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pet Scan

denise417
Posts: 32
Joined: Sep 2010

Hi everyone, hope this is a good day for all. Just geeling really scared, as Tuesday is the Pet Scan, the more I read, the more I worry. My understanding is this scan shows them if cancer is anywhere else in the body..correct? They are doing it as they all believe that the sort of cancer I have on the voice box, which is called Neuroendocrine Cancer...if that is correct. May be two words, not even sure. Anyway, every dr is saying that are waiting for the results of that test as this cancer is never seen in the throat. It is common in the stomach and intestines, but have never been seen in the throat. Midland,Mich is where I live and they have never treated this before. They wrote to other places to get iformation on it. I went to U Of M for a second opinion. They have seen and treated it three times in the past with success. Their suggestion for treatment was the same that the area in which I live had decided on, so I am having it done here at home. So, this scan has got me scared to death. I asked if cancer is somewhere else, what does that mean. They said nothing much, as Chemo is already in the treatment. They need to know if it is elsewhere to watch it during the treatment. Make sure it is treated at the same time. Is this so, as far as others know. How worried should I be? They put in a peg tube last Wed, and I hate it. The trach is a month old now, hate that too. I am 97 pounds and suffer chronic Pancreatitis, which adds to the weight problem. So, they say the tube is a must. Had the mask fitted??? is that correct? Went in and they molded a mask. I will start that on the 27th, and that is not going to be a walk in the park either uh? I do have Ativan I can take before it, didn't know I should, but I do now. Why is the mask so bad? They said the eyes will be out, and it didn't feel all that bad. Just tight to the face. Oh someone, fill me in. I will do much better knowing anything here......please help with any information that may help me get thru this.... denise

Skiffin16's picture
Skiffin16
Posts: 8167
Joined: Sep 2009

Actually, to me the initial PET is a good thing. As you mentioned, it is what gives them insight on your overall status concerning cancer, and the best plan of action.

As for the mask, at least for me, it was just being confined and not able to move, bolted to the table. I'm one that doesn't even like my feet tucked into the sheets, because I can't move them, LOL. So that was what I hated most. I managed my way through it with Xanax initially, but within a week or so, I was used to the routine and could get by just with a CD of my choice...knowing within four songs andI was done for the day.

Good Luck, God Bless,
John

denise417
Posts: 32
Joined: Sep 2010

Bolted to the table, I didn't get that part of it. I thought it just felt that way with the mask, not that you are bolted to the table....oh geez.....four songs and done? That would be ok. Thanks for the reply John... I think it was helpful...lol....bolted to the table????

Skiffin16's picture
Skiffin16
Posts: 8167
Joined: Sep 2009

LOL, sorry about that, oh well, now you won't be surpised...better take the anxiety meds for sure then. It is a fact though, that's the reasoning for the mask...needed for you to be in the exact position each and everytime. If you weren't the rays wouldn't hit the same mark everytime, and you would have a less exact area treated, and much larger area of residual damage to healthy tissues.

You'll make it, we all have, you just need to find what works for you at the time... The anxiety meds work wonders though, and you can still fully function. I took mine when I left the house for treatment, drove myself there and home after. They just knock the edge off of the anxiety. They don't impair you in any way.

Best,
John

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

Hi Denise, the PET scan is really nothing to fear and is a necessity before the doctors decide on your treatment plan. I was diagnosed in May '09 with NSCLC in my left lung, was sent for a PET scan and they found I also had SCC supraglottic laryngeal cancer. The cancer on my larynx would not have been found as quickly without the PET scan so needless to say I am a very big fan of the PET. My cancers are two completely unrelated and different types of cancer, not mets.

I took Ativan before my PET and before each radiation treatment, but that's just me, I am claustrophobic and get very apprehensive in confined spaces. A lot of us who had radiation used Ativan just to relax us during treatment but you may do fine without taking any.

The peg tube is a nuisance but it's a necessity and a life saver. You are already tiny and don't want to lose any additional weight. It is easy to use and clean.

The first thing you need to do is take a deep breath and relax. I know, it's easier for me to say than it is for you to do, but you will do fine. Many of us on this site have already been through our treatment and will be here to help you through yours. Some are still in treatment but have experienced much of what you will be going through and they will help guide you also.

Please know that we are all here for you, to answer your questions and calm your fears. Having cancer is probably the scariest thing anyone can go through but it is very doable.

Have they told you what type of chemo you will be receiving and how often? Everyone reacts differently to treatment so it's almost impossible to tell you exactly what will happen but we can and will share our experiences with you.

Now take that deep breath and say "I can do this".

Please keep us updated as you learn more about your type of cancer and what your treatment plan will be.

Stay strong,
Glenna

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I got through it by putting my mind in a different place. It was not a pleasant experience
but for me it wasn't as bad as it is for others. Everyone is different. Fear is normal - but a positive attitude is must. You'll be in my prayers.

Hondo's picture
Hondo
Posts: 6122
Joined: Apr 2009

Hi denise

I know telling you not to worry will not help any. The PET is not all that bad, yes it will do one very good thing and let you know where your cancer is so that it can be treated correctly, so that is not a bad thing. The Mask is a little harder to do but just make believe you are somewhere else or aim your focus on something else or try singing a song during treatment like Honey by bobby Goldsboro, before you know it your treatment for that day will be over.

Like John said with in a week or so you will be use to the Mask and it will not bother you any more.

All the best to you

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Denise,

The PET scan is a very good thing that gives us info we need to know. Mine revealed metastases to my spine which we were able to successfully treat. Without that knowledge the cancer there would have gone on unchecked. I didn't like hearing the news but was sure grateful that they found it. I have also had a mask fitted but not used yet. Just the fitting was uncomfortable but I've been told and read here that the sessions are pretty short, about 25 minutes max. I've sat in a dentists chair being uncomfortable longer than that so I'm pretty sure I can handle the mask. I'm sure you can too. 25 minutes is just about right for a few songs or a nice prayer. Best to you,

Bob

Skiffin16's picture
Skiffin16
Posts: 8167
Joined: Sep 2009

Actually even less, more like 15 minutes usually. Other than on the day they add a few extra minutes to do the X-Ray shots to check on the fit.

JG

train-nut
Posts: 101
Joined: Jun 2008

really isn't that bad. The radiation techs will be watching you the whole time you are being treated. They will notice anything out of the ordinary and can get to you in 2 or 3 seconds if needed. The mask attaches to the table with over-sized dress snaps that you can pop loose. I was concerned about what would happen if I had to barf; the techs said to go left or right but not straight up or I could bash my head on the machine (and maybe damage it?). Like the rest of this there are work-arounds for nearly all of it. The PET scan will be very valuable in preparing your treatment plan and making you cancer-free. Denise we all wish you the best of health. Rich
P.S. Bob mentioned the dentist's chair, now that IS terrifying.

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

Hello and welcome.
The mask should get easier with each treatment. i started with .5 of Ativan 40 min. before each treatment. I no longer need it. I focus on long deep breaths through the nose and mouth. Your favorite music will also help.

Another poster told me to count the revolutions the machine makes when I am receiving the radiation. My treatment is aprox. 31 rotations. When I get to the 25th rotation, I know I am home free.

Trust me, It WILL GET EASIER EACH TIME YOU GO.

BEST!!

Mike

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