Quality of Life vs Quantity of Life

Josh123

Though my question is more general, as in the subject line, I see that you guys appreciate a personal sharing, so here goes.

After years of a rising PSA, when it reached around 9 in Dec. 2019, a urologist insisted that I get a biopsy (though no doctor had ever told me before that to get one, which is a different story). After my initial shock and denial, he referred me to another urologist, and then the pandemic and lockdown hit, so it must not until August 2020 that I got a biopsy done. It came back 2 cores <50% and 1 core <20% on one lobe, and 1 core <10% on the other lobe (out of a total of 13 cores), all 3+3. But the urologist wanted to make sure so he sent me for an MRI, which showed another ares with PIRADS 5 as well as pointing to some suspicious areas in the pelvis. So we did a whole body PSMA PET-CT to check the pelvis, which came back negative, but which confirmed that other area in the prostate as well as pointing to suspicious areas in the ribs and other bones. we then did an MRI Fusion biopsy this February that came back with 3 of 5 cores in one area as 70% 3 + less than 5% 4 with apparent perineural invasion, and 1 of 4 cores in another area with less than 5% 3+3. Then we did another MRI of the chest to check the ribs etc. and that seemed to confirm the suspicious points in the ribs. But the urologist found that inconsistent with the actual pathology in the prostate, so he sent me to an oncologist from another hospital who had his MRI and PET-CT experts read the scans and they said that it's not from the prostate. 

The urologist suggests surgery (which he does), and the oncologist suggests 6 months ADT + RT. I asked the urologist to recommend an "objective" expert, who now recommends a bone scan to check the ribs, with a biopsy (if possible) if the scan comes back positive. He says it should not be left for surveillance, since there's already some 4 and that he's seen people with it in the ribs even without any local spread, as well as seeing 3+3 in the bones, so he saying that even if the bone scan comes back negative that ADT + RT is preferable just in case there is some undetected spread, though RP is still an option in that case. He says I'm young and healthy (70), so treatment and its side effects are worth it. So that's where I am now, waiting for an appointment for the bone scan.

But returning to my subject line, the question of quality vs quantity of life is a major issue for me, both "philosophically" and emotionally. I am divorced, live alone, the family has cut me out of their lives for reasons I won't go into, I cannot afford assisted living, and I would prefer the alternative than to live in that situation. I am not even sure I could endure the long term loss of my masculinity, or even the shorter term side effects during and after six months' ADT. I have read many posts here from you guys, many of whom are happy with the results of your treatment and post-treatment QoL, but it still concerns and worries me very much. It's the loss of quality of life that concerns me. But on the practical level, are my concerns overblown? 

And all this is before I even consider which treatment path to choose.

I hope I've made myself clear.

Thanks to all of you for being here.

 

hopeful and optimistic

VascodaGama said:

... ... are my concerns overblown? Not at all

Hi Josh, 

I wonder if you make part of the CSN team.

Regarding your concerns, I would say that you are on the right track by gathering as much information as you can on your PCa status,  before committing to a decision. In any case, in regards to the subject of your thread, you need to be certain of your interpretation of the meaning of "quality of life" and "quantity of life" because these gain different meanings at the moment we are diagnosed with prostate cancer.

The quality of life will depend on what we accept as valid to continue our way of living. The quantity of life is unpredictable as it depends on the success of the treatment, which depends on the accuracy of the diagnosis, choosen therapy,  other health issues and particularly in the quality of the team of physicians treating us and the facilities where the intervention is performed. 

We all go through the same feelings. Nobody likes to move against one's comfort but we need to learn how to accept our newer me. Surely every body has limits and dislikes so the best is to find a balanced term in which one can live with certain dignity and enjoyment.

All therapies have attached consequences and side-effects. Which ones are you willing to accept?

Regarding your diagnosis, I think it better to biopsy those bone lesions to be sure that you have no far metastases (T4 case).

Can you share more information regarding your prostate histology. Do you have symptoms? What about a DRE?

Best wishes and luck in your journey 

VGama

 

 

Quality

I was diagnosed in 2009, and have been in an active surveillance protocol since then; simply monitored. I managed to avoid active treatments that can have life altering side effects. 
At the time only 10 percent of men with my numbers elected to monitor. The rest choose active treatment. I had doctors and others trying to push me to have active treatment. I have found that there are docs who are self serving and you need to be your own advocate. You are the CEO of your medical team. 
My thoughts are to incur the least invasive treatment, only if necessar, to achieve cure, so I have researched with this in mind since my diagnosis in case I need to seek treatment.
It is my opinion that surgery patients can incur the greatest side effects from treatment to include but not limited to incontinance and erectile dysfunction. Immediately after surgery this happens to many of the patients. Long term some experience for a life time.

