Prostate cancer staging
June 30, 2024 5:16 AM Subscribe
About three hours ago, I found out my brother has prostate cancer. He told me what treatment he is having but didn't know what a Gleason Score was, and didn't mention staging. I don't want to ask him right now about that, but reading about it online and trying to work it out for myself is confusing and upsetting. You're not a doctor / his doctor, but I'd welcome any guidance or advice based on your own experIence. This is how I process bad news, it seems.
He is 55 this September, had no symptoms and went for a PSA test at the urging of his wife, as part of a well-man package of tests. This was around Easter. He's had PET / CT scans, digital exam, blood tests, x-rays, biopsies - basically the full works. He is very fit. He has been started on hormone injections to block testosterone, which is ongoing, and following one on the 18th July will be starting chemo. This will be carried out over the following 18 weeks (think he said it was six courses over that time). After that, it will be radiotherapy. He mentioned there was some lymph node involvement, but didn't say there was wider spread and was talking about getting through the treatment in a positive manner, planning for a charity walk in a couple of years, and so on. He is not having surgery.
I'm confused about the proposed treatment. He's pretty young for this sort of cancer as I understand it, so that suggests to this layperson that it is likely to be a more aggressive type of disease. He is also getting what the various reputable cancer advice sites (e.g. Cancer Research UK) suggest is the treatment for metastatic cancer, which is obviously really bad news. However, he was very straight with me about what was happening and very positive about the future, and he's had since Easter to come to terms with his diagnosis, so I'd like to think if it were the worst news, he might have said? Unless this is how people prepare their family members for what's likely to come down the track. Or of course, if no one knows yet.I
Like I said, there's no way I'm going to ask him about it, but I'm anxious about the health of loved ones and family members at the best of times. I just don't want to Google any more.
I suppose my question is whether the proposed treatment pattern is typical for anyone with prostate cancer with some lymph nodes involved, or is it a sign that things are potentially worse than maybe even he realises? He's glass half full and I'm glass half empty. Again, you're not a doctor, his doctor, anything medical.
Bonus points if you know of anyone of a similar age / with similar diagnoses who came out the other side of something similar.
He is 55 this September, had no symptoms and went for a PSA test at the urging of his wife, as part of a well-man package of tests. This was around Easter. He's had PET / CT scans, digital exam, blood tests, x-rays, biopsies - basically the full works. He is very fit. He has been started on hormone injections to block testosterone, which is ongoing, and following one on the 18th July will be starting chemo. This will be carried out over the following 18 weeks (think he said it was six courses over that time). After that, it will be radiotherapy. He mentioned there was some lymph node involvement, but didn't say there was wider spread and was talking about getting through the treatment in a positive manner, planning for a charity walk in a couple of years, and so on. He is not having surgery.
I'm confused about the proposed treatment. He's pretty young for this sort of cancer as I understand it, so that suggests to this layperson that it is likely to be a more aggressive type of disease. He is also getting what the various reputable cancer advice sites (e.g. Cancer Research UK) suggest is the treatment for metastatic cancer, which is obviously really bad news. However, he was very straight with me about what was happening and very positive about the future, and he's had since Easter to come to terms with his diagnosis, so I'd like to think if it were the worst news, he might have said? Unless this is how people prepare their family members for what's likely to come down the track. Or of course, if no one knows yet.I
Like I said, there's no way I'm going to ask him about it, but I'm anxious about the health of loved ones and family members at the best of times. I just don't want to Google any more.
I suppose my question is whether the proposed treatment pattern is typical for anyone with prostate cancer with some lymph nodes involved, or is it a sign that things are potentially worse than maybe even he realises? He's glass half full and I'm glass half empty. Again, you're not a doctor, his doctor, anything medical.
Bonus points if you know of anyone of a similar age / with similar diagnoses who came out the other side of something similar.
He's certainly had those detailed discussions with his doctors and it sounds like you think he's being honest with you, which would suggest that the doctors are positive about his outlook. That's encouraging, even though there's always some uncertainty and that's a difficult thing for everyone. You have the right impulse in looking elsewhere for answers and reassurance.
Many people with prostates will get prostate cancer as they age. If it's slow-growing, the outlook can be very good compared to other cancers you may be more familiar with. Cancer that is caught through screening rather than symptoms is sometimes quite early stage and/or slow-growing. It also tends to be caught at an earlier age, hence the screening in the first place, so I wouldn't assume it is aggressive purely for that reason. He's 55, not 35. It's not really that unusual. The average age at diagnosis is mid 60s and some of those are more advanced rather than caught early though screening. That's all to say, while none of us can comment on the details of his actual cancer, it's certainly plausible that he's not misguided about his prognosis. That said, he may or may not feel the need to put a more positive spin on it when talking to others, for many reasons, so it's not really productive to speculate about possibilities.
