Hello, diagnosed with prostate cancer in Jan 2020 with a Gleason 9. Had RP in March 2020 with a T3b tumor. Now waiting on 1st post op PSA to determine next steps but oncologist said we will hit it very hard with chemo and lupron and then radiation regardless of 1st PSA so he can give 5-10+ years.
Prostate Cancer: Hello, diagnosed with... - Advanced Prostate...
Prostate Cancer
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Peppertree602
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I hope you receive the best news possible given the circumstances.
Talk to a radiation oncologist - he may have a different perspective.
I like your doctors attitude . Knock pc’ s block off. But a second opinion couldn’t hurt .Either way live well and love life . Welcome to the club of which no man wishes to join. Some of our fine minds here know as much if not more than some doctors . You can ask anything and others can answer from experience., Scott
Same metrics here, RP 11 months ago. Not doing anything more as long as my PSA remains low (0.02) Was testing monthly, but now with the confinement got behind schedule. Get your first PSA at 5-6 weeks after RP and then monthly.
JPnSD in reply to
Usual recommendation for post RP PSA is 8-10 weeks. Gleason 9 and stage 4. RP 8/2019. My 10 week was .01...and Jan and April have been .05. My Uro and MO recommend quarterly. Surprised at your frequency. Where r u located?
in reply to JPnSD
As we have witnessed in this thread, high risk can invoke two policies :
a) "use every tool in the toolbag"
b) "judiciously utilize different treatments if it (PSA) starts going up"
I stand with the later which necessitates an early and conclusive detection, hence the monthly tests and you will be further surprised to learn that I use two different labs interleaved for filtering out noise and errors.
Your Uro and MO are the typical kind of what I call "binary" doctors, i.e. three months indiscriminately regardless of patient's risk (one period fits all!).
Doctors here in southern Europe are not different than their worldwide counterparts, but I am an "analog" person and being an engineer know much more regarding sampling theory and measurement errors.
I am my own advocate.
JPnSD in reply to
Thank you for your response. Tough working through the maze of conflicting information. I appreciate any insight.
in reply to JPnSD
Since you "appreciate any insight" please learn and enlighten your doctor too, that the first PSA test time should be somewhat reasonably judged and not be adopted as some dogmatic number.
PSA has a half life of 2.5 to 3.5 days. Usually it is taken as 3 but for a worst case calculation we will assume 3.5. If a patient had a PSA of 10 just before surgery, the decay of this pre-surgery PSA, provided NO post surgery PSA is added, (aka undetectable stage) shall start halving every 3.5 days. Getting from 10 to just less than 0.01 takes 10 halvings (2^10=1024) equals 35 days.
That is the reason for I quoted 5-6 weeks. Reverse engineering your 8 weeks would add 6 doublings equaling to pre-surgery PSA 640!
You also understand that in your personal case you are completely in the dark regarding your PSA dynamics.
August RP,
10 weeks later (late October or early November) 0.01
January 0.05 (incredible rate of rise)
April 0.05 (miraculously flattened)
in reply to JPnSD
TMI . It’s easy to overload .. take time out each day to not give pc a thought . You will do what is best for you ..
thanks for thanks for the comments. 1st PSA is on May 6th. Also I met already with Dr Coleen Lawton a radiation oncologist in WI and she supposedly it very famous and a pioneer in prostate cancer field. Then getting another opinion at Moffitt in Tampa (May 11th) because my good friend (cardiologist) said they are a top 5 cancer clinic. Finally considering going to Dr. Kwong at Mayo who I heard is extremely highly thought of for a final opinion. I really want to good info before doing next steps.
Check out the NCCN Guidelines. I was GL 9 and Stage 4 RP 8/2019...10 week PSA .01 and Jan and April .05. Both Uro and MO suggest watch and wait at this point based on my PSAs. Side effects for each treatment can lower quality of life. Please keep us posted on what you might learn from your consultations. Much appreciated.
in reply to Peppertree602
Very good .!
Why your doctors are in so much hurry to do so many treatments WITHOUT even knowing your PSA level ?
If your PSA is already 0.2 or lower...you can wait and monitor it and if it starts going up..you can judiciously utilize different treatments in future. Remember, every treatment has its side effects so its good to avoid un necessary treatments. First thing first..PSA, ALP and imaging scans.....
ALP?
ALP= Alkaline Phosphatase ....it is a marker for bone turnover. If ALP is going up higher than its normal range..it indicates that bone mets may be growing.....(if Liver enzymes are normal)
You look like a young guy. When I was diagnosed at age 54 with Gleason 7, I decided to use every tool in the toolbag, and I’m glad I have. Pay no attention to guys who go beyond their own personal experience and try to tell you what to do. Your docs have 1000x more accountability.
good advice!!!
