SPECT scan horror: I had a SPECT scan... - Advanced Prostate...

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SPECT scan horror

spencoid2 profile image
43 Replies

I had a SPECT scan after first does of Pluvicto. I had no idea how horrible a scan could be. There are things that project out to get as close to you as possible. I have had many CT scans MRIs PET scans but this is different. I do have a bit of claustrophobia but never felt this horrible before. They wrap you in heavy plastic shit to make sure you don't move and then stick you in a tunnel with plastic projections almost touching your face. If the scan fails due to some minor technical error they have to repeat it. The plastic thing hit my foot right at the end of the scan which required repeating it. I had the 30 minute scan done three times and was really freaking out. I also have painful bone mets in my shoulder and arm and I could not move for about 1.5 hours. Also had to pee radioactive pee very badly but had to stay still until the spect scan and the follow up CT scan were finished. I would have prepared by getting stoned or asking for valium. If I had any idea how awful it could be. Had a biopsy the day before with drilling into my bones with what looked like a harbor freight drill and that was not a problem at all.

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43 Replies
Schwah profile image
Schwah

I never heard of a SPECT scan. What is is it?

louschu profile image
louschu in reply toSchwah

Grear 3d scan. I think an MRI is worse if that's any consolation

Tall_Allen profile image
Tall_Allen

Kudos for them doing it -most don't. It's a 3D gamma ray camera. It shows where the 177Lu attached. Unlike positrons from PET scans, the gamma rays from 177Lu are very short range. Did it attach to allyour metastases?

JohnInTheMiddle profile image
JohnInTheMiddle in reply toTall_Allen

So the fact that they had to redo it several times did not increase the radiation dose? Yes? The radiation is coming from the 177Lu that is attached to the ligand or something? So you're not getting more radiation when they have to redo it? Also if you have AR negative evolved prostate cancer, then the SPECT scan won't be any help?

Tall_Allen profile image
Tall_Allen in reply toJohnInTheMiddle

They do not add any radioactive indicators. The Lu177 you've already had is "thernostic'= both therapeutic (because it emits beta rays) and diagnostic (because it emilts gamma rays). AR negative doesn't matter (although PCa is rarely AR negative), so much as PSMA avidity.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toTall_Allen

Thanks! And the scanner that goes back and forth on the body is just detecting the radiation emitted by the Lu177? It's not like they are x-raying you again and again when they redo it...?

Tall_Allen profile image
Tall_Allen in reply toJohnInTheMiddle

Well, if it is a combined SPECT/CT the CT part of it uses low-dose X-rays. But I don't know that the CT part was redone. The report always gives the X-ray exposure. Usually it is minimal.

spencoid2 profile image
spencoid2 in reply toTall_Allen

yes it was SPECT/CT and they did repeat the CT each time they did a new SPECT that went to completion ibt I sort of remember that they did the CT twice even though the first two SPECTs failed. they need the CT to align the SPECT with your body features so if you move after the CT it is no longer good for another SPECT they did the CT after but i sort of remember that they did not know that the SPECT was bad until after doing the CT or at least I remember it that way. It is a really fast CT just to get basic body image detail is not needed. The CT part took 30 seconds or so.

The SPECT failed when a sensor touched my boot which was at the very end of the scan. They should be able to accept a partial scan when just a tin y part might have been missing but they care more about a perfect scan than the patient. This sort of thing is not tailored to the individual and they do not have the ability to override anything. At least they could have me put my hands under my butt instead of the straight jacket. I would hope that the part of the control system that moves the sensors retracts if it fails and touches the patient. But I could still not keep thinking that it could trap me and that with my arms bound i would not be able to get out They probably thought of all this and if the power goes off or anything the sensors probably retract under spring control? next time i will be prepared and will bring my Houdini escape kit. I wonder if cannabis reduces claustrophobia or increases it. Valium probably helps and i would imagine that they have it available. I was offered it for some other procedure, forget which.

Peealot profile image
Peealot in reply tospencoid2

Well, that certainly falls into the bad day category in my book. Good work getting through it. Hoping the result was favorable.

MateoBeach profile image
MateoBeach in reply toTall_Allen

Very interesting. Residual Lu177 decay gamma rays still attached to PSMA on cell surface of mets? Must be much more sensitive than PSMA PET scans. Would it resolve ambiguity in low SUV sites labeled false positives"? That would be very useful.

Tall_Allen profile image
Tall_Allen in reply toMateoBeach

Unfortunately, SPECT scans are less sensitive than PET scans.

garyjp9 profile image
garyjp9 in reply toTall_Allen

If SPECT scans are less sensitive than PETs, what is the benefit of getting a SPECT scan instead of a more typical PET scan?

