Progressed to bones...advice welcome! - Advanced Prostate...

Advanced Prostate Cancer

21,033 members26,216 posts

Progressed to bones...advice welcome!

bean1008 profile image
30 Replies

Just got results from my G68 PSMA at UCLA...two lymph nodes and one bone lit up. Feeling a bit discouraged this morning. :-(

- Low to intermediate PSMA expression in at least two left internal iliac chain lymph nodes, one of which is enlarged and measures 13 x 14 mm, SUV max 2.5 (6-428). Additional subcentimeter adjacent lymph node also with low PSMA expression, SUV max 2.2 (6-438).

- Faint sclerosis of the right anterior inferior iliac spine with high PSMA expression, SUV max 10.5 (6-434).

If anyone has been down a similar road I'd love your advice. Hoping to get in to see my RO and MO at Seattle Cancer Care next week to talk about options. My history is I had an RP two years ago in Dec 2018 and then a PLND last March 2020 for four lymph nodes that were found in a previous G68 scan in Dec 2019. Recent PSA doubling is 3 months and I'm due for a test in two weeks...will likely go from a 1.3 in August to twice that.

Best wishes to all my brothers!

Written by
bean1008 profile image
bean1008
To view profiles and participate in discussions please or .
Read more about...
30 Replies

Relax, I have had a met on the L5 vertebrate of my spine for nearly six years. Two years ago they zapped it and it's been stable ever since. It's going to happen, roll with it.

bean1008 profile image
bean1008 in reply to

Thanks SO much, Fran!! My stress level just dropped reading this!!

samahieb profile image
samahieb in reply to

Yeah they zapped two spots on my right hip with SBRT. Virtually undetectable now.

bean1008 profile image
bean1008 in reply to samahieb

Fantastic, Sama!

keepinon profile image
keepinon

I was looking at your history. Have you been on ADT plus Zytiga or similar?

Any radiation?

bean1008 profile image
bean1008 in reply to keepinon

Hi! Nope...haven't had any treatment except two surgeries. Was given the option earlier for the previous lymph node issue of radiation or surgery....surgeon said there was a slight chance of a cure by going that route but unfortunely I was one of those that it didn't work out as hoped. Thanks for asking!

Tall_Allen profile image
Tall_Allen

PLND for specific LN metastases is really a bad idea. Where there's some you can see, there have to be more you can't see. If you decide to do something about them, the entire pelvic LN area must be treated. However, given the spinal met, it is not at all certain that radiation will accomplish much. If safe, why not?

But much more important is starting on some advanced hormonal medication.

bean1008 profile image
bean1008 in reply to Tall_Allen

Oh, he took at a ton, Allen...I think 30+ nodes when I had my surgery in March of this year. There were three that were positive in the path report. I imagine radiation is in my future and soon...thanks for the reply!!

Tall_Allen profile image
Tall_Allen in reply to bean1008

It doesn't matter how many he took - there are 100-200 in the area. They are nearly invisible. No one can get them all. But radiation on top of that degree of surgical removal increases risks of lymphoceles and lymphedema. It may not be worth the risk, given that the benefit is uncertain.

Systemic treatment with ADT plus either Docetaxel chemotherapy or Abiraterone or Enzalutamide.

I did ADT plus Docetaxel at diagnosis and would do that again because:

You are done with it in 18 weeks and can do another treatment with ADT after that vs possibly years on Abiraterone or Enzalutmide

You are younger and probably more fit than if you wait until later

It kills a wide spectrum of cancer cells instead of just hormone sensitive cancer

The side effects are very tolerable for most

bean1008 profile image
bean1008 in reply to

Thanks so much, Gregg! I've recently read that chemo is being used earlier now and it seems to make sense to me. Go attack the cancer when you're stronger and healthier...try and nip it in the bud right off the bat rather that it being a secondary line of treatment. Best wishes to you!

in reply to bean1008

Docetaxel chemotherapy for prostate cancer is a really underutilized treatment. So many people are afraid of chemotherapy and don't do it. That's unfortunate because Docetaxel is really one of the easier ones to tolerate for most. It also seems to have more benefit when done early vs. late. I didn't want to do it at first, but changed my mind and did it.

So glad I did and I'm fairly sure that if I hadn't done it and things had taken a turn for the worse, I might have regrets.

bean1008 profile image
bean1008 in reply to

Definitely on my list of questions fir my MO next week! Thanks!

GP24 profile image
GP24

I do not like to see metastases on my PSMA PET/CT. Therefore I would zap these with SBRT radiation. You can combine this treatment with intermittent ADT.

bean1008 profile image
bean1008 in reply to GP24

Thanks GP! I thought they’d want to do that as well but RO wants to try ADT first

GP24 profile image
GP24 in reply to bean1008

No, he just has no Cyberknife/SBRT radiation system.

Lee70 profile image
Lee70

Hi,

12/14 my husband Bob had 5 lesions on his spine with possible lymph node Metastases,

started Cosudex for 28 days & 3 monthly Lucrin injections for 1 year, by 7/15 after PSMA Scan there was only 1 small activity in spine and none detected anywhere else, so ceased ADT until -

1/17 PSA started to rise slightly so Bob had another PSMA Scan - avid lymph nodes in the upper pelvis retroperitoneum (highest at L2/3 level) consistent with nodal metastases. Solitary PSMA avid sclerotic bone mestastasis in the Sternum.

