Hi,
So just been told prostate cancer is G9, in lymph nodes close to Prostate and one small one in pelvis.
Clinical nurse said given high PSA could be a lot worse.
She's arranging a follow up with surgeon to see about having prostate and lymph nodes removed. Is this what anyone else would do?
In my head it makes sense to have it all out
Sorry you need to be here;
my advice depends on where you live but - Get second opinion at major cancer center if you can. I started out (2015) as a G9 with mets; I saw a Urologist in Tulsa; then MO and RO the suggested treatments were different.
Then went to MD Anderson the MO was great. I was told my prostate cancer had already left the building so taking out my prostate now would not be curative. So I have still got mine. (dr told me he might take it out later) With a G9 you may be able to get into a clinical trial; they often have the latest and greatest treatments.
Read all you can and learn about PC -- so you can make an informed decision.
Always record you dr visits on your phone.
Larry E
Thank you Larry, we are in the UK.
What I don't understand and I appreciate different cancers are different but when my husband had throat cancer 11 years a go that had spread to lymph nodes and it was all surgically removed along with RT and chemo, it cured him if that. So I don't see why they don't remove Prostate and lymph nodes
If you get a chance read my profile. I am a G9 went to MD Anderson had prostatectomy and 25 lymph nodes removed. 2.5 yrs later a biochemical recurrence and 38 radiation treatments to prostate bed. 2 yrs later PSA undetectable. I am not suggesting prostatectomy is the answer...but it helps to understand the circumstances of others and their choice of treatments. Definitely get a second opinion from surgeon, radiologist and medical oncologist and evaluate the different treatments available.
Thanks. In my head it makes sense to get it all out and then RT in case any is missed
Will hopefully discuss more on Monday with nurse and they're potentially arranging meeting with surgeon. Not sure they like to operate after it's outside
All indications at my time of surgery was the cancer was local with no distant metastasis. If you choose surgery, look into the DaVinci method. Find a surgeon who has done thousands of surgeries. They are out there. You will see far better results, fewer long term side effects from a surgeon who has done thousands of surgeries. Id the surgeon wont tell you how many surgeries they have done...find another surgeon at a top PCA center.
I overlooked your statement that PCA is in the lymph nodes. I agree with your assertion “Not sure they like to operate after its outside”. Allen’s link to the research is pretty telling for guys with your situation. Good luck with your decision and treatment! You have joined a great network of guys willing to share medical and naturopathic information. I found a healthy diet and exercise also helped with my speedy recovery.
It is a very common first reaction to "just cut it out," but that is seldom the most effective way of going about it with your kind of prostate cancer. You should be talking to a radiation oncologist as well. For men with GS 9, a combination of external beam radiation to the whole pelvis + brachytherapy boost to the prostate + ADT has been shown to have superior results to surgery:
pcnrv.blogspot.com/2018/03/...
If you can, try to get a consult with Peter Hoskins at Mt Vernon Hospital in Northwoods. He is a world-renowned specialist in this kind of therapy.
As for the known lymph nodes, I think it is a terrible idea to plan on surgically removing them followed by radiation - that only increases toxic side effects, including lymphocele and lymphedema. Why not do it right in the first place, just with radiation? They can give a boost dose to those known lymph nodes. I assume that those lymph nodes were ones that were enlarged on a ct scan. That is NEVER all there is. There are good odds of a cure, but only if ALL the pelvic LNs are treated.
Thank you.
I value your feedback.
We're only meeting a clinical nurse on Monday which I'm not happy about. We're in the UK so not sure where to get other advice/second opinions. Not totally confident that were getting the best advice, they've advised non curable
You can try calling Peter Hoskin's office directly. Prof PJ Hoskin, Mount Vernon Cancer Centre, Rickmansworth Road, Northwood, Middlesex, HA6 2RN, UK. Email: peterhoskin@nhs.net
It is treatable however.. many have been where you’re at but have progressed thru treatments to a better place.. including myself but correct to say that there is no known cure for #4 APC.. also no cure for diabetes and other conditions people live with .. Whatever the Docs tell you. You can do better..
