Active Surveillance vs Treatment Now

Posted by paulchen @paulchen, Sep 19 8:18pm

I'm 55 and my PSA in 2020 was 3.8, 2021 was 3.3, and 2022 jumped to 4.5. Got a biopsy and on this past Thursday learned I have prostate cancer Gleason 6. Most cores were Benign Prostatic Tissue.

6. Left Apex: Adenocarcinoma, Gleason 3+3=6 involving 1 core. Core involvement <5% (<0.5mm).
8. Right Mid: High Grade Prostatic Intraepithelial Neoplasia (PIN).
11. Right Lateral Mid: Focus of Atypical Glands, Suspicious for Low Grade Carcinoma.

The Urologist recommends active surveillance. I'm due back in 6 months for 3 appointments for PSA test, biopsy and MRI.

Does this sound right? Shouldn't we attack this cancer before it becomes aggressive? I'm not a fan of surgery based on the side effects, and I like what I'm reading about Proton Therapy. I highly doubt my private insurance would cover it though so I might be looking at radiation if I need to take action.

What's your point of view on active surveilance vs treatment now based on this?

Interested in more discussions like this? Go to the Prostate Cancer group.

Good evening @paulchen, welcome to Connect. I am glad you found this forum where the mission is to share experiences and increase knowledge about quite a number of medical conditions located in more than 75 groups. I am not a Prostate patient. My life partner is and has been a prostrate patient at Mayo since 2016. So I have been in the room and listening for quite some time. His PSA journey was similar to yours. And a biopsy confirmed the existence of Carcinoma. After listening to all of the test results and making sure we understood as best we could every piece of evidence that would help him make a decision, he chose surgery.

He chose radical prostatectomy for a number of reasons.
#1. The cancer was contained within the prostate boundaries.
#2. Before surgery, he would spend 3 months on lupron to reduce the testosterone build-up.
#3. After the three months during which he had more time to think about his decision, he was still confident
that surgery offered the best chance to be cancer free.
#4. He was very impressed with the surgeon he chose and felt that his "team" was also totally committed to
doing whatever they could to relieve him of the cancer threat.
The robotic surgery went reasonably well. It took longer than expected because they ran into some cancer cells around the margins. So, for several hours, the surgeon would "dig a little deeper" and send the tissue to the lab for an immediate response. The surgery was not closed until there was no longer any cancer to be found.

After following the recommended recovery protocol, he returned to his regular life which is dominated by his passion for landscaping on a hill above the Mississippi River.

Mayo continued to follow him closely and he sent in samples every 3 months and then every 6 months. Just before he got to his two-year check-up, one PSA sample had indications of cancer in those troublesome margins. And so he went to Mayo for 30 consecutive days of radiation. That was 4 years ago and all of his PSA tests have been the desired "undetectable".

One of the processes that impressed us both about the Mayo team was the practice of shared decision-making. I was surprised that he was so open about his thoughts, worries, and questions. He has confidence in their approach to handling patients in difficult situations.

One of the things I really liked was that no matter when I called Mayo for him, someone from his team always answered the phone 7/24. There was no waiting until tomorrow or next week.

I wish you well and encourage you to make the most of this opportunity to learn from other patients.
Do you have immediate questions about the treatment options?

May you be safe, free, and protected from inner and outer harm.
Chris

REPLY

Hello, active surveillance is what you should continue with now. A Gleason score of 6 does not include cancer. You need a Gleason score of at least 7. Note, there is another type of rating system besides Gleason. It doesn’t cause this common confusion error. Keep monitoring and good luck!

REPLY
@artscaping

Good evening @paulchen, welcome to Connect. I am glad you found this forum where the mission is to share experiences and increase knowledge about quite a number of medical conditions located in more than 75 groups. I am not a Prostate patient. My life partner is and has been a prostrate patient at Mayo since 2016. So I have been in the room and listening for quite some time. His PSA journey was similar to yours. And a biopsy confirmed the existence of Carcinoma. After listening to all of the test results and making sure we understood as best we could every piece of evidence that would help him make a decision, he chose surgery.