Radiation has comparable cure to surgery but with significantly less side effects from treatment.  I believe that the top two of these is SBRT, a high dose rad that can be given in five or less sessions. A man can have a session in the morning and go about his normal activities during the day. The other one is bracky. If bracky , temporary seeds are a better choice over permanent  

In this above discussion I am mainly referring to localized treatment. As far as hormone treatment it is very important to find the very best medical oncologist, preferably one who specializes in prostate cancer patients only that you can find and afford to treat least invasively. 

 

 

 

 

VascodaGama

... ... are my concerns overblown? Not at all

Hi Josh, 

I wonder if you make part of the CSN team.

Regarding your concerns, I would say that you are on the right track by gathering as much information as you can on your PCa status,  before committing to a decision. In any case, in regards to the subject of your thread, you need to be certain of your interpretation of the meaning of "quality of life" and "quantity of life" because these gain different meanings at the moment we are diagnosed with prostate cancer.

The quality of life will depend on what we accept as valid to continue our way of living. The quantity of life is unpredictable as it depends on the success of the treatment, which depends on the accuracy of the diagnosis, choosen therapy,  other health issues and particularly in the quality of the team of physicians treating us and the facilities where the intervention is performed. 

We all go through the same feelings. Nobody likes to move against one's comfort but we need to learn how to accept our newer me. Surely every body has limits and dislikes so the best is to find a balanced term in which one can live with certain dignity and enjoyment.

All therapies have attached consequences and side-effects. Which ones are you willing to accept?

Regarding your diagnosis, I think it better to biopsy those bone lesions to be sure that you have no far metastases (T4 case).

Can you share more information regarding your prostate histology. Do you have symptoms? What about a DRE?

Best wishes and luck in your journey 

VGama

 

 

Josh123

VascodaGama said:

... ... are my concerns overblown? Not at all

Hi Josh, 

I wonder if you make part of the CSN team.

Regarding your concerns, I would say that you are on the right track by gathering as much information as you can on your PCa status,  before committing to a decision. In any case, in regards to the subject of your thread, you need to be certain of your interpretation of the meaning of "quality of life" and "quantity of life" because these gain different meanings at the moment we are diagnosed with prostate cancer.

The quality of life will depend on what we accept as valid to continue our way of living. The quantity of life is unpredictable as it depends on the success of the treatment, which depends on the accuracy of the diagnosis, choosen therapy,  other health issues and particularly in the quality of the team of physicians treating us and the facilities where the intervention is performed. 

We all go through the same feelings. Nobody likes to move against one's comfort but we need to learn how to accept our newer me. Surely every body has limits and dislikes so the best is to find a balanced term in which one can live with certain dignity and enjoyment.

All therapies have attached consequences and side-effects. Which ones are you willing to accept?

Regarding your diagnosis, I think it better to biopsy those bone lesions to be sure that you have no far metastases (T4 case).

Can you share more information regarding your prostate histology. Do you have symptoms? What about a DRE?

Best wishes and luck in your journey 

VGama

 

 

Thanks for your response.

Thanks for your response.

I have already received notification from the site to offer them alternate user names to avoid exactly the mistake that you made. They will make the change and the the new name will appear next to the posts. Sorry about that.

As to your questions, I have absolutely no symptoms at all. The urologists that first checked me last year claimed they found nothing on the DRE, but the two oncologists who have checked me recently claimed they did. The first one really pressed so hard it was a strange mixture of pleasure and pain. It does not seem there was any major difference between over the last year in the prostate, so the different results is obviously to be attributed to the different examiners.

My sense of physical wellbeing seems to fluctuate entirely on how well I slept the previous night. When I am well-slept and alert and productive, the whole thing slips out of mind and seems like some big mistake. On "bad" days I can feel very physically distressed, aching all over, headaches, etc., which all disappear after a good rest/sleep. 

As for my sense of psychological/emotional wellbeing, that also largely fluctuates on the above, and images/thoughts of worst case scenarios only arise at those times. I have a very vivid and active imagination and have "seen" myself lying unconscious on the operating table beneath the urologist surgeon until he happened to tell me that he uses the robotic system. I haven't had any such images/thoughts since then... :-). 

