Newly Diagnosed

Hello everyone. I recently was diagnosed (3+4)7.
On 4/17/19 as part of a regular appt regarding a kidney stone Doc did a DRE and found a nodule on right side of Prostate. I was somewhat shocked because DRE 18 months before was normal and my psa was 2.9 in March. He did an ultrasound needle biopsy on 5/3. He took eight random samples. Results came back as follows: R Base-25%3+3
L Base-Normal, R Mid-70%3+4
L Mid-9%3+3, R Apex-70%3+4
L Apex-38%3+4. Two other lateral areas appeared normal. No evidence of pni and I believe this would classify as T2c(?) My doc recommends surgery. Seeing one or two others for opinion. I really feel a sense of urgency about it all.
Don’t know if I’m asking anything in particular, but mainly reaching out for help/advice ect.

Koach,
Welcome to the forum and sorry about your diagnosis. First and foremost I encourage you to slow down. You have plenty of time - in your situation I see no need to rush into treatment. When you say “doc” I assume you mean Urologist. Uros often recommend surgery because that’s what they do. Did your Urologist mention there are alternative therapies that will work just as well?

To be certain of your pathology it is very wise to have your biopsy slides sent to Epstein, the world’s best PCa pathologist, for evaluation. A change in your in your pathology could affect treatment choice.

You have plenty of time to visit Radiation Oncologists for several types of Radiation Therapy that may, or may not, be a better treatment choice for you.

Read the Sticky Threads for newly diagnosed - there also instructions there for sending your slides out.

Again, you have plenty time to educate yourself for making the best decision that works for you.

Others will be along to share their views. Stay with us for support.

Thank you Sr Sailor. I am 64. Been no suspicion of problems before. My psa(yearly blood tests for bp meds) was .83 in 2011 and has very slowly risen to 2.9 as of March this yr. It’s fortunate that I have regular appts re a .45 mm stone in left kidney(passed 2 before, 2005/2015) otherwise I would have been unlikely to see an urologist until symptoms arose. Thanks for your response!

Koach64 said...
Thank you Sr Sailor. I am 64. Been no suspicion of problems before. My psa(yearly blood tests for bp meds) was .83 in 2011 and has very slowly risen to 2.9 as of March this yr. It’s fortunate that I have regular appts re a .45 mm stone in left kidney(passed 2 before, 2005/2015) otherwise I would have been unlikely to see an urologist until symptoms arose. Thanks for your response!

so your doctor watched your PSA rise and never got suspicious?

@mattam re psa
My psa tests were done at a local general clinic. My urologist was not aware of these numbers. When results came back, psa was never noted as high. I personally had kept up with it but the very slow rise and being less than 4.0 didn’t set off any alarm.

Okay,
Adenocarcina is “good.” There’s also a very aggressive form of PCa that doesn’t put out much PSA. Since your PSA is fairly low I was concerned about that.

I hate to say it but your Uro is giving you a common spiel with his encouragement for a RP. Let’s face it, practitioners of specialties are sometimes biased towards what they do. Surgery would likely work as well as anything else, but why not check with radiation specialists? All treatments have side-effects - sometimes life altering. Did the Uro discuss surgery side-effects? You will be doing yourself a disservice by not investigating all treatments and their various side-effects.

of course he says it's confined. that's how he sells surgery. with two cores at 70% how does he know there aren't two cores at 99%. he doesn't. there are calculators that will give you the probabilities your doctor isn't giving you. I suggest you check them out so you'll be informed.

if you do proceed with surgery have him explain salvage radiation and possible side effects, and also at what point salvage would begin.

Sorry to hear about your diagnosis. I second the opinion about having Epstein at Johns Hopkins review your biopsy slides--reading these is a subjective process and it would be good to have one of the top pathologists to review them. It's cheap (often covered by insurance) and easy--details are in the Newly Diagnosed Sticky.

