Remission : I had a question as to when... - Advanced Prostate...

Advanced Prostate Cancer

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Remission

SherryKahn profile image
40 Replies

I had a question as to when can someone say they are in remission? While on ADT or after? Is it based on the psa response? Trying to get the language right.

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SherryKahn
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40 Replies
Tall_Allen profile image
Tall_Allen

It's not a medically defined term. Say it when you want to.

SherryKahn profile image
SherryKahn in reply toTall_Allen

Thank you

carbide profile image
carbide in reply toTall_Allen

TA, you do have a sense of humor. Love it. 👍

Tall_Allen profile image
Tall_Allen in reply tocarbide

? I don't understand your comment.

carbide profile image
carbide in reply toTall_Allen

Was meant to be a positive reply. 👍I respect you.

VictoryPC profile image
VictoryPC

Management only. Remission is not a word for this monkey.

London441 profile image
London441 in reply toVictoryPC

This is wrong, but stated with succinct certainty, so there’s that.

duckcalldan profile image
duckcalldan

Excellent question. For me, my PSA after roughly 2 months of ADT is below 0.4. I will start my IMRT therapy in early January. After I reach my nadir and after RT, if my PSA is not budging, I will probably say that my cancer is under control for the present. I hesitate to say remission.

I reserve the right to change my mind.

maley2711 profile image
maley2711 in reply toduckcalldan

It depends on how you define remission. Eradicating evry single PCa cell in a man's body.......probably not!!!

London441 profile image
London441

I define remission as having an undetectable PSA ,no evidence of disease and not on ADT. This is the state I have been fortunate enough to be in for some years now.

Many would call that ‘cured’, especially after some arbitrary number of years, but since recurrence is very common, others will say cure isn’t possible.

I have no strong opinion about it, only much gratitude for each day it continues. My standard line is, ‘I’m cured until I’m not.’

RoseDoc profile image
RoseDoc in reply toLondon441

I would agree with this

InqPers profile image
InqPers in reply toLondon441

Yes, I agree. Remission would be completely off treatment, undetectable PSA and nothing on scans.

dhccpa profile image
dhccpa in reply toLondon441

Good way of putting it.

RMontana profile image
RMontana

Here is something to chew on. Rick

Perplexity PRO Ai;

Remission in prostate cancer is indeed an important milestone in a patient's recovery journey. There are specific criteria for determining remission, and the concept of "cure" is approached cautiously in prostate cancer treatment.

## Criteria for Remission in Prostate Cancer

Remission in prostate cancer is primarily determined by monitoring Prostate-Specific Antigen (PSA) levels:

1. **Complete Remission**: This occurs when there is no detectable evidence of cancer. For prostate cancer, this typically means:

- PSA levels are undetectable or less than 0.1 ng/mL after surgery[1].

- PSA levels are less than 0.5 ng/mL after radiation therapy[1].

2. **Partial Remission**: This is defined as a reduction of at least 50% in measurable tumor size or cancer cells[10].

It's important to note that remission doesn't necessarily mean the cancer is completely gone. There may still be undetectable cancer cells present[5].

## Considerations for "Cure"

The concept of "cure" in prostate cancer is approached cautiously:

- Some doctors may consider a patient cured if they remain in complete remission for more than five years[5].

- However, there's always a possibility of recurrence, even after many years[3].

The American Cancer Society provides encouraging statistics:

- 5-year relative survival rate is nearly 100%

- 10-year relative survival rate is 98%

- 15-year relative survival rate is 95%[3]

## Differences Between Treatments

The criteria for remission can vary depending on the treatment received:

1. **Surgery (Radical Prostatectomy)**:

- PSA should drop to zero and remain undetectable[1][3].

- Recurrence is considered when PSA rises above 0.2 ng/mL[3].

2. **Radiation Therapy**:

- PSA should drop to a very low level, typically less than 0.5 ng/mL[1][3].

- Some PSA may be detectable due to remaining prostate tissue[1].

3. **Hormone Therapy**:

- Remission is achieved when PSA becomes undetectable during treatment[1].

- Durable remission means PSA remains low even after testosterone recovers following the cessation of hormone therapy[1].

4. **Other Treatments**:

- For treatments like focal therapy, where part of the prostate remains intact, PSA monitoring may be more complex and require individualized interpretation[1].

