, I am in Denver as well. My journey began 22 years ago. It is documented in my profile. I also had External Beam Radiation at St. Josephs and then had to go to Seattle for my brachytherapy because Denver had not yet started doing it.
I had 10 and a half years of seemingly "cured" with very low PSA, then it was found I had mets on my lungs. Here I am 22 years later and though impacted, I am alive and have enjoyed my life.
Best second opinions in Denver are at Anschutz in the GU Cancer Center as mentioned by another on this site.
Brachytherapy was no problem. The external beam therapy caused me to be very tired by the end of the sessions but an afternoon nap took good care of that.
With regard to Covid, SJH has done a remarkable job separating the Covid from the non-civid patients. I recently had to have my gall bladder removed and I was extremely impressed with the separation they used between "clean" patients and the virus patients.
The fear you are experiencing is common to all newly diagnosed with cancer. It is sad to me that there is not an active prostate cancer support group in Denver. was one at CU but it was not what I needed at the time. I found great support from a Men's Group I belong to but it is not cancer specific and or course from my family and church. Men need to talk about the disease, the side effects of treatment and more importantly your feelings. You are in the first stages of a grief reaction. I hope you have a spouse/partner/close friends with whom you can share openly your fears and your journey.
Hi, you would recommend Brachy treatment? I'm worried about doing that part. I'll get a 2nd opinion from Anschutz GU Cancer Center here in Denver .
At the time I was diagnosed the only alternative was open surgery(no robotics). It was full of serious irreversible side effects. I chose brachytherapy to get a good result but preserve continence and potency as long as possible. I had a spinal anesthetic so I recovered recovered quickly from the procedure but I was only 57 then and in good physical condition.
In 1996 I had 27 EBRT treatments followed by Bracy and was on hormone therapy for 8 months. 15 years later I had BCR and for the last 9 years have been fighting this monster. Psa was 95 and gleeson was 7. I was nervous at the beginning of EBRT but after 2 sessions it was just boring. Seed implant was very easy. In/out the same day and no side effects. I consulted with many Uros but none wanted to do surgery because of the 95 PSA. My current PSA is less than 2.0 but rising slowly and will probably start chemo next month. Still no detectable mets. Not to shabby after 24 years.
Glad your doing so well! So the Brachy combo wasn't difficult, easy in and out! How long, what was procedure like?
I signed in at the hospital at 9:00AM, changed into a hospital gown, had the IV inserted, talked with RO, Uro and anesthesis for a few minutes then was taken into operating room. Thirty minutes later I was in recovery room. Up to this point everything went very fast but now I had to lie there for a few of hours. then a two man team came around to check on me with a geiger counter checking radiation levels at various distances from me. I was cleared to go home. If you need any additional info just let me know. Please excuse any spelling errors.
Mike P.
I live in Denver and have been treated here for 5 years. RRP, ADT and EBRT. So has my brother. Also had consults at JH in Baltimore, and UCLA and City of Hope.
Highly recommend Dr. Pew and his team at Anschutz/UCH for RadOnc. Dr. Eric Gross at the The Urology Center of Colorado (TUCC) is also excellent for RadOnc if you’ve already made your treatment decision.
Hi; what does RRP, EBRT, ADT stand for? I had Lupron injection 4/30/2020. Did either you or your brother do Brancy? I'm still deciding what to do. Is there any PROSTATE group in Denver?
Do you have contact phone numbers?
Hello pinstripes. I am also in Denver. Dr Patton did my radiation and Brachy therapy at St Joes. He is a good man and doctor. He has been the best of any Dr on my team. If you want to chat you can message me.
Welcome Gregor,
We all have same concerns,
We feel your fear and will be here for you.
Hope you are physically feeling OK,
Take a day at a time.
Hey Pin. Alan and Tall Allen have given you great advice. Please consider. In 2003, with a Gleason 7 (4+3) my primary treatment was Brachytherapy and IMRT. I was at the fore front of what they call Brachy Boost.
Talk to your RO about the combination. Also talk to him about micro-metastasis. When I did this, there was a 92-94% success rate. The 6-8% failure rate is due to unseen microscopic cancer cells entering in your lymphatic or vascular systems.
Who ever you use, see how procedures that they have done. At the time my Brachy RO had about 2600 under his belt and the IMRT RO was in academia and helped develop the IMRT machine. He was at a major medical school doing research and instruction. All of his patients were in his clinic at the associated medical school hospital.
You can do this. My watchword was simple, “Kill the little bastards.”
Gourd Dancer
You are Gleason 9, high risk and difficult to cure..But the Brachy / EBRT combination is your best bet..Doctors who don't do Brachy seldom recommend it. Find a doctor (a radiation oncologist) who DOES do brachy and talk to him / her about it. I live in Denver too and 10 years ago when I needed it it was unavailable here..Not so anymore. TUCC is good as is CU-Anschutz. Be sure your insurance is onboard before you commit to any treatment..
As with any complicated, tricky, treatment, success with Brachy depends largely on the skill of the doctor performing it. Find the best doctor you can, even if you have to travel . Again, be sure your insurance travels with you..I suspect today, you can find a top-notch doctor in Denver..
Pinstripes,
Ironically your susceptibility to COVID-19 has been reduced by your prostate cancer and the injection of Lupron. An Italian study released a month or two ago demonstrated that there is a protective effect of ADT for men who have prostate cancer.Search on Google and you will find a summary of the study. We have also seen numerous posts at Healthunlocked dealing with this study.
I’ve had five occurrences since 2011, at 66, starting with prostatectomy, and 36 sessions of radiation 2 years later. Gleason 9. 2017, metastasis to cranium, started Lupron. No side effects, and psa dropped to nil. But after a year rising psa -> radiation. Psa dropped again, but rose later from metastasis to tailbone -> more radiation, with continuing Lupron. Psa is creeping up again, so we’ll see. I have been asymptotic throughput it all, and none of the treatments have been awful.
I was freaked out scared wo any close family or support. I waited 3 months to have my RP. Lost 20 pounds, found a loving yoga teacher, and support came.
I'm 16 months post RP and PSA non-detectable, feel great. Was Grade 2 or G3+4.
Tall Allen is an excellent resource. I like to listen to Scholz on PCRI. He really calms me down about survival and quality of life.
Stay upbeat and proactive my friend.
I don't normally do this, but I recommend you get a copy of my latest book on PCa available from Amazon. You will find it calms your anxiety and offers many options that are worthy of exploring. An ABC of Prostate Cancer Today - 3rd Edition.
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