Update on husband and decisions to make

[LuvsLife]

It’s been a long crazy month as we’ve been working through my husband’s diagnosis (especially with COVID-19 going on).

CT scan and nuclear bone scan show no metastasis at this point. We scheduled consult with Moffitt in Tampa (surgeon and radiologist) and Memorial Sloan Kettering (surgeon and radiologist). Because of current situations, all consults have been via zoom or FaceTime.

Both the surgeons recommend surgery as a first treatment and both radiologists recommend radiology as a first treatment. All have recommended a MRI prostate. And a couple have recommended he get a Lupron shot (others say not necessary). So now we ponder our options..... both places have said it will be at least beginning to middle of may before anything can be done.

We’re leaning towards surgery because of his age (58) and we’re leaning towards MSK...but a little scared about COVID.

Gleason 9, high risk aggressive diagnosis.

[Tall_Allen]

1) His age is not a factor. In fact, his relatively young age argues against surgery. It means he will have more years to suffer with any side effects. Younger men do better with surgery and radiation because healing from either is better at a younger age. Here are questions to ask himself:

pcnrv.blogspot.com/2017/12/...

2) Considering that his treatment will be delayed and he is high risk, a 3-month Lupron shot, although possibly unnecessary, will give him peace of mind. It will be necessary with any kind of radiation.

3) I don't understand why you talked to doctors at Moffit and MSK. They are both excellent insitutions, but he will be treated by a doctor and not an institution. He should choose among the best doctors available to him. If you are in Florida, you should be talking to Vipul Patel in Orlando about surgery, and the radiation oncologists Matthew Bagnoli or John Sylvester about brachy boost therapy.

4) With his high-risk diagnosis, brachy boost therapy (not external beam only and not brachy monotherapy and not surgery) has the best record of success:

pcnrv.blogspot.com/2018/03/...

5) If you can afford to travel and afford a cost of $2800, I highly recommend he go to UCLA to get a PSMA PET/CT. There may be small metastases that may change his treatment decision. If he gets a Lupron shot, he should get that PET scan no more than a month from the time of his shot. I've heard there is a 6-8 week waiting list at UCLA. Contact Jeremie Calais.

[LuvsLife in reply to Tall_Allen]

Thank you for your insight. The cost to go to UCLA isn't an issue, it's more of the risk of COVID-19. I have CLL (so immune compromised) and my husband needs to stay healthy. The timing of this diagnosis just sucks! But definitely something to discuss and think about. Thank you!

And we have submitted paperwork to see Dr. Patel in Orlando!

[Tall_Allen in reply to LuvsLife]

They aren't allowing spouses to accompany patients just now.

[mja511 in reply to Tall_Allen]

I was at Dr. Patel's on Thursday (April 2, 2020). They allow 1 person with you.

[Tall_Allen in reply to mja511]

Sorry- I meant at UCLA.

[preciousbz]

I'm on Trelstar ( like Lupron ) for 18 months now and psa is steady 0.01 from 20..has side effects as most of these do.

At your age I would have robotic surgery and remove it, Im older and went with radiation and shots...your still young and I think overall recovery would be better with surgery.

[junkwerc]

I went thru this over the last two months. From diagnosis seeking alternatives to action.

First goal. Deciding on a treatment that eliminates the cancer and reduces the chances for reoccurrence. That is where you need the help of the DRs.

Second. Lifestyle and how treatments can affect life style. Again Drs can help discuss this. But you must be open and honest with them so that they can help give advice.

Then you have to decide on type of treatment. Once you decide on a course of treatment dealing with the cancer becomes easier. You now have a pathway forward and focus on that.

In our case sexual activity was not that important. After confirming this with radiologist in open discussion together he is the one that steered us to surgery. After meeting with surgeon it was confirmed it was our best course.

Each case is different based on stage of cancer general health and lifestyle.

AS to surgeon if your in Tampa then consider Patel in Orlando. If your case is straight forward then staying local has benefits. I stayed local, surgeon has done 4,000 + procedures and several friends used him and were pleased. Hospital was almost empty and had no Covid cases. But that was last week.

Nine days post surgery. I am up walking have control of bladder except sneezing. Almost ready for a glass of wine.

You are on the right track in searching for treatment.

[mja511]

Hi - very similar - I'm 62 - gleason score 9 - bone scan is clean - mri shows spread in seminal vesicles. I also have CLL (p17 deletion). I went to radiologist - he does not recommend sbrt, but does recommend external radiation. I went to Dr. Patel in Orlando - he recommends surgery because radiation is easier if it is needed down the road. He said that if I had radiation first - and if that didn't work - that "salvage" surgery is difficult. My daughter and I were at Dr. Patel's office on 4/2/2020 - I got a Lupron shot which I would need for radiation treatment or surgery - it will also buy some time during this time. Dr. Patel will offer a phone consultation - but I recommend meeting him and his staff in person. I also have CLL and I wasn't worried at all. Good luck and post when a decision is made.

[RonnyBaby]

Radiation and ADT might be the best option - he may be too advanced for surgery - something might get missed.

I'm biased of course, but ....

Best wishes on your journey.

[CHPA]

I would disagree with the thought that age doesn’t matter. Ones considerations at 58 are different than someone 78 or 88. All are valuable people but the 58 year old has the longest to live and thus a greater chance of recurrence. As a 58 year old, I wanted the cancer out and I didn’t want to wait a year or two or more as I watched and hoped my PSA went down. My goal was to live and secondarily to minimize complications. But that is me.