## Long-term Monitoring

Regardless of the treatment type, long-term monitoring is crucial:

- PSA levels are typically checked every 3 months for the first 2 years post-treatment.

- Then every 6 months for the next 3 years.

- After 5 years of stable results, annual PSA checks are often recommended[1][3].

It's important to remember that while prostate cancer has high survival rates, each case is unique. Patients should work closely with their healthcare providers to interpret their individual results and determine their status of remission or cure.

Sources

[1] ProstateCancer: Cure vs Remission After Treatment - YouTube youtube.com/watch?v=5Sfub1Q...

[2] The Spontaneous Remission of Recurrent Lymph Node Metastatic ... pmc.ncbi.nlm.nih.gov/articl...

[3] Prostate Cancer Prognosis | Johns Hopkins Medicine hopkinsmedicine.org/health/...

[4] Consensus statements on radiation therapy of prostate cancer pubmed.ncbi.nlm.nih.gov/105...

[5] Cancer Remission, NED, Cancer-Free: What the Terms Mean cancercenter.com/community/...

[6] Prostate Cancer Treatment (PDQ®) - NCI cancer.gov/types/prostate/h...

[7] Is Prostate Cancer Curable? | Moffitt moffitt.org/cancers/prostat...

[8] Surgery better than radiation, hormone treatments for some prostate ... ucsf.edu/news/2010/08/98419...

[9] What Is Remission in Cancer? - Cleveland Clinic my.clevelandclinic.org/heal...

[10] Cancer Remission: Definition, Treatment, and Outlook - Healthline healthline.com/health/cance...

dhccpa profile image
dhccpa in reply toRMontana

Did it cover when Mets grow even though PSA is low? If so, I flew by it.

RMontana profile image
RMontana in reply todhccpa

wow that’s an unusual case. It covers both of those issues but separately. It says remission is when PSA is low or when there’s no growth in tumor mass. But in your case, you have growth with low PSA. Sadly, if it were me, I would be more concerned of the Mets growing rather than PSA not rising. Good luck.

dhccpa profile image
dhccpa in reply toRMontana

No, that's not my situation. Sorry if I wasn't clear about that. I've just read about those situations here and there. I know they're rare but apparently can seemingly arise out of nowhere, catching the patient by surprise.

chefjlu profile image
chefjlu in reply todhccpa

Yes it is not highly common. If you have been diagnosed with Gleason 8, 9, 10 - highly aggressive cancer. It is possible to have the cancer spread or grow and not express PSA.

JWPMP profile image
JWPMP in reply tochefjlu

Interesting. It may be wrong, but I was told that the Gleason score only mattered if the cancer was confined to the prostate. Once metastatic, the Gleason score is irrelevant.

RMontana profile image
RMontana in reply toRMontana

...while I'm at it, is it not interesting that there is no criteria for Remission, no agreed to milestone for Cure, that the 'medical community' has oddly not been interested in establishing these terms. I dont find that unusual at all; its by design. I have beat the drum for a while that our Doctors dont want to get involved with quality of life issues, they stay away from mentioning sexual health and avoid any discussion of matters not directly in line with and involving "treatments!." When I was diagnosed and went looking for a Doctor, like many others in this group, laughingly asked my surgeon what his 'performance' was, vis a vis ED, Urinary Continence, et al; he confidently shot back this % and that %...how in the heck did he know? Its been 5 years and the number of surveys and questions asked by my medical team, regarding my recovery, hover near zero...actually it is ZERO. No one has ever asked how I have done, not my Surgeon, not my Radiologist, not the medical center that employed them, no one. If they dont ask they dont care, or at best they would rather not know. There may be exceptions, but that's the point; they are exceptions!

So, we patients are stuck during recovery looking for something to cling to when we ask; "am I cured? Am I in remission?" But there is really no "consensus" on these terms precisely because there is absolutely no interest in raising these expectations in future PCa patients! The only milestone, the singular barometer of success for our caregivers is mortality! At least THAT we can measure!

A welder has to carry a "Log" to show how many of each type of weld they have made successfully; they get paid and assigned work based on that documentation but my Surgeon, my Radiologist and my Urologist have no such 'record' of how well they have done...I have scrapped the internet looking for ratings on all my Doctors...there is scant on each, nothing that I would be able to look at and in retrospect agree, or disagree with...Q.E.D.!

