i got 4 opinions. Two out of four were different from each other and the other two, in terms of lab results, diagnosis and treatment. Hoping your husband’s situation is simpler. My friend with cancer used a local oncologist, and a second opinion at Dana Farber two hours away, which thankfully agreed with the local MD.
My aunt (retired anesthesiologist) was adamant that H go to a university hospital. She said they’d be likely to be more up on the newest research and development vs our local hospital - which is tiny and not good. Note that we don’t live near any well known/famous cancer centers. I’m sure that would have been good in her book as well.
I wrote elsewhere that the difference in quality between our one local oncologist visit and the university center (a little over an hour away) was night and day.
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The December/January AARP magazine has a very good article, A Fighting Chance. It has good information about moving forward after a cancer diagnosis. Unfortunately, it’s available only to AARP members. One of the things it highlights is getting genetic testing as soon as possible.
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My initial urologist who gave the diagnosis after the MRI, biopsy and pet scan said stay off. He was right. I panicked myself and for little reason.
I had consults with two surgeons and three radiologists - my urologist was neither. I would read a lot and panic myself but saw that likelihood to live 15 years was the same. My wife did most research - even joined support groups.
In your case, with an 8, your treatment may be different. I was 7 (but 3+4, not 4+3 and apparently 3+4 is better) but I had only two options - radiation and surgery. I was past the other treatments like radiation seeds - too late.
The point - see multiple doctors - they will potentially have different ideas, even the same type. One radiologist wanted to insert a balloon to protect other parts. The one I used said heck no - not based on where your tumor is.
Ask questions, trust the doctors. Zero in online from what they tell you if you must but don’t look without focusing on stuff they recommend or you’ll think there’s no hope. And the truth, if treated, is likely far from it.
We are very happy with the care H is receiving at UVA. We saw no need to look anywhere else. 
I don’t want to share any additional details as it’s not my cancer and I don’t want to muddy the waters, I just want to support greenbutton and greenbuttonH. Everyone is different and I’m glad you’re happy with your choices and your treatment.
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I was just supporting the stay off the net. I thought I was talking to OP. Sorry. Thx
Liking your dr is the key. So it’s good you do.
Three of my consults were at Vandy. One I truly liked and went with. Very different than the other two, one of which was a surgeon.
I wish your husband luck. A lot of it is mindset. My guy gave me physical therapy (basically a personal fitness trainer in a drs office) to help keep the muscles and joints strong because of medications they gave me. It did wonders for my mind. That matters too.
Best of luck. It’s those supporting us that help soooooo much.
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It has been a bit more than 10 years. However, my recollection is that my doctors focused on the most aggressive Gleason score from the many samples (most of which were not cancerous in my case, I think that two or three were cancerous). My understanding is that the cancer bit that looks like it is the most aggressive is the bit that is most likely to become a problem the quickest over time, so that is what they focus on.
Regarding surgery versus radiation versus something else, this seemed to depend upon the age and health of the patient and the aggressiveness of the cancer. I am not sure whether the location and size of the cancer were also issues. Being youngish and otherwise healthy with a more aggressive cancer makes it more likely to eventually become a problem if you leave it alone. Being older or less healthy with a less aggressive cancer might seem to make the cancer less of a risk, partly because an older person might not live long enough for the cancer to become a problem, but also because apparently cancer usually grows slower in older people.
My understanding is that there are many treatments available and there are tradeoffs all over the place. Thus someone who is very experienced in dealing with this, such as an oncologist who specializes in prostate cancer, is the best person to choose from among the available treatments. This did not stop me from looking up options on-line, but I always agreed with what they recommended in my case. I did end up at a well known clinic that is very well known for cancer treatment and that has a large number of experts in cancer care. I think that this is a good thing for cancer care partly because with prostate cancer there is a good chance that you could end up with a long term battle, where the vast majority of the time you and your husband are just living your lives, but from time to time another appointment is needed. It has of course been 10 1/2 years for me and there have been a lot of visits and a lot of different doctors over that time period (at least a surgeon, an oncologist, a radiation oncologist, and a new oncologist when the first one either retired or moved to a different location, plus lots of other medical professionals who help one way or another).
