AFF Cancer Survivors Thread

[TheRealTMA]

Isn’t it that prostate cancer can exist and not really create many significant issues and some men have it and don’t ever receive the diagnosis but pass away from something else?

Yes. It’s a very difficult ‘cancer’ to define. The word can be one of the more difficult things about the disease. In younger men the issue is often more aggressive, Most post 60-65 yo men will have some form of lesion in the prostate. How significant that is and what to do about it is the subject to much debate these days. In the old days there was lots of over treatment, now with a good urologist it’s far more debatable and nuanced with a wide variety of options increasing all the time. With low grade biopsy results it’s impossible to predict the long term outcomes. Many of these low grade ones will never develop to cause significant issues before the person dies of something else in 20 years after diagnosis. There are also now genomic tests to provide further guides to how aggressive the tumour is and likelihood of future development and spread.

One needs good advice. I know someone who had PSA in the mid 50’s but no actual prostate cancer on biopsy while others with low PSA had significant tumours, so PSA is just a ‘poor’ marker and something to be considered.

As I understand, JohnM’s approach was a very considered one with long term monitoring and defined trigger points and the important (and pleasing) thing is that the results have apparently been good and he’s very content with the decisions made in collaboration with advice.

There’s lots of good resources available online from Australian and US urology clinics.

 

[Pushka]

Yes. It’s a very difficult ‘cancer’ to define. The word can be one of the more difficult things about the disease. In younger men the issue is often more aggressive, Most post 60-65 yo men will have some form of lesion in the prostate. How significant that is and what to do about it is the subject to much debate these days. In the old days there was lots of over treatment, now with a good urologist it’s far more debatable and nuanced with a wide variety of options increasing all the time. With low grade biopsy results it’s impossible to predict the long term outcomes. Many of these low grade ones will never develop to cause significant issues before the person dies of something else in 20 years after diagnosis. There are also now genomic tests to provide further guides to how aggressive the tumour is and likelihood of future development and spread.

One needs good advice. I know someone who had PSA in the mid 50’s but no actual prostate cancer on biopsy while others with low PSA had significant tumours, so PSA is just a ‘poor’ marker and something to be considered.

As I understand, JohnM’s approach was a very considered one with long term monitoring and defined trigger points and the important (and pleasing) thing is that the results have apparently been good and he’s very content with the decisions made in collaboration with advice.

There’s lots of good resources available online from Australian and US urology clinics.

An informative post. Of the men I know who’ve experienced it, most have been in their 60’s and it was a case of monitoring for quite some time, years, until the decision was made for surgery. I agree with your concept of the word Cancer, when all of us would pretty much think, Get it out or bomb it with chemo/radiotherapy. So maybe there needs to be another word for this almost ‘pre cancer’ condition. Because it is stressful living with that monitoring also. Sadly the only younger person I know who had prostate cancer was in his early thirties and he passed away. As you say it’s almost a different entity in younger folk.

 

[TheRealTMA]

An informative post. Of the men I know who’ve experienced it, most have been in their 60’s and it was a case of monitoring for quite some time, years, until the decision was made for surgery. I agree with your concept of the word Cancer, when all of us would pretty much think, Get it out or bomb it with chemo/radiotherapy. So maybe there needs to be another word for this almost ‘pre cancer’ condition. Because it is stressful living with that monitoring also. Sadly the only younger person I know who had prostate cancer was in his early thirties and he passed away. As you say it’s almost a different entity in younger folk.

Oh yes. There actually is now. Low level 3+3 or less while worrying when diagnosed by the patient is not really regarded by good Urologists as 'cancer' these days (as I have been told) but more a 'tumour' that needs to be monitored. Given Urologists are surgeons they favour their specific experience in surgery but many now seem to be better educated and will happily refer on to others with different techniques. Plus there are now Urology clinics with multi-professionals under the one roof for different views.

I'm not in Sydney but this fellow is well regarded and has a wealth of good resources for someone to look at and then give a patient topics to be discussed with a treating urologist - Phillip Stricker - Prostate Cancer Doctor

One important thing that Stricker says somewhere in regards to Active Surveillance, RP or Open surgery or Brachytherapy, various Focal Therapies, radiation or... is that "Don't chose what you want to do but chose the technique that your urologist or clinic is 'best' at."

 

[k_sheep]

All very true. For young people, if you get even a little bit of pattern 4 they will often move from "active surveillance" (meaning biopsies every 2 years or so) to active treatment - whether it be radiotherapy, androgen deprivation or surgery.

The grading is incredibly subjective too - so urologists should have a good relationship with their reporting pathologists because you will get used to each others' thresholds. In our department, myself and another tend to "under grade" (we are more likely to call 3 + 4) whereas 2 others over grade (would call the same biopsy 4 + 3 or even 4 + 4). The urologists know this so if it's a borderline decision about changing therapy, then they get someone in the "other" group to review.

