Husband Newly Diagnosed
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Toto, we aren’t in Kansas anymore.
Hello to All. I accompanied my husband to his t3 MRI last week because he thought the process might trigger anxiety/claustrophobia. He told them he wanted to take lorazepam or something similar and that he would bring a driver. The scheduler stressed that he must bring the prescription bottle with him and take the med in front of them. Ok, that was a little different but he complied.
We got to campus and entered a building that had the words “translational research” in its name. It was unlike other medical services buildings I’ve been in before; a soaring lobby with a tiny sign pointing towards MRI check-in. We saw no one else in the lobby or waiting room. After he was escorted to the MRI area, I thought I’d give the receptionist our insurance card and check on any co-pays. I was puzzled when the receptionist told me “The Foundation covers the cost.” She saw I was confused and asked “Your husband signed a consent, right?” As far as we know, he hasnt signed anything special.
Long story short, would translational research translate to clinical trials for cancer? We clearly weren’t in a traditional medical setting. The process and protocol for the pelvic MRI took 3 hours. My spouse is kind of oblivious to details so he had no answers for many of my questions, other than the thing that compressed his abs was uncomfortable. This post isn’t strictly curiosity on my part. We do see the MO on Thursday and the Radiation oncologist on Monday. I know a lot is churning in Paul’s head but outwardly, PCa doesn’t seem to exist in his life. I’m concerned that a proposal that he participate in a clinical trial might meet with resistance. He’s already said he may just let his original urologist treat him with ADT so that he wouldn’t be driving ”all over the county” in his already busy life. That leads me to think he still doesn’t understand what Stage 4 PCa means.
I’ve told him stories that you’ve all shared of traveling great distances to get the latest and greatest care. I don’t want him to dismiss any clinical study participation based solely on an 80 mile round trip drive. I guess I’m thinking of suggesting the possibility of a study to him just so the idea starts processing. It truly felt like we were entering new territory walking into a translational research building. Maybe my imagination running away on me? Any suggested trials based on Gleason 10, local mets (unless the MRI showed something other scans didn’t) and newly on Casodex and getting first Lupron in2 days? You can tell me I’m overthinking things-not a new thing for me. Thanks, Mary
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Not to be crass
But someone needs to impress upon your husband the seriousness of his condition. An 80 mile round trip is nothing compared with the prospect on a one way trip from which no one returns.
As to the three hours the MRI took, this was about the same amount of time I was in the MRI facility in order to change, start the IV, etc and conduct the actual MRI.
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Correct, Hopefulhopeful and optimistic said:PET scan
Patients with metallic implants, prostheses, pacemakers, or other devices can safely undergo a whole bodyPET scan . These devices are not a contraindication to performing the exam.
There are various PET scans available,
Probably the best is the psma 68 pet scan. There are various clinical trials. I know that UCLA has an on going one.
Here is a PET scan that is also very good, that costs about 2500 to 3000,cash pay that is in Phoenix, AZ. It's an acetate 11. Many men that I attend support groups with me go there for a PET. ( I think that dr alemeda may also do the psma68)
Anyway look into a PET scan. Speak with the medical oncologist.
......................
In your pic, I see an attractive woman in a shinny car. Tell us men more about the car. (lol)
I have a great deal of prosthetic metal in my body, following being crushed in an auto crash decades ago (the car that I was ejected from rolled over me): A rod fills my femur, from the hip socket to the knee. Transverse screws just above knee hold the rod in place. I have extensive surgical wire wrapped many times around the top of the femur, used to hold a splintered mess together until it healed.
I have never had any issues with receiving a PET or CT, regardless of contrasting agents or not. (My scans were for Lymphoma checks, not PCa.) This metal has never been mentioned by any radiaologist, either before or after any set of scans. I have had too many CTs to count, and three PETS that checked from the lower pelvic region (included femoral necks, both legs) to the top of my head.
Also curious: In my work, I routinely go through metal detectors, and am even "wanded" by the best devices. NONE OF THESE have ever detected metal in my body. Getting through an airport is a breeze, never an issue, ever. Federal courthouses, Attorney General's office -- no beeps, ever.
max
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AgreeTech70 said:Not to be crass
But someone needs to impress upon your husband the seriousness of his condition. An 80 mile round trip is nothing compared with the prospect on a one way trip from which no one returns.