Just emailed him.
Thank you. Just seems so strange to be speaking to a nurse about such important decisions, it's not a hair consultation. No disrespect to them but we need oncologists
Once it breaks out of the prostate there is little point removing it as the spread usually follows from the Mets etc not the prostate. Simplifying it.
Very unlikely you will find a surgeon who would do this anyway. In my opinion.
Yeah but I was thinking they can remove lymph nodes as well
I think that would be a big ask.
See this is something I don't understand as my husband had throat cancer 11 years ago which had spread to the lymph nodes I his neck and by surgically removing along with radiotherapy and chemotherapy he was cured
PCa in lymph nodes could be in tricky places like Iliac lymph nodes and its not as straightforward.
APC is different from those because its hormonal driven and tends to reoccure once it has gone #4.
I was non -op also..
Thanks Lulu.
At what point did you start from; GS, PSA and was it contained?
GS =4+4 , PSA high only 20. Basically prostate was blown out with pc tumors :bladder, urethra shut off, 2lymph nodes lit up.. They said my prostate was gigantic. Now prostate shrunkin with no issues.psa and pc undetectable. The surgeries I’ve had were tubes, stents, and orchiectomy..the last being the easiest.. Peace..
That gets into the subject of 'debulking' the primary tumor(s) in the prostate. Want to hit the tumor with more than just ADT -- radiation as T_A suggests sounds like a very good option.
Thank you.
Just had a call from the clinical nurse to confirm that the surgeon wouldn't operate and that radiotherapy could cover a larger area. What I don't understand is that if RT kills the nasty prostate cells and lymph nodes then why isn't a cure possible?
That's a question for your medical team. My understanding is that once the cancer has escaped the prostate it becomes a battle. It can be managed if not cured. Many men here have started off in worse shape and have been in this battle for many years and are still going strong. New treatment options in the way of new drugs continue to be developed.
Did you have a PSMA PET CT? This would be important to really rule out mets, before thinking of operation.
I am a G9. Surgeon wanted to operate. Second opinion at Johns Hopkins said they would not operate because the odds were too great that it was out of the capsule. Did radiation and hormone treatment. In long term remission more than ten years. Recently came back with bone mets. Glad I did not do surgery
Hey Guy, There was no being contained on my part. spread into bladder and urethra with two nodes lit up. I too did only RT & still on adt so far over 3yrs clear. I pray to mimick your ten years. Reality is , that we’re all APC bitches and whenever it chooses to rear it ugly head it shall.. in the meantime pray for a cure and be grateful when not in brutal pain at any given moment. You’ve been at this much longer than I.. ten years later and your in the ring again. Dam ... this is the norm for the beast.. hope that you can overcome again . God Bless🙏
Thanks. I have been so lucky so far. Have some pain now but my new MO cleared me to go skiing so I am going today. Just trying to live each day the best I can. Hang in there. If a cure is not out there I expect that we can get to a long term comfortable remission. There will always be some side effects but as long as they are manageable....
Bless back to you
Thanks superheat
We know it's outside prostate in the lymph nodes so perhaps radiotherapy might be the way to go
This has worked for me also so far.. take care...
Why expose yourself to the common and serious side-effects of surgery when radiation can do a better job with less side-effect risk? If you end up doing both surgery and radiation, you expose yourself to even worse side-effects..With radiation, you want a well-trained RO who has access to a modern LINAC .. Radiation has come a LONG way over the past 5 or 10 years. Much safer, much more effective..
Quick update
Just returned from hospital. G9 and spread to lymph nodes within pelvis is classes as locally advanced so they are going to do HT and radiotherapy with curative intent
Axumin PET Scan Results
RESULTS OF LU 177 IN EUROPE FOR PROSTATE CANCER
Result of PSMA /PET/CT
PSMA Pet Scan results 
PSMA scan results 
