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Active Surveillance continues; this is the way to go

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Hi Fernando and others,

I updated my CSN space to include, my lastest Free PSA, PSA and this months targeted biopsy results.

I was diagnosed March 09 with a 3+3=6 less than 5% in two cores out of 12 random cores taken.

Afterward I entered into a research project where a series of directed biopsies were given; making use of a T3 MRI, suspecious lesions evaluated and ranked,then a targeted biopsy using a three dimensional  Artemis machine that was able to lock into the MRI results and targeted for results that one can place more confidence in than a random two dimensional biopsy machine..

I have been able to avoid treatments that can cause major side effects such as incontinence, ED or compications of surgery, etc. and go on with my life in a normal way. This is the nationally recommended treatment, and more and more men are making use of this.

In my lastest biopsy there were 19 cores taken; with three cores found with cancer in the left base, 20% 5mm....30% 4mm and 5% 1mm. 

In a previous biopsy there was a small amount of 3+4=7 found. The surrounding area was surveyed in this current biopsy(since it is three dimensional) and the doctor was able to return to the exact spot of the 3+4=7 and there no 4's were found.

My next biopsy is due in two years. So far I have been in the active surveillance program for over 10 years;

To add I have been conscious of my diet, not eating meat or high fat dairy, or oils, basically very heart healthy and exercising regularly. I feel that this has significantly positively contribute to my well being.

So to emphasize I have lived a normal life during this time; not experienced the potential side effects of treatments, that unfortunately many pursue without doing proper research.

Best

 

 

 

 

greenteaguy
Posts: 36
Joined: Feb 2019

Thank you for sharing your story because I am on the same track.  Over the course of the last year since being diagnosed in 7/2018 I have changed to a mostly plant based diet and the results have been dramatic.  Every single result of my blood test comes back normal except of course the PSA.  I have readily adopted this new lifestyle and actually enjoy being a lot healthier knowing my enhanced immune system is better equipped to attack the cancer and help keep it from growing.

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi there,

May I wish you bonne continuation, a rough translation from the French is may things go well for you in the future.
I found your ten year history of PSA results in which you have had a low level of prostate cancer really interesting.
The lowest result I could find was 2.6 and the highest was 8, quite a range and we must bear in mind that in that time you have done nothing in medical terms to the cancer except watch it.
So a lesson there for us all when we obsess over the latest PSA result!

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

I say good for you.  Eat healthy, stay healthy.  Active surveillance is definitely a viable treatment option and works for you.  Hopefully, I will be looking for your posts for another 10 years.  Good luck on your journey.

ufknkidding
Posts: 41
Joined: Aug 2019

I really considered active surveillance as my first treatment option since I had two hot cores with one 3+3=6 and the other 3+4=7.  Science currently seems to support active surveillance for gleason 6 or less so the one core of 3+4=7 was a factor in my decision.  PSAs were slightly above 4.  I had a MRI done which was somewhat poorly read but it appeared to show fairly diffuse cancer in the transition zone. It appears the cancer is confined to the gland and currently slow growing so it could be a viable option to wait and watch.  However, I factored in my age (low 50s) and current health realizing I should recover faster compared to if I waited until I was 15-30 years older due to body chemistry and slower healing processes.  I also factored in my family history with several fellas diagnosed with prostate cancer.  For me, I decided best to remove the gland now; unless I die on the OR table. Cancer is an interesting disease and abnormal cell growth can be very unpredictable. It could be slow growing for a time then become aggresively metastatic. You just never know however, your commitment to routine labs, biopsies, and doctor visits gives you a pretty good chance of detecting a change in the disease.  Thank you for participating in the research project and best wishes.