Two issues I don't see mentioned so far, which might warrant discussion with your doctors:
1. I have read that side-effects of ART or SRT are likely to be more severe and/or longer-lasting if radiation treatment is done too soon following RP, so that in that regard it is best to allow time for healing from the surgery first.
2. I have also read that if ART or SRT is called for, in some cases ADT (before, during and after, I believe) might be beneficial, and that the following can figure into the decision whether to include ADT:
a. The level that post-operative PSA has reached
b. Results from genomic testing of samples of the tumor removed in the RP.
Best wishes!
I am assuming we are talking about treating tumours. I was also G9 with a Dx staged as T3B. I got full radiation and ADT treatment. I was 'node positive' meaning there were a few hot spots that were treated. That was in May of 2017 when it all started. Today, I'm doing well on an ADT holiday, which I hope lasts a long time.
Hopefully, for you, 5 - 10 years is on the table. I would think that it is certainly possible, but guessing how much time we have left is not the best way moving forward. One day at a time is much easier to manage in a very positive way !
This is a quickly changing area so keep on top of it. So called "Standard of Care" evolves and may not reflect newer studies. Yes, others's personal experiences are only anecdotal. Not sure I agree with the writer's contention of "1000x more accountable.". To whom? would be my question. They do not have to live with the side effects of "hitting it hard and fast.". You will have to live with those and they can be bad. Glad you are seeking alternate opinions.
I was Gleason 9 in 2012. RP and 21 chemos and Lupron, Zytiga, Xtandi since. I’ve beaten 2 death predictions from the docs so far, still kickin. This thing isn’t the death sent it used to be. You will likely beat that 5-10 year projection.
Peace
I hope the best for you i also have stage 4 prostate cancer I did raidiation for a month on my pelvis and chemo for 9 months I was given 6 months to live in 2018 and it’s now 22 months later my g score is 9 and I have become drug resistant so now I’m on hospice I’m only 46 I pray they find I cure for all of us god bless all of you this prostate cancer is hell.
in reply to Cancer46
Dam guy! Starting out with pc at 44 is one hell of a hit to take. I felt early to the party at 53,five years ago now .. Hang in there .. welcome to hu . I believe in the power of prayer also..
How are you doing now? I wish all the best to you!!
Twelve years ago I had a RP. Pathology was the same as yours, T3b. My PSA immediately after surgery was undetected. But by 12 months it started to tick up. Before it reached 0.2, I had already consulted with a Radiation Oncologist so I went in for about 35 sessions. I've now advanced to the hormone stage.
It's a long dance.
Never give up your optimism and determination. They both will be good friends along the way. The reality is that you are not on a timetable. PSA tests are simply road signs along a journey that will redefine or define the man who are. You may live a day or decades just like every living soul on this world. Don't concentrate on the race, make peace with the place.
Hello and welcome aboard. Have you done Bone, CT, or PET scans to see if the PC metastasized to the lymph nodes, bones, or other vital organs. In my case I was diagnosed, in Nov 2019, with PC G9 that metastasized to the regional lymph nodes and both my urologist and oncologist determined that RP or radiation will not benefit me and put me me ADT (Lupron+Erleada). My PSA number dropped from 65 to 0.2.
I suggest you do one of the scans to see the extent of your PC. I wish you the best of health in your journey to beat this awful disease.
PET & CT were negative as was the MRI but ended up seminal vesicle invasion so MRI missed that unfortunately. Talking to all the various docs they point to the STAMPEDE as a possibility but all are saying lets see what the 1st PSA says
We are in the same boat. PSA tomorrow
I'll bet your radiation onc will have a different recommendation. I'm guessing your not in the U.S., because I've never heard of anything like this. Here, if you don't positive margins, the SoC is to wait until the PSA rises before further treatment, regardless of the Gleason score and the pre-RP PSA.
November of 2015 Gleason 9 ,12 cores...RP + Proton, now Lupron Xtandi,,,feel great,,MD Anderson and Duke Cancer are my treating facilities...they have never said this 5 to 10 year stuff...I have currently a commercial pilots license and feel great..I do own a Peloton and lift....plus a ton of other activities....eat pretty clean, .....Second opinions are very good and I feel from a teaching hospital to me is wise...but everyone has their own viewpoint...anyway the guys below have really offered good advice.....Blue Skies, Sky King and Penny (woof)
Sky King and Penny, fond memories.
Wonderful to hear!! My father has G-9, did you have mets?