I have found that all of the doctors I have been to speak very matter of factly, if at all, about the side effects. As you say in different words, the development of each individual's illness - treated or untreated - is unique, but after all my searching online and doing the online Sloan Kettering assessments for pre- and post surgery survival rates based on PSA, GS, etc., I still don't feel clear enough to make any decision (putting aside the bone scan, which even the oncologist who referred me to do one said he does not believe it will come back positive). To put it differently, the pre-surgery (meaning no treatment at all), cancer specific survival rates for my condition are between 82-95% (depending upon the exact grading of my condition, which is borderline) at 15 years, and 92-98% at 10 years, while surgery would bring it to 98-99%. So that is what makes we question if the side effects of surgery or ADT/RT are worth it. What quality of life can one anyway realistically expect at age 85? And why give up quality of life at age 70 after treatment rather than at age 80 or 85 without treatment? There are so many unknowables, including what long term side effects I would have and how deeply they would bother me, how fast or slow the illness might progress without treatment, and how successful any treatment would even be. How does one reach any rational decision??

What other information are you asking about by "histology"? I gave the biopsy results. Do you mean the volume? I'm not sure I have that information. There seem to be two main relatively larger areas in one lobe where the 50% and 70% lesions were found, another area of 10% in the other lobe, and a fourth area of less than 5% I'm not sure in which lobe.

Thanks again and the very best to you as well

Josh123

hopeful and optimistic said:

Quality

I was diagnosed in 2009, and have been in an active surveillance protocol since then; simply monitored. I managed to avoid active treatments that can have life altering side effects. 
At the time only 10 percent of men with my numbers elected to monitor. The rest choose active treatment. I had doctors and others trying to push me to have active treatment. I have found that there are docs who are self serving and you need to be your own advocate. You are the CEO of your medical team. 
My thoughts are to incur the least invasive treatment, only if necessar, to achieve cure, so I have researched with this in mind since my diagnosis in case I need to seek treatment.
It is my opinion that surgery patients can incur the greatest side effects from treatment to include but not limited to incontinance and erectile dysfunction. Immediately after surgery this happens to many of the patients. Long term some experience for a life time.

Radiation has comparable cure to surgery but with significantly less side effects from treatment.  I believe that the top two of these is SBRT, a high dose rad that can be given in five or less sessions. A man can have a session in the morning and go about his normal activities during the day. The other one is bracky. If bracky , temporary seeds are a better choice over permanent  

In this above discussion I am mainly referring to localized treatment. As far as hormone treatment it is very important to find the very best medical oncologist, preferably one who specializes in prostate cancer patients only that you can find and afford to treat least invasively. 

 

 

 

 

Thanks for your response, but

Thanks for your response, but I have no way of comparing myself to you because I don't know what your stats were in 2009 or what they are now.

The main issue is indeed catching it before it spreads, which is unknowable until it does. 

I had mentioned brachy to my urologist but he said it's not effective against Gleason 4, and he claims that therefore it's hardly done today, since GS 3+3 is anyway not treated. But he has not been pressuring me at all for surgery though he does recommend it over RT. It's totally my decision what to do, he said. He says that the ED after surgery recovers after time whereas after RT is progressively gets worse - not to talk of the ED effects of ADT. And there are other side effects unique to radiation. He also spoke of RT 5x/week for three weeks - which itself is daunting for me - so maybe SBRT is unavailable to me.

The urologist referred me to the top oncologists in a "rival" hospital, and both seemed to me to be experts in the prostate. 

 

Clevelandguy

Which way to go?

Hi,

As you have stated the decision at times is very hard to make.  Sounds like from your posts that AS is not for you so it boils down to either surgery or some form of radiation.  Both treatment forms offer good remmision rates if done by great doctors at great facilities. Your scans seems in conclusive as to spread outside of your Prostate.  Need to be sure about that before you proceed with treatment in my opinion.  Surgery is not all that effective if the cancer has left the barn, so to speak. With either radiaion or surgery there will be side effects, some short lived, some longer lived.  As to quality of life  there are lots of survivors on this form treated with both surgery and radiation with good to great quality of life.  Also there are some that have had disappointing results with the two choices.  It's up to you to decide, there are no guarantees in life, cripe I could be walking to my car in a parking lot and get hit by a truck.  With my cancer I looked at the test results, consulted with my doctors and made a choice AND lived with the results.  Hopefully you will come to the same decision and the peace of mind that you did your best with the info you had.  I am thankful that my surgery turned out as well as it did as I look around this country and see people a lot worse off than I am with different ailments and medical issues.  Life is too short, make the most of it with what is delt you.

Dave 3+4

VascodaGama

Talking about rational decisions

Josh
I absolutely agree with the way you set the facts when judging the pros and cons of a treatment if the intent focus only in solving  the problem with an invasive intervention. I wonder if you have discussed with the doctors about any possibility in doing nothing.
In any case,  you should be informed that independently of the age or type of treatment, there will be always a prejudice in the quality of life that will never be recovered to its previous status, even if one lives more 50 years.

