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3T MRI/CT /Rehearsal leads to confusion

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Posted 8/17/2016 2:03 AM (GMT 0)
Ok.... Here I am again. It seems that everytime I see my RO here in my town I leave more confused than at ease and feeling like I'm moving forward. One of the problem is ,I'm working with 4 Drs in 2 different towns. As some know I've chosen HT+IMRT+LDRBRT for my treatment. Here's what I learned today.
First I had a3T MRI last Friday. The CT today was for seeing my markers and setting me up for my IMRT. I got my tattoo's......NO one told me the shot at my pubs would hurt so much..OUCH. Then I had a consult with my RO.
Now is when the confusion started. The first thing she said was that the MRI on Fri was good and she was able to see a small spot. Small spot??? So I ask her ,"well how much of the prostate is involved?" Her response was a small spot on the left side towards the middle. What?....more on that later. Now we're talking scheduling as I wanted to get started as I need to schedule other treatments for right after I finish IMRT. (duodenal tumor consult and procedure ,brachy consult and procedure) all before Nov. 1st She wants a urine flow test to make sure my urine issues don't become a severe problem during my Brach therapy. Ok...this is going to take more time. She doesn't seem to get it. So I need to schedule with my local uro for this. I found myself bidding for a quicker start..no more delays. Finally she said she would schedule the start on Aug 30th... 5 weeks puts me at the 4th of Oct. I'm not happy , but my choices here are limited.
She took blood work to see where my PSA and testosterone levels are at. PSA down to .27 Don't know the testosterone level.(does that test take longer?).
Really after explaining all that ....the thing that has me confused is this....is a 3T MRI more accurate then my needle biopsy? (see my signature below) How can she say that she only saw a small spot when I have a biopsy like that. We were out of there before all this hit me ,so I didn't ask her . What test is more accurate?
She did say they will treat the entire prostate and lymph nodes, but surely this did not make sense to me.
I think she is trying to push me to IMRT without the Brachy as she keeps talking about the urinary issues that have gotten much better.....I'll be calling Dr Badiozanomi in Seattle tomorrow for sure. Why can't things just start going just a bit smoother..... Really...I'm not asking to much....Really.... I've just started this whole thing 2 months ago and it really has seemed to be a struggle just to feel like we're moving along..

Again , Thanks Mark

Biopsy:

Left Lat Base Benign Atypical
Left Lat Mid (3+4) G7 60%
Left Apex Benign
Right Lat Base (4+5)G9 30%
Right Lat Mid (4+5) G9 30%
Right Apex (5+4) G9 30%
Does this add up to a small spot? On the left side?
Posted 8/17/2016 5:20 AM (GMT 0)
Mark-
It's always a little more work to coordinate the efforts of 2 doctors. I suggest you have the brachy doc take the lead. Just tell him that you'd like him to coordinate efforts with the IMRT doc.

Mark said...
is a 3T MRI more accurate then my needle biopsy?

An MRI isn't a test for PC -- only the biopsy is. The MRI is only for contouring the radiation for the plan, not for finding cancer - you already had that done. Just ignore what she said -- it's irrelevant to you.

Mark said...
She did say they will treat the entire prostate and lymph nodes, but surely this did not make sense to me.

Why didn't that make sense to you? That's exactly what you signed up for. Then you will have a brachy boost to the prostate. I don't understand why this confuses you.

I'm missing what you find so troubling. It sounds like everything is coming along just fine. It just sounds like you are anxious, and that's very understandable.

- Allen
Posted 8/17/2016 12:38 PM (GMT 0)
Artist Mark sorry for your confusion and I totally get it I could not sleep well for several months until I started the treatments. Once things got started I did feel calmer about it all. You have already decided on your treatment just continue on the path to healing well. Good luck.
Posted 8/17/2016 12:54 PM (GMT 0)
A limitation of MRIs apparently is in their sensitivity; they don't detect small things very well. Rule of thumb has been that if the MRI sees it, it's likely there. I'm extrapolating that a little bit here, but it seems possible that the MRI could under-report things like a tumor's size. Your biopsy cores indicate a fairly significant tumor, but the MRI seeing something smaller isn't necessarily worrisome or conflicting.

A 5+4 case like ours is usually treated by throwing everything at it; if I may encourage you, don't doubt your docs on that one. Tall Allen is right, as usual, that the MRI is really to guide the physicists who will design your treatment plan. My RO showed me the 3D profile of my treatment field, which was pretty cool. That plan fused the 3T MRI data with the planning CT scan data. Vanderbilt, where my work was done, has 3 full-time physicists on staff that develop their treatment plans.

We decided to treat my pelvic lymph nodes too, since there was a nearly 40% chance of them being involved. MRI didn't show them to be involved, but again the MRI is limited in what it sees. Small details are hard for it to pick up. I've had no side effects whatsoever from irradiating the lymph nodes, and it made complete sense to me to do so. G9s are formidable opponents, so aggressive treatment is usually appropriate.

