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Pet Scan

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Had my first Pet Scan since treatment ended Dec. 27th. All clean. There was a little hot spot in throat but the Dr. said that it is common this close to treatment and is not worried. Will do another scan in 3 months then he said one a year after that. I want to thank everyone here who has provided help, encouragement and prayer during this journey. As I go from cancer patient to cancer survivor I hope I can help others as those have done for me.

Thanks
Kurt

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Great news Kurt,
Can't wait for my 1st clean one. Keep it up!!!

Best,
Steve

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Good one Kurt. Breath easy and focus on getting back to doing things a step at a time. Having a clear Scan gave me a well needed boost. My neck hair bristled when I got the phone call and i think i exhaled 3 hours of breath in one go.

I am about 3 mths ahead of you Kurt. Played my first game of Golf yesterday and had a 2 hour bike ride today so feeling pretty good and also back at work full time. Eating still a pain but just have to deal with that for now.

Stay well and wishing continued good news.

Scambuster

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

Great news Kurt. I had a hot spot as well show up as I was just 2 months post treatment for my first PET too. Hope you made it to Daytona and if so had a great trip. Take care and keep it up.

Mike

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I too hope and pray that you will continue to stay here on CSN, there will always be cancer and there will always be people who need our help and support while traveling down the road of fighting Cancr. It is always good to hear when someone makes the transition from Patient to Survivor.

God bless and keep you my Friend

pk's picture
pk
Posts: 192
Joined: Aug 2009

Great News!!! Things will just get better and better. My husband,who had his first scan in Jan., is doing very well. Energy and appetite are back even tho taste is still funky. Weight is being maintained and we are now vacationing on St. Simons Island until mid April-biking and golfing. 2nd PET will be the end of April when we get back. Take care. Keep posting. I am so happy for you.
Phyllis

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I hope you both enjoy your vacation, take care and be safe

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad to hear about your test results - I'm sure you know how good it makes the rest of us feel when we read someone's done well. Keep it up.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Great to hear, Kurt.

I was told "something might've shown" after my first post-treatment PS. Last rad was in April, and the PS was in July. ENT said he wasn't concerned about it- below the tongue, for me. You're gonna have another PS in 3 months? My ENT said 6-months between is the standard. Just wondering.

kcass

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

My boyfriend was supposed to get his first PET scan in January, about 3 months after finishing treatment. He went but could not do it since he had such a bad case of thrush.
Thats a problem he has had to deal with alot. Today he was supposed to get his scan. Thrush is gone, the radiologist was so overjoyed at how he "looked" (im not with him, so i dont know what he based his excitement on) that he told him he didnt need to go thru a scan.
He had cancer of either the jaw or soft pallet. I dont even know for sure. My boyfriend is not very good at relaying all details, it was very overwhelming for him Im sure. So to keep him from losing patience and having to talk so much, i didnt ask lots of detailed questions. Such as the type of cancer. I know it was SCC, no idea what stage, although they were very encouraged at the early stage that it was caught. He had 36 rads, and 1 chemo per week of 6 weeks, then the last 2 weeks he had 2 rads per day. He is now 18 1/2 weeks out of treatment.

Has anyone heard of not having to have a PET scan?? I asked how the radiologist was so sure he didnt need to go thru it, and he said he didnt really know for sure, and what choice did he have. So either he isnt telling me everything, or he didnt really want to have the scan so didnt push, or didnt need it. Does that even happen, not needing it? So used to them telling him everything he would NEED for this chaos, now they say he doesnt need it.
He doesnt sound at ease, or settled at the fact that the radiologist and dentist say the tumor/cancer is all gone, no signs in anything they do or check other than the scan.