He chose radical prostatectomy for a number of reasons.
#1. The cancer was contained within the prostate boundaries.
#2. Before surgery, he would spend 3 months on lupron to reduce the testosterone build-up.
#3. After the three months during which he had more time to think about his decision, he was still confident
that surgery offered the best chance to be cancer free.
#4. He was very impressed with the surgeon he chose and felt that his "team" was also totally committed to
doing whatever they could to relieve him of the cancer threat.
The robotic surgery went reasonably well. It took longer than expected because they ran into some cancer cells around the margins. So, for several hours, the surgeon would "dig a little deeper" and send the tissue to the lab for an immediate response. The surgery was not closed until there was no longer any cancer to be found.

After following the recommended recovery protocol, he returned to his regular life which is dominated by his passion for landscaping on a hill above the Mississippi River.

Mayo continued to follow him closely and he sent in samples every 3 months and then every 6 months. Just before he got to his two-year check-up, one PSA sample had indications of cancer in those troublesome margins. And so he went to Mayo for 30 consecutive days of radiation. That was 4 years ago and all of his PSA tests have been the desired "undetectable".

One of the processes that impressed us both about the Mayo team was the practice of shared decision-making. I was surprised that he was so open about his thoughts, worries, and questions. He has confidence in their approach to handling patients in difficult situations.

One of the things I really liked was that no matter when I called Mayo for him, someone from his team always answered the phone 7/24. There was no waiting until tomorrow or next week.

I wish you well and encourage you to make the most of this opportunity to learn from other patients.
Do you have immediate questions about the treatment options?

May you be safe, free, and protected from inner and outer harm.
Chris

Jump to this post

Chris, thank you for sharing your life partner’s story. Can you tell me what his Gleason score was when he was diagnosed?

REPLY
@jerryegge

Hello, active surveillance is what you should continue with now. A Gleason score of 6 does not include cancer. You need a Gleason score of at least 7. Note, there is another type of rating system besides Gleason. It doesn’t cause this common confusion error. Keep monitoring and good luck!

Jump to this post

Jerry, thank you for your response. It is indeed confusing. There seems to be a big debate in the Urology community. My doctor says it’s cancer, but likely not aggressive enough to treat.

REPLY

Hi @paulchen ,
I'm sorry to hear you're in our group.
Given what I'm reading here, it sounds to me like you would prefer to be aggressive in the treatment of your cancer. At the very least, you're questioning the suggestion that surveillance is warranted as opposed to treatment.

When I was diagnosed, I felt exactly as you do, "why aren't we doing something NOW!" My situation was a little further along so active surveillance wasn't really recommended but I'll get back to that anxiety.

If my assessment of your concern is correct, first thing I'd do is take the information you have and consider getting a second opinion. Not so much of the diagnosis but treatment options. Try to get an appointment with a highly rated cancer center to discuss your case. The anxiety that comes from waiting can be almost debilitating, was in my case. I had to go through phases of acceptance, sleep became a little elusive etc.. If you feel you would like to treat, tell your team.

Another minor side issue, If it was me, I'd tell your doctor(s) that I'd feel better with a PSA test in 3 mos as opposed to 6. 6 mos is a long wait to see at what speed (if any) your PSA is rising, maybe it drops a little, wouldn't that be nice to know in three months as opposed to six?

Having said all that….
"The Urologist recommends active surveillance. I'm due back in 6 months for 3 appointments for PSA test, biopsy and MRI."
It seems it takes this long to get appointments in some places anyway, for example it took me 4 mos to see the surgeon and radiation oncologists to let them each pitch their treatment and get my questions answered. Then it took another 3 mos to get my surgery scheduled. Soooo, 6 mos with the gleason of 6 and only 3 dirty cores, in the scheme of things, doesn't sound that long to me. The fact that you're getting the MRI seems like a good backup to surveillance, you can change directions if they find anything they don't like there. Just curious here, are they repeating the biopsy or doing another type of biopsy in 6 mos?

