HealingWell
Search Close Search
☰

Slides from John's Hopkins

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/31/2020 8:13 PM (GMT 0)
Glen, AARP United Health Care Medicare Advantage is likely to cover most all of the standard treatments with minimal out of pocket to you. Main point is to make sure your providers are in network. BTW, while you are seeing specialists for opinions this summer your co-pays are zero. One of the few pandemic perks...

Jim
Posted 5/31/2020 8:18 PM (GMT 0)
Swan: There are happy pills for those of us who do not fit well into a tube made for mermaids! My CTs were only about lower chest deep and were not much of a concern. I am a Brachy guy with just about the same MO as you and never regret my choice for a single second. Morning BT followed by some afternoon discomfort that I was able to walk off. Walking a mile the next day. Only SE now is very low on the sauce output. Hope everything goes well for you and keep us posted.
Posted 5/31/2020 9:42 PM (GMT 0)
Thank you Jim and Thank you browntrout

Browntrout I guess is the lake variety? I used to fish quite a bit and enjoyed sea fishing for Blues and flounder, blacks etc but since I live near the Hudson River, I found I really enjoyed catch and release of huge carp. The give quite a fight especially the younger one's.
My happy pill that worked was lorazapam I found it much better then the diazapam (Valium) I do not take any sedative lightly but for an emergency like a scan, I'm okay with them but they can be very addicting.
By the way, "no descrete nodules" mean that the doctor does not feel anything on the DRE? My urologist said my prostate felt normal which I'm sure is a good thing.

Glen
Posted 5/31/2020 11:42 PM (GMT 0)
Swan: No hard lumps on the DRE is a great thing and one less to worry about. My friend, you are doing a great job of researching and talking to the right people. The folks on this site pulled a lot of us off the worry cliff. Worry and deciding on procedure are most of the battle. You sound like you have a great grip on the battle plan. We are all pulling for you and here for you when needed.

And yes, Brown trout do reside in lakes, streams, and can be of the sea run variety. In any case a wonderful creature to behold. Some of them are even dumb enough to take my ugly looking flies!
Posted 5/31/2020 11:49 PM (GMT 0)
Thank you browntrout

I was lost until I came here. Yes maybe I'd have researched as I always do but the response here was immediate, accurate and ongoing and I am grateful for this forum.

You are a true fisherman. I deal with doughbait, worms, crabs and shinners-Do not have the patience for flies. Good for you!

Glen
Posted 6/1/2020 3:35 PM (GMT 0)
Dr Duestch called me and said he need imaging from the MRI before he can do the brachy. He is going to talk to the MRI department about possible ways to get it done. He wants to avoid intubation because of possible complications and I said what about a CPAP that is not reactive to the magnets in the MRI or perhaps one with a long tubing.
I still have my machine but do not use it because of my claustrophbia but it is part metal and I think has iron or steel in it.

I just hope they do not try the same route as last time. I cannot deal with waking up in that tube again.

I do not know why he cannot image me just before the procedure but I guess he has his reasons. At least he seems to want to do the brachy.

Worry is setting in again but I'll try and relax

Glen
Posted 6/6/2020 2:13 AM (GMT 0)
Have not heard back yet so I'm thinking maybe the CPAP or just some form of positive air pressure device may work. I'll insist they knock me out and see how I respond before putting me into the tube. If my breathing is okay then they can proceed with the MRI-I just do not want to be on my back and conscious for long because it hurts so bad to be on my back.

With computers today and dyes etc I wonder if maybe a CT scan can work as well or do I have to have an MRI?

In any case I hope to hear from them-maybe regular radiation may work out better?

Glen
Posted 6/7/2020 7:17 AM (GMT 0)
Glen,

I'm not sure where you are located but I know there are open 3T MRI machines. Perhaps this would help you through the process.

Good Luck!
Posted 6/7/2020 12:48 PM (GMT 0)
Thanks yes there are a few. I live in Manhattan. I forgot to ask the doctor but that was on my mind.
He may want to use the Columbia university hospital MRI for the degree of resolution he wants
I think I can handle a standing MRI along with a mild sedative like lorazepam

My urinary issues are a little worrisome as my stream seems very weak..I should say weaker than usual.

I have stopped TRT which will lower my testosterone by a lot so that may help

Glen
Posted 6/16/2020 12:02 PM (GMT 0)
I still have not heard from the doctor. I'll leave a message today.
The last biopsy was in November so I really am concerned about growth of the cancer. I will leave a message today about open MRI but I heard the images may not be as clear.
I asked and got an increase in my Flomax. I Am back to two a day. I went down to one a day after he started Cialis 5mg.
My urine flow is weak and always has been with my BPH but seems a little weaker
I do not see a problem with using cpap. I'm sure it has been used before in MRI as I checked the internet.