Sorry...will get off my soap box (wonder where that term comes from)...Rick

Mgtd profile image
Mgtd in reply toRMontana

Interesting fact on welders.

Gaden profile image
Gaden in reply toRMontana

I, too, find the utter lack of apparent interest in quality of life issue aggravating. My oncologist would gladly have kept me on ADT for the standard 18-24 months that big pharma prescribes for all PC cases, regardless of PSA and scan results. After 4 months, my PSA dropped from about 2.2 (with positive identification of 4 mets in PET scan) to 0.04. I immediately stopped ADT and it has remained there and testosterone remains undetectable as well. I'm not miserable like I was during ADT treatment, which left me exhausted from morning till night, but I would like to recover lost strength and muscle from six months of inactivity. I had intended to keep working out during treatment but had no idea how little energy I'd have. Oncologist didn't object to my cessation of ADT but it was clear he would prefer I continued it. Even from a long term treatment strategy, keeping patients on ADT after psa drops to undetectable would seem to encourage the cancer cells to develop end runs around the testosterone deprivation. It seems to me that, in addition to recovering quality of life, regaining testosterone would delay the onset of (presumably inevitable) ADT resistance.

dk73 profile image
dk73

Started this journey in late 2016 with biopsies. Had surgery/radiation in 2017. PSA started at 5.5: got to 5.0 after 35 rounds. Switched from urology to oncology - had a scan and showed bone mets in the spine, stage IV. (urologist didn't do scans because he said surgery would take care of things). So since then, the longest break with a steady undetectable psa was after 6 rounds of chemo from 2017-2018. He only did Eligard shots and zometa infusions until October 2020. He was never declared in remission during that time, just undetectable. Then PSA started doubling each month and after 3 months he started zytega. PSA held for another year, then doubling. Switched to Xtandi: didn't hold the psa. Went back to chemo. While treatments have given him extra years (he started at age 64, will be 72 next month), remission has never been a word that has been used.

mababa profile image
mababa

Well, Websters says it’s “an abatement in intensity or degree” when used to describe a medical condition such as cancer. Since concluding my RT, 3 mos ago and adding abiraterone/pred to my Orgovyx regimen, my PSA is now undetectable. The regimen will continue for 21 more months. If we can say that PSA levels can be considered a good indicator for PCa activity, then I’m happy to say I’m in remission until I’m not. And it can keep a conversation short when someone asks how you’re faring. 👍👍

JWPMP profile image
JWPMP in reply tomababa

Appreciate this!My husband has been "undetectable " for four years, and has been on continuous ADT & HT. When people ask about how things are going, it seems to be more understandable to say he's in remission.

Gaden profile image
Gaden in reply toJWPMP

May I ask why he remains on ADT while in undetectable status? Is it due to the aggressiveness of the cancer? I stopped adt after 4 months when psa dropped to undetectable and hope for testosterone recovery as soon as possible. If psa or later scans indicate spread, more ADT may be needed but in the meantime, I am much happier without the active adt treatment. Good luck with the challenge!

JWPMP profile image
JWPMP in reply toGaden

He has metastasis to lymph nodes outside pelvic region and possible bone lesion. So he is not curable. He also only had limited RT due to several prior health issues. And can only have limited targeted RT going forward, if at all.He will be on ADT HT for life. He's been offered vacations, but also was advised against it, unless SE were intolerable. He doesn't want to rock the boat since his treatment is working so well so far.

Thank you for the good thoughts!

Mgtd profile image
Mgtd

Interesting discussion. Seems to one of semantics! I have a friend who after 25 years is no longer in remission/cured. That was a pretty good run.

My approach to that question is “We will see what the next PSA says!”. All I can hope for is a clean current PSA test and I get to relax for a month, three months, six months etc whenever the next PSA test is scheduled.

I guess we all live and die on the next PSA test.

kreg001 profile image
kreg001

My journey started out w confined PC Gleason 7 (3,4). Did ADT and RT. 95% chance of remission. A few years later, still confined, biochemical recurrence and salvage brachytherapy with another 95% chance of remission. Again biochemical recurrence. So I’m in the Gleason 7 0.25% not in remission group. That’s why I joined this advanced PC group. Presently on 4th biochemical recurrence. No quarrel with how. The SOC was strictly followed. Objective is to die with PC not from PC. Keep the wolves at bay while enjoying best achievable QOL (hearth and family).