he still has no taste, extraordinary ability to smell, no saliva, and mucous alot of the time, or in the morning, dry mouth not good either. His color is very good again, hair has been growing well,
no longer losing weight even though he removed the PEG. He knows it was good for him but he hated it. He just wants to eat. cant get the food down without enough saliva, even if he drinks. Too much going down at one time makes him gag I guess. He is better, but its oh so slow. The thrush was a pain in the ass. The radiologist told him to keep using this liquid to rinse and gargle with when he has issues with thrush, but his dentist said she didnt like it cause it can cause black tongue, discolor your teeth etc. However with all she didnt like regarding the treatment of side effects, she was not able to offer anything positive as an alternative. Only what she didnt like. Again, for all practical purpose, he has no signs of cancer at all. tumor totally gone as well as whatever else they look for.
sort of too scared to relax as Im sure he is.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

i just found out that the oral rinse my boyfriend was/is using is
peridex or also known as chlorhexidine.

backachedp
Posts: 124
Joined: Oct 2009

My husband is at the Dr right now..he finished Radiation and Chemo Jan 28 2010..he would not let me go with him...I have been to some Appt's but alot of the time he would not want to talk about it and just kinda left me out..so I let him go thru what he needed to and when he wanted to talk he did..it's hard for us when we do not know everything we feel we need to know. My husband had the Majic Mouth wash and something else, but stood by the baking soda and salt. He looks real good, but has only had soup a few times aqnd Oatmeal twice. I am concerned because he has 1 1/2 cases of liquid food left and say's he does not need anymore...so he is not getting all the norisment he needs. I am going to order more today while he is gone. He was using 8 cans a day now he uses maybe 4 total. He does not want me at the Dr because I will tell them the truth and he hides things which I told him he cannot do. They can't help when they don't know everything. He fibbed about his pain and one time they looked in his mouth and said your pain is at a 2???? I shook my head and said 7 or 8...the Dr said do not get mad at her get mad at me...so off he went today but it is for Lab's and general check up. He get's his first PET April 14. Hope everyone is well and Congrats to all who are doing well! There is a light at the end of this tunnel. I am ever so Thankful that I found this Board.

pk's picture
pk
Posts: 192
Joined: Aug 2009

This seema a bit odd to me. My husband went thru treatment and did extremely well. Not having a PET scan was NEVER and option. He had his first one 4 months after treatment and now has another one scheduled May 1. I cannot imagine a radiologist not requiring this scan!
PK

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

my next Pet is on April 8th- every 6-months is what I've been told, and it is their best guage on any signs of C- though it is unlikely any Pet findings will be conclusive. Instead, results likely will only lead to further testing, or exploratory. Like PK, it is my understanding a Pet is a "given" every 6-months, post-treatment.

backachedp: nourishment is critical!!!One MUST give their body what it needs to fight the good fight. Ensure and Boost are good. MUST get the nourishment. MUST.

kcass

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I've had two PET scans so far. One after I had my tonsils removed to identify any other areas of concern. Then another a few months post treatment veryifying that the cancer was gone (or no signs remaining). That was last August and I'm scheduled for another this coming August.

I have been getting a CT scan about every 3 - 4 months, but now I just graduated to a six month schedule.

I think the PET scan is a wonderfully detailed tool. But also my doctors want to limit the amount of exposure from the CT and PET scans.

God Bless,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

my ro is reccomending that i do not get a PET scan. he talked about limiting the amount of exposure with me as well. a risk vs. benefits situation in my case. i am also allergic to diagnostic dye. like stop breathing allergic. i had 2 ct scans. one with out dye, and one with, where they gave me counteracting drugs to keep me breathing, but they do not like to push it. i had a pet when they were looking for my primary. it showed nothing but my tumor that they removed. they said i had clean margins and got everything they needed.

i also have an added risk that with my fanconis anemia, i already have chromasomal breakage and damage. so for me they decided the risk outweighed any benefit. also, my mouth is still in a lot of pain, and could show a false positive anyway.

like everything else, situations can vary. we all have different circumstances with our cancer.

i wish in a way that i could get a pet scan and someone would say, you are cancer free.

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

Had my post treatment PET scan, and wife and I waited on pins and needles for the results. Finally got an appointment with the RO (who has Zilch for