If surgery is chosen, there is the option of normal open surgery and the option of robot assisted surgery. With robot assisted surgery, they make several very small cuts that the robotic arms go into, and one still relatively small cut for the tube that the cancer and other parts go out of. The several small cuts heal pretty quickly. Several of them I cannot even find the scar anymore. If I am remembering correctly my surgery was on a Thursday or Friday, and the following Tuesday I was walking around at a farmer’s market and just buying normal things such as fruit. My wife had to drive me to the farmer’s market since I was still on opioids and was not allowed to drive (I never had any trouble with the opioids, and went off of them easily as soon as I was allowed to start using ibuprofen).
I think that you are in the early stages of a potentially long battle, but they really have gotten quite good at making the medical part relatively tolerable while fighting the cancer and minimizing the discomfort and resulting side effects to the patient.
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We tried to go to UCSF got a 2nd opinion but found them very hard to schedule with and were trying to treat even before having proper imaging. We were very annoyed at how difficult it was communicating with them. We were satisfied with our local oncologist that all 3 urologists we knew referred pretty much all their patients to. He’s written several journal articles and pioneered Brachytherapy in our state and has been doing it for many years. He’s become a personal friend of my sister and BIL over the decades.
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OP here – I posted in the Say It Here thread so I didn’t seem self-absorbed but several of you have sent such nice helpful PMs that I am here again.
DH’s prognosis is very good, but “active waiting” is off the table. He will need to choose between radiation tbd, or surgery. We’ve had our general Q&A w/ the urologist/surgeon and will be scheduled for a similar session with the radiation team. After that, he chooses and treatment will begin quickly after that. Surgery would be robotic-assist.
Genetics are being done and he is well versed with the NCCN guidelines. His doctor is confident we are early enough to still have choices, but given DH’s family history we know we will be doing something other than waiting.
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So glad to hear that the prognosis is good but lots of prayers that your H will tolerate and respond well to the treatment.
How are you holding up?
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I just had robotic assisted surgery for my cancer last week. It was a major surgery but I’m amazed at the tiny incisions and relatively easy recovery! (Had chemo and radiation earlier last year.) Best of luck to your H whatever he ends up choosing.
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Prayers for a speedy recovery!
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My spouse was too old for surgery (they prefer to do it only on folks under age 70 and he’s in his 80s). He had beam radiation plus implanted seeds/beads that emit radiation over time (brachytherapy), plus testosterone suppression pills. The pills were the worst and they wanted him to be on it for a year or two—he lasted 6 months and is VERY relieved he stopped.
(We were told that the shots were MUCH worse than the pills and H was “lucky” he could get pills and got the discount from Orgovyx website so he had very low copay. The pills start working soon after you start taking them and STOP suppressing testosterone soon after you stop taking them. The injections take a month or longer before the testosterone slowly MAY return, so a much longer lag period.)
Fingers crossed your H will choose the treatment(s) that he feels will work best for him and best tolerated. It is definitely a journey and we’ve been on it for many months now.
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You had posted this earlier. Even if the comprehensive medical centers are not going to be convenient for actual care it may be worth consulting with an expert to see what they advise. Depending on the treatment path you choose an expert may also be available as part of your husband’s team even when the care is provided locally. Medicare covers this (see Second Surgical Opinion Coverage ) and if he’s still on health insurance from work it may be covered as well.
After that, he chooses and treatment will begin quickly after that.
Is that what the team said or your husband’s preference? If as you said the prognosis is good then a few weeks pause to get a consultation from a major medical center is unlikely to change the outcome, something you can ask/confirm with his current team.
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I get the start soon as you can. Once the doctor’s decided my husband needed chemo for his cancer, when they asked him when he wanted to start he said tomorrow! The sooner you start the sooner you are done. I also think the stress and anxiety of waiting for treatment to start can be unbearable.
