Told to listen to his body

[Yecart1977]

At last appointment our question was “ how do we monitor his cancer” and we were told to listen to his body. By George, that isn’t good enough. We have fought this cancer aggressively to try and stay ahead of the game, and now our tool for keeping things in check is to listen to his body? Background in a nut shell, psa of 2.76 in April of 2015 but Dre positive. Led to prostectomy in July . Found Gleason 9, extracapillry extension, and lymph node involvement. 6 months of eligard and 39 radiation treatments. We now have had 6 nondectable psa scores. So feeling pretty good but knowing that his psa scores are not a very good indicator of his cancer we wanted to know how his cancer would be monitored. Hearing that we should just listen to his body and continue to get psa Numbers feels so passive. Also through some research , found that high Gleason and low psa cancers can be very aggressive. We have asked about scans but they tell us that rising psa indicates the need for a scan. My hubby can not have a mri because he has an implanted defibrillator. Are we really suppose to just sit and wait for the cancer to get large enough for him to feel it in his body? He is a healthy active 61 year old male who watched his dad die in a lot of pain from prostate cancer that went into his bones. We want to do everything we can to stay ahead of this. Thoughts?????

[Tjc1]

Hi, is his psa still undetectable? Thats as good as it gets. Im no doctor but keep an eye on his psa. I have noticed that those with a prostectomy any upward change in psa is worth looking at, especially the doublng time. Hope this helps.

Thomas

[Yecart1977]

Yep, still undetectable and praising God for that but our concern is his psa has proven to not be a good indicator. We will keep on getting the test but wonder if we shouldn’t be doing something else to try to catch this monster before it attacks. Listening to your body is a great over all strategy but when you are dealing with cancer I really don’t want to give it enough strong hold to the point he is feeling symptoms. That feels like giving the cancer the advantage.

Thank you for the reminder to continue psa testing. We chose radiation when his psa began to slightly rise after surgery! I encourage everyone to keep a close eye on those numbers.

[noirhole]

At undetectable I would monitor PSA every 6 months 3 months if they will do it and if it goes up slightly I would demand a scan. I have historically had low PSA when detected ( July 2014) I had a PSA of 8.5 and a Gleason of 7 to 9 in 10 out of 12 cores. Cancer had spread to lymph nodes and bones (it was not a good week). Just the other day went to the urologist because of blood in the urine. They said for me to have a tumor in my bladder my PSA should be way high mine was 3.3 up from 2.6 and CT scan found mass in my bladder. Going for a cystoscopy Thursday. So yes listen to your body but be careful. I will now demand a scan every 6 months. If for nothing else peace of mind.

[Yecart1977 in reply to noirhole]

Praying for you.... this is exactly why I wanted to post my concerns. I just don’t believe relying on symptoms in my husband’s case is the right way to. Monitor his cancer. Hoping your battle is successful and Thursday brings good news

[cfrees1]

I believe that Dr. Who has the rare version which does not express PSA. Perhaps he has some advice for you.

[Hidden]

I'm not a doctor, but as far as I know there are low PSA prostate cancers, but not no PSA prostate cancers. Once you don't have a prostate, the PSA is valuable indicator of progression. The fact that it's undetectable is fantastic, it's what we all hope for. As long as it stays that way, you should not be concerned. It could stay undetectable, or only rise after many years, you don't know. If it does eventually rise, then you can consider what you are going to do about it, if anything. You'd be looking at imaging, PSA doubling time and of course how you feel.

I think what you need to do right away is a happy dance for your undetectable PSA.

[Yecart1977 in reply to Hidden]

I DO understand what you are saying but I want to be more pro active vs passive. From what we have read it seems that his stage 4 cancer with low psa can be an indicator of very dangerous type of cancer. Feels like waiting till he “feels” something is allowing cancer to have the upper hand. We know most prostate cancers are slow growing but we seem to be in that small category of a more aggressive prostate cancer... just so want to try and stay ahead of this monster. We plan on a very frank conversation with both his medical oncologist and rad con in the next few months

[Hidden]

He could get PET/CT scans to look if there are metastasis. 11 C acetate and Gallium 68 PSMA are the most sensitive.

If the cancer were neuroendocrine type they already had to know because of the pathology. These cancers have low expression of PSA, PSMA and high malignity.

If this were his situation, 11 C acetate PET/CT could be the most sensitive and it could be done with a very low PSA because those cancers can be metastasis positive even when PSA is low.

In this process of monitoring a prostate cancer, because variations of the PCs ,PSA may not be a reliable indicator of tumor load. The extreme is the neuroendocrine cancer.

Some points to discuss with your doctors.

Best wishes

Raul

[Yecart1977 in reply to Hidden]

Thank you! We will definately be talking to him at our next visit in March. Very helpful

[MelaniePaul]

Hi Yecart1977 and all.

It is so interesting to read your post because the subject you are talking about has been very much on my mind for the past couple of days and I have have been meaning to post something about this.

