Three months after RP to test PSA?

[HealThyb]

My husband had RP in May 2019. The RO suggests testing follow up PSA prior to three months can give false levels that it takes 3 months for accuracy.

I have also read it is important to start treatment for advanced prostate cancer within two months of surgery for better results.

We received his Decipher test results and they were worrying. 70% recurrence within 5 years, over 20% mortality in 10 years.

Gleason 7 before and after surgery May 2019

PSA in Dec 2018 and Jan 2019 33+

Surgery revealed spread to bladder neck and 5 of 27 lymph nodes

It is so hard to get any appointments in less than 5-6 weeks so trying to be proactive. Can not fathom waiting as long again as the first round from Dec to May before any treatment for PSA.

Thanks

Janet

Mom of 4, love being a part of this forum finally a place for answers not easily found in the prostate doctor office structure

[pjoshea13]

Hi Janet,

Yes, it is disconcerting to find that PCa docs lack the same sense of urgency that we patients feel.

With "spread to bladder neck and 5 of 27 lymph nodes", you probably suspect that the PSA isn't going to be undetectable 3 months after RP.

I don't know if salvage radiation is an option, but that has to wait until the prostate bed has healed.

ADT can be started any time, but it isn't curative, so a delay isn't significant, IMO. In fact, a delay pushes out the point where the cancer becomes resistant.

Everything is stressful in the early days. Find things to do that you both enjoy. Push the disease out of your minds for an hour or two each day.

While you are waiting, I believe that there are things you can do. I have a number of posts going back several years, but the series on inflammation is top on my list. Subclinical inflammation kills. It speeds progression. It is predictive of poor treatment response. & yet, imflammation is easily managed.

healthunlocked.com/advanced...

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-Patrick

[HealThyb in reply to pjoshea13]

Thanks for your support and information. It is a lot to take In but I take from this to try to minimize inflammatory foods like red meat, sugar, alcohol, processed foods and to try to drop BMI is very important predictor of survival rate.

[pjoshea13 in reply to HealThyb]

I take a number of natural polyphenols every day. They have anti-PCa properties (in the lab) & also lower inflammation.

The problem is that cancer is an inflammatory condition. Diet alone will not be enough, because the cancer is causing inflammation.

Reducing BMI, in itself, is a good survival tactic, IMO.

With PCa being generally a slow-moving disease, we have time to make changes that might profoundly affect survival time.

Best, -Patrick

[NPfisherman]

Here is some useful information on salvage vs adjuvant radiation--insist on adjuvant--see below:

cancernetwork.com/prostate-...

also, get on ADT a few months before RT--see below:

ncbi.nlm.nih.gov/pmc/articl...

Best of luck to you and your husband. Hoping you get off this hell ship--the SS APC...

Don Pescado

[HealThyb in reply to NPfisherman]

Thanks so much!! This is helpful 💜

[NPfisherman in reply to HealThyb]

Your welcome....it is hard to be new....and overwhelming with so many emotions....fear, hope, anger, etc...I got on this hell ship 8 months ago...my big issue initially was sleeping...my mind would race with this information....I take melatonin and it allows me to sleep...All the best....

Don Pescado

[Tall_Allen]

I think the lymph node metastases is good enough reason to go ahead with ADJUVANT radiation, without waiting for a 3-month PSA (which would be called SALVAGE radiation). Adjuvant radiation starts with at least 2 months of hormone therapy. He can start off with 7 months of hormone therapy to give time for the newly cut tissues to heal and to regain continence. The hormone therapy will stop the cancer in its tracks.

To get the ball rolling, you should make an appointment with a radiation oncologist, rather than a urologist. They are usually easier to get in to see, in my experience. He can probably also give him a Lupron shot.

[HealThyb in reply to Tall_Allen]

Thanks Allen. We met with RO 3 weeks or so post RP who felt this wasn’t an option for him given the likelihood there is spread of micro cancer. Then we met with a local MO who suggested Lupron and Zytiga and prednisone if after 3 months there was marker. We are headed back to DF July 24 to meet with RO and MO. I’m just worried we are missing a critical window to start ART

I am trying to believe that our doctors know what they are doing but I sense they don’t since this isn’t clear. No mets on CAT or bone scan in March; no mets on Pet scan or MRI on May 7. But RP surgery mets but outside the prostate.

I know it is unlikely but I still think we are in the ballpark for a cure treatment not just abatement treatment. ART is the only treatment option at this point that actually looks like it might cure pc.

I appreciate all of your work Mr. Edel. Your online research blog site is very impressive and helpful. Janet

[Tall_Allen in reply to HealThyb]

Perhaps email the RO the PET scan results. He may change his tune.

[dadzone43]

So glad you are paying attention and advocating for your mate, Janet. As a patient, I understand the urgency you and he feel. As a physician, I also understand that this is not an emergency, and that it takes a while for the PSA to settle down after surgery. It is not the PSA you are fighting. That is only a marker and really easy to obsess over. I had my first post-op PSA at six weeks and spent that time looking at diet, doing a lot of meditation about clearing out my pelvis of "bad stuff," attending to inflammation with turmeric and other herbs (POMI-T) and reading as much as I could about PCa. The Scholz book was the most up-to-date I thought. Important to remember that a lot of healing is going on the first eight weeks and cooking those healing tissues with radiation is asking for complications. Give it time, Janet (I know: easy to say and hard to do). Hugs to both.

[HealThyb in reply to dadzone43]

Thank you for a very good reminder for patience and to let things heal. Given our experience with our (I hesitate to say team because it really has felt like you just get bounced from one to another rather than working together) doctors prior to RP, we are trying to be proactive so we don’t end up waiting 5 months again for the next best treatment option. Our next appointment is after 8 weeks in Boston so it will necessarily be a wait until we move forward. I do fear we are losing out on the window to start ART though ...

[j-o-h-n]

Greeting HealThyb, Take it a bit slower....

"looks like it might cure pc." There is no cure for Pca... just controlling it.

"70% recurrence within 5 years, over 20% mortality in 10 years." Statistic, that's all.

Keep the faith, cause God is on your side.

Good Luck, Good Health and Good Humor.

J-o-h-n Friday 06;28/2019 2:01 PM DST

[HealThyb]

Thank you! I’m going to take in all the support from this group and give myself permission to breathe. Your words to take it slow made me realize I walk around like I am holding my breath. I am forgetting to be grateful for each day and getting way ahead of myself. I like your perspective 😊

[oldbeek]

Were there any positive margins? Where are you located? Type of insurance?