Here's our story

[kick-prostate-cancer]

According to my husband's GP, Urologist and now, Oncologist, he shouldn't be at Stage 4 with multiple metasteses (skull, scapula and ribs). Just this past April (2018), his PSA reached 4, and his GP said that is was going up more quickly than he liked, and suggested we visit a Urologist. The Urologist agreed, and did a 4K Score bloodtest. He was boarderline, so his Urologist suggested an MRI. The MRI did detect two lesions in his prostate, and a suspicious spot on his ilium and recommended a bone scan. So, he had a prostate biopsy that confirmed 'early stage' prostate cancer. The surprise was with the bone scan. Nothing showed up on the ilium, but it showed very suspicious spots on this skull, scapula and ribs!! So, it was off for a Sodium Flouride PET/CT Scan. Confirmed Stage 4 prostate cancer with bone mets outside of the pelvis region. The GOOD news was that it didn't appear to have spread to soft tissue of any kind.

He was immediately put on Cicalutaminde for 30 days, and 1 week later got his first Lupron Depot shot, which he will get every 3 months as long as he can tolerate it and as long as it keeps suppressing the production of testerone. He also need to take 1000 mg of calcium and 400 IVs of Vitamin D daily. Next step is the Docetaxel. Not sure if they will include prednisone, but I suspect they will. He will get 6 weeks of infusions, one every 7 days.

All of his doctors are still stunned with what they see. He is in that rate <1% who has such advanced mets with intermediate risk, small lesions in the prostate and low PSA. This is why the metastases are so strange. I asked the Urologist if she is 100% sure that what they're seeing on the skull, scapula and ribs is prostate cancer. She said that the only way to be 100% sure is with a bone biopsy. He is also getting genetic testing in a few months.

That's our story. All of this is so new to us, and you all understand.

Any thoughts? Suggestions? Questions?

I'm here for information and support. Thank you, in advance for providing both of those!!

[Tall_Allen]

I don't understand why you are saying it is intermediate risk? There is another way to be sure that the mets are mets - if they diminish after a few months of hormone therapy, they definitely are mets.

[kick-prostate-cancer in reply to Tall_Allen]

Thanks for your reply, TA. The doctors all felt that, based on his PSA, 4K Score, size of lesions in the prostate and Gleason score, he was only an 'intermediate risk' patient. The mets really surprised everyone. Also, makes sense what you say about the mets. His Oncologist said that his first scan might still show the mets since they take time to heal, but there should not be any new ones.

Are you a doctor, or a PCa survivor, or ??

Thanks, again!!

[Tall_Allen in reply to kick-prostate-cancer]

You did not mention a biopsy or a Gleason score - what was it? I'm a PC survivor - cured 8 years ago.

[kick-prostate-cancer in reply to Tall_Allen]

My husband's Gleason score is 7 (4+3) and the biopsy was positive.

[Tall_Allen in reply to kick-prostate-cancer]

Thanks. That would be put in the "unfavorable intermediate risk" category. At any rate, with multiple bone mets, docetaxel sounds like a good next step. They are probably also measuring another biomarker - bone alkaline phosphatase. because his PSA is low for someone with bone mets, that will be a good indicator. That, and a follow-up NaF PET scan. Let us know how it goes.

[Sxrxrnr1 in reply to Tall_Allen]

Been told by my MO’s hospital/clinic that Medicare no longer pays for NAF CT scans for PCa.

[Tall_Allen in reply to Sxrxrnr1]

Last I heard is that they will pay if the facility keeps a registry. I don't know if it's changed since Axumin was approved.

[jholmq in reply to Tall_Allen]

Allen, on behalf of all of us here I'd like to thank you for all your contributions to our cause. Once you were certified cancer-free you could have just walked away from everything here and gone on with your life. Yet you still devote so much of your time to research and communicating with us here in the forum and through your blog. That makes you a rare human being, my friend. So again, from all of us, thank you for all you continue to do for us and our spouses (male and female). Your work is greatly appreciated.

[Tall_Allen in reply to jholmq]

Kind words - thanks for that.

[Haniff in reply to jholmq]

I couldn't have agreed more, really great to have you here, Tall_Allen, although you don't need to be...God Bless

Haniff

[j-o-h-n in reply to kick-prostate-cancer]

Tall_Allen is not a doctor.... But he should be.... He knows his stuff.... He has excellent advice... His only issue with me is that I'm better looking than he is.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/06/2018 6:01 PM EST

[Tall_Allen in reply to j-o-h-n]

You're funnier than me, too.

[Borntopaint in reply to Tall_Allen]

Just how tall are you Allen? I have a grandson who is 6' 8".

[Tall_Allen in reply to Borntopaint]

Is he named Alen too? If so, I may have to trade my name in for a new one - I'm short - only 6'3"

[Break60 in reply to Tall_Allen]

TA

Isn’t it unusual for a bone scan to find mets at such a low Psa?

[William123Cooper123 in reply to Break60]

No. Quite a few Mets are being detected with PSA (0.00). Jumping on PSA numbers or changes can indicate “nothing” with Mets in bones being detected.

[Tall_Allen in reply to Break60]

Yes, it's unusual, but some kinds of prostate cancer don't put out very much PSA. in cases like that, bone alkaline phosphatase may be a better indicator sometimes.

[Borntopaint in reply to Tall_Allen]

Tall Allen, the name is your's to keep. My grandson's name is Adam. It is so nice to get to talk with you folks.

[Schwah]

I’d ask the doctor about Zytega too. Zytega and lupron early on decreased deaths with stage 4 PC patients by about 40%. Lupron and chemo did the same when multiple mets were found. No clinical study for all three together but logic says it should be. I’m doing that and from what posted here, so are a lot of the MOs who are aggressive.

Schwah

[p3d1]

I would agree with the advice given here. I had a similar Dx last year, was treated with Docetaxel and Firmagon, you can read my profile for the details. This caused a reduction in my PSA which I hope will be durable. Now taking Zytiga, Metformin and Crestor to try to maintain the response.

I would also recommend reading Charles "Snuffy" Myers book, It was a great help to me.

I wanted to be able to do something to help myself and the advice was exactly what i need.

The first few things are free, Exercise (walking 10,000 steps a day), Diet (No Red Meat, Eggs or Dairy), Resistance training to maintain muscle mass. Get your BMI to within a healthy range (Eat less - Move more). I believe that these can only help.

The next thing is knowledge, coming on here I found was is a great source. I wanted to learn as much as I could.

The last thing are supplements, not everyones choice but I found the research on SOME supplements to be strong enough for me (search POMI-T).

Good luck.

[Rod98168]

I sympathize with you and my advice is that you need to be on zytiga now! I'm surprised no doctor has suggested that but that's usually par for the course. I had to find out the newest and greatest therapies for myself because the doctors weren't doing it. I literally had to tell my oncologist that I was eligible for zytiga even though I only had local metastasis with one lymph node near where my prostate used to be. But it was like pulling teeth to convince him that I was eligible. It wasn't until I went to the Mayo Clinic oncologist for a second opinion and he said yes I can take zytiga, that the other oncologist finally agreed. Really a bad situation when the patient has to advise the expert prostate oncologist on what he is eligible for. So my advice is to listen to your doctors but do your research also.

[Ldb01]

Please tell us where he is having the genetic testing and where ? Are you in the USA ?

[kick-prostate-cancer in reply to Ldb01]

Stanford Medical Center. Yes, in the US.

[Ldb01 in reply to kick-prostate-cancer]

Thank you I will check it out

[jholmq]

As is always the case Bill. But that doesn't negate my comments in any way.