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Treatment: Active Surveillance

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User
Posted 05 Jan 2025 at 12:40

Hi All,

I too have just received the dreadful news that I have prostrate cancer at the age of 65. I suffer from chronic Kidney decease and have to give regular blood samples. It was after one of my visits to give blood that I was referred for a prostrate biopsy, due to an increased level of PSA from my last blood sample. The biopsy confirmed that I do have prostrate cancer.

My consultant has informed me that I am at the very early stages, having a PSA of only 9.6 and a Gleason3+3 (Left side cores) and has advised my treatment be ‘Active Surveillance’. What are peoples thoughts on this treatment, I am concerned that the cancer may spread before I receive evidence of the cancer growing? What are people’s experiences? Am I worrying too much given the low readings? Thanks for any feedback.    

User
Posted 05 Jan 2025 at 13:39

Hi Norman.

I'm sorry that you've had to join our club but welcome to the forum, mate.

Active surveillance is on the increase.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

You meet the criteria to be suitable for AS. 

Four years ago, I was offered AS with a very similar diagnosis to you. I was on it for almost two years before they discovered my disease had progressed and I ended up having robotic surgery.

Although my AS failed, I still think for low grade, safely contained Gleason 6 (3+3) it is still a very good option. It might be that you will never need any radical treatment and avoid the side effects of further treatments.

My only warnings to AS are:

You must have the mindset to deal with the fact that you have the disease but are happy to have it monitored. You must ensure that the AS is active. Make sure you have follow up PSA checks and MRIs etc. Remember that biopsy results aren't always accurate. I'm pretty sure that in my case they missed more aggressive cancer. That's why it's imperative to be correctly monitored.

The great thing about AS is you can change your mind if it doesn't suit you or things go awry.

Good luck, mate.👍

 

User
Posted 05 Jan 2025 at 16:54

Reklaw,

You are a prime candidate for AS. The studies have shown for someone like you AS came about. Their are some physicians that call for Gleason 6 (3+3) not to be called cancer, although I would not go that far. It is a mindset though to be on AS and there are other cancers that take this approach with watchful waiting until treatment. Gleason 6 is low grade. AS is not fringe it is mainstream but as Adrian emphasizes you must be vigilant in your follow ups be it blood work, MRI’s or biopsies. In Adrian’s case AS unfortunately failed and his cancer advanced , but in many others it won’t. Although in his case it sounds like if AS was more vigilant by the Doctors it would have been caught sooner, but he then proceeded with his treatment and not speaking for him but I don’t believe he regrets his AS decision. There are numerous advantages to being on AS because if your concern is that your Gleason 6 is growing it should not be missed and you end up with likely the same treatment protocol maybe two, three or five plus years later without incurring any of the side effects and having had a quality of life you enjoyed before your diagnosis. In addition the time that you are on AS new treatments can possibly be coming out from clinical trials that have established successful treatment protocols with less side effects. Also long term studies having followed patients complete and the results also can show what protocols are better. In the beginning AS was limited to Gleason 6 patient’s and then as studies came out offered to Gleason 7 (3+4) favorable and now depending on a patient to Gleason 7 (4+3). Clearly as AS expanded the monitoring of AS is critical, but again critical even for Gleason 6. Although I personally feel they believe Gleason 7 patients will likely need treatment sooner and are just trying to advance their quality of life without side effects from treatment for a couple years, but they have expanded it because of studies. I had a previous cancer and was able to do some watchful waiting until I finally needed to start chemotherapy.

User
Posted 05 Jan 2025 at 17:45

Originally Posted by: Online Community Member
In Adrian’s case AS unfortunately failed and his cancer advanced , but in many others it won’t. Although in his case it sounds like if AS was more vigilant by the Doctors it would have been caught sooner, but he then proceeded with his treatment and not speaking for him but I don’t believe he regrets his AS decision.

Hi Ned.

You've got it spot on. 👌 

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User
Posted 05 Jan 2025 at 13:39

Hi Norman.

I'm sorry that you've had to join our club but welcome to the forum, mate.

Active surveillance is on the increase.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

You meet the criteria to be suitable for AS. 

Four years ago, I was offered AS with a very similar diagnosis to you. I was on it for almost two years before they discovered my disease had progressed and I ended up having robotic surgery.

Although my AS failed, I still think for low grade, safely contained Gleason 6 (3+3) it is still a very good option. It might be that you will never need any radical treatment and avoid the side effects of further treatments.

My only warnings to AS are:

You must have the mindset to deal with the fact that you have the disease but are happy to have it monitored. You must ensure that the AS is active. Make sure you have follow up PSA checks and MRIs etc. Remember that biopsy results aren't always accurate. I'm pretty sure that in my case they missed more aggressive cancer. That's why it's imperative to be correctly monitored.

The great thing about AS is you can change your mind if it doesn't suit you or things go awry.

Good luck, mate.👍

 

User
Posted 05 Jan 2025 at 16:54

Reklaw,

You are a prime candidate for AS. The studies have shown for someone like you AS came about. Their are some physicians that call for Gleason 6 (3+3) not to be called cancer, although I would not go that far. It is a mindset though to be on AS and there are other cancers that take this approach with watchful waiting until treatment. Gleason 6 is low grade. AS is not fringe it is mainstream but as Adrian emphasizes you must be vigilant in your follow ups be it blood work, MRI’s or biopsies. In Adrian’s case AS unfortunately failed and his cancer advanced , but in many others it won’t. Although in his case it sounds like if AS was more vigilant by the Doctors it would have been caught sooner, but he then proceeded with his treatment and not speaking for him but I don’t believe he regrets his AS decision. There are numerous advantages to being on AS because if your concern is that your Gleason 6 is growing it should not be missed and you end up with likely the same treatment protocol maybe two, three or five plus years later without incurring any of the side effects and having had a quality of life you enjoyed before your diagnosis. In addition the time that you are on AS new treatments can possibly be coming out from clinical trials that have established successful treatment protocols with less side effects. Also long term studies having followed patients complete and the results also can show what protocols are better. In the beginning AS was limited to Gleason 6 patient’s and then as studies came out offered to Gleason 7 (3+4) favorable and now depending on a patient to Gleason 7 (4+3). Clearly as AS expanded the monitoring of AS is critical, but again critical even for Gleason 6. Although I personally feel they believe Gleason 7 patients will likely need treatment sooner and are just trying to advance their quality of life without side effects from treatment for a couple years, but they have expanded it because of studies. I had a previous cancer and was able to do some watchful waiting until I finally needed to start chemotherapy.

User
Posted 05 Jan 2025 at 17:45

Originally Posted by: Online Community Member
In Adrian’s case AS unfortunately failed and his cancer advanced , but in many others it won’t. Although in his case it sounds like if AS was more vigilant by the Doctors it would have been caught sooner, but he then proceeded with his treatment and not speaking for him but I don’t believe he regrets his AS decision.

Hi Ned.

You've got it spot on. 👌 

 
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