Gleason 8 PSA 5
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Thanks for all of your information hunter49 - your responses really help keep me from totally freaking out about my situation.
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My PSA had jumped from 3, then 4 then 7 over about a year. I had just about every possible scan and text there was and was clean as a whistle everywhere except the prostate. Lymph nodes, etc all clean. However, my Gleason was 4+5. I met with 4 doctors at Brigham & Women's over a period of 2 days, all pitching their "speciality".
I elected to have my prostate removed at Brigham & Women's via via robot... but had to start with Orgovyx hormonal therapy 2 months prior to the surgery.
After the surgery, the surgeon said there was "focal cancer" meaning he thought he "saw" that some cancer "could" have gotten out of the prostate and said "Let's wait and see. My PSA was .04 at that point.
Well, about 6 months later my prostate started to rise again (.09) even while still on Orgovyx, so the Doctors wanted to get a jump on treatment.
I just finished 2 months at Brigham & Women's for 40 treatments of radiation on both the spot where my prostate was removed and lymph nodes. My PSA is now <.02. Getting bloodwork every 3 months for the next year, followed by every 6 months for the 2nd year and finally annually for the next 3 years. I guess time will tell...
I was SO FORTUNATE to have been able to stay at the Hope Lodge which was only .5 miles from the hospital. I can not even THINK of going ANYWHERE ELSE for my treatment. Brigham & Women's Hospital and ALL of their Doctors and Techs are just OUTSTANDING! They were on top of EVERYTHING!
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Received some good news - insurance Ok'd the PET scan and is now scheduled in six days. Lot better than waiting for six weeks!
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I don’t think PSA doesn’t mean too much in terms of stage or metastasis. It’s basically an indicator that something is probably going on. The 4+4 is of more concern but even that doesn’t tell you anything regarding leaving the prostate. An MRI will help but a PSMA scan is the one that highlights any metastasis. I have one core 4+3 with PSA 12. Doubled from 6 in past 11 months. One Lymph node also so mine has left the barn. I see oncologist this Wednesday.
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It turns out I have a situation somewhat similar to yours oldspice - I just met with my oncologist today regarding my PET scan and I have one lymph node testing positive with cancer. Please keep me updated with how things are going for you.
My dilemma now is that I am scheduled to meet with the oncologist in two weeks, and then meet with my urologist a couple of days after that - meanwhile, in trying to get a second opinion from MD Anderson, the earliest they can see me is in six to seven weeks. I really would like to hear their opinion on my situation, especially since it seems my urologist is still thinking about doing surgery, and I'm wondering about the feasibility of surgery since the cancer has already left the prostate (perhaps since the lymph node that has cancer is near the prostate?). My main concern is the cancer is Gleason 8, and I don't know if holding out for six to seven weeks and possibly spreading to other lymph nodes without any treatment is a good idea.
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Terriandralph - I can understand a little delay to get into MD Anderson due to Christmas next week, but 6 to 7 weeks seems a bit long for the first appointment. It only took me slightly more than 2 weeks from first contact to actual appointment at the main campus in Houston's Medical Center back in October. If I recall correctly, I got the firm date during the initial call. Did you get an appointment date? Is there a specific doctor(s) you are trying to meet with that is causing the delay?
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Thanks for your reply DaveTX.
I remember when I first contacted MD Anderson a month ago, they told me the first appointment wouldn't be until mid-January. I started a file when I first called them and have been constantly calling to update them when I undergo a test. After calling them today and explaining the PET scan showed the cancer had spread to a lymph node, I was really hoping with the PET scan results (together with the Gleason score) that I would get an earlier appointment (I realize though that there are lots of other guys beside me who are looking for MD Anderson's help). I do have a firm appointment date with MD Anderson, but even though I didn't request a specific doctor, the earliest appointment I was offered is on February 6th. I'm considering getting a second opinion from Mays Cancer Center, which is an NCI Designated Cancer Center here in San Antonio (they can get me an appointment in three weeks), but it is not MD Anderson.
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First off I would suggest to take a deep breath. Saw both my urologist and oncologist today. I had same concerns as you and questioned them on long delays. My first diagnosis was from an MRI in late August. PSA at the time was 12 from 6 over 1 years time. Todays visit was refreshing in terms of Q&A. Much better than 3-4 months of anxious waiting. It was explained that Prostate type cancer is so slow that if I would not have known I had cancer I would probably live 10 years with no treatment. Told me I probably had the cancer since 2019. Remember however, no 2 people are alike. I am stage 4A cancer but because the lymph node is in the pelvic area they consider it localized and cure rate of 50-75%. That’s cure rate not death rate. Whew! I will post my program soon or I will message you either way but my guess is you are over worrying like myself. Now, I had a PSMA scan which is the newest and revolutionary precise scan. It will pinpoint any prostate cancer specific anywhere in the body including bones. It is different from a PET scan. I live in Ohio and am going to Northern Ohio Cancer Center and am extremely happy I chose this per my urologist. Awesome place, awesome people… so far. I get my first 2 injections tomorrow morning. Stay calm!