When my husband ent for his blood tests in April of last year, his PSA was at 7. The doctor asked if he was in pain. And when my husband said that he wasn't the doctor said, "Then we don't need to do a scan. When the PSA is low and the patient has no pain we don't do scans." Well, three months later my husband was very symptomatic and they did the scans and found that, while his PSA was still relatively low, he had now mets in liver. So what I am trying to say to you is: Don't take the PSA as the only indicator. Insist on a bone scan every couple of months. The scan together with the PSA are a good indication of what is going on. Only to look at the PSA is absolute rubbish. I don't want to worry you, but I want to be honest.

Mel.

[Yecart1977 in reply to MelaniePaul]

So sorry that you are dealing with this.... you and your hubby our in my prayers. May i ask? Did he have his prostate removed? How long ago? I know no 2 are alike but I do believe in learning from others as they go before us. Best wishes.

[Hidden in reply to MelaniePaul]

For a man without a prostate gland, there is big difference between a PSA of 7 and an undetectable PSA. Sorry, but I just need to point that out. It's low PSA vs. no PSA.

[Dan59]

First congrat on the Undetectable psa. Alkaline phosphatase is a liver marker that if elevated may represent growing of bone mets ,should be a part of the liver markers he already get. There is also the bone specific alk phos, that can be ordered and may be helpful. Did the biopsy indicate nueroendicrine differentiation (small cell)? One can have various blood labs to check for nueroendicrine , ehich would produce very little psa and spead with low psa, such test are CGA, NSE, Cea. Also since his Dad died of pca , it could be gentetic and I would suggest a quadrant blood test to check for genetic mutation that may have been inherited, these mutations have specialized meds you could keep in back pocket, but that work very well with there assigned mutations, I read somewhere that some of them produce an 88 % responce rate. Perhaps your Dr. has ruled out small cell, and that is why he said watch and wait, the genetic testing should be done anyway. I wish you the best, He is doing well now, take a deep breath in and breath a sigh of relief. We are all here for you! Please keep us Posted

[Yecart1977 in reply to Dan59]

Thank you for the reminder to celebrate where he is at this moment . How do we find out if his cancer is small cell? Got to tell you that your post made me realize we have a lot more research and learning to do... most of it was Greek to me😊 but we will look into it all. Thank you

[Yecart1977]

No. He had prostate removed as stated in original post. Pathology report after prostectomy was Gleason 9 extracapillary extension lymph node involvement had to remove right nerve bundle. After surgery psa began to creep up so we opted for the radiation. Now we are celebrating undectable psa # for the past 15 months but are uncomfortable with just relying on psa and how he feels to monitor his cancer.

[Dan59]

It would say on the biopsy path report, also the blood markers CEA, NSE ,and CGa are elevated in small cell, ask the Dr, if he has small cell. I wanted to say take ina deep breath and say a prayer of thanksgiving. Prayers are why I am still alive.

[Hidden]

Just a comment on "listening to your body". Did you ask his Meducal Oncologist, what he meant? I ask because when I first started treatment fir metastatic prostate cancer fourteen years ago, both my Medical Oncologist and my Cardiologist, who is a long time friend, said exactly the same thing. Further conversation led me to believe that:

If I was tired, rest. If I did not want to travel, don't. If I was being nagged, walk away. If I wanted quiet time, take it. Plus a host of others things that my body told me. Listen to what your body has to say. Do what you really want to do and not what others want you to do at that moment in time. Above all, relax and set worries aside. Deal only with the issues at hand fir your health.

This was my take away after further conversations. It is what I continue to practice.

Congratulations on the undectables! Stay aggressive, read, and above all kick the bastard down.

Gourd Dancer

[Hidden]

I am in the same boat. My PSA was only 2.7 when I was diagnosed a year and a half ago (failed DRE too) with gleason 8. I was also told that I wouldn't be eligible for any new scans (the coarse scans I got after diagnosis were negative) until my PSA reaches 2.0. I opted for HIFU surgery, so my prostate is still there. Recent PSA readings have been undetectable. So I have the same question -- what do I do now to stay on top of this disease? I just turned 68.

[Yecart1977]

Would love to hear your thoughts! Feel free to email me [e-mail]

[Caring7]

If you are this concerned - and it’s a complex case I think - get yourselves to a cancer research ccenter for a consult. It’s the best thing we do. It’s sort of a second opinion but usually/often it’s more if an expert on board. We call him our uberoncologist. Reg med onc is happy to get support of expert - a doc who only does prostate ca and is aware of all cutting edge research. Dana Farber Boston. Johns Hopkins MD. Mayo MD Anderson. We see Eric Small at UCSF. This person can give you a more comprehensive picture. Totally worth it. Insurance should cover it. We fly five hours 1-2x a year to fo this. Again totally worth it.

Also look into cancer survivors support groups. I believe they deal more with the anxiety of being “cancer free” but living with that worry it will come back.

Best wishes for you and as others have said - enjoy this positive space. Take a vacation? Do stuff you love. Don’t let the cancer/fear take over your life.

PS I would not accept that doc answer either! Give another chance to explain but if not switch docs!

[Yecart1977]

Thank you so much for your answer and encouragement.