ufknkidding
Posts: 41
Joined: Aug 2019

So I am 9 days post RARP (RIP my dear prostate) and 1 day post cath removal (OMG). The surgeon and I talked about my post-surgery pathology report which I must admit totally blew me away.  In the very beginning after noticing my PSAs were going above 4 then dropping back down I committed to annual PSA checks.  I was experiencing what I thought were some BPH issues as my prostate was enlarging, which seems to be normal as men age.  I have a positive family history for prostate cancer so that was a major factor in all of my decisions.  After I had a recent PSA in the high 5 range, I decided to have a biopsy at the recommendation of my surgeon. I followed his advice and found I had two hot cores (3+3=6 and 3+4=7). For the Gleason 3+4=7, approximately 50% of one of one needle (5% pattern 4).  I thought, only 5%, well maybe I should do A/S.  But the current literature seems to indicate A/S for gleasons 6 or lower.  So next I had an MRI done and thought it was poorly read because it was indicating there was diffiuse cancer in the transition zone. (Sorry my radiologist, you were right!)  I thought, so an imaging study looking at shaded areas is suggesting I may have more cancer than a biopsy with a pathology study where somebody puts their eyes to look for cellular change. How can that be?  Ya, I understand a needle may actually miss cancer if it doesn't go through the cancerous areas but I was hopeful that I could wait out this cancer thing. And I began to shrug off the MRI all the way to a couple hours before my surgery (almost cancelling my surgery) because I figured biopsy trumps MRI.  But together, along with elevated PSAs, they were indicating I had cancer, Grade Group 2 (Gleason 3+4=7) and I should take some action.  So I elected RARP a week ago all the while struggling with should I even treat.  But my family history kept coming up in my mind. Then yesterday my surgeon reviewed the post-surgery path report where the pathologist takes the removed gland and slices and dices it.  My report indicated that approximately 35% of my prostate was involved.  Signifcantly more than the first path report where 5% had been identified.  Fortunately I don't appear to have extra-prostatic extension so it's confined to the gland which is now gone.  So I thought I would share my story so newly diagnosed individuals will considered everything along the way.  I still agree A/S is a great option for Gleasons 6 or less until data and science proves otherwise, but I'm not so sure about including that as a viable option for Gleasons 7.  Clearly there is no one size fits all here.  Newly diagnosed? Please read, research, review, and consider everything including your family history.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Unfkn-

Thank you for your complete detailed answer. Of course a man with 35 percent prostate involvement does not qualify for AS. It is fortunate that you sought an active treatment.

Here is information about AS protocol that one may find helpful. A study has shown that a combination fusion, random biopsy is able to find more cancer than a fusion or a random only since each type has advantages in finding cores of cancer. Basically it is indicated that an MRI before the biopsy is most appropriate, not afterward.

In managing an AS case not only are 3+3=6 , which do not leave the prostate, but small amounts of 3+4=7, since with a three dimensional fusion biopsy, there exists an ability to retarget and survey that area for additional 4s. AS is generally not age dependent

VascodaGama's picture
VascodaGama
Posts: 3044
Joined: Nov 2010

Ira,

I am very glad for your update on this tenth’s year since diagnosis in 2009. This latest results confirms that AS was the best option for you. Congratulations.

Your successful story serves to demonstrate to the many that one can live with the enemy and avoid the dreadful side effects of therapies. Your ten years as survivor of AS gives hope to the many following your steps. I hope that those with similar initial diagnosis consider also deeply this modality before deciding on a radical treatment.
You are now 76 which age made you absolute for some therapies. Surely the bandit is not expected to cause trouble but I wonder if you are still considering CyberKnife in case of any occurrence.

I and many here have been missing your posts. The subject regarding Active Surveillance has not been much discussed since your departure but I think that not much has changed in the principles of AS. I know that facts have driven you to other waters and that now you are involved in helping PCa patients at your community. I hope you continue posting us the updates.

Best wishes for continuing success.

VGama

How about a trip to Portugal to participate with me in our first marathon for prostate cancer awareness?

https://institutodaprostata.com/2019/07/noticias/divulgacao-de-patrocinadores-p-race/

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Greenteaguy

This post about my journey was written as an example of my success in order to encourage others such as you to follow this protocol, and hopefully not expience the chance of major side effects from active treatment. In a closely monitored AS program, if progression occurs, a man will still be able to pursue an initial treatment choice with no adverse effects from waiting.

 

By the way, about 10 years ago there was a small study done by Dr Dean ornish that showed a slight psa decline among those on a plant based diet and a less stress life style.

Georges

Your right psa is an indicator only; we need to review the trend only, not individual results. Thanks for the comment.

Lighter woods

Thanks for your comments.....wish you the best as well....look forward to reading your posts ten years from now

Ufknkidding

Don't know the details of your case. but it is possible to pursue AS with a small amount of 4 as I have.  Also following AS is not age related ....suggest that you consult with a doctor that specializes in AS.

Vasco

Thank you for the invitation and your very clear writing about my situation  As usual you say it better in your second language than I in my primary.. Your comments are right on target.

In answer to your question, I feel that radiation is the best choice of treatment, that the outcome of each radiation type is similar to one another; imrt, proton, sbrt, etc. I still favor sbrt of which cyberknife is one the machines that is used to deliver ...only four or five sessions appeal to me with high cure rate and minimal side effects. I might consider pencil beam proton especially if sbrt is developed for this radiation type, but the nearest one is in San Diego, pretty far for me 

I did not know what my biopsy outcome would be so was ready to call s SBRT doc who uses the Varian machine

 

 

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Forgot to memtion that I am active at a local support group, where I share information about my experiences and study, with newly diagnosed in the southern california area.I am simply sharing my experience and do not give medical direction. I feel that I am helping them in their decision making, and I feel very good about this. 