As to the three hours the MRI took, this was about the same amount of time I was in the MRI facility in order to change, start the IV, etc and conduct the actual MRI.
Thanks,Tech. I absolutely agree that the drive is well worth it. I’ve had several MRI”s before and none took 3 hours but cancer was never suspected for me. Even though my husband and I have known each other 40 years, I can’t figure out his response to his diagnosis. I have to let it go and simply make myself available to support him in whatever way he needs. Apart from immediate family, he still doesn’t want to tell anyone. Maybe that will change once a treatment plan is fully in place.
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Finally! A Treatment Plan!
Hi, everyone. Just came from consulting with a radiation oncologist at UC-San Diego Moores Cancer Center. He used the good C word - curative! He sees nothing problematic in any of the scans that would preclude EBRT. There’s 2 nodes in right pelvis and one in the left that he will treat along with prostate. When I asked him about staging, he said the term they use is regional PCa but others would call it 4A. He explained that they don't even call it metastatic disease because treatment is curative in a case like my husband’s. While that may all be simply words, it does offer hope in a way that lumping it in with men who have distant metastatic disease doesn’t .
Radiation will start in May after 60 days of ADT. Another note that surprised me is that the RO said in 60 days, ADT will have knocked out 90% of cancer. He explained that radiation is more effective the smaller its target is. Radiation will be 5 days a week for 8 weeks and will likely be curative.
I am happy that many of you recommended going to a cancer center. Everyone at Moores has been terrific and has inspired much confidence in my husband. They can even accommodate an evening schedule for radiation which was a great relief to Paul. He wants to continue to work and the doctors are encouraging him that it’s possible.
Having a plan in place sure feels much better than the past 3 months of worrying and wondering!
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FullMoon, I have beenfullmoon50 said:Finally! A Treatment Plan!
Hi, everyone. Just came from consulting with a radiation oncologist at UC-San Diego Moores Cancer Center. He used the good C word - curative! He sees nothing problematic in any of the scans that would preclude EBRT. There’s 2 nodes in right pelvis and one in the left that he will treat along with prostate. When I asked him about staging, he said the term they use is regional PCa but others would call it 4A. He explained that they don't even call it metastatic disease because treatment is curative in a case like my husband’s. While that may all be simply words, it does offer hope in a way that lumping it in with men who have distant metastatic disease doesn’t .
Radiation will start in May after 60 days of ADT. Another note that surprised me is that the RO said in 60 days, ADT will have knocked out 90% of cancer. He explained that radiation is more effective the smaller its target is. Radiation will be 5 days a week for 8 weeks and will likely be curative.
I am happy that many of you recommended going to a cancer center. Everyone at Moores has been terrific and has inspired much confidence in my husband. They can even accommodate an evening schedule for radiation which was a great relief to Paul. He wants to continue to work and the doctors are encouraging him that it’s possible.
Having a plan in place sure feels much better than the past 3 months of worrying and wondering!
FullMoon, I have been following your posts, as my husband also has a recent Prostate Cancer Dx. I am glad you now have a treatment plan in place. My husband just started week two of EBRT. I have not found much discussion on this board for those who have radiation instead of surgery. However, we have already met a few fellows in the radiation oncology waiting room who are going thru the same thing. Every day for 8 weeks sounds so daunting, but we are treating it as our job.
Best wishes to you both as you move forward with this. You are in my thoughts. MrsBerry
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A sound protocol
This is a sound protocol. ADT will help the prime RT in assuring a better outcome. Surely it will cause symptoms and your husband needs to know what to expect and how to counter the effects. Fatigue and mood swings are typical at the beginning followed by sort of menopause symptoms due to hypogonadism. The radiation will later increase the effects but these will subside in time.
In my RT I was advised to drink 500ml of water 1 or 2 hours before the procedure in the intent of avoiding collateral damage. I hope that doctors do not try reducing the field of irradiation solo based on the image studies or guessed in their experiences as later one may not have another chance to radiate at the same place.
I believe that your husband is now less resistant to your opinions and more reliable to your advices. If it was me I would get a testosterone blood test before starting ADT to serve as base data (important in future developments)' and a DEXA scan to verify bone health.
Best wishes for a smooth treatment with fantastic outcomes.
VG
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