Hi, I had nodal involvement....later two tumors that were successfully dealt with proton radiation at MD Anderson. So far after two Axumin scans no mets seen. My PSA hovers around 4 . I am currently in the process either building a new house on my property or a redo on my current one...Good friend is a custom builder...I am going to load up a motor home and take Gracie ( woof) and my peloton on a long cross country to stay out of their way....Reason for bringing this up? I plan on holding out for the big cure......I hope your dad does well...get his mental and physical side in a good place and everything moves smoother .....Blue Skies....
I had my RP in March 2019.
I would get a second or third opinion on any follow on treatment. Heck, my colleague's dad diagnosed with Stage 4 with pelvic metastatic cancer. He's responded wonderfully to treatment. 9 years later and walking 5 miles a day and sniffing his wife's underwear.
Your odds of living beyond 10 years are high. The mortality stats are from 10 to 15 years ago.
Hit it hard so you can live for years.
Thats the right approach, hit it hard. I also hit it hard with chemo and lupron when diagnosed 37 months ago. I'm still here and feeling good and doing whatever I want. QOL is good. Maintain that positive attitude.
Nick
Hi.
I was 53 when diagnosed in February 2012, numbers similar to yours. Had RP in April 2012, followed by radiotherapy. My Uro-oncologist Dr Fred Saad is more of " the watchful surveillance before total warfare '' school of thoughts
In the following years my PSA was checked every 3 months. I had 8 years of excellent life.
Now that my PSA have sprung out he put me on ADT.
Oh and Welcome. Be patient, active and mindful of your diet.and enjoy life as we all appreciate how fleeting it is
My husband had RP on 3/31 . Bone scan and MRI were negative. Gleason 9. Not clean margins. Seminal vessel involvement and 1 lymph node. Our doctor waits for PSA to rise then does lupron and zytiga. I want to throw everything at it including radiation. My eyes hurt from all the studies I've read. My head hurts from all the conflicting opinions. All I want is for someone to tell us what the best thing is to do.!
PSA levels below 0.1 ng/l are considered to be below the level of accuracy of the analysis, so your husband needs to be patient. I had RP 18 months ago when Gleeson was 9 with 21 lymph nodes and seminal vessicules removed. I have been taking ADT (Bicalutamide) for 6 months and PSA is now 0.3 and stable. I would have started radiation therapy but my bowel configuration is unusual so it would likely cause a lot of collateral damage, so I am hoping that treatment with Lu-177 will soon be approved for use by the UK NHS as it is available privately but very expensive (around $60,000). This therapy uses the prostate specific membrane antigen (PSMA) attached to radioactive Lutetium to seek the cancer cells and attach it to them, which then kills them. It works for most men who's cancer exhibits the PSM which is first revealed with a Ga-68 PSMA/PET scan done before the Lu-177 is started; this is also very useful to identify the location of prostate cancer cells; other PET scans that don't use the PSMA don't distinguish prostate cancer from other zones of high metabolic activity, so are not much use. I believe that PSMA technology is the future for accurate and effective location and therapy for metastasic prostate cancer, with the holy grail of treatment being the use of CAR-T to use an individual's own killer T-cells labelled with PSMA to go out and kill the cancer cells, but it is still under development as it has serious problems for prostate cancer treatment, like causing a cytokine storm, but is already used to treat the blood cancer lymphoblastic lymphoma. Be optimistic; we are all under threat from many diseases and now COVID-19 but we will survive!
Just by your active involvement you are on the right path. Yes I have had many nights that I could not read anymore, burning eyes. With knowledge comes truth.
Good Luck ! I wasn't supposed to be here....20 years out!
Gesundheit.... Greetings ..... you can take what I'm saying with a grain of salt....No one will give you 5 to 10 years..... that's doctor BS talking..... You will be around for many more years than 5 to 10. BTW how old are you?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/23/2020 5:55 PM DST
Vielen dank and lived in Germany for 4 years and fluent! I just turned 62, it was me looking at all sorts of statistics and studies and..............but my goal is take thing head on like I do sports and live for a long time just trying to find the best treatment options.
Jawohl go fo it..........(Did you get my point why I said Gesundheit?)
BTW you are a youngster here.......
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/23/2020 6:07 PM DST
Sounds like a medical oncologist on top of his game. Excellent plan. Exactly what I did in 2003/2004. Primary treatment was brachytherapy and IMRT, then chemotherapy while my body was strong and the tumor burden minimal. Continued Lupron for another six years, then I was most fortunate when we stopped the hormone injections and PSA remaining undetectable since..... 10 years.
GD
My husband is also thinking of hitting it hard and fast. New studies say that has a better outcome, meaning long life, than waiting for PSA to rise. Second opinion doctor agrees with us. We also have PSA test on may 6th. Prayers for you and my husband. 20 plus good years is what we want.
I had same dx in 2013. See my profile.
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