Glen
Posted 6/16/2020 3:40 PM (GMT 0)
I'm not sure you need to worry about your sleep apnea. I have severe apnea and have been using CPAP since 2003. Three weeks ago I had a two-hour procedure under general anesthesia. The anesthesiologist said there were no concerns about the apnea, because they would be controlling my breathing and oxygen levels. And I don't think there's any chance they would let you bring your CPAP machine into the surgery theater. I think you can stop worrying about the apnea issue. As for CPAP therapy while in an MRI tube, I would be very surprised, but if you find out there's a way to do that, please share it. At the least, they should be able to prop your head up a bit, or tilt it back, whichever improves your airway.

Post Edited (clocknut) : 6/16/2020 9:46:01 AM (GMT-6)

Posted 6/16/2020 4:37 PM (GMT 0)
Thanks. My last MRI was done with profolol and I was asleep however since I was on my back,my tongue fell back and I stopped breathing. So they stopped the profolol drug while I was in the tube.I freaked out and still dread it. I left a message with the doctor and await what will happen. I had hip surgery and stayed asleep through most of it but did wake up once and almost broke the operating table. No pain because I had a nerve block.
Look, it's a major teaching hospital and they must have a way to force air into an MRI room patient
Glen
Posted 6/16/2020 4:40 PM (GMT 0)
BTW I have read of sleep apnea patients using positive air flow during MRI
It was brain scans where the patient must remain still

Glen Heinsohn
Posted 6/16/2020 4:47 PM (GMT 0)
Those MRI's can get claustrophobic. I used to have it much worse. After (what seems like) several hundred MRI's...one coping technique stands out that I used for the first few ones.

If you ask them, they will probably let you lie with your arms and hands, not by your side but, laying back over your head. (your hands will be mostly outside of the machine in that position).

Claustrophobia (or really a lot of phobias) is an irrational fear of being out of control.

With your hands arms straight out (as if your are reaching for the ceiling, only you are laying down in that same position)…...you are in 100% control as to whether you get out of that thing or not. You do not have to rely on others to get you out. Just grab hold of the end of the tube (where your hands will be in this position)…..and pull yourself out of that darn tube yourself on your own. Presto.....you're out.

This will not eliminate the feelings. It has proven useful with me in successfully coping with them

There's other techniques. But, you are in total, 100% control and without reliance on others on whether or not you can get out of that machine on your own.

Laying inside one with your arms down by your side makes things a bit tougher. That's how the techs usually think of laying in one...so many do not even tell you that there's another way of laying that works just as well. And that's with your arms above your head instead of at your side.

Post Edited (island time) : 6/16/2020 10:52:18 AM (GMT-6)

Posted 6/16/2020 5:44 PM (GMT 0)
Thank you however I must be fully sedated. I have PTSD from a couple of horrible incidents at rhe state psychiatric hospital I worked at. Two bad fires one where I ran into a burning room to save a patient and one fire where one patient set another on fire. Last one was a restraint of a violent patient who ended up dead in my arm's.
I developed severe claustrophobia and can not do a simple Ct scan without sedation

Glen
Posted 6/16/2020 11:59 PM (GMT 0)
I too, have issues with the MRI but I covered my eyes with a sleep mask and had an Adavan. Made it through the 2nd time as long as the tech wasn't telling me how much time was left (for some reason, it bothers me). Additional issue for me was just anxiety and the very loud noises the machine makes.

You could ask to be given a test run with the radiation machine - I didn't have any issues as I was only in it for 2 minutes and could see out the tube (not all the way in). I focused on staying very still and made the 7 1/2 weeks without any issues.

Best of luck which ever option you choose. Columbia is a great institution - all of my Drs in NJ went there, Cornell or Harvard Medical school.
Posted 6/17/2020 12:39 AM (GMT 0)
Yes thanks Dr Deutch has good reviews and seems a decent guy si I'm in good hands

Glen
Posted 6/17/2020 1:11 PM (GMT 0)
My cancer treatment cost about 154K supposedly...tomotherapy ...Lupron..all was covered with the same insurance as you have ....just out of pocket $6700 back in 2016.....its a lower deductable now. and they can`t take your home as far as I know....good luck....
Posted 6/17/2020 1:30 PM (GMT 0)
Okay Thanks

I do not own a home and have.a modest fixed income. I pay when I can and apply for aid in some cases. My medical bill's also are used to help with my rent so I do okay and pay a very modest rent. If I had to my family would help. It is not too much of a concern
Glen
Posted 6/17/2020 1:37 PM (GMT 0)
My wife has rent stabilized apartment 40 years that "went condo" and was given a much bigger apartment with modest rent plus cash. Kinda hit the jackpot so I helped her invest some and she is doing well. If I really needed money she would help.