At your age and early stage, assuming reasonably good health otherwise, you have several options for treatment.

One other suggestion, perhaps when you are discussing initial treatment with your team, ask what would be the follow up treatment if the PSA starts to climb again? The reason I suggest this is, if you do some treatments to start the process, it may take some follow ups off the table. In my case I was told that standard radiation (as opposed to proton beam or other newer types) would damage the tissue enough so as to make RP very difficult and requiring a very high level specialist. I only knew to ask because my father battled this the last 35 years of his life, and lived to be 91!

Best of Luck and hopefully some more folks with more experience here can give you a little more support and information.

REPLY
@web265

Hi @paulchen ,
I'm sorry to hear you're in our group.
Given what I'm reading here, it sounds to me like you would prefer to be aggressive in the treatment of your cancer. At the very least, you're questioning the suggestion that surveillance is warranted as opposed to treatment.

When I was diagnosed, I felt exactly as you do, "why aren't we doing something NOW!" My situation was a little further along so active surveillance wasn't really recommended but I'll get back to that anxiety.

If my assessment of your concern is correct, first thing I'd do is take the information you have and consider getting a second opinion. Not so much of the diagnosis but treatment options. Try to get an appointment with a highly rated cancer center to discuss your case. The anxiety that comes from waiting can be almost debilitating, was in my case. I had to go through phases of acceptance, sleep became a little elusive etc.. If you feel you would like to treat, tell your team.

Another minor side issue, If it was me, I'd tell your doctor(s) that I'd feel better with a PSA test in 3 mos as opposed to 6. 6 mos is a long wait to see at what speed (if any) your PSA is rising, maybe it drops a little, wouldn't that be nice to know in three months as opposed to six?

Having said all that….
"The Urologist recommends active surveillance. I'm due back in 6 months for 3 appointments for PSA test, biopsy and MRI."
It seems it takes this long to get appointments in some places anyway, for example it took me 4 mos to see the surgeon and radiation oncologists to let them each pitch their treatment and get my questions answered. Then it took another 3 mos to get my surgery scheduled. Soooo, 6 mos with the gleason of 6 and only 3 dirty cores, in the scheme of things, doesn't sound that long to me. The fact that you're getting the MRI seems like a good backup to surveillance, you can change directions if they find anything they don't like there. Just curious here, are they repeating the biopsy or doing another type of biopsy in 6 mos?

At your age and early stage, assuming reasonably good health otherwise, you have several options for treatment.

One other suggestion, perhaps when you are discussing initial treatment with your team, ask what would be the follow up treatment if the PSA starts to climb again? The reason I suggest this is, if you do some treatments to start the process, it may take some follow ups off the table. In my case I was told that standard radiation (as opposed to proton beam or other newer types) would damage the tissue enough so as to make RP very difficult and requiring a very high level specialist. I only knew to ask because my father battled this the last 35 years of his life, and lived to be 91!

Best of Luck and hopefully some more folks with more experience here can give you a little more support and information.

Jump to this post

Hi @web265,
Thank you for responding and sharing information. I don't know yet if I want to be aggressive in treatment given that I'm still educating myself on the situation. If the risk is truly very low of the cancer becoming aggressive and metastasis occurring, then maybe I can learn to live with the active surveillance. Hoping to hear from folks who have had a similar experience.

I like your suggestions of getting a second opinion on treatment options as well as getting a PSA in 3 months. Even if I choose active surveillance, I can only assume that I will eventually have to take action if things get worse.

As far as appointments are concerned, I have no trouble getting them scheduled quickly. So the 6 month PSA, DRM, biopsy and MRI seems to be standard practice per my conversation with the Urologist. To answer your question about the next biopsy in 6 months, they are repeating the same type.

Thanks again. This really helps!