2/17 start Cosudex 50 mg & Avodart 150 mg daily plus 3 monthly Lucrin injection, Bob continues on this protocol, his PSA remains undetectable and he is very healthy and well.

Best Wishes & cheers,

Lee

bean1008 profile image
bean1008 in reply to Lee70

Thanks so much, Lee! Glad to hear that things are working for your hubby! Keep it up!!

leo2634 profile image
leo2634

I have multiple mets throughout my whole body including one in my skull. The ADT treatment I'm on has made my lymph nodes infected undetectable now and bone mets have subsequently been fir the most part dormant too. There are many treatments available to us now to keep the Beast at least under control. Never give up Never surrender. Leo

bean1008 profile image
bean1008 in reply to leo2634

Thanks so much, Leo! Very encouraging to read your comments! Best wishes to you!

RonnyBaby profile image
RonnyBaby

I was node positive at Dx (G9 - PSA @ 300+ in Spring of 2017)- radiating the pelvic area is a GOOD idea - not just focusing on ONE or 2 spots - probably won't do the job.

You need some form of ADT - which you may need for up to 2 years - your previous surgeries 'didn't get it all' - some escaped the capsule. Of course, you need to consult a medical professional to ensure you are on the right path.

Escaping the capsule changes your staging, but that is nothing to panic over. There are many men who progress to this stage and do well with treatment. I'm one of them.

Also note that you are still castrate sensitive and your PSA levels are NOT thru the roof.

I've ALSO had a BCR - my PSA is closer to 8 and I've just finished 2 scans - I'm feeling fine and will begin some form of ADT in the near future.

I'm waiting for the PSMA scan next - 'all clear' on the latest bone and CT scans ....

My 'micro-mets' - which were the basis for progression - will be detected with the more sensitive scan - like yours did - there is an area or areas that 'they' haven't found yet - but I'm not worried - learned that this is a slowly progressing disease for MANY - even in some of the advanced states.

Wishing you well on your journey ....

bean1008 profile image
bean1008 in reply to RonnyBaby

Thanks Ronny! Sounds like we are on a similar path! I'm off to the MO on Nov 16th and I imagine the ADT will follow quickly after. I have plans for the next few years and this damn PC isn't going to hold me back! ;-) Best wishes to you!

MMK-XFuture profile image
MMK-XFuture

I had G68 a year ago and my entire spine lit up. Fortunately none on the lymph nodes. I thought for sure that was the end of me. Had radiation, Zytiga/Prednisone and Xgeva shots and my latest PSA is <0.003. Due for F18 PSMA in a couple of weeks.

I'm not a doctor and our cases are a bit different. Just letting you know there's always hope and plenty of options. Discuss with your MO and keep fighting, my friend.

bean1008 profile image
bean1008 in reply to MMK-XFuture

Thanks MMK!! I'm glad to hear that your treatment is working so well! I'm seeing my MO next week and will be asking about those drugs...sounds like you're on a good treatment plan! Best wishes!

User2008 profile image
User2008

Hello, bean1008. There are several treatment options as noted above by other posters, so please try not to feel down. I wish you only good results from whatever course you decide to take!

May I ask what prompted you to have the G68 PSMA? Was it the increasing PSA numbers or did you have other symptoms, such as bone pain?

I am asking because my husband has had undetectable PSA readings for several years, but is complaining of bone pain in his shoulder - sometimes debilitating pain. I'm wondering if it is necessary to wait until the PSA rises to request a scan?

Please keep us informed on your journey and what you decide to do.

monte1111 profile image
monte1111 in reply to User2008

My opinion only. Get a scan, have doctor check it out. May just be arthritis or something. Psa is only an indicator. Knowing is better than worrying. Best of wishes.

bean1008 profile image
bean1008 in reply to User2008

I’d had a previous G68 when my post-RP PSA started to rise. That’s when we found lymph node involvement which lead to surgery...my choice to try that route vs radiation or drugs. I had a very experienced surgeon and he was hopeful we might catch it. Well the PSA started to rise again and my doubling rate increased. I knew about the benefits of the G68 scan so reached out to UCLA to get another one. My Radiation oncologist said if it was him he would do the same and take another look under the hood before deciding on my next course of treatment.

Now I think I probably should’ve started ADT immediately after my first surgery since I had seminal vesicle involvement. My post-RP PSA was .009 so we were hopeful...and the surgeon didn’t suggest seeing an MO at the time. In retrospect....but can’t look back, right?

bean1008 profile image
bean1008

Agree with Monte...and am curious what his last PSA was?

Break60 profile image
Break60

I had sbrt to bone mets with great successes: Three fractions at 10 grays per fraction (30 total) per bone met.

bean1008 profile image
bean1008 in reply to Break60

Great to hear it's working for you, Break! Best wishes!

You may also like...

Ask for advice on my progress, mCRPC Cabazitaxel

metastases\\". No other issues for liver or lymph nodes thankfully. As I understand there is a...

Continuing intermittent ADT? or more?

common iliac, and retroperitoneal lymph nodes, most prominent L internal 2.2x1.3 (SUV max 36), most...

1st 68Ga-PSMA-11 PET/CT Interpretation please. Not last

Paragraph in question: “There are PSMA avid lymph nodes along the right common iliac periaortic,...

Is my cancer castrate resistant?

Retrocaval node (CT image 202), measuring 1.8 x 1.1 cm with SUV max of 38.4, previously PSMA-avid,...

Advice - Thoughts - Bone Marrow Suppression - Blood Counts