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Active surveillance prostate cancer.

jtiger
Posts: 11
Joined: Mar 2020

I have prostate cancer. I am under active surveillance. I am deeply concern about it possibly spreading. I see both an Oncologist and Urologist every 3 months to check my PSA level. However, they do not seem too concern about doing anything. I do not know what to do? Please advise. I am deeply concern. How long should I be on active surveillance? I am just, once again, concerned about it spreading and have alot of anxiety depression.

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi Jbunny,

Can you give us some info about your Pca like what you biopsy showed, psa number, gleason score, ect.?  The only way to determine if hou have Pca is by a biopsy performed by your Urologist. Have you had any CAT,MRI, PET scans to determine where inside your Prostate your cancer is located? I would suspect that every three month doctor visit could include a digital test, maybe a biopsy,more blood work to measure PSA?  A lot of talented experienced cancer survivors here to answer your questions as long as we have a little more info.

Dave 3+4

jtiger
Posts: 11
Joined: Mar 2020

My gleason level is a 6. My last PSA Level was a 4.8. I never had any type of test showing where inside my prostate the cancer is. The last biopsy I had was 6 months ago. They found cancer on only one of the 13 clippings. They said it was a non- aggressive cancer, and that is when they told me I had a gleason score of 6. However, I never had a biopsy  done since, or any types of MRI'S, or imaging test. That is why I am concern. Last time with the oncologist he did what I think was a digital test (this is where he sticks his finger up your rectum?), and he told me he found nothing unusual. Both the Urologist and Oncologist said they did not want to do any unnecessary treatments because of the possible side effects. I just hope they know what they are doing? I have had bad back pain, and this scares me because I know that could be a sign of it spreading. However I have severe back problems, and they said that is where the pain is coming from. Please advise. Thank you.

Flyer83948
Posts: 31
Joined: May 2019

   I had a *mostly* similar condition to yours. I'm 59 and had a Gleason 6 with a PSA around 4.8, too. However, my biopsy came back with 6 out of 14 cores showing positive for Gleason 6 type prostate cancer. Now that's quite a bit over the recommended 2 to 3 positive cores recommended for Active Surveillance but nonetheless I wanted to avoid having surgery or radiation so I was looking into the Active Surveillance option for a long time. After an MRI which was consistent with the extensive amount of Gleason 6  found in my prostate by biopsy, I finally relented and decided to go with surgery.

   You, however, say that you have only 1 core out of 13 which came back positive. I believe that that's within the recommended amount for seriously considering Active Surveillance. Frankly, I wouldn't be sweating the situation much if I were you. You've got prostate cancer with a "small c", not a "big C". You do know that most all men are destined to have some prostate cancer if they live long enough but most all die of other causes because prostate cancer tends to grow very slowly in comparison to other cancers, don't you? Studies have shown that about 50% of men in their 50's have some cancerous prostate cells, and that over 70% of men in their 70's have some cancerous prostate cancer cells [Reference: See "Prostate Cancer: What's your risk?" by Harvard Health] but, again, most of these men die of other causes. Speaking as someone who has been in a similar situation as yours but had many more positive biopsy cores, IMHO it seems that you are a good candidate for Active Surveillance BUT you need to read up fully on the subject and educate yourself so that you are comfortable with the fact that you have a slow-growing prostate cancer (just as many men in their 50's and up do even though they may not know it) that will most likely not be the cause of your death and that you are choosing a rational course of action in selecting the Active Surveillance path. If after educating yourself you find that you still can't be comfortable with an Active Surveillance strategy, then you may have to select some treatment for your condition.

jtiger
Posts: 11
Joined: Mar 2020

My last gleason score was a 6. My last PSA level was a 4.8.

Flyer83948
Posts: 31
Joined: May 2019

Those were about my stats, too. My Gleason was 6 and my PSA level was just below 5. But how about your age? That's an important number, too.

jtiger
Posts: 11
Joined: Mar 2020

I am 60 years old.

 

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi,

Did you have any type of scans to show where the cancer is located inside your Prostate, deep inside, close the the edge, by your bladder,ect?

Dave 3+4

jtiger
Posts: 11
Joined: Mar 2020

No my doctors have not done any type of scans that is why I am concerned. I just do not understand how they can determine that the prostate cancer is not spreading by doing just a PSA level check every 3 months? My last ultra sound guided biopsy was done approximately 6 months ago. I have yet to have any imaging test, and I have been under AS for 2 years now. Please advise.

hopeful and opt...
Posts: 2265
Joined: Apr 2009

I am enrolled in an Active Surveillance protocol.....this is my 12th year. It's looks like I will continue  simply being monitored for the rest of my life...... I have not had any radical treatment that can have side effects. Below is a thread that I started.