REPLY

Hi,
When my husband's PSA began to rise, we were told MRI was the way to go. He had 3 MRIs at 3 different facilities over time, and all signs of PCa were missed. We learned as much as 50% of PCa is missed on MRI. When my husband ultimately had surgery, he was found to have T3b (seminal vesicle) involvement. He was diagnosed with T2a prior to surgery, based on his biopsy. Having said this; my feeling is, the only way you know 100% what you are dealing with is to have it removed where they can do the complete pathology on the entire prostate and seminal vesicles. The SVI was not picked up on the MRI, nor biopsy. We never would have known how high risk this was without the surgery. Radiation would have only provided a band aid (in my opinion). We really had to pin the doctors down to get the surgical recommendation. They don't like to choose. One of the surgeons said finally, "I would want to get it out of there" The other one said, "Surgery is cleaner and you know what you are dealing with." Again, just someone who has been on a several year journey with this and only my opinions and personal observations. Good luck with your decision.

REPLY
@paulchen

Hi @web265,
Thank you for responding and sharing information. I don't know yet if I want to be aggressive in treatment given that I'm still educating myself on the situation. If the risk is truly very low of the cancer becoming aggressive and metastasis occurring, then maybe I can learn to live with the active surveillance. Hoping to hear from folks who have had a similar experience.

I like your suggestions of getting a second opinion on treatment options as well as getting a PSA in 3 months. Even if I choose active surveillance, I can only assume that I will eventually have to take action if things get worse.

As far as appointments are concerned, I have no trouble getting them scheduled quickly. So the 6 month PSA, DRM, biopsy and MRI seems to be standard practice per my conversation with the Urologist. To answer your question about the next biopsy in 6 months, they are repeating the same type.

Thanks again. This really helps!

Jump to this post

Please see my comments above (or) below, as I do not think it was posted as a Reply.
darlynn

REPLY
@darlynn

Hi,
When my husband's PSA began to rise, we were told MRI was the way to go. He had 3 MRIs at 3 different facilities over time, and all signs of PCa were missed. We learned as much as 50% of PCa is missed on MRI. When my husband ultimately had surgery, he was found to have T3b (seminal vesicle) involvement. He was diagnosed with T2a prior to surgery, based on his biopsy. Having said this; my feeling is, the only way you know 100% what you are dealing with is to have it removed where they can do the complete pathology on the entire prostate and seminal vesicles. The SVI was not picked up on the MRI, nor biopsy. We never would have known how high risk this was without the surgery. Radiation would have only provided a band aid (in my opinion). We really had to pin the doctors down to get the surgical recommendation. They don't like to choose. One of the surgeons said finally, "I would want to get it out of there" The other one said, "Surgery is cleaner and you know what you are dealing with." Again, just someone who has been on a several year journey with this and only my opinions and personal observations. Good luck with your decision.

Jump to this post

Hi @darlynn,
Thank you so much for sharing your experience. How long was it between your husband’s T2a diagnosis and the surgery?

REPLY

Hi,
He was able to get in quickly. Diagnosed June and had surgery in beginning of August. Based on the biopsy, they said there was no rush and he could wait 6 months, however, we wanted to get it done before the holidays and get it behind us.
Glad we did.

REPLY
@paulchen

Chris, thank you for sharing your life partner’s story. Can you tell me what his Gleason score was when he was diagnosed?

Jump to this post

Hi, I was diagnosed with a Gleason 6, waited
1 year had another biopsy; Gleason remained at 6, but there was more cancer, so I started radiation, and eventually moved on to hormone therapy. I hope this was at least some help.
Philnob

REPLY
@philnob

Hi, I was diagnosed with a Gleason 6, waited
1 year had another biopsy; Gleason remained at 6, but there was more cancer, so I started radiation, and eventually moved on to hormone therapy. I hope this was at least some help.
Philnob

Jump to this post

Hi @philnob,
Thanks for your response. This does help! How old were you, and what drove your decision to do radiation and hormones versus surgery. Did your age factor into the decision at all?

REPLY
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