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Meeting w/ oncologist on Monday

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Posted 9/16/2017 5:56 PM (GMT -5)
I thought I would post an update and see if anybody had any words of wisdom as we navigate the next step. We met with the surgeon who said DH should hang tight a test every month or so and wait to see a sharp increase in the PSA. He wasn't interested at all in the studies that I brought up that said there is a better outcome when RT is started earlier that .2. In fact he felt he could go higher with PSA. He admitted that the PSA was not likely a little leftover tissue that would die off.
We did not tell him that we had met with a RO who said RT is needed and likely some ADT to compliment. He said DH has never been undetectable and he had cancer outside of the prostate. He scheduled an appt with an oncologist as well as bone scan and he hoped insurance would approve the Axumin scan. We were pretty distraught as we clearly had 2 opposing opinions. As an aside, DH had an appt with a cardiologist friend of the family. He told us that at a similar age as my husband he had almost the identical diagnosis, G8 and EPE. He had RALP and RT. He has been cancer free for 25 yrs.
We met with an oncologist and he was a breath fresh air. Such an incredible bedside manner. He told us he would take good care of my husband. The bone scan was negative except for a spot on the clavicle which was likely from a broken collarbone. The Axumin scan was denied. So he ordered a MRI and cat scan of the chest area and one of the pelvis. He was very concerned that no lymph nodes were taken. So that is 2 different docs who say the nodes should have been tested. He initially said maybe no ADT and then as he started going over the path report and PSA tests he said maybe 3-6 months. He called the RO and consulted with him while we waited. He spent over an hour and a half with us. He popped into a few other colleagues offices and chatted them up. They were inclined to RT and a bit of ADT as well.
We meet with him ton Monday. We will get the most recent PSA and results from the MRI and scan. I'm sure they will want us to make a decision. This is so hard. Should we reach out to another dr. for a consult? Is it likely that someone would have a 3rd opinion? DH is feeling great and is not happy about having to start any treatment at all. No pads. He just went on a 2 day 16 mile hike. ED is getting better. Does he pull the trigger and start RT with ADT or does he keep being monitored?
Posted 9/16/2017 6:12 PM (GMT -5)
Since your husband has had surgery and it failed, I'm not sure why you continue to consult with the surgeon. It's not his specialty to know the right psa level for starting SRT. It's good that your husband has recovered continence before initiating SRT. I consulted with two urologists, both of whom thought I should start SRT when my psa reached .05.
Posted 9/16/2017 6:31 PM (GMT -5)
Hi you guys are in the same boat as me sometimes i think it is more stressful than initial treatment. As you can see i came back at .12,.13 had the MRI with the rectal coil nothing showed up which the urologist pretty much figured would be at the low number of .12. My RO wanted to wait 6 months for heal up time and continence control which i have about 97%. I meet with him on October 11 after psa test and meeting with my urologist to decide if adt with salvage radiation or just radiation
? He already said the radiation would be 7 weeks 5 days a week at 72gy
Wishing you guys the best whatever you decide

Larry
Posted 9/16/2017 7:07 PM (GMT -5)
Fiddle, we have just gone to the one post op meeting with the surgeon at 3 month. It is funny I don't remember when he said we would follow up. He just gave us a stack of lab orders and sent us one our way. To be clear he was pretty thorough in checking on his recovery and making sure he was doing well. We had already had one consult with an RO so I figured DH would be going in that direction based on what I had been studying and opinions from Tall Allen and others. Do we need to tell the urologist that we aren't comfortable just waiting or let sleeping dogs lie?
Posted 9/16/2017 7:29 PM (GMT -5)
You can make your own decision and seek the treatment you consider best, and never mind what the uro says or thinks. My own surgeon just hates radiation so I would never pay attention to what he says about radiation. (My regular urologist is much more reasonable.) At one point I got fed up with my first urologist and found another. I never bothered to tell the first one that I had found another.
Posted 9/16/2017 8:40 PM (GMT -5)
Fiddle
I'm not sure if I am doing the right thing by looking backward on 20/20 vision . I'm wondering why your surgeon waited 2/3 years after a high PSA to get the biopsy done in 2017.
If he is the same surgeon/uro who is suggesting to wait , I would question his decision making skills .
Posted 9/16/2017 11:09 PM (GMT -5)
up4thefight-

You owe nothing to the urologist. No explanation is necessary. If you decide on SRT, your lead doctor is the RO. He's probably done a lot of SRTs and knows what he's doing.