I really know a lot about Active Surveillance, the different protocols, feeling, etc. I am willing to answer any and all questions that you might have.

Way back when I was first diagnosed, I had all those negative feeling as you do, but now I simply go on with my life.

https://csn.cancer.org/node/320410

 

jtiger
Posts: 11
Joined: Mar 2020

Please read information I gave above.

jtiger
Posts: 11
Joined: Mar 2020

I gave information to Cleveland guy.

 

jtiger
Posts: 11
Joined: Mar 2020

I see you have said you have been on active surveillance for 12 years. I to, are on active surveillance.  I have been on it for 2 years. I am concerned about it possibly spreading, and I fear all types of treatment, and of course death. I have a Major depression type disorder. I am on Social Security Disability for this. Typically, I do not worry about the cancer so much. It is only during these depression times, like now, that I worry about it more and seemingly become obsessed with it. Right now I have severe anxiety and depression. I really do not have anyone to talk to. Both my Oncologist and Urologist tell me not to worry. They tell me I should just trust them. However, I also have severe back pains. I worry this can becoming from a spread. They tell me the back pain is just coming from my back related problems (herniated and bulging disc, arthritis, and a misalignment in the spine). I cannot understand why they will not do some type of exam to reassure me I am okay? I do not know if just a monitoring of my PSA level every 3 months is enough? Please advise. I am very concern.

 

Flyer83948
Posts: 31
Joined: May 2019

Sounds like you have some other physical and mental issues aside from your prostate issues. I would take the advice of your oncologist and urologist if I were you and focus on dealing with your other problems.

hopeful and opt...
Posts: 2265
Joined: Apr 2009

First, take a deep breath!

Approximately 70 percent of those with who have low risk disease will not need treatment; approximately 30 will. That said, among those 30 percent who are closely followed in an active surveillance plan as you are will still be able to be treated, in the same manor as they would have first choosen without any negative consequences.    

The back pain that you complain about is unrelated to prostate cancer.

The active surveillance protocols that doctors follow are not exactily the same, but for the most part similar. At Johns Hopkins for example, the criteria for them to accept a man in an active surveillance program, are two cores or less out of 12 with a 3+3=6 with less than 50 percent involvement in each of the cores that are positive. A PSA under 10 with normal or slight bump in prostate, Ratio PSA/Prostate size less than 0.15. In fact Johns Hopkins is more strigent than most institutions.  You have one of thirteen. You did not indicate the involvement of the core that was positive. (By the way it is a good idea to have a copy at your disposal of all medical records for your referral.)

Here is information that you probably are unaware of: there is a difference between biopsies. There are targeted biopsies availalbe to those with better insurance that are better....that is first a man obtains a T3 MRI. This MRI can indicate extracapsular extension, and determine suspecious lesions in the prostate. This information is targeted by a three dimension biopsy machine that is more likely to find cancer, and you can place more confidence in. Additionally if necessary the doctor can go back to the exact spot where cancer was found in a repeat biopsy if necessary.

From what you mentioned you probably had a random biopsy, with a two dimensional untrasound machine, which most men get. This is good, but not as good as a three dimensional machine.

Two manufactureres of the three dimensional biopsy machine are artemis and uronav.

Tech70
Posts: 64
Joined: Nov 2017

Have been for app. 3 years.  I have had 3 biospys each having 2 positive cores with less than 5% of the core affected.  Gleason scores on all were 3+3 except the second biopsy had one core rated 3+4.  Since it was a new pathology lab, we sent the sample to Johns Hopkings and they rated it 3+3. My PSA has never exceeded 4.0. I also had a 3T MRI which showed no lesion of concern.  Some Pca's consist of microfoci which will not show up on MRI.  One thing that gave me peace of mind in following AS was having the positive biopsy samples sent for Oncotype DX testing, genomic testing that rates the risk of serious pathology going forward.  They provide a score, the lower the better, showing that risk.  My score was quite low so I'm pretty calm about staying with AS.  I note your age is 60; Medicare will pay for genomic testing but some insurance won't.  You might want to check before sending the sample off, as the cost of the test is around $3,000.  However the company does have some provisions for people whose insurance doesn't cover it.

ASAdvocate
Posts: 139
Joined: Apr 2017

A new study of Active Surveillance for Grade Group 1 men with 5, 10, and 15 year results. The results should settle any doubts about the safety of AS.