Tall_Allen profile image
Tall_Allen in reply togaryjp9

Many don't use it. Because it doesn't require a second radioindicator, it can be used as an interim scan to assure that the radioisotope is finding its targets. A PSMA PET scan can only show where the targets are and what remains, not what's been treated.

garyjp9 profile image
garyjp9 in reply toTall_Allen

Thanks, T_A

GP24 profile image
GP24

I had a SPECT/CT after a Lutetium cycle and had no problems at all. I assume you were one of their first patients in this machine.

Here is the wikipedia article about SPECT/CT: en.wikipedia.org/wiki/Singl...

spencoid2 profile image
spencoid2 in reply toGP24

yes they just got the new scanner. th etech said i was "lucky" because the old one took hours. the only problems were that 1 it was repeated three times so instead of 30 minutes it was 1.5 hours. i was haveing a lot of pain in my shoulder and my arms were strapped to me straight jacket style. the sensors have to go very close to you but not touch you and the algorithm of figuring out how to track a body probably needs fine tuning or at the minimum they should be able to retake a partial scan and merge it. Everything was fine until one of the sensors hit my foot. They had me leave my shoes on which might have been the problem. After taking shoes off the scan proceeded fine. The other issue were the pain and the claustrophobia. Because i had a bone biopsy the day before i had to stop anti inflammatory drugs which i was balancing with morphine to reduce the bone pain. If i had known that i was going to be strapped in place for 1.5 hours. I would have taken more morphine. Also having to pee the whole time was not pleasant. I did pee just before the scan but had to before each repeat and might have missed one opportunity. Then there is the claustrophobia which is mild but it really helps to know that the confinement will be limited and that there is a way out. Having my arms and me strapped to ghe table meant that i could not get out in a hurry. Might not be a problem for others but for me it was very scary.

So in summary suggestions to the team running the new machine. Ask if the patient is claustrophobic and if so make special accommodations. The full body wrap is not necessary. For the last scan i just put my hands under my but and arms did not move. This option should be made available from the start. A little vallium might have helped too. The fact that the machine was brand new and had bugs in its sensor positioning system was not comforting. It was difficult to not have images of being stuck in the machine with no way out because i was strapped in.

I have not yet seen the results of the scan yet and I am not saying that I should not have had it. Just that it could have been administered in a more patient comfortable way. So take this all as a warning if you have to get this scan.

fast_eddie profile image
fast_eddie in reply tospencoid2

See my note below about lorazepam as a claustrophobia remedy. It is considered standard treatment in these situations. Hope, like me, you don't need another scan any time soon.

Izzygirl1 profile image
Izzygirl1

My husband has his first Pluvicto treatment 12/26. They said they don’t do scan until after third treatment. Should I request it sooner? Although it sounds hard to do, the one you had sounds like the best one to get based on Tall Allen’s comment! I hope the results are good for you! When will you find out?

GP24 profile image
GP24 in reply toIzzygirl1

I would not get a PSMA PET/CT sooner, although you can get it after the second cycle too. The SPECT/CT is done about two days after the Pluvicto treatment provided the clinic has this device available.

Izzygirl1 profile image
Izzygirl1 in reply toGP24

Thank you ❤️

Tall_Allen profile image
Tall_Allen in reply toIzzygirl1

Not every facility has SPECT scanners.

Izzygirl1 profile image
Izzygirl1 in reply toTall_Allen

I’ll check … thank you! ❤️

Scoofer33 profile image
Scoofer33 in reply toTall_Allen

Thank you for all of your excellent information on this scan, TA. I'd never heard of it before. I'll probably never get it since I have little to no PSMA avidity.

spencoid2 profile image
spencoid2 in reply toIzzygirl1

they told me that this first scan was to establish a baseline. also i was in a trial for something or other that was optional and for which they took the bone biopsy so maybe they wanted the scan for that too? UCSF does it the day after or maybe just for me because i live so far away.

Izzygirl1 profile image
Izzygirl1 in reply tospencoid2

My husband may have a bone biopsy also. They said his cancer is active in every bone in his body right now. 😞

Cancer2x profile image
Cancer2x in reply toIzzygirl1

Luck to you both. I hope things fare as well as modern medicine and his personal biology allow.

Pax

Izzygirl1 profile image
Izzygirl1 in reply toCancer2x

Thank you ❤️

billyboy3 profile image
billyboy3

It would be funny under different circumstances, but again, remember, there is still alot more that doctors do not know than know, and sadly, our system is still set up to make them money so there is a lack of sharing and getting the best results from trials, test, meds etc.

Imagine if we could force them all to work together and share results etc. on an ongoing regular basis!!!! stay well, you lived thru it and made us laugh!!! with tears of course!!!

One day, we should write a book and submit all of the horrors that we have been subject to, but not sure who would read it!!???