This weekend, I plan to attend the PCRI conference at the Marriot hotel near the Los Angeles Airport. This conference is highly attended, and is catered to the patient. Prehaps some who post here will attend. 

ASAdvocate
Posts: 117
Joined: Apr 2017

I also have been on AS for ten years now.

My 2019 MRI and biopsy are the same as my 2009 tests. One core of 5% Gleason(3+3).

It seems like I spend a lot of my time arguing with “cut it out now” surgery advocates, but trying to prevent low risk men from overtreatment is a mission for me.

Continued good health to you!

sross111
Posts: 5
Joined: May 2019

I am in a similar situation.  Diagnosed about a year ago...3+3=6.  Been on active suvalience at U. of Chicago.  Next exam in a couple of months.  Just hoping nothing has grown.  

hopeful and opt...
Posts: 2226
Joined: Apr 2009

AS, I read your posts at this site and healingwell. I believe that you are very knowledgeable about prostate cancer and treatments. You selected a great institution for ttreatment...John Hopkins....a center of excellence....I'm being treated at UCLA.

I also, at this site,  argued with the surgery now group, who ignorantly advocated "cut it out",  over  treating eventhough science indicates otherwise. I found it stressful, so I am now very active at a local support group.......I plan to explore the healingwell site, and maybe post there.

SRoss....good luck at u of Chicago......can you share their protocol with us.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

A/S and hopeful, you have both added vital information here over the years. You are to be applauded and congratulated.

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Max, 

Thank you for the kind words. I hope all goes well with you

CC52
Posts: 103
Joined: Nov 2013

Hopeful - I'm very happy that you continue to get excellent reports as you continue your journey on AS. Your posts provide invaluable imformation for all of us impacted by prostate cancer. Yes, we all have differing diagnoses and details that are uniquely ours. But your story (and those of others here that choose AS) are reminders of alternatives many may never know about without your efforts. 

My appreciation to you H&O, as well as continued best wishes. I raise my glass!

TB2G
Posts: 1
Joined: Nov 2019

I agree that AS is a viable treatment option for some, however, AS must always approached with the understanding that approximately 30% of those on AS with a Gleason socre of 3+3/6 are actually harboring some Gleason 4 that has not been found on a biopsy. AS is a good option up until the point that it is not. If one remains on AS, and is harboring a hidden more agressive cancer, then they are allowing that cancer more time to spread outside the prostate. The problem is, without complete removal of the prostate and post pathology analysis, there is no way to know with 100% assurity. 

This was my case. June 19 3T MRI indicated pirads 5 lesion. Had previously suffered thru 3 years of sometimes very serious prostititis. Early July 19 MRI guided/ targeted biopsy showed only Gleason 3+3 in 5% of 2 cores (from 16 total). Was advised by Doctors at Mayo that AS was my best treatment option, and that the pirads 5 was likely do to chronic and acute prostatitis. Initial pathology confirm by Jonathan Epstein at Johns Hopkins. Wanted a second opinion. Went to William Catalona. He suggested that based on my age (52), long term AS posed significant risk. Underwnt RRP (open) on 21OCT19.

Post operative pathology indicted cancer was in 16% of the prostate (55g total). 40% of the cancer was actually Gleason 3+4 which was not found in the JUL19 biopsy. Fortunately, surgery got it early, and post operative pathology showed no lymphnode or seminal vessicle involvement. Cancer was all contained in the prostate with negative margins. Thats puts me in a much better nomogram bracket compared to if I had remained on AS and given the cancer time to spread.

 

Point being  - choosing AS involves some inherent risk that the biospsy misses more aggressive cancer that is actually in the prostate (this happens more than 30% of the time), and the decision to stay on AS is founded on a potentially false belief that more aggressive cancer does not exist.

I do not write this in order to deter people from considering AS. I just write it as a warning. This is based on my personal experience, and is in line with the opinions of Dr. William Catalona, my trusted surgeon.

TB2G

 

Thanks be to God

AZ

hopeful and opt...
Posts: 2226
Joined: Apr 2009

True, approximately 30 percent of cancers determined for low risk are wolves in sheeps clothing, and can spread. So it is important to be in Active Surveillance program that is well monitored. In my opinion there is a difference among Active Surveillance programs. I feel that an Avtive Surveillance program that encompasses an MRI targeted to a three dimensional biopsy machine such as Artemis or Uronav, or, a biopsy in MRI "bore" are the best. Chevy versus Ford. ( In my opinion) Other Active Surveillance programs without these high tech machines are good, but do not compare.

A doctor who monitors a patient in well monitored Active Surveillance program will have have the ability to determine when an Active Treatment is necessary. Active Surveilance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I selected Active Surveilance as my treatment decision in March, 09 . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment. 

I hope that this response adds to your comments about Active Surveillance

Best

 

 

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