Left message but await a reply. I'm going to pull out my CPAP and see if I can tolerate it

Glen
Posted 6/20/2020 2:20 PM (GMT 0)
Glen,

I am not advocating for any particular treatment, but I can share a couple of bits of my own experience.

I am not "MRI-Compliant." I cannot have any sort of MRI because I have a cardiac pacemaker and it is not MRI-compliant. Thus, no prostate MRI for planning. I had SBRT, which was done with just the conventional CT scan, which was done in an "open" machine. I'm sure you would be fine in one of those.

For my five SBRT treatments, the machine is again a fully open machine. I joked and described it as "laying on a high bed with a thin mattress, while a large mechanical dog sniffs all around me." The tech staff got a kick out of that description, but it really was a great big non-issue. So, as Tudpock mentioned, SBRT could work for you. It typically does not have the cautions about treating extra-large prostates, either. The radiation pattern of SBRT is copied after that of brachytherapy, to the efficacy is high as well.

Do your research on the question of T supplementation. If you stop your injections and your T goes to 50, you will just be miserable. Why do that? Unless your pathology would ordinarily convey ADT as standard of care, there is simply no medical reason to withhold T at this time. With one single core at 3+4, you are not in a category where ADT is standard of care. I would see no reason to fear continuation of T supplementation, as long as you keep your levels within the normal range. If your doc disagrees, I would fire him (I did fire one of mine for that). Don't forget Dr. Morgentaler's Saturation Theory, which states that unless your T is below castrate levels, the PCa cells will have all the T they need to grow, so why deny the patient a the QOL benefits of a normal hormone level? He also agreed with me in my assertion that my PCa cells could not tell the difference between T made in my body and T that I bought at the corner pharmacy. As long as you are in the low or favorable intermediate risk categories, you still have the option to live a relatively normal life.
Posted 6/20/2020 4:19 PM (GMT 0)
Thank you Paxton

I have been thinking along those same lines. First, my wife has an implant that makes MRI impossible so I was thinking, there has to be others that cannot have an MRI and if so, how do they treat them?
Second, I am becoming more open to SBRT because I may be able to deal with that amount of confinement or take a valium if need be.
As far as testosterone, of course I want to continue it even if both doctors are against it. I do not think they fully understand the degree of misery having low T feels like. I use TRT because my body does not make testosterone or makes a very, very low amount. I am partly to blame because of my chronic pain. I've used opioid and opiate medication since 1990 off and on and it has messed caused OPIAD or opioid induced androgen deficiency
I use TRT to feel normal, not to body build or get a "buzz" Monday I get my levels checked and if in two weeks my PSA is okay which for me is a 5 or even as high as 6 I may continue TRT but if it has spiked, then I may stop for at least the duration of treatment.
In any case if the PSA is very high, the TRT doctor will withhold treatment until I see a urologist. That may force my hand but once it was a little high and I told them it was due to BPH
So yes, I have to fudge the truth with the TRT clinic because while I do not know 100% that they would stop TRT if they knew about the cancer, I do not want to take a chance. I have a very large prostate and always have had a higher then range PSA and have had spikes in the past when I had UTI's which were an almost monthly thing. (Doctor knocked out the UTI with a month of Cipro)

Glen
Posted 6/20/2020 4:24 PM (GMT 0)
Oh, by the way, I will be injected Monday with testosterone but they will draw blood for T levels, PSA and hormones and if my PSA is too high they may tell me to go to a urologist.

So in two weeks I'll schlep out to Staten Island and get or not get another injection and take it from there.
My TRT doctor has papers that show testosterone helps fight against Covid-19 so maybe it is not a good time to quit

Glen
Posted 6/26/2020 6:44 PM (GMT 0)
Update
Got 400mg testosterone injection. I would prefer a 200mg weekly basis but the clinic insisted on bi weekly
Anyway they took blood and I'll know my numbers next Monday. I am most interested in PSA but in the past my red blood count went up as well as estradiol. They may stop TRT until I get those issues resolved if they are too high. Keep my fingers crossed for a decent PSA especially. Decent for me is 6 or under because of large prostate. 4.6cm to 6cm in size (I think)

I left message and office staff said still working on the MRI

I will suggest we talk about SBRT. Maybe it will work for me. I am stressed thinking all this time the tumor cells may be growing.

Hopefully will be swimming in the Hudson river soon. The beach in Kingston is open. Kingston is 30 miles North of my upstate New York place.

Thanks

Glen Heinsohn
Posted 6/26/2020 6:49 PM (GMT 0)
Btw
Wife takes subway to Coney island to swim but I need a chair and cooler so taking the car up to Kingston works for me.
Not sure what this has to do with any Pca issue but gotta do something to keep my mind off my medical problems.

Glen
✚ New Topic ✚ Reply
123