In August, my husband was diagnosed with prostate cancer (Gleason 8; PSA 22). In October, he was started on Lupron shots and then bicalutamide. The plan is to have radiation, but it has not yet been started because he had to have two other unrelated surgeries first. One of the surgeries was to remove a large mass from his colon, and they are waiting for that to completely heal before scheduling the radiation.
Since August, he has not had a PSA check. This seems strange to me, as I thought they would want to monitor that, at least occasionally, just to make sure nothing unexpected is happening.
His urologist has been totally uninterested in his case since they made the decision not to have surgery, and the radiation people only care about radiation, so I feel like no one is looking at the overall picture. He had to ask the urologist for Lupron and bicalutamide.
Is it usual not to check PSA during treatment? Would it make a difference that we are having to wait over 7 months for radiation?
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BattleMountain
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Light a fire under the radiologists to get things moving faster. And perhaps feel a bit less nervous about what might or might not be happening (that's for me).
Really, all I want to know is if it is normal not to check PSA during hormone treatment or not. As I said, I don't think the urologist is paying any attention, and probably has not realized that radiation has not been started. I want to know what is normal and expected, and if the long delay makes any difference.
At his last Lupron shot, the nurse asked if he'd had his PSA checked recently. This makes me think she expected that it should have been.
Tell Him or Her to take his PSA.... Tell Him or Her.... you use those numbers to play the lotto..... and then Battle the sucker like there's a Mountain sitting on top of him/her.
The reason they wear white coats is so the blood will show once you punch them in the face.... what turds...........
I started with 1-month Firmagon shots at my Urologist office prior to my IGRT. I did 4-months worth and we did a blood test including PSA every month. It didn't change my treatment plan but it was comforting to see my PSA steadily going down prior to the RT. Plus it gave me a baseline of where I was before RT.
This is just neoadjuvant use before primary radiation. It's not unreasonable to stretch it out for healing from his unrelated surgeries. If the OP is anxious, she should get a PSA check to relieve her anxiety, but there is really no reason to do so.
For what it’s worth, my husband was diagnosed with stage 4 PC last July, and he has had multiple PSA tests (plus several CAT and bone scans) since then. It sounds like you don’t have a medical oncologist to coordinate your husband’s care; if so, you need one.
If I was in your shoes (which I guess I am), I’d research major PC treatment facilities in your state and make an appointment with one (or more) ASAP. Fortunately, we live in a major metropolitan area with an abundance of options; you may need to travel to get optimum care for your husband. You should also be aware that there are different options for radiation treatment. My husband has had three Cyberknife sessions, to be followed by five weeks of daily (M-F) IMRT. It’s important to check with your insurance re coverage. Radiation can be quite expensive.
It may sound trite, but I like your spunk. You have to be an advocate for your husband. If that offends some doctors, that’s too damn bad. There are a bunch of online resources that you can use in your research. This is the best online site that I’ve found for practical real world advice. Good luck.
Where is your Medical Oncologist? I've seen mine every three months since I had surgery to remove my prostate. He or she will schedule PSA testing for every visit. Since your husband isn't having surgery, perhaps you don't have an MO yet? If not, that's unfortunate. They can explain your options better than a urologist or radiation oncologist.
Your husband's colon surgery is what's dictating the timing of his radiation. Lighting a fire under the Radiation Oncologist isn't going to speed up the process. Three months of Lupron with Bicalutamide is what I had before radiation. I expect that's pretty standard. If the RO is running the show, he may order a PSA just before starting radiation to get a baseline to compare against after radiation.
One more thing, all along the way nobody will feel the same sense of urgency that you will.
You were not clear. Are you seeing a Radiation Oncologist who specislizes in Prostate Cancer! Your Urologist has done his job, move on. At some point, your Radiation Oncologist should be able to refer you to a Meducsk Oncologist who again, only specializes in prostate cancer.
In answer to your question, I can only give you my experiences. Yes, we tracked PSA and T prior to primary treatment; however, during radiation there was no need. Ninety days after radiation, I had a
PSA and T on a monthly schedule.
With this said, with a Gleason 8 and a PSA of 22, I would be concerned about micro-metastasis eventually spreading, so I would add chemotherapy along with the Lupron and still have primary treatment like radiation - seeds and external. A lot of people will call this overkill, however, it was successful for me and should be considered. Not exactly standard of care, but, kill as many of the little bastards as you can. It’s his life and his body.
Final point, I found my people specializing in treatment of prostate cancer, not in the community at large, but sought out researchers in academia at a major medical school. Hopefully you live near one of the many fine schools of medicine. What I did may or may not be practical and economically feasible. Unfortunately, this approach may not be available......
My Doctor checks my PSA monthly along with a multitude of other related numbers Calcium, ALT, etc. If the doctor is not a specialist in Prostate Cancer and you are not happy with his treatments then move on. Leo
We were just notified that my husband's "elective" surgery, scheduled for tomorrow, was cancelled due to COVID-19. This was the second sigmoidoscopy he would have had since he had the rectal mass was removed; the first, in January, showed him not 100% healed. Prior to the January sigmoidoscopy, he was scheduled for radiation in February. The radiation docs will not proceed until the gastro says the colon healing is complete.
Now, who knows how long his radiation treatment will be delayed. Could be months.
Update: we got it rescheduled at another hospital for later this week. Hopefully they won't cancel...
Regarding a Medical Oncologist, we had thought he didn't need one since chemo is not in the picture at the moment. As far as they can tell from the numerous scans they did, there is no spread beyond the prostate/seminal vesicles. Our understanding is that the Lupron/bicalutamide treatment was supposed to be done by the urologist.
The Radiation docs are specialists from Stanford Hospital, and they are prostate specialists.
We will ask about a referral to a prostate medical oncologist.
Thanks, everyone, for your responses and information. I truly appreciate having a community to support us.
First let me say that your husband will do well with radiation. My PCA was Gleason 9, 21psa, and I ws on Casodex for a month before radiation was scheduled.
Rad started a month after Lupron, monthly, was started. Every three months my psa was tested.
On Lupron/Eligard for 24 months.
18 months later my psa rose 3.8 and my Radiation Oncologist, specializes in PCA, had me see an oncologist. She said I was doing well based on bone scan and ct scan. But to restare hormone therapy. This time was casodex and proscar.
I asked my urologist about psa screening and he said not necessary to schedule as i was fine.
However I say another urologist that specializes in the sexual part of PCA he ordered psa tests three months or as often as I choose.
Well my psa doubled to 1.2 in three months. I was scheduled for an Axum PET Scan and a node was found that they want to biopsy.
Anyway without psa testing every three months or more often I would now be in worse shape. My Rad Onco keeps track of me and reads all my doctor visit notes. All of them!
Last I saw her she asked about my knee replacement so I know she does. And after my recen special scan she scheduled a meetign with me for the week later.
Be a questioning partner and have your husband ask questions. Take notes and ask for reasons and statistics.
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