I had a great week of prostates last week - all benign or 3 + 3

 

[Pushka]

All very true. For young people, if you get even a little bit of pattern 4 they will often move from "active surveillance" (meaning biopsies every 2 years or so) to active treatment - whether it be radiotherapy, androgen deprivation or surgery.

The grading is incredibly subjective too - so urologists should have a good relationship with their reporting pathologists because you will get used to each others' thresholds. In our department, myself and another tend to "under grade" (we are more likely to call 3 + 4) whereas 2 others over grade (would call the same biopsy 4 + 3 or even 4 + 4). The urologists know this so if it's a borderline decision about changing therapy, then they get someone in the "other" group to review.

I had a great week of prostates last week - all benign or 3 + 3

That’s interesting about the lab levels. I’ve recounted before the issue at our RAH lab where post surgical patients continued to get increasing levels of the hormone ? test. The surgeon became concerned when all of his patients started an upward trend. And much angst for the patients who prepared for final outcome. Turned out the lab was using the wrong levels. All of the patients were retested and were fine. There’s a court case coming up.

 

[JohnM]

The grading is incredibly subjective too

I had a great week of prostates last week - all benign or 3 + 3

Knowing that cytology is subjective, the grading was something that I was always cautious about. Over the long period (10% of my life to date ) that I was on active surveillance, while it was 3+3 and the focus was consistent in location and size at each biopsy (3 trans-rectal; 2 trans-perineal) backed up by a similar finding by MRI, I had no concerns because everything was consistent. I would never have wanted to act on the basis of the first biopsy.

Whether I could/should have continued on AS after being assessed as 3+4 is a moot point. The cytology was all done at the same lab, so I had faith that the progression recorded was real. It didn't seem necessary to have another biopsy to 'be sure'. After all, biopsies are invasive, not without risk and fairly costly. I guess one thing I could have asked of the lab is, given I had a long-term record there, whether they were conscious of the change and 'double-checked', as it were, in the way you have described. The problem there, of course, is that interaction with the cytologists is very indirect.

Anyway, be that as it may. There was change, after a long period of consistency, so that was a signal to me that it was time for a decision. It seemed likely that it would now be inevitable the offending organ was going to have to come out - possibly sooner, rather than later. I was physically very well prepared, and emotionally I knew that it was always likely to have to happen, so I said to my urologist "Let's f* this thing off".

One has to go with the evidence, nuanced by 'feelings', I think.

Besides, I had a swag of travel planned to fit it in around....

 

[k_sheep]

That’s interesting about the lab levels. I’ve recounted before the issue at our RAH lab where post surgical patients continued to get increasing levels of the hormone ? test. The surgeon became concerned when all of his patients started an upward trend. And much angst for the patients who prepared for final outcome. Turned out the lab was using the wrong levels. All of the patients were retested and were fine. There’s a court case coming up.

Yes that's with the PSA blood test. Big scandal which has changed the way laboratories are run and supervised.

Whether I could/should have continued on AS after being assessed as 3+4 is a moot point. The cytology was all done at the same lab, so I had faith that the progression recorded was real. It didn't seem necessary to have another biopsy to 'be sure'. After all, biopsies are invasive, not without risk and fairly costly. I guess one thing I could have asked of the lab is, given I had a long-term record there, whether they were conscious of the change and 'double-checked', as it were, in the way you have described. The problem there, of course, is that interaction with the cytologists is very indirect.

Absolutely - which is why pathologists often get a second opinion either formally or informally if it's one of those "could go either way" cases. Last thing we want is the patient to have surgery unnecessarily, and yes I'm counting the biopsies in that category. We go to great lengths to avoid rebiopsy! All the tissue we receive is precious.

 

[docjames]

Speaking of out of pocket, my mother has had recurrence of Melanoma (now considered Stage 3b although no evidence of PET positivity elsewhere). This some 10 months after 9 years of negative follow up and being told she probably doesn’t require ongoing following......

She has been enrolled to a trial, the out-of-pocket for self-funded chemo if not on trial would be in the order of $100k over 12-18 months......

 

[love_the_life]

Speaking of out of pocket, my mother has had recurrence of Melanoma (now considered Stage 3b although no evidence of PET positivity elsewhere). This some 10 months after 9 years of negative follow up and being told she probably doesn’t require ongoing following......

She has been enrolled to a trial, the out-of-pocket for self-funded chemo if not on trial would be in the order of $100k over 12-18 months......

That's eye-watering $$. Hope she does well on the trial and it does the trick.

 

[Pushka]

That's eye-watering $$. Hope she does well on the trial and it does the trick.

Speaking of out of pocket, my mother has had recurrence of Melanoma (now considered Stage 3b although no evidence of PET positivity elsewhere). This some 10 months after 9 years of negative follow up and being told she probably doesn’t require ongoing following......

