Husband thinks PSA undetectable means cancer is undetectable...I think not

[Vindog29]

So being lazy about writing my husbands history probably because I have no strength left from talking to him. If you look at past posts should bring you up to date..2018 Gleason 10,mets,lupron chemo,gene mapping nothing,zytiga gene mapping again,msh2 mutation,keytruda 2x,stopped because liver enzymes high,but scans show significant decrease in mets,and for 4 months undetectable PSA. Yes undetectable which to my husband means UNDETECTABLE cancer. He tells everyone one that and people think he is cancer free. I think he is far from it just dont know how to explain or perhaps I am wrong...

[Tall_Allen]

There are no known cures for metastatic PC, but long-term remission is possible. He is very lucky to have MSI-hi (very rare in prostate cancer), for which Keytruda is known to be effective. Why not live as if the cancer is gone, while maintaining prudent monitoring of biomarkers and with scans? If scans show a flare, perhaps he can resume Keytruda.

[Vindog29 in reply to Tall_Allen]

Thank you my husband will probably have me print your reply out and Frame it

[LearnAll]

Do you have any reason to believe that cancer is still active in spite of undetectable PSA ?

[Vindog29 in reply to LearnAll]

So perhaps you just gave me the answer I was looking for undetectable means pretty much the cancer is NOT active...NOT gone but dormant...scans in November at MSKCC so we will hopefully see a further decrease in mets. Thank you this was helpful

[tom67inMA]

IMHO, "undetectable cancer" and "cancer free" are two different things. Cancer can be present in a dormant state, and it's very hard to detect dormant cancer. This seems to be particularly true if one is on ADT, as stopping treatment may well wake up the dormant cancer.

Strangely, other people have come up to me and said "I heard you're cancer free now", and I have to explain "No, I'm still on treatment, and probably will be for life".

[Vindog29 in reply to tom67inMA]

Thank you now I understand...may you continue to be undetectable for a very very very long time

[Hidden in reply to tom67inMA]

I’m in the same boat . Undetectable ,but still on adt with no T... .. just happy to be alive .. take care ..

[Vindog29 in reply to Hidden]

Happy we are in the same boat....may we sail on smooth waters with the sun on our faces for years to come....

[Hidden in reply to Vindog29]

It’s not all smooth waters but it beats the alternative ... enjoy what we can enjoy now .

[Magnus1964]

With cancer we never say cured, we say the cancer is in remission.

[Vindog29 in reply to Magnus1964]

Thank you may there be a day that everyone with cancer can utter those words in REMISSION

[cesanon]

"scans show significant decrease in mets"

Does that not mean that the scans are in fact detecting some cancer, though it is "decreased"?

[Vindog29 in reply to cesanon]

And there lies my reasoning for this post...or perhaps it is there but since it is not growing, it is not active....more scans in November...I guess we will know further

[Hidden in reply to Vindog29]

Be happy Vindog that’s it’s not active .. let’s keep it that way amigo ...😂

[EdBar]

I like to think that my cancer has been beaten into a dormant state, I started Stage 4 with mets throughout my skeleton and several nodes. PSA has been undetectable for about 5 years now. No sign of active disease in scans. But it is likely just waiting for an opportunity or a work around to my ongoing treatment.

Ed

[Litlerny]

My PSA recently went above undetectable for the first time in the 4 1/2 years since I was diagnosed. Up to 0.22 in May & 0.47 in August. I was concerned, but my Mayo M.O. was happy that it’s staying so stable. He cautioned that an undetectable PSA does not mean that the cancer is gone, just that it is being kept from progressing (“dormant”). He also told me that in Stage 4 they are looking as much at new or increased symptoms occurring in spite of treatment as they are at small increases in PSA. So if your hubby is asymptomatic, that’s a good thing. Before people start patting me on the back about being stable, I always make it a point to tell them I am Stage 4, and by definition Stage 4 PCa is incurable. Until researchers find that magic bullet or miracle cocktail that makes PCa a chronic manageable disease, the battle goes on to keep it in check. I like Tall_Allen’s take on it...to live my life as if the cancer is gone, even if it’s still lurking back in the shadows trying to find the chink in the armor that will let it come back to bite me, while continuing the treatment protocols that will best keep it at bay for the longest time. I call it being “cautiously optimistic.” Meanwhile, life is VERY good. In many respects the cancer has given me a new-found appreciation of all of the things in life that I used to take for granted. For us, the saying “every day is a gift,” isn’t just a trite old adage. Best wishes to you and your hubby. 😎

[dadzone43]

As the rabbi said, you are both right. I would say that you are more right but if your guy prefers to call himself cancer "non-detectable" is there harm in that? Probably annoys the

s--t out of you, but it not denial. Should his PSA rise as most would expect, he can THEN reconsider.

[Hidden]

Does it really matter in the larger scheme of things? What really matters for any cancer patient to stay positive. In fact, with metastatic prostate cancer in 2004, I ran away from any negative comments or thoughts. I lived my life only in a positive environment. Negative thoughts drain you of energy and keep you from being in the present moment. The more you give in to your negative thoughts, the stronger they become.

Live in the present moment; your husband will deal with any medical downturn. Rejoice, if he thinks that he is cancer free. Support him. And, again, live in the present.