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agree with this.
Where I live, getting to Sloan Kettering in NYC can take 2 hours with traffic, parking, etc. So potentially 4 or more hours in the car on chemo days.
The typical practice is for surgery (if something complex) and the oncology consult (and treatment plan) from Sloan. And then chemo or whichever other treatment is required at a local hospital or infusion center. That plan usually means a delay of a week or two for diagnosis and the second (and sometimes third opinion) but it’s generally accepted as the best way to go. If someone had to get on a plane for Houston or Minneapolis or Cleveland– yes, that would require complicated logistics. But if there’s a major cancer center within a few hours drive, most people opt for that second opinion even when it means a slight delay.
OP- good luck. Sending healing thoughts and praying for the entire medical team that they bring their A game (which you know they will. Lazy folks don’t go into oncology!)
@greenbutton – I just now saw this thread, after posting to you privately. 
As I told her, H is joining this club now, unfortunately. We are slightly behind their schedule, I think. H has scheduled with a radiation oncology appointment with a local highly rated doc, and looking at a surgical consult with a somewhat farther away cancer center (not Sloan or Mt. Sinai, but a NJ one that has good reports). H thinks that with surgery especially, better to find the most skilled doc for optimal results.
Haven’t met with either yet, but H is leaning to surgery because of effects of radiation plus AHT. But will know more in the next few weeks.
Sending hugs to all dealing with cancer for others, or for themselves.
(Side note–I had to get a follow up diagnostic mammo and ultrasound this morning, and was really, really afraid that we were getting a double whammy, especially when they said the radiologist is going to come in to talk to you, but fortunately it’s “likely benign” and just need six month follow up testing. Whew! Two at once would have been a trial for sure.)
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We are not old enough for Medicare and DH is not retired. We are familiar with the advantages of experts (for about 15 years we made a 6 hr round trip every 6 weeks with our son) but I’m not sure they can offer anything we don’t have locally. DH’s case seems to be squarely in the gray area of either/or and nobody is suggesting open surgery either.
Yes, the doctor said we can take as long as we need to decide on a treatment, because whether it is “tomorrow or 6 months from now” the progress is too slow to make it urgent. But once a treatment is chosen, it is only a matter of “one or two weeks” to begin.
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I want to add to the research or don’t discussion. While waiting for biopsy results and then urologist visit, I did a lot of reading on the Reddit prostate cancer forum, and I found it incredibly useful. The posters there are incredibly knowledgeable and generous in helping “newbies” understand the process and the choices. I found out about many authortative resources, became familiar with parameters like Gleason scores etc., read about different protocols, heard people’s different reactions to them, and in general I’ve become pretty educated on this condition. H is, actually, a former doc, but he wasn’t at first ready to research and was just going to do whatever he was told. But what we’ve both learned is that it’s not that simple. He’s doing his own reading now in medical journals, etc, but it’s helpful that I have a basis to discuss alternatives with him.
A long way of saying that there are different versions of “Dr. Google” and being armed with credible information is really helpful.
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That was my experience also.
One small nit: In robot assisted surgery my understanding is that they basically inflate your abdomen to help them do the work. I ended up buying an entirely new set of pants because my old pants were too tight (even without my gaining any weight at all). I kept expecting my abdomen to eventually shrink back to what is was pre-surgery, but after 10 1/2 years it hasn’t happened yet so I think that it is well past time for me to get rid of the pants that don’t fit.
Regarding the testosterone suppressing pills or shots, one thing that I was told was that if you keep exercising you can mostly maintain your muscles, but it will become very difficult to grow new muscles. Thus some exercise is recommended to avoid losing muscle mass. I was only on hormone suppression for 6 months and that is long past, and this part does appear to have returned to normal, mostly.
When I was first diagnosed with cancer, I wondered about retirement. My boss said “Do not make any decision in a hurry. Take your time.” He was entirely right. He was also very good about my being distracted for a while.
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