She has been enrolled to a trial, the out-of-pocket for self-funded chemo if not on trial would be in the order of $100k over 12-18 months......

Yowsers. Guess that means if it’s successful it won’t be on PBS for a while. Hope she receives the actual drug and not placebo.

 

[docjames]

It’s pbs for stage 4 (distant metastasis basically). Stage 3 or below isn’t listed (hence the trial).

Trial is two drugs v one drug plus placebo (no placebo only arm).

 

[docjames]

Yowsers. Guess that means if it’s successful it won’t be on PBS for a while. Hope she receives the actual drug and not placebo.

That’s the current cost, but there’s fairly extensive “negotiation” involved so the cost to the PBS will no doubt end up less per course (but still a lot). That’s assuming the trial proves successful etc.

 

[JohnK]

PSA testing is NOT diagnosis. It is merely an indicator that something may be amiss - and it may create more problems than it purports to or is believed by some to solve... An infection may cause the PSA level to shoot way up, only to go way down once it subsides (my brother being a case in point).

That was the case with me 7 years ago ~6 months after contracting chicken pox as an adult. High PSA reading that went down after subsequent blood test.

 

[hedge]

Speaking of out of pocket, my mother has had recurrence of Melanoma (now considered Stage 3b although no evidence of PET positivity elsewhere). This some 10 months after 9 years of negative follow up and being told she probably doesn’t require ongoing following......

She has been enrolled to a trial, the out-of-pocket for self-funded chemo if not on trial would be in the order of $100k over 12-18 months......

Is Chemo not free through the public system? (sorry I am super new to this).

 

[drross]

Is Chemo not free through the public system? (sorry I am super new to this).

it should be free

 

[Pushka]

Is Chemo not free through the public system? (sorry I am super new to this).

Once it’s approved (and not all are) then it is subsidised I believe. This is a trial.

 

[ellen10]

Is Chemo not free through the public system? (sorry I am super new to this).

Yes Chemo is free in the public system but there are various types of Chemo. So after a treatment course of the "free Chemo" if it does not work they may escalate you to a more advanced Chemo (more expensive) under the PBS but this does not happen automatically to everyone, it is case by case. And of course they do look to see if you are an eligible case for trials.

 

[rogerkambah]

Drugs tend to be specific to a particular type of carcinoma.

They may be approved for use (and subsidisation in cost to the patient via the PBS).

However there may also be situations where the same drug can used for a different type of carcinoma, but isn't approved by the PBS for subsidisation. In this instance the patient may have to bear the full cost of the treatment.

Drug companies go to considerable time and expense in developing new drugs and also to test them and try to produce data that indicates the use of a drug (either a newly developed drug, or an older drug that is accepted for use on a specific carcinoma) is beneficial to the patient.

In these instances the drug companies may run comparative Trials to demonstrate the efficacy of their drug perhaps in comparison to other drugs. These trials are initially rated at Phase1 and if the results produce positive data move on to Phase2 and Phase3 .

Drug companies need numbers of people for these trials to go ahead. They provide healthcare including CT scans, blood tests, xrays etc at no financial cost to the patient. I was offered a place on a Phase 3 testing of a new drug to treat renal cancer, however as it was a comparative test there was no guarantee that one would be give the experimental drug.

There can be a cost in other ways though. The trial was being run in Sydney and I live in Canberra. They wanted me to visit the hospital premises in Sydney every 2 weeks for assessment and treatment. I would also be expected to answer telephone and email questionnaires. Because of the onerous travel and all the reporting conditions, that would have been involved I declined the offer.

I was very pleased to hear that the experimental drug was accepted into the PBS for treatment of renal carcinomas in July last year.

The PBS can be easily searched to determine what drugs are approved for use on particular carcinomas. As mine was approved the cost to me was about $38 a month. If the drug had not been approved the full cost would have been more than $4.5K a month , although I understand that in these situations the drug companies sometimes come to an agreement with the patient enabling the to be able to afford the drug at a lower cost.

Hope that answer your question @hedge

 

[hedge]

Thank you all, this is very useful, and I sincerely appreciate your replies.

Given that everyone reacts differently to chemo (and that there may be many types of chemo drugs that are applicable to a particular carcinoma), do doctors test the subject (via bloods or otherwise), so see what would be the most effective (for both the person and carcinoma)?

 

[Pushka]

Thank you all, this is very useful, and I sincerely appreciate your replies.

Given that everyone reacts differently to chemo (and that there may be many types of chemo drugs that are applicable to a particular carcinoma), do doctors test the subject (via bloods or otherwise), so see what would be the most effective (for both the person and carcinoma)?

Yes. Pathology tests indicate which chemo treatment is most effective. Sometimes chemo will not work with particular types of cancers. Then there are trials which are trying to assess effectiveness.