London441 profile image
London441

The many interpretations, opinions, AI etc are interesting. I do think the distinction between undetectable PSA/NED on ADT vs off is the most significant factor, certainly it is for me.

Even with that said, I have found that some of the happiest, healthiest, productive, thriving men I know are not in remission by any definition, or they are in and out of it as they tactically fight the disease with varying degrees of success. Enhanced gratitude for each day, valuing what health one has, family, friendship, faith etc and what remains in general is what a having a deadly disease can do to a person.

We are old, and ADT is an age accelerator. The more fit and strong one is the less onerous ADT is, but there’s a limit for sure. I did well enough on it, yet being off it is a big QOL boost no doubt. I feel fantastic! I am also aging still, albeit more slowly. Other health problems and late side effects of treatment continue to join the party. Onward!

ADT eventually stops working, but so do we. The chances of dying of something else first get better the longer we last, with or without remission. Carpe Diem!

JWPMP profile image
JWPMP in reply toLondon441

Well said !!!!

j-o-h-n profile image
j-o-h-n

When you're dead (but someone has to say it for you)..

Good Luck, Good Health and Good Humor.

j-o-h-n

TuffNuttoCrack profile image
TuffNuttoCrack in reply toj-o-h-n

See my next reply. You are right, but chances are you won't be able to comprehend what's being said to you. My dad used to say he was more dead than alive (tired) but he lived a long time despite getting prostate cancer.

addicted2cycling profile image
addicted2cycling in reply toj-o-h-n

ONLY 4 days after you die are you in total remission/cured - 'cause - there is a slight chance you might return on day 3 🤫and still have it 🤣

j-o-h-n profile image
j-o-h-n in reply toaddicted2cycling

Even if you're cremated on the second day?

Good Luck, Good Health and Good Humor.

j-o-h-n

Mgtd profile image
Mgtd in reply toj-o-h-n

Or buried by sun down the next day. Always been curious of this Jewish tradition.

j-o-h-n profile image
j-o-h-n in reply toMgtd

Exception, if it's your ex-wife you don't wait till sundown....of the same day.

Good Luck, Good Health and Good Humor.

j-o-h-n

TuffNuttoCrack profile image
TuffNuttoCrack

There is no such thing. You are either cured or you are not. Then it gets into how long have you lived without any cancer cells detected, and folks in this blog arguing over the dates as to when a cure occurs. My hospital didn't waste anytime setting up palliative care the moment I began treatment no matter how much I "protested" or how well I am doing, defying their expectations. It was a waste of time, the reason being my support group of Christians and my belief structure are that I can be cured, and without having a support group..... Palliative care is likely a good thing. I was helping the doctors out more than they were helping me. My non oncologist doctors are the ones who are cheering me on to keep exceeding what a normal person with APC can do and for sure .....turning the oncologist thoughts on what should happen on their head. So my suggestion is to get with Prostate Cancer Research institute or some other oncologist/urologist who will give their best to initiate treatment doing everything they can to save your loved one.

I suppose you could think about it like you are stabilized with your current treatment and PSA is < detect and cancers shrinking as being in remission, but it's a fool's fallacy.

J-o-h-n , upright is better than horizontal.

Gaden profile image
Gaden in reply toTuffNuttoCrack

FYI: I am pursuing a dual track approach using traditional ADT (as briefly as possible) along with complementary treatment using repurposed drugs that have shown tremendous promise in cancer cases. FLCCC Leading Edge has cancer protocols that involve meds like ivermectin, mebendazole, metformin and others that I am hoping will KEEP me in undetectable status permanently or at least much longer than would be otherwise. With APC, it may be worth looking into for you. Just a thought. Good luck in your struggle.

addicted2cycling profile image
addicted2cycling

Warning - confusing post to follow ---

I am in remission of my right half GL10 since treatment in May 2015; HOWEVER, I have had two recurrences in the remaining treated left half, the first time in 2018 (GL6 and GL7 return and treated at that time) AND currently in a Watchful Waiting State since 3 of 47 cores returned with 3+3 earlier this year.

Lifetime ADT with having had surgical Castration in 2015 before GL10 treatment and currently T ≤ 2.5ng/dL and PSA = .02 ng/mL down from 12ng/mL at time of biopsy with T = 450ng/dL because I was cycling T injections for my self directed BAT.

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