I didn't have any brachytherapy, so can't comment on that.
Posted 8/17/2016 12:54 PM (GMT 0)
Hi Mark. I agree with TA. I didn't read anything different than what I heard throughout my planning.
FYI, Aug 30th is only 13 days away. I had to wait 6 weeks after my HT shot before they could schedule me in to start the RT.

High Risk in a RT plan should (if not mandated by protocal) include the glang, bed, and nodes.


The first tattoo prick surprised the crap outta me too. The other 3 were no problem after the 1st one though.

In my treatment, I had a choice to do the nodes or to participate in a blind trial of nodes or not nodes. I didn't want to play games with it, so I chose to stay away from the trial and do my nodes too.


Dude....sounds like they got it covered.

Posted 8/17/2016 2:39 PM (GMT 0)
It's no different here in E. TN. Mark. I started to give a couple of examples but realized it would just be alot of reading because its all so convoluted. Suffice it to say...anytime you're diagnosed with anything here, you can count on a two to 3 month lag time before your treatments are fully in place under a doctor's care. This includes high blood pressure, DVT, cancer, depression, etc. Frustration galore due to the fact that you're not rich, a friend of a doc, known personality, or a doctor yourself. These are the guys and families that they "work in".

The care between urban areas vs. more sophisticated areas is night and day.

The one exceptiom....heart attack. That gets their attention lol
Posted 8/17/2016 4:03 PM (GMT 0)
Once again you guys have calmed my nerves.

Allen....The second quote you talked about should have said "this ALL doesn't make sense to me" not the part that she will treat the whole prostate.That actually was one of the things she said I felt good about.

For some reason it seems to me this RO is trying to steer me away from the Brachy. Maybe it's just in my head.

I was really worked up yesterday for some reason, but the one question that you answered is that the MRI was for contouring.

Really, I'm trying to coordinate with 6 different DRs as I have a duodenal tumor that needs to be removed at Virginia Mason. I'm trying to get this all coordinated and done by the Oct. 31st as that is when my insurance calendar year runs out. It would save me a huge amount $$$ and the amount of traveling lodging etc.This Dr. doesn't seem to get it. She is dragging this process along.I'm going to have the IRBT. Dr. Bodiozanami wants to do it, I want to do it.

Newton, I've been on HT since June 17th. That's exactly 2 months ago. My RO in Seattle wanted to start IMRT by now . It wouldn't be a big deal, but I have another tumor in my duodenum that needs to be removed in Seattle at V.M. same place as for my IRBT.
I got 3 tattoos and none were pricks they felt like an injection and the 2nd one in the middle hurt like....
Also what did you mean by the word "glang "?. I've never heard that term before. She did say she was going to target the nodes.

Redwing..... I want the triple play. That's the deal.. she seems to be trying to steer me away from IRBT. My local RO doesn't seem to want to show me or explain things to detailed to me. I get the feeling that she really doesn't have time as she needs to get to the next patient. That is the problem with dealing with small town Drs. There are not enough of them and they are over worked.

Easy Ace... Thank you. It really does seem to me this could be moving along faster. I had expectations going in ,and they weren't met so I got frustrated.. Advocating for oneself is difficult because you are trying to keep on top of what the Drs are doing and trying understand and trying to schedule and make sure you don't just become a number lost in the process...I want to make sure they are listening to me ..... and that is hard to do and does not always happen. There is part pushing for what you need and excepting what you are getting.. that's the hard part.

Island Time. you are exactly correct my friend. I'm glad you understand what it is like to live in the sticks.....that's the very reason I try to have all my major stuff done in Seattle...375 miles away!

Now I'm going to get on the phone and start to try to coordinate all these appointments...

Thank you all for your input. It is greatly appreciated, Mark
Posted 8/17/2016 4:40 PM (GMT 0)
Sounds like you got it covered. I wish you luck with you treatments and schedule. It can be a pain but it will all work out in the end. Squeaky wheel gets the grease when you are on the phone pushing for a quicker appointment. Take care. -JR
Posted 8/17/2016 4:51 PM (GMT 0)
Oops....sorry Mark. I meant to type "gland".
Posted 8/17/2016 5:33 PM (GMT 0)
Hey Mark...although I had my brachy before my IMRT, I found that all the IMRT techs kept questioning me about why I also had brachy. I was often asked "did you think about just doing IMRT?" Mind you these were the radiation techs, not the RO. But sometimes I wonder if everyone just thinks their own tech is best. I think Allen's solution about having the brachy doc take the lead is a good one.

My IMRT was to the prostate and the lymph nodes. I'm pretty sure that's typical for high risk guys.

Regarding PSA and T, my lab would always call me right away with my PSA result. I would either have to ask them about my T level or it would just show up in the mail a week later. I think they're more focused on PSA. If your PSA is now that low, I'd bet that your T level is <20, which is what you need.

Too bad about racing the clock, but hoping that all works out for you.
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