Gourd Dancer

[Hidden in reply to Hidden]

Sage advice GD .. 👍

[JimVanHorn]

When I realized that when a normal or cancerous prostate cells subdivides and forms two cells a small amount of protein (Prostate-Specific Antigen (PSA) is give off. So I never know what is causing increases in PSA and which cells are multiplying. I do know that androgens (testosterone) have to be present for prostate cells (both normal and cancerous) to multiply. In fact there is a spot on the prostate cell called an androgen receptor (AR). So having a low PSA means that very few cells are multiplying. Also, cancer cells are often not completely healthy and can fall apart especially if they go into the blood stream. The white blood cells can clean up these cell parts, so stay healthy. These cells can not multiply without testosterone and androgens present. If they connect with bone they may sink into the bone (over time) but they can not multiply without testosterone. So Lupron lowers your testosterone and therefore your PSA. Some of us think that testosterone is only produced in the testes, but it is also made in other areas, including the adrenal medullas (on top of the kidneys). Lupron stops testosterone in all of these areas. One problem is that Lupron "fools" the pituitary gland at the top of the spine in men to stop making Androgens, but this only works for a short time in some men and the pituitary is no longer fooled. These men become "Androgen Resistant" and other drugs must be used. Get a second opinion if this happens. Above everything else remember to just keep truckin'.

[Greatfaith in reply to JimVanHorn]

Thank you for the great information. Do you know, ballpark figure, how long before the Lupron stops fooling the pituitary glands? My PSA is down below .2 but I’ve only had two Lupron (3month) shots, 6 chemos & was told I need to stay in Lupron for one year before taking a ADT holiday. Thank you for any info you can provide & good health to you!!

[JimVanHorn in reply to JimVanHorn]

Androgen Resistance can occur to anyone using these agents. For me I stayed on Lupron for 6 1/2 years and never became resistant. Others may become resistant in several months. Many men who are on these drugs for many years claim that eventually all men will become resistant in time. Until they find out why this happens (it may be generic) we are told to stay on Lupron and use other drugs, but it is up to the patient and the doctor. Just keep on asking questions.

[monte1111]

Wives are almost always right. Hope you are wrong. Keep a sharp eye out. But don't stress. Enjoy. You deserve a dinner out. I said so.

[Vindog29 in reply to monte1111]

I'm a wive so stress came with the marriage license...I wont Male bash but my husband tends to see glass half full (used to be filled with wild Turkey no more)...his triglycerides are 1,350 normal is around 150 and is supposed to be as liver doctor at MSKCC on a Mediterranean diet but eats what he wants...so if he thinks everything is ok he tends to go back to not taking care of himself...a reality check is needed and that's where I come in...to burst his bubble...as far as the dinner out trying to get reservations for Rosh Hashanah will say a prayer for you and others in this forum good health

[j-o-h-n]

hivplusmag.com/undetectable...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 7:06 PM DST

[westof in reply to j-o-h-n]

Hmm... I've always loved your replies (and support). However, I think that your pushing your luck with this one!

Best

[j-o-h-n in reply to westof]

It was a takeoff of the song unbelievable as you probably know and referred to her post "undetectable" as a spoof....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 7:29 PM DST

[westof in reply to j-o-h-n]

Hmm... I guess I'm a bit slow on the uptake today.

AJ from CT

[j-o-h-n in reply to westof]

I do appreciate any and all criticism of my lame attempts to be funny. Thank you...

BTW the term "undetectable" reminds me when we played hide and seek as kids. Those dirty bastards are just hiding inside of us....waiting to get out....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 7:52 PM DST

[westof in reply to j-o-h-n]

Yep!!

[Balsam01 in reply to j-o-h-n]

I think you are funny!

[j-o-h-n in reply to Balsam01]

To Balsam01,

Well thank you very much....but I'm not out of the "woods" yet. Send me your address so I can mail you a check....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/27/2019 1:33 PM DST

[monte1111 in reply to j-o-h-n]

Don't forget to take your meds. Googled Jade Elektra Undetectable and got great version. Apparently she already has a husband, so that's out. I am now a huge fan. Nothing ventured, nothing lost ... err something like that. Enjoy.

[j-o-h-n in reply to monte1111]

Heyyyy I saw her first..............

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/27/2019 5:06 PM DST

[gleason9guy]

PC is Schrodingers Cat...until it is determined, it is both.

[ctarleton in reply to gleason9guy]

I've also imagined that during long treatments one's prostate cancer can be like having Schrodinger's Cat in the trunk of the car. It may or may not be there when you open the lid.

Sometimes it can inexplicably show up in the glove compartment, too!

Worrying about it all the time often just increases suffering, ... at least in my experience.

Charles

[Cheerr]

Hi I understand you frustration. But if that makes him happy and stress free then it’s a significant thing.

That said, he ofcourse must continue medications, diet, exercise etc that he adopted post diagnosis.

And you can help him to keep a check on monthly blood work / MO meetings / scans etc.

Wishing you both the best.!!

[pete-ginger]

spot on and well put. my best wishes to you both for your man’s return to a manageable chronic vs acute health status. thanks so much. very helpful post for me.

[Vindog29 in reply to pete-ginger]

Thank you and Dr Morris had the magic key

[ron_bucher]

Undetectable PSA with invisible cancer is as good as it gets. Celebrate every day!

[Vindog29 in reply to ron_bucher]

Thank you going on 2 years undetectable..

[boc13]

I'm with you. My husband has been at .02 for years. I kept telling the drs I felt the subtle changes going on were signs he was not "undetectable". They disagreed. He's now mets to the bone and rapidly progressing. And yes, he's still at .02. He did Lupron and firmagon for a while and also Zytiga. Always the same .02. His dr finally agreed that his numbers mean nothing in his case. He starts Radium 223 today. We'll see how that goes. That being said, my husband had about 7-8 years at .02 with no treatment before it went to his bone. So enjoy the times he feeling well.