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One more thing … I asked why not surgery? They said first off my prostate is too large and when they remove prostate they need to also remove large portion of tissue which in my case would affect rectum area too much. If they removed prostate they would also remove lymph node which would make it even worse because of tissue loss. So much to learn. I am 73 yo but am a young 73. Was told by oncologist I would be treated as though I am a 53 yo… whatever that meant I dunno. They also did not recommend Space OAR for me due to complications it would pose for my situation. Remember no 2 people are perfectly alike. Just sayin
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Thanks for the additional comments oldspice - it seems the more you add the more similarities I have to what you're going through. So exactly what is your treatment going to look like?
Please keep me updated with your progress.
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By the way my visit with doctors was extremely positive. I have a 20 yr history with my Urologist so I completely trust him. The oncologist was equally trustworthy we’ll see.
My plan was promoted as being very effective per my situation. They don’t expect heavy side affects but we’ll see.
Starts with ADT to shut down the cancer. 2 injections of FIRMAGON today and another in one month. My testosterone will drop 85% in 3 days and 95% in 30 days. The second shot will hopefully finish it off. Done with those. One month after that I get an injection of ELIGARD which does same thing but is like a gel and dispels slowly for 3 months. Doctor will reassess at that time. These meds stop the growth by eliminating testosterone. Also at same time lowers PSA and shrinks the prostate. My prostate is large but oncologist says it may shrink to half size, lowers PSA and makes radiation much more manageable. He said 8+ weeks on ADT is good starting point so March 18 is my radiation start date with IMRT. He DID NOT recommend Space OAR for me and his experience is in my case it would maybe help a little but more likely to cause worse issues. He was first doctor to place OAR in Ohio. He said if I want it ok but highly recommended against it. So regardless of what I read I will probably trust the doctor but that’s a ways off so I can research it more. I undergo radiation for 45 straight days no weekends. By mid May I could be done but we’ll see. I am always sceptical with all this crap but I’m no doctor so it’s his knowledge vs mine. By the end of the meeting I felt much better and more confident than ever that I trust the doctors and I /they will overcome this. It’s a bump in the road not a death sentence.
Hope this helps you but remember I’m no doctor and only offer opinions and not much advice. We got this
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Wow thanks for all the details oldspice! Please keep me updated on your progress.
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oldspice,
Hopefully no more headaches, yes? How is everything else coming along?
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Like you all, my mind is racing. Finally today my abdomen feels much better but still hard lumps. But that’s least of my worries. Yesterday was first time feeling odd, blurred vision and some anxiety but went away by PM. Began walking on treadmill but pretty out of shape lately so only 1 mile. Today I go for 2 if I can. I am determined to overcome obstacles as I like to stay busy but winters in Ohio tend to make us get lazy. I have been flooding my brain with information but need to back off at times. Just seems like too much all at once. Best time to learn is when you are on hold waiting for action because once action starts then it’s too late to change course so use that free time to your advantage. My headache lasted one day but today flirting with another. So this is something I’m learning is lots of ups and downs but I’m hoping over time I can figure out the patterns and then the solutions. So far besides all the mental stuff I am doing good. When I chatter please don’t take it as a negative only doing it for your sake but if something major changes I can let you know. Last thing I want to do is to bring you down you have enough on your plate I’m sure. I have begun reading up on alternative natural cancer fighting techniques and find it quite interesting but only just began so nothing to share yet. I appreciate hearing your experiences as well so feel free to share whenever. So how are you doing? Symptoms? Staying calm? Worries?
I do have my next Firmagon injection Jan 22. Hopefully these lumps I have now will disappear so I don’t keep adding on.
Is your wife following this discussion? I don’t mind I just like to know how to address you or both of you.
Doug
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I didn't know you were dealing with all those side effects (hard lumps, blurred vision). Hope that all goes away so you can rest a little easier.
I've been doing my own natural cancer fighting stuff, mostly eating better (cutting out as much sugar and processed foods as possible) and eating stuff I should have in the first place that I read about on the internet (broccoli, berries). I'm also taking some supplements, but I'm not entirely sure it's a good idea - I've read sometimes it can make things worse instead of making things better.
The next two weeks for me are critical - Jan 3rd I see the oncologist (my urologist said I might be in for 6-8 weeks of radiation) and on Jan 5th I see my urologist. I guess at that time my urologist will tell me what he thinks should happen (as I mentioned earlier, he still seems to think surgery is an option, even with the cancerous lymph node in the pelvic area). It makes me wonder why surgery is an option for me and not for you, since it seems our situations are somewhat similar. On Jan 10th I have a second opinion from a urologist at Mays Cancer Center, which is on the NCI Designated Cancer Center list - I'm wondering how much their diagnoses and treatments will differ.
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