psa up. when do we call Snuffy Myers or other High risk PCa specialist?

PSA .19 at 7 weeks post RP.

Uro said to wait 2 or 3 months to retest PSA. I pushed for earlier PSA test.

Now at 14 1/2 weeks PSA is 2.5. His T is at 2000! He's leaving work to get blood work done for endocrinologist.

I'm freaked out. 2 months ago Tall Allen advised going right to HT and in a couple months SRT. My husband refused. He only will do what his doctor advises. We are going to set up an appointment with the RO in his Uro's oncologist team. But like I said, I'm really scared, and I'm not sure he's had the best advice from his Uro.

We are meant to leave this weekend on vacation. Should we be canceling trip and seeing MO or RO as soon as possible and getting a HT shot? Doesn't such a fast rise in 7 weeks means he's likely to have mets that are growing quickly?

Would it now be a good idea to set up appointment with Snuffy Myers or another high risk PCa specialist?

Testosterone at 2000. Wow! Sorry but my t level has been at 10 or less since 2006. I would follow the above advice and go on vacation. I would also get an oncologist who specializes in p.c. H/t is most likely inevitable at least for a short time. Hope all goes well. Enjoy your vacation. Hope you stay somewhere with a swim up bar. Todd

His uro is a uro oncologist and is part of a team with a RO and MO. She says she's never seen a T level that high. It was at 316 before surgery. I'm wondering if we should see someone who specializes in high risk PCa . I'm going to ask the RO and/or the MO how often they treat high risk patients

no swim up bar. we'll be in the desert where the room has warnings to close the doors at night so the javelinas don't come in. and a view of desert and mountains from the porch.

He's gonna do what he's gonna do. If his urologist is a urological oncologist with a team, that sounds very promising. I would defer to his wishes as it is his life,I know you are a team, but still… I actually think he is in good hands and if the medicos are cool with his vacation plans go right on with them put your faith in your husband and his professional team. Your husband, wisely I feel, has already done that, both your lives will be easier. In the final analysis, someone has to make a decision, He did, again, wisely, time for you to follow his lead. He would do the same for you if things were reversed. I know you know that! Just by doing this your stress will be reduced immensely. Read this post to him, watch him smile and nod his head

Mel,

I believe it is mutually exclusive to maintain them on the case, although second opinions are always fine. The reason is this: Radiation oncologists know about radiation and have protocols they follow, medical oncologists know about medicine and have protocols they follow. It would be unreasonable to expect an RO to know the details of an MO's protocol, and vice versa. By not choosing one's protocol over the other, the patient puts himself at risk.

A good example occurred this year in my support group. The patient was on a special high risk radiation protocol, with the timing of ADT carefully laid out. He went to see an MO (at the same institution!) who knew nothing of the protocol, and the MO gave him another 4-month shot of Lupron. This pissed off the RO because it put the patient at risk for more SEs than he needed to. In another recent incident in this forum, a patient who wanted initial therapy, saw an MO (because he self-publicizes a lot?) who ordered a bone scan that was false positive and delayed his treatment. There's an MO knowledge and POV that a patient with advanced incurable cancer wants, but may get in the way if cure is the goal.

The patient can get opinions from one or the other if he needs that to make up his mind, but after he does, he has to commit to a protocol. I went through 6 doctors before I decided on my treatment, but I dropped the other 5 when I chose my protocol.

The exception may occur when protocols have to be combined. A good case in point is Lupron Jim. He augmented his SBRT with both immunotherapy and advanced hormone therapy, requiring coordination between an RO and an MO. But this is the exception rather than the rule.

- Allen

High PSA caused solely by elevated testosterone post RP...? Hmmm. I'm unfamiliar with this science.

NKinney said...
High PSA caused solely by elevated testosterone post RP...? Hmmm. I'm unfamiliar with this science.[/quotes

Hey I just took some anti anxiety med to help me let that one go til the appointment in a week
ill face the 2.5 when we get back.

I also spent quite a few painful years while misdiagnosed by physicians. I cannot just "leave it to the doctors" so I understand exactly where you are coming from. I don't have any advice but I hope that you find answers soon. I hope that you can enjoy your vacation and each other and put PCa worry in the background (or even better out of your mind) for a while.

So glad to hear you're on vacation! And I hope you don't read this until you come back. But it does sound like you had a game plan in place: radiation as back-up for the surgery, which makes a lot of sense. While I'm not a doctor, nor one of the more knowledgable guys here, it seems like it might be time to put that plan into place with an RO. Wishing you both best of luck!

Back home to ice and snow after a sunny warm 6 days in Tucson. I checked my husband's health portal online where his test results are posted. His psa was .25 not the 2.5 that he told me! (His response when I told him was, "oh, did i say 2.5 instead of .25? Sorry.") I guess that's why his doctor wasn't terribly concerned. Now tomorrow we see her and hope she'll have some ideas on whats going on with the T, and make an appointment with the RO.

Sophie, so do I understand that you went on vacation thinking your husbands PSA was 2.5, when it was actually .25?

Not to make light if the situation, but I give you permission to beat the crap out of him for that "oversight" LOL

He definitely needs a scolding…Big time. Tell him the forums bully would like a word with him in the parking lot. not so much for the mistake, but reaction when advised of such. Errrrg,…Katcenfratsit, big Bleat. Only kidding...before the torches are lit and the farm instruments are wielded. I changed my mind Im appointing you back in charge….. having fun saying all that, it must be a relief that it came down like that.

Just got back from the uro oncologist appointment. His T was retested later on the same day last week, and we were never called with the result. Nor was the result posted on his health portal. T was back in the 450 range. Uro is very perplexed, but also relieved that its normal now.

She wants to have new psa and T test in 4 weeks and meet with him in 3 months. No RT until she thinks it has not metastasized, and no HT as she thinks at this point there is no benefit and she wants to put that off as long as possible.

She will meet with her RO and MO team this week to discuss his case.

I mentioned the clinical trial with the PET/MRI scan and she asked me to send her the information on it, which I just did when I arrived home. I also included links to 2 other articles that Tall Allen has also brought to my attention in the last couple months.

She also asked him how the VED and injections were working for intercourse. (which of course he hasn't been doing). I managed to not start crying but my give away nose started running. Dr told him he should start and also said he should start considering a prosthesis . She told him the shots weren't bad and that her patients who waited a long time said they wished they had started sooner. He said he would try the injections.