The fact that your DH is symptomless is no reason to hold back - we were all symptomless before treatment. Meanwhile, the cancer is replicating and preparing to metastasize. After that occurs, your DH is incurable, no matter how well he feels now. Waiting is risky, and I can't imagine what it is he is waiting for - it won't go away no matter how hard you wish it might. I'm sorry the Axumin scan was denied, but the fact that there was a positive margin is a good sign that SRT might work, if you do it soon enough.
Posted 9/17/2017 7:03 AM (GMT -5)
Your name says it all. Time to live up to it, in my opinion. Take charge. The doctors work for you.......and in reality they are a dime a dozen. You have had a lot of time to find the best, now it is time to use them to determine your destiny.

It looks like the surgery has failed. You knew going in that a lot of high risk surgeries fail and your probability of failure was high. You chose surgery, as I remember, so that you had radiation as a backup to salvage a failed surgery. Well now follow that plan. As TA stated, that window will close and neither you nor anyone else do not know how quickly it will close. As far as a few benign cells left that will die off? Maybe with a G6 I could swallow that. With a G8 it is most assuredly a few (millions) very aggressive PCa cells gaining strength and preparing to do real damage.

The urologist-surgeon has done his work and it is time to hand off to the next team, led by the radiation oncologist. In football the coach wants to win. When Tom Brady fails to get the first down, they don't leave him in the game on defense in hopes they will succeed. Brady is not a defensive player and he knows the best place to be in that circumstance is on the bench. If he tries to exert himself the coach rightfully sits him down. You are the coach. Your initial quarterback now needs to take the bench. You need to put him on the bench and go with the best defense you can find....the radiation oncologist.

As to the medical oncologist, I don't think it is his time yet, unless you are giving up on the radiation attempt to cure. The medical oncologist may add confusion to the situation and delay making progress on good options. I hope he will say to get to a radiation oncologist and get started trying to cure this stuff. The mo usually comes in after the surgeon and radiation oncologist have done what they can and it didn't work.

If you need time to decide and/or for more healing, you can get started on the ADT, which will slow the progression of the cancer. The ro is probably going to want him on ADT before the salvage radiation starts. Any doc can give a six month shot of Lupron or whatever ADT is the choice. In your high risk, potentially advanced disease, that is what I would be looking at very quickly. Your risk level and post surgery PSA certainly indicates ADT as part of the treatment protocol. You can easily get that shot this week.

Stay diligent, but become the leader of this team. Get out in front of the disease, don't wait for it to advance, because advance it will. You need to now hit this disease as hard as is possible if you want to cure it. Yes it is a fight. The very best practitioners are aggressive when dealing with aggressive high risk PCa. That's what you need, an aggressive doctor. Or you need to become the aggressive coach and direct the doctor to get with the winning plan. Looking back to my own treatment, my docs were all over it with the most aggressive method at the time because of the high risk. That approach has served me very well.

And you have all the support and experience and practical advice of many people here. Best wishes.
Posted 9/17/2017 12:36 PM (GMT -5)
So, mi esposa has resigned himself that he will go with the RO's recommendation for the RT. It was just 4 months on Sept 10th. I thought that there had to be some healing before you could start the radiating. So say we go in Monday and the oncologist says it is all good to start. What is the order of things. Would he, should he get a shot of Lupron and then get the radiation? Would it start right away. We have a trip planned with airfare bought where we would be gone Thurs through Mon. Could they add on time on to the end?
Posted 9/17/2017 12:48 PM (GMT -5)
If he gets a shot of Lupron now, radiation won't begin for at least 2 months. SRT can start anytime after 2 months, so don't change your vacation plans. He can also wait for the SRT until his continence is fully restored -- as long as he's on Lupron, the cancer won't progress.
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