Written by Leonard S. Marks MD

PRACTICEUPDATE.COM
 
jtiger
Posts: 11
Joined: Mar 2020

Thank you everybody for all help and advice. Unfortunately, while under active surveillance, I have had not as much testing or information for this prostate cancer. I called my Urologist today with my concerns of possible spreading, but he had a somewhat laid back attitude. He told me not to worry I have only a 4.8 PSA level, and a gleason score of a 6. He further told me it is stage 1, and it is a non- aggressive cancer, located within the prostate. I do not know how he got all of this information?In 2 years, under Active Surveillance, I have had only 2 ultrasound guided biopsies, and a PSA level check every 3 months. He does not even give me a digital exam. I only got that on my last visit to my Oncologist 4 weeks ago. The Oncologist, at that time, said it appeared okay. I have yet to have any imaging test. This is why I am concern about possible spreading? Everybody tells me not to worry, especially my one brother, they say, " I will probably die of something else before the prostate cancer should kill me". It is very frustrating. I have no support.  I am looking into the Decipher Bio test. This rates the severity of the cancer. It will show a low rating or a high one. Hopefully, this will give me some inner peace. I am not asking for a spread, but I am concern it might. Just a PSA level check every 3 months does not show, I feel, if it is indeed spreading. Waiting for a sudden rise in my PSA level, before he does any imaging testing like he wants to, may be too late? The cancer is contained inside the prostate, so he saids. I do not know if this indeed shows from just a ultrasound biopsy? Please advise, whoever can. I am very upset. I have a Major depression disorder as it is, which I am on Social Security Disability for, this certainly does not help.

 

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi Jtiger,

If it was me I would press your Urologist for some type of image scan,MRI,PET,ect. to locate the cancer inside of your Prostate.  Even at 3+3 if the cancer is right against your bladder or near the edge of your gland it would concern me.  If the cancer is buried deep inside then at 3+3 you should be able to watch it over the next few years with little worry of it spreading outside the gland.  Just my opinion......

Dave 3+4

jtiger
Posts: 11
Joined: Mar 2020

Is anyone here to comment, or to make suggestions about my case?

ASAdvocate
Posts: 139
Joined: Apr 2017

If you have not had an MRI, you need one. A formal AS program will include a 3Tesla mp-MRI within the first year. Insurance will pay for it. Insist on getting an order for that, of, find a new doctor.

hopeful and opt...
Posts: 2265
Joined: Apr 2009

Ask for a 3Tesla MRI. This test may show extracapsular extension, that is if the cancer is outside the prostate, and will give indication of suspicious lesions, that may or not be cancerous in the prostate, ...you will be better able to sleep at night.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

Ask for a copy of your prostate biopsy, that should show you where the sample that had the cancer in came from and the precentage of cancerous cells in the sample.
If the percentage is low it is likely that the tumour is very small and it will not be visible on an MRI, if the percentage is quite high then you could try an MRI.

Best wishes,

Georges

ASAdvocate
Posts: 139
Joined: Apr 2017

The biopsy report will only show the lesions that we're hit by needles during a blind biopsy. There is the possibility that there are other lesions, which may be visible on an mp-MRI. I vote for the 3T mp-MRI as his next step.

 

 

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

It is worth a try but at the moment where I live you need a good reason to visit a hospital as they are otherwise engaged and they have a few people with a novel infectious disease on the books! :-)

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 266
Joined: Feb 2018

If it is not broke, don't fix it.  Active Surveillance is your chioce of treatment.  I can see where pallative treatment could be worrisome.  But there are lots of folks on this site who are functioning great with this choice.  Personally, I think for now you are making the right choice.  Nuke or gut, in your case, probably not the best choice.  So you need to reconcile yourself that you and your doctors have made the right choice for now.  There are many options in treating PC.  I feel most of us second guess ourselves on the treatment options.  Keep quality of life in front of you;  weigh the information; if not comfortable with what the doctors are telling you get a second opinion; by all means get all the imaging you can, but they do not tell the whole story and are inaccurate in some cases.  On the other hand, tissue under a microscope tells the story.  So get your anxiety under control; don't let it interfere with your life.  In my opinion for now you and your doctors have made the right choice.  Good luck on your journey.

Georges Calvez
Posts: 463
Joined: Sep 2018

Hi there,

If you go in for an MRI then it is possible that if the tumour is small and highly concentrated you can opt for HIFU, Nanoknife, etc that has the capability of spot treatment of the disease.
It does not have the risk of prostatectomy or full on radiation treatment and in some cases it is curative.
Obviously there is the possibility that it will miss a bit and I doubt most medical plans will pay for it so you will have to be self financing, but it is an alternative to active surveillance.

Best wishes,

Georges

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