Ampa profile image
Ampa

I hear you. Been through most of the treatment gamut and still find the scans to be difficult. As mentioned before Valium can be very helpful but it won’t last for three scans in a row. Just shoot me!

anonymoose2 profile image
anonymoose2

I’m very claustrophobic and what you went through I would choose death. Open MRI or forget it for me. Unbelievable the torture you went through. That is just horrific.

Professorgary profile image
Professorgary in reply toanonymoose2

I hear ya man. I had one mri that wasn’t open and never again.

swwags profile image
swwags

I don't pretend to compare what my experiences have been compared to yours. I am highly claustrophobic though. I was down @ Mayo for a 10 minute MRI. The machine was so unbelievably small and tight, my nose nearly made contact. With my arms over my head, I couldn't last the full 10 minutes. I kept squeezing the panic bulb and the Jerk (yes jerk) mic'd in "just hang on for 2 more minutes". I started moving as much as I could and screamed as I was in full panic mode. That's what it took to stop the nightmare. When I came out, I nearly clocked him.

He said he would make a note in my file to use a larger machine. I'm 6'3" and 180. I said, you mean you packed me in this knowing full well I told you I might panic and there was a larger machine available? I have upcoming SBRT and they tried scheduling an MRI here locally. The scheduler gave it her best shot but no large machines available for the type of MRI they wanted and I would be in there for an hour. I started to panic over the phone. When I had my pre-visit with the oncologist, panicked again. He acquiesced and said he could use the Pylarify scan but warned he couldn't get as near to the spinal cord as he wanted. I said so be it. Damn cancer pops up somewhere new every few months anyway.

I can take a lot of crap these docs throw at me and I tell myself they are helping me but as Clint E says, "A man's got to know his limitations" Good for you getting through it OP.

Teacherdude72 profile image
Teacherdude72

I always do the MRI under anestesia.

PC-22 profile image
PC-22

Does it have to be done within a couple of days after Lutetium injection? I completed 6th injection of Pluvicto in August as part of PSMAddition trial and one of the Nuclear medicine doctors as well as my local Oncologist say they need another PET Scan to compare to the one I received back in January which the trial required but now, neither the trial folks (Novartis) nor my insurance (BCBS) will cover one. Therefore, I would ask for this scan if I could but I never heard of this before and now it’s probably too late for me to get it I suppose.

spencoid2 profile image
spencoid2 in reply toPC-22

it has to be done soon while the lutetium is still radioactive

PC-22 profile image
PC-22

thanks for letting me know. Sorry it was rough on you.

daleboy3 profile image
daleboy3

most of the procedures you have been put through are ridiculous to say the least, myself I have switched to taking Black Fermented Garlic Capsules which kill 14 types of Cancer in tests performed, So my advice is to purchase them online & save yourself from further procedures

RayF profile image
RayF

LOL at Harbor Freight drill! Good to hear you made it through the day, however difficult.

spencoid2 profile image
spencoid2 in reply toRayF

I'm sure they charged me $1000 for a one use drill but it sure looked like that orangy pink color Harbor Freight used to sell. It did its job. HF does sell some good stuff but often I buy their cheapest option to use once. Next time I do a biopsy I will buy from HF.

Break60 profile image
Break60

thanks for the warning!

fast_eddie profile image
fast_eddie

Holy crap. For you and the others here who have found these scans to be a nightmare, I can relate. I have a lorazepam (ativan) prescription for occasional insomnia. It turns out that it is just the ticket for the horror of claustrophobia in these darned scan (torpedo) tubes. I took a 1 mg pill an hour before along with an aleve for expected shoulder pain. The lorazepam really worked to relieve the claustrophobia stress. My left shoulder must have gotten worse -- a lot worse. I was very soon in agony for the 40 minutes this took. I was squirming toward the end. Having my arms straight back like that was a challenge I didn't think I could tolerate. I was vocalizing my distress toward the end. I hope I won't need another scan any time soon. BTW, the scan results were 'clean'. That shoulder doesn't bother me in my normal routine, even at the gym, just when my arm is required to be put in that extreme position. Maybe I need to see an orthopedic guy. I should have taken an 'industrial strength' pain pill. I have some of those.

JolleySprings profile image
JolleySprings

How are your treatments going? My husband also has CDK12 mutation and sees Dr. Aggarwal too. Thus far no Mets but PSA climbing rapidly! Is Aggarwal your only doc? Thanks for a response!

spencoid2 profile image
spencoid2 in reply toJolleySprings

Just started Pluvicto, no biggie so far. Had a couple of very tired days. Next one is in a couple of weeks will see if effect is cumulative. PC is definitely PSMA avid as it showed well on SPECT scan. Not sure what benefit there is of knowing about CDK12? What treatment options might target those who have the mutation? I have asked and the answer seems to be that it might be useful in the future choosing the next treatment.

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