The lack of surgery can mean a lot of things. Surgery has risks in general and prostate cancer surgery also has specific risks related to loss of function. Surgery can also increase the risk of metastasis in certain situations. So the benefit has to be worth it, and surgery is not always recommended for cancer. Surgery also may not be the most effective tool when there is already some spread (ie lymph nodes). There's a risk versus benefit analysis involved in the doctors' recommendations, and your brother also may or may not choose to go through with surgery even if it is suggested.
posted by randomnity at 6:32 AM on June 30 [2 favorites]
Many people with prostates will get prostate cancer as they age. If it's slow-growing, the outlook can be very good compared to other cancers you may be more familiar with. Cancer that is caught through screening rather than symptoms is sometimes quite early stage and/or slow-growing. It also tends to be caught at an earlier age, hence the screening in the first place, so I wouldn't assume it is aggressive purely for that reason. He's 55, not 35. It's not really that unusual. The average age at diagnosis is mid 60s and some of those are more advanced rather than caught early though screening. That's all to say, while none of us can comment on the details of his actual cancer, it's certainly plausible that he's not misguided about his prognosis. That said, he may or may not feel the need to put a more positive spin on it when talking to others, for many reasons, so it's not really productive to speculate about possibilities.
The lack of surgery can mean a lot of things. Surgery has risks in general and prostate cancer surgery also has specific risks related to loss of function. Surgery can also increase the risk of metastasis in certain situations. So the benefit has to be worth it, and surgery is not always recommended for cancer. Surgery also may not be the most effective tool when there is already some spread (ie lymph nodes). There's a risk versus benefit analysis involved in the doctors' recommendations, and your brother also may or may not choose to go through with surgery even if it is suggested.
posted by randomnity at 6:32 AM on June 30 [2 favorites]
Here is some information that may be germane:
- Lymph node involvement detected on imaging, sometimes called "clinical lymph node involvement," automatically classifies prostate cancer as stage IV, regardless of the extent of the tumor itself.
- In a retrospective analysis of patients with specifically pelvic lymph node involvement at the time of diagnosis, those who received local therapy (either radiation or surgery) and androgen deprivation therapy (ADT, that is, hormone blocking therapy) had a five-year survival of about 80%. There was no difference in survival detected between those who had radiation and those who had surgery.
posted by telegraph at 6:34 AM on June 30 [3 favorites]
- Lymph node involvement detected on imaging, sometimes called "clinical lymph node involvement," automatically classifies prostate cancer as stage IV, regardless of the extent of the tumor itself.
- In a retrospective analysis of patients with specifically pelvic lymph node involvement at the time of diagnosis, those who received local therapy (either radiation or surgery) and androgen deprivation therapy (ADT, that is, hormone blocking therapy) had a five-year survival of about 80%. There was no difference in survival detected between those who had radiation and those who had surgery.
posted by telegraph at 6:34 AM on June 30 [3 favorites]
I was first diagnosed with prostate cancer in 2000 at age 51, and have been dealing with it ever since. First, prostatectomy (surgery to remove the prostate). A few years later, a course of radiation and hormone treatment in response to a very slightly rising PSA (which meant that the surgery didn't quite remove every smidgen of cancer). Then, years of monitoring the PSA with occasional CT scans that showed no spread. Then, a few years ago, a far more sensitive PET scan when it became available, which showed some metastasis in a few bone and lymph node spots. As a result, ongoing hormone therapy plus enzaludamide (Xtandi, 4 pills a day). No chemo thus far.
This puts me more or less at the same spot as your brother, except that he still has a prostate gland and I don't. I think my prognosis is good. Your brother's chemo and radiation (which will be focused on the prostate itself, I believe, not the metastases) are designed to knock down as much of the cancer as possible. Surgery is probably deemed to be useless in this case because while removing a chunk of cancer in the prostate, it would not address the metastases and might cause more spread. But his treatment will not be curative, nor will mine. For him it will be a matter of watching the PSA after the chemo and radiation, while continuing the hormone therapy. Eventually, the cancer will become resistant to the hormone treatment, evidenced by a rising PSA, at which point they will add in the enzaludamide or something similar.
At this point, on that regiment (hormone + enzaludamide), my PSA taken every three months is undetectable. This could go on for months or years, nobody can tell, but then it will start to rise again, meaning that the cancer has evolved to resist the treatment and is once again growing and spreading. Hopefully, for both of us, this is years from now, and other treatments will have been developed.
One option, for example (as I understand it) is to use the PSMA agent which is used to seek out cancer cells in the PET scans and light them up for the scanner by delivering a small dose of radiation. That agent could instead deliver a larger dose of radiation, or chemo, into the cancer cells to kill them. (Pluvicto is one such treatment.) The problem with this concept is that prostate cancer is a solid tumor, so penetrating its interior with PSMA-delivered killers is problematic. (The method works much better with liquid-borne cancers like leukemia.) Beyond this, there are other ideas in development or early rollout, like immunotherapy (Provenge).
Gleason score is important for initial treatment, but so it the PSA score, which is probably what brought this to the attention of his doctor. Without question, as his brother, if you have not already done so, you should arrange for a PSA test and followup if the the score is too high for your age. This cancer can definitely be inherited and run in families. Don't wait.
