Diagnosis

[Larryfanman]

I was diagnosed -With metastatic prostate cancer

Can someone help me figure this out

I was wondering – – the doctor told me they found cancer in all the cores and I’m just a little confused

? —- and this is what was in the official paperwork ⬇️

The trus biopsy revealed 5+4 ( Gleason 9 ) in 3/6 Cores in the right and left lobes

CT and bone scan demonstrate 2 vertebral lesions ( in the spine )—- and enlargement of BILATERAL RP node’s

And enlargement in the BILATERAL RP nodes

I guess enlargements means cancer— but what does the DILATERAL – RP node mean ??

[Larryfanman]

They found local lymph node involvement— ( ( maybe three or four places ) PLUS 2 mets in the spine— with this diagnosis would this be considered OLIGOMETASTASIC—- or does the Gleason 9 throw that out the window ??

[Schwah in reply to Larryfanman]

I was diagnosed with ogliometastatic PC 9 months ago with 3 suspicious bone Mets. Not sure if the lymph node involvement for your situation changes that or not. Interestingly my oncologist gave me chemo , Zytega and Lupron at the beginning thinking that hitting it with all three while the monster was still weak might kill it for good or at least give me a long remission. Studies have shown that Chemo and Lupron early helps as does Lupron and Zytega. After the chemo I did radiation on the theee Mets. No studies yet on all four of theses together but my second opinion at ucla said it made logical sense and they’d like a study's. They just couldn’t recommend it without a study proving it. So far so good with PSA down to .02. I have not heard of many on this site going down that far. I’ve gained a lot of respect for the knowledgeable people on this site. I’d love to hear their thoughts on this aggressive plan for recently diagnose metastatic PC. Seems like one risk is not much left in the bullpen if and when it comes back.

Schwah

[Larryfanman in reply to Schwah]

Schwartz

Thank you – –

That PSA.of .02 is amazing 👍

HOW LONG did it take for your PSA to get down to .02 after you started treatment ??

My PSA was 28 at diagnosis

After 3 1/2– 4 months of treatment

It is now .17 — I hope it continues to come down

[Schwah in reply to Larryfanman]

I am on month 8 and just hit the .02. Each new psa test has bedn lowet than the previous. I think I was about down to your .17 at the same time frame as you. A 2002 study showed that the lower you go down on Lupron in the first 6 or 7 months, the longer your life expectancy. They showed people who went below .2 had The best long term results. Hopefully you are still on the way down. What are you taking now ?

Schwah

[Larryfanman in reply to Schwah]

Lupron shot ( every six months ) and chemo— six cycles three weeks apart

Last week I took my fourth chemo treatment — The chemo and the Lupron has not really affected me much

I sure hope mine keeps going down like yours has —— when did you actually get diagnosed with cancer ?

Boy I was just sitting here thinking – – this is sure a sad lonely road — for some reason I’m so depressed tonight

[lincolnj8 in reply to Larryfanman]

It is a sad lonely road Larryfanman. I get depressed like you do. I don't know, but I think of others especially children that have their lives altered because of disease or other things that happen in life. For me that kinda puts it in perspective. I've lived 66 years of basically a great life until diagnosed with this last Christmas. And my life right now isn't so bad. Just has a few bumps in the road. Hang in there, this is a great site for information and to vent..

[Larryfanman in reply to Schwah]

I’m sorry - – I see where you said nine months ago- That had to be devastating when you found out

[Schwah in reply to Larryfanman]

