State of shock: Dx March 2021 Gleason... - Advanced Prostate...

Advanced Prostate Cancer

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State of shock

joeydashoe profile image
27 Replies

Dx March 2021 Gleason 9 mets to lymph nodes(in profile) after speaking to urologist, Ro,Mo.

Decided to go with MO's advice @ Cancer treatment centers of America . He put me on Abiraterone 1000mg Daily 5mg Prednisone daily Starting 8/1/2021 PSA 60 within 30 day went to undetectable. MO retired oct 2022 Switched to Northwestern Medical Had Pet scan Jan10 2023 saw Mo to discuss results And He told me that I was CANCER FREE according to scan and my Prostate has gotten smaller. still in shock CTCA told me the best thing I could hope for was to Manage my disease.

27 Replies
Jancapper profile image
Jancapper

I think your new MO was careless in his word selection. No doubt your PET scan results are encouraging, however, once a patient progresses beyond focal disease, generally the best you can do is manage the cancer as if it were a long term disease. Your treatment has reduced your tumors but are you really cancer free?

joeydashoe profile image
joeydashoe in reply to Jancapper

this is from report ABDOMEN: No pathologic tracer activity. Various sites of retroperitoneal uptake bilaterally. Corresponding all cases to the anatomic course of the ureters and therefore is consistent with excreted tracer activity in peristalsing urine. No separate foci of uptake are seen to suggest metastatic disease. Exophytic lesion of the left kidney is consistent with a cyst. A few calcified plaques of the aorta are seen. A few uncomplicated colonic diverticula are noted.PELVIS: No pathologic tracer activity. This typically no abnormal uptake is noted within the nonenlarged prostateBONES: No pathologic tracer activity. No suspicious osseous lesion. Degenerative changes are present.OTHER: Negative. CONCLUSION: No abnormal tracer localization to suggest residual, recurrent, or metastatic malignant tissue or adenopathy. No significant incidental acute abnormalities.Various additional nonacute findings are noted as discussed in detail in the body of the

Steel67 profile image
Steel67 in reply to joeydashoe

Excellent - celebrate!! Live life and stay vigilant!!

joeydashoe profile image
joeydashoe in reply to Steel67

Will do. Thank you.

Tall_Allen profile image
Tall_Allen

A cure may be possible if you have whole pelvic radiation.

joeydashoe profile image
joeydashoe in reply to Tall_Allen

good to know, because I never used the word cure. I was told I was cancer free, but I am a prisoner of Hope and I have received so much hope on this website and knowledge. I do not go more than a day without reading something on this website especially stuff by you the studies, you present your logical common sense. Approach thank you from the bottom of my heart whatever happens from here on out

Tall_Allen profile image
Tall_Allen in reply to joeydashoe

There are a couple of clinical trials now using this approach to find out who can be cured:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

Atdabeach profile image
Atdabeach

Joey, maybe I'm missing something here. Did you have any other treatment (such as radiation), or only the abiraterone w/prednisone? I have been on those, along with Eligard, for 6 months now, and will start proton therapy in 2 weeks. Everything I have heard about abiraterone suggests that it essentially stops the cancer from growing (by starving it of testosterone), and may well shrink the existing tumors, but will not on its own eliminate them. In combination with radiation, though, it is reported to be very effective, and that is exactly what my doctors are hoping to be curative in my case.

I have also had the impression that PSMA PET scans should be done before ADT, because those drugs (including abiraterone) can shrink small metastases to the point where they don't readily show on the scan.

Bottom line, I'm worried that you may still have cancer, and your new doctor may have given you a false sense of security. But I'm no expert, just another wannabe PCa survivor, so I may be wrong. In any case, I wish you the best!

joeydashoe profile image
joeydashoe in reply to Atdabeach

No Just adt Scanned before adt and two weeks ago nothing showed up this time gonna stay on adt for a while. switched to xtandi 1 month ago. because of cost (copay) again I did not say cured. Proceeding with caution.

MateoBeach profile image
MateoBeach in reply to joeydashoe

Don’t understand why you would switch to Xtandi when abiraterone is working so extremely well?

joeydashoe profile image
joeydashoe in reply to MateoBeach

My MO has informed me I no longer qualify for Copay so he switch me to xtandi

Yingsang profile image
Yingsang in reply to MateoBeach

I agree, especially since Xtandi tends to have harsher Side-Effects.

dmt1121 profile image
dmt1121

I hope the latest assessment is correct. However, many of us have undetectable PSA when taking the right course of treatment at the time (i.e. abiraterone) and PET scans do not generally identify prostate cancer when the PSA is below .2ng/ml.

I would say that you should not stop taking the abiraterone and instead get another opinion from a recognized expert in treating PCa because the words "cancer free" seems premature. I think you may still be in the category of managing the disease, so be sure before stopping any treatments.

Everyone here would be thankful if you are cured. It would be great!

joeydashoe profile image
joeydashoe in reply to dmt1121

I never used the word cured my oncologist said cancer free I am still under treatment taking Xtandi

dmt1121 profile image
dmt1121 in reply to joeydashoe

My mistake. I took the tone of your post to mean that you thought you were cured. I still find it somewhat irresponsible for an MO to say you are "cancer free" based on the information they had.

The best of luck to you.

joeydashoe profile image
joeydashoe in reply to dmt1121

Thankyou same to you will post future results

Mrtroxely profile image
Mrtroxely

YAY!!!!YAY!!!

YAY!!!

now stop looking at any of this.

Go.

Run.

Be free,

skip

Sing

Breath.

There's always got to be one grain of rice in the grannery that gets free.

Warm regards dude.

Enjoy

joeydashoe profile image
joeydashoe in reply to Mrtroxely

Thank you proceeding with caution

But I will never leave this group I've gotten so much knowledge and Inspiration I felt I should stick around and keep providing prayers and Support.

Teacherdude72 profile image
Teacherdude72

Are you still taking medications?

joeydashoe profile image
joeydashoe in reply to Teacherdude72

yes 160 mg Xtandi daily At least for the next three months

Teacherdude72 profile image
Teacherdude72 in reply to joeydashoe

Then while in meds you might have no sign of cancer but stopping? Sorry to say odds are will return.

Duk26 profile image
Duk26

WONDERFUL news!!! Stay well.

groundhogy profile image
groundhogy

Well, i am certainly not an expert on this forum, but I did read Scholz book .. Stages or Keys to PCa?

In one chapter, he covers ADT. One of his patients I think was a gym teacher. He treated him with only ADT. And he reported in the book that the man was cancer free many many years after stopping treatment, if i remember correctly.

Seemed like a cure to me. Might want to look that up

joeydashoe profile image
joeydashoe in reply to groundhogy

Proceeding with caution, going to stay on ADT for a while

groundhogy profile image
groundhogy

So Question:

i read the average little PCa cell lives like 2 years?

So, if you can go on ADT. And if that ADT can make the cancer just sit there..

Wouldn’t say a 3 yr course of ADT theoretically be able to cure?

Teacherdude72 profile image
Teacherdude72

And being Cancer free while on medication is just that - Manage your disease. I am on Nubeqa now for over 20 months and have no evidence of Cancer. If I stop Nubeqa it will come roaring back. I was diagnosed G9 in 2015.

joeydashoe profile image
joeydashoe in reply to Teacherdude72

What does you MO say ?

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