You only get one shot at a primary treatment, so you do want to fully understand your options. The cure rates between surgery and various types of radiation are about the same, but the potential SEs are different. And some guys are just surgery guys or radiation guys--they feel better with one or the other of the approaches. As has been said, the first recommendation is almost always for surgery since urologists are surgeons. The radiation options that I suggest you check out are SBRT (external beam) or brachytherapy (either HDR or LDR). Regarding surgery, I'd talk to another surgeon--preferably someone that has done lots of them.

I can understand why you want to take care of business right away, but you want to be knowledgable enough to feel you made the right decision. I was diagnosed as a G9 and I took 2.5 months and that didn't seem to be an issue in my case. Good luck to you and I hope we can help.

Welcome, Koach.
I mainly want to commiserate: Like you, I gradually rose to 2.9 and the next year, wham, it's a biopsy and aggressive PCa. Been there.
My advice: Don't dawdle, but don't rush either. Consult widely with top PCa surgeons AND radiologists. Explore all options. Make lists of questions to ask at your appointments and bring the lists with you, and write down the answers. If possible, bring a companion with you: It's easy to miss something significant that a doctor says, good to have a second pair of ears. Feel free to bounce ideas around in this forum.
Once you've gathered the information you need, make a decision and don't look back or you'll turn into a pillar of salt.
Keep your spirits up.

I would definitely look to get knowledgeable on all options but as one of my first good advises I got here was “ don’t take many months to make the decision ... but do take many weeks”.

I can only talk surgery based on my experience- if you go down this path - it’s utmost important you chose the best surgeon to get this done. I switched my uro ( from the one who did my biopsy) to a much more experienced Uro for my surgery. You only have one chance to do this right the first time so choose wisely. Don’t get tempted to go with your current surgeon if he has not done thousands of these and does less than 2 per week. He has to be highly experienced and current in robotic surgery.

Thanks to each of you for your advice and kind words. I will definitely look carefully into each type of treatment as well as pathology reread. I’ll not hurry but hope to commit to a treatment path by end of June and likely report along the way.

Koach64,

When I was diagnosed, my urologist spent several hours explaining the biopsy, cancer condition and potential treatment methods. He then required me to get opinions from other practitioners before taking me as a patient. So in one month I met with three different urologists (surgeons) two radiation oncologists (one specialized with permanent seed brachytherapy and one with High Dose Rate brachytherapy) and my wife's medical oncologist ( he was treating her for her second bout of breast cancer and also treated advanced stage PCa).

This exercise was the single most important thing I did. It brought information and clarity from the specific specialists based on heir own separate assessments. It exposed and eliminated any specialist based confirmation bias from the equation. For the life of me I just don't understand why every man doesn't take a similar approach. It removed me from bad information from non-specialists. After all your urologist surgeon is not trained, experienced or board certified as a radiation oncologist. Why in the world would you listen to him about radiation? May as well call your dentist or optometrist for their take!!

Well, off my high horse now. My message is to go straight to the different specialists and get their specific assessment and recommendation before deciding on a treatment. If you are in the intermediate risk, then radiation based treatments are often better than surgery for cancer control and generally present less significant negative side effects. Surgery is not magic and killing the cancer with radiation is every bit as successful as cutting it out....but without the scars Your worst situation is to have surgery and then use radiation afterwards to clean up PCa cells the surgeon couldn't reach. This happens about one-third of the time.

And I am hopeful and confident that your urologist took you through one or more nomograms from Memorial Sloan Kettering or Johns Hopkins. If he didn't, you should. These help you keep this in proper perspective and can be very useful in helping you determine your treatment plan. .

I had a very similar diagnosis and am grateful i got great advice on this forum on many issues. I got my pathology reviewed by Dr Epstein who downgraded it. I consulted with a MDs of varying specialties and i read the threads and the recommended books. I particularly enjoyed ‘Invasion of the Prostate Snatchers’. Not only did i learn about PCa, i learned about the Urologist industry.