From your above shared information,  I think that the only missing piece is the biopsy from the bone lesion identified in both exams (PSMA-PET and MRI).
Gathering evidence on this finding is important  because metastases in bone classifies the patient with an advanced case which shortens drastically the options in treatments.
PCa is by tradition slow growing but it never stops or sleeps along the way. The bandit usually travels via the blood stream going from the gland to the bone, then to the upper chest lymph nodes, then to the lungs and liver. This journey take years to be accomplished by non aggressive types but the period would become shorten if the cancer has already metastasized to far places, by the time of diagnosis.

According to the NCCN guidelines (followed by most doctors treating cancer) patients younger than 75 years old shall be recommended to some kind of radical therapy. However, these guidelines also recommend Active Surveillance for low risk cases which become an alternative to those that prefer to do nothing. AS is a regimen of periodical tests and exams done along the years for checking any worsening of the situation. I prefer to name it "under observation" if the patient is closer to 75 by the time he has been diagnosed.
In your case, if the bone lesion turns to be negative you may opt to chose "Observation" instead of a radical (RP or RT) if your doctor approves it.
Dave is giving you a straight advice but I still  recommend you to inquire about these details in your next meeting  with the doctor.

Best,
VGama 

lighterwood67

Rocket Science

Treating prostate cancer is "Rocket Science".  The beast is not just going away.   From my readings on this site, you have 3 choices:  Active Surveilance;  Nuke (radiation);  Gut (Surgery).  Nuke and gut can be curative.  I am a product of getting gutted.  I consider myself extremely fortunate.  My cancer is in remission; I am continent;  I can be intimate with my wife.  In my opinion, surgery is the more trying than radiation.  Surgeons have been removing parts from our bodies for a many a year trying to fight the beasts.  Of course, this is your decision.  If my numbers were yours, I would seriously consider AS for now.  Good luck to you and yours on your journey.  

Josh123

lighterwood67 said:

Rocket Science

Treating prostate cancer is "Rocket Science".  The beast is not just going away.   From my readings on this site, you have 3 choices:  Active Surveilance;  Nuke (radiation);  Gut (Surgery).  Nuke and gut can be curative.  I am a product of getting gutted.  I consider myself extremely fortunate.  My cancer is in remission; I am continent;  I can be intimate with my wife.  In my opinion, surgery is the more trying than radiation.  Surgeons have been removing parts from our bodies for a many a year trying to fight the beasts.  Of course, this is your decision.  If my numbers were yours, I would seriously consider AS for now.  Good luck to you and yours on your journey.  

Rocket Science Indeed

In fact, it's harder than rocket science. We've sent men to the moon and back, and send rockets beyond the solar the system, but we are still not able to accurately predict the progression of prostate cancer, much less cure it in a harmless way.

None of the three doctors I've been to so far have said that AS is an option at this point, mainly since there's already a bit Gleason 4 and possibly perineural invasion. None of them believe there's anything in the bones despite both the MRI and the PSMA PET-CT saying there is, but I will have a bone scan done to double check that. I am considering a genomic test, but not all of them believe in it. I hope to have some more clarity over the next few weeks.

Max Former Hodgkins Stage 3

Josh123 said:

Rocket Science Indeed

In fact, it's harder than rocket science. We've sent men to the moon and back, and send rockets beyond the solar the system, but we are still not able to accurately predict the progression of prostate cancer, much less cure it in a harmless way.

None of the three doctors I've been to so far have said that AS is an option at this point, mainly since there's already a bit Gleason 4 and possibly perineural invasion. None of them believe there's anything in the bones despite both the MRI and the PSMA PET-CT saying there is, but I will have a bone scan done to double check that. I am considering a genomic test, but not all of them believe in it. I hope to have some more clarity over the next few weeks.

Brief thoughts

Josh,

Virtually all men face the dilemma of how to address newly-discovered PCa, although your emotional factors have rendered your path a bit harder to decide upon.  The guys here range far and wide on the "Quality v. Quantity" question.   My view is on one of the far ends of the discussion.   I believe there is no quality of life at all, if you are dead.  Understanding that, I approach medical issues with a scorced earth viewpoint:   I will do everything reasonable within medical science to survive.  I also believe that side-effect issues are subordinate to the issue of life itself.  Some agree, some do not.

Your case is new, and not yet well understood, especially as regards staging.   I fully understand that there are many cases in medicine in which all hope of cure are passed, and medical ethics pretty consistrently teaches that a bona fide terminal situation can warrent hospice orders.   But you are no where near any such situation -- very far from it.  Very likely after more specifics are learned and you discuss options further with your medical team, you will decide upon a course of action that holds hope and the achievement of care that leads to wellness.

rosatt8

Radiation and hormone therapy

I also am living alone and divorced.

I went for radiation and hormone therapy.

I may end up with ED but life is worth living.