I was actually diagnosed 7 years ago with Gleason 8 but very small amount. No sign of spreading at that time. Then psa started going up so I went to Arizona for this new test called a c-11 acetate scan. They saw three very small Mets in pelvis and ribs. So I hit it hard with everything. I highly suggest you ask your dr amount adding Zytega with the lupron. Stampede 2017 trial showed that using Zytega along with Lupron at first sign of metastasis increased longevity by 40% over lupron alone. I also zapped my 3 spots with radiation. That was a piece of cake. Three one hour treatments. The Radiolgist and my oncologist think that the radiation may invoke your immune system to also kill any micro metastasis that can’t be seen. I thought that was crazy but I went to ucla for a second opinion and although no proof yet the radiologist there agreed that in theory it could work. Anyway if you are handling the Lupron well and handled the chemo well, why not go for the killer blow on what’s left of the cancer inside you. My dr is dr Scholz. He’s written a few books on the subject including his most recent one called the “key to Prostate cancer”. There’s a whole chapter on ogliometatisis. He does phone consults that your insurance might pay and if not is a few hundred. Money well spent in my opinion. As for depression? Mine lasted a week. But I realized I have No fricken time for that. Working out hard and enjoying living. We’re all gonna die someday. No point worrying when. Enjoy each moment man and stop feeling sorry for yourself. It doesn’t help anyone. Lots of people have it way worse. I just lost a great friehd at 59 to brain cancer. Dead 6 months after diagnosis. Prostate cancer is very slow compared to most cancers. Go live your life and and commit to not feeling sorry for yourself. It works. Exercise is a big big help too physically and mentally. You’ll do fine.

Schwah

[ucladany in reply to Schwah]

Nice post my Brother, I needed your pep talk. Thank you.

[Larryfanman in reply to Schwah]

Schwah

I did ask my doctor about ZYTEGA along with chemo and Lupron – – and he could not recommend it

I also ask him about radiation for the bone spots- he said he will do a bone scan after I’m off chemo for three months —then depending on what he sees might consider it —- he said there might not be nothing to radiate —

DOES THAT SOUND RIGHT ?

DR SCHOLZ — is in California ? correct

How far did you have to go to see him ?

Do you live close to where he’s at ?

[lincolnj8 in reply to Schwah]

I was also diagnosed with stage 4 prostate cancer 6 months ago. Cancer in the bones, lymph nodes plus some organs. Hemoglobin in the 5's after admitted to the hospital. As you, I'm on lupron, zytega and prednisone. My psa went from 851 down to .4. My hemoglobin is now in the 12's. At the time I think my doctor was just concerned about the hemoglobin count being so low. 4 pints of blood kept me alive at that time in the hospital. Without your body producing hemoglobin, not much else matters. No radiation though. I've beat the beast for the moment. I am strong, I've gained some weight and my appetite is excellent. I was unable to eat 6 months ago. Don't drink or smoke and my doctor said that I can have that bowl of ice cream if I want. My bone are producing blood again, so enjoying the moment. I get a chemo shot every 3 months {I call it the butt shot - I assume its Lupron}. Infusion IV every month with a B-12 shot. Got to keep moving and enjoy life.

[BartonKen in reply to lincolnj8]

Diagnosed on holiday in NZ Feb I/2018 Stage 4 Gleason 4/5 PSA 500. I couldn’t get an early flight home to Canada lying down in Bus Class, which was the only way Air NZ would transport over the 13 hour flight, so opted to stay and take initial treatments their in Auckland. Glad I did. 5 consecutive days on four lower vertebrate ( one with exposed spinal chord), followed two weeks later with ZOLADEX injection, every three months. Back home it took 10 weeks to go through the consult and confirm process before getting first chemo treatment of Docetaxel, followed a week later by radiation on a pain hotspot at top left pelvis where sciatic nerve goes through the pelvic bone and two days later a second ZOLADEX shot. Came into hospital here Last Thursday as pain pills weren’t doing there job at all. Got that under control with Hydromorphone 8am 8 pm coupled with Tylenol (22) plus Dexamethasone. Also been taking Tamsulosin for past 20 months when an enlarged Prostate was first noticed. Funny thing, after second shot of ZOLADEX the aggravating hot flashes reduced from 5 at least every of every day for past three months, down to maybe 5 in any given 24 hour period. Count my blessings. PSA started at 500 Feb 8, 2018, dropping to 80 after initial NZ Radiation, down to 27 after first chemo and then 22 on June 7. I’m rooting for 6 following June 23 next Chemo. In Canada the Hemoglobin normal range is 135/169 mine is at 129 on June 7 and then 108 on June 9. Will talk to Doc about that this morning. I’ll see my Oncologist at B.C. Cancer institute on June 14. This is a great forum. Much knowledge emanates from head, as well good cheer. I get weepy from time to time, but it passes. cheers from “ more miles”

[Tall_Allen]

I think it refers to your retroperitoneal lymph nodes, which are in the lower back part of your abdomen. Bilateral means those lymph nodes are enlarged on both sides of your body. Lymph nodes can be enlarged due to disease, but the location not far from your spinal lesions is suspicious. If your PSA wasn't high, your doctor may want to confirm that those are indeed metastases.

Your next stop is a visit with a medical oncologist. Here's an article describing the current standard care given for your kind of prostate cancer and other more experimental options.

pcnrv.blogspot.com/2017/06/...

[Larryfanman in reply to Tall_Allen]

OK thank you

But do you think this might be all OLIGOMETASTATIC

[Tall_Allen in reply to Larryfanman]

4 abdominal LNs plus 2 on the spine would put you in the category that the CHAARTED trial found would benefit greatly from early use of docetaxel.

[Larryfanman]

Thank you

I was pretty sure 2 or 3 mats was part of the definition of —oligometastatic

-

But what I wasn’t sure about- the fact that it was a Gleason 9 —- and that lymph nodes was involved ?

[Break60 in reply to Larryfanman]

Since high G score usually leads to mets it would seeem that a G9 could have oligomets. That’s my case with never more than two visible mets at a time.

Bob

[Canoehead]

Oligometastatic is not so much a diagnosis, as it is an intermediate stage of the disease, where doctors are now beginning to believe that localized treatment (surgery, radiation or both). in addition to systemic treatment (ADT, chemo) may be helpful. Confirmation probably requires some sensitive imaging (PET scan), and in my case the docs also wanted to see how I responded to systemic therapy. Here is an excerpt from an article I found in a quick google search.

“Metastatic cancer is synonymous with advanced-stage disease, where malignant cells are disseminated through the systemic circulation. Cancers are, and this dissemination is, believed to occur in a stepwise fashion. In their 1995 article, Hellman and Weichselbaum postulated an oligometastatic state with limited metastasis burden as an intermediate state in the malignancy spectrum prior to widespread metastases.[37] In their opinion, oligometastatic disease may reflect a time point in the malignant process when local therapies can potentially achieve a durable response to treatment—or even cure.”

Obviously the word CURE is what has us all pretty excited. That’s a hope, but the prospect that local treatment of metastatic disease will extend survival seems pretty realistic.

[Larryfanman in reply to Canoehead]

Thank you for your input

I’m new at this- I was just diagnosed four months ago – – i’m just trying to figure out what my best options are ❓

[Canoehead in reply to Larryfanman]

If you were diagnosed 4 mths ago, I assume you are getting treatment now. The link that Tall Allen provided is a great summary of what’s out there. 3 things that are always helpful are: educate yourself as much as possible - lots of great info can be found here and in other places on the net. Second, write down questions for your Doc as you learn. Third, if in doubt or not satisfied get a 2nd opinion from a center of Rxcellence. Maybe get one anyway, even if you think your current treaters have it adequately covered.

[Break60 in reply to Canoehead]

I’m hoping that treatment of oligomets at least delays widespread mets; a cure sounds unrealistic but if it occurred it would be miraculous ; I believe miracles are possible but God helps those who help themselves 😇!

[leo2634]

I have similar condition Gleason 8 and 9 across the board, lymph nodes, and bone Mets in pelvis. I was prescribed Zytiga,Prednisone, Eligard as my first line of treatments along with Xgeva injection once a month for bone Mets. My PSA was 14.7 and after one month of medication dropped to 0.1 almost undetectable. I feel good with only the hot flashes as side effect. Please stay active and most importantly keep a positive attitude. Best of luck Leo.