The good news is that regardless of what stage one is at, this is a pretty slow growing cancer. If you had to choose your cancer, pick this one. I've been dealing with it for 25 years and plan to keep it at bay long enough for something else to kill me first; your brother can realistically expect to do the same.
posted by beagle at 7:26 AM on June 30 [17 favorites]
This puts me more or less at the same spot as your brother, except that he still has a prostate gland and I don't. I think my prognosis is good. Your brother's chemo and radiation (which will be focused on the prostate itself, I believe, not the metastases) are designed to knock down as much of the cancer as possible. Surgery is probably deemed to be useless in this case because while removing a chunk of cancer in the prostate, it would not address the metastases and might cause more spread. But his treatment will not be curative, nor will mine. For him it will be a matter of watching the PSA after the chemo and radiation, while continuing the hormone therapy. Eventually, the cancer will become resistant to the hormone treatment, evidenced by a rising PSA, at which point they will add in the enzaludamide or something similar.
At this point, on that regiment (hormone + enzaludamide), my PSA taken every three months is undetectable. This could go on for months or years, nobody can tell, but then it will start to rise again, meaning that the cancer has evolved to resist the treatment and is once again growing and spreading. Hopefully, for both of us, this is years from now, and other treatments will have been developed.
One option, for example (as I understand it) is to use the PSMA agent which is used to seek out cancer cells in the PET scans and light them up for the scanner by delivering a small dose of radiation. That agent could instead deliver a larger dose of radiation, or chemo, into the cancer cells to kill them. (Pluvicto is one such treatment.) The problem with this concept is that prostate cancer is a solid tumor, so penetrating its interior with PSMA-delivered killers is problematic. (The method works much better with liquid-borne cancers like leukemia.) Beyond this, there are other ideas in development or early rollout, like immunotherapy (Provenge).
Gleason score is important for initial treatment, but so it the PSA score, which is probably what brought this to the attention of his doctor. Without question, as his brother, if you have not already done so, you should arrange for a PSA test and followup if the the score is too high for your age. This cancer can definitely be inherited and run in families. Don't wait.
The good news is that regardless of what stage one is at, this is a pretty slow growing cancer. If you had to choose your cancer, pick this one. I've been dealing with it for 25 years and plan to keep it at bay long enough for something else to kill me first; your brother can realistically expect to do the same.
posted by beagle at 7:26 AM on June 30 [17 favorites]
Sorry, to late for the edit window, only if you have a prostate yourself should you get a PSA test, of course. This would apply generally to any close relatives.
posted by beagle at 7:43 AM on June 30 [2 favorites]
posted by beagle at 7:43 AM on June 30 [2 favorites]
UCTV Series on Prostate Cancer. This link is from the University of California Osher Mini Medical School for the Public. I gave you a links specific to their recent lectures on prostate cancer treatment. The lectures are from top notch health care providers with reliable information. The lectures are about an hour long, and targeted to a lay audience. You may find some helpful answers to your concerns.
posted by effluvia at 7:45 AM on June 30 [2 favorites]
posted by effluvia at 7:45 AM on June 30 [2 favorites]
Prognosis for prostate cancer is very god and doctors are fairly aggressive or develop bias in diagnosing things like lymph node cancer.. I’ve had two friends who were aggressively diagnosed I’m assuming under the presumption once there has been cancer detected treatment is aggressive obviously. Both had benign tumors nor some other related condition. I’ve had friends who this wasn’t the case.
posted by geoff. at 8:38 AM on June 30 [1 favorite]
posted by geoff. at 8:38 AM on June 30 [1 favorite]
I want to back up what beagle noted: if you or any other sibling are a person with a prostate, this is a good cue to make contact with a urologist and get PSA levels checked. I'm a solid decade younger than your brother and a close family member's recent prostate cancer diagnosis was enough for mine to decide it was time to begin screening.
posted by pullayup at 1:24 PM on June 30 [1 favorite]
posted by pullayup at 1:24 PM on June 30 [1 favorite]
Simply as an anecdote, this is very similar to the course of treatment an immediate family member recently went through. It was all straightforward and treatment fully resolved the cancer.
He's glass half full and I'm glass half empty.
No one would describe me as a pessimist. That said, as a man, I assume prostate cancer is a guaranteed thiing, and the question is simply when it will happen.
posted by NotMyselfRightNow at 1:37 PM on June 30 [1 favorite]
He's glass half full and I'm glass half empty.
No one would describe me as a pessimist. That said, as a man, I assume prostate cancer is a guaranteed thiing, and the question is simply when it will happen.
posted by NotMyselfRightNow at 1:37 PM on June 30 [1 favorite]
My father had prostate cancer maybe 5 years ago. I did a bit of googling at the time, and from what I read, the survival rate for prostate cancer is close to 100%. Basically, assuming you have good treatment, you're good as long as it doesn't spread. There was never anything said about stages and my dad is still alive and well and cancer-free at nearly 86.
posted by orange swan at 3:44 PM on July 2
posted by orange swan at 3:44 PM on July 2
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posted by lalochezia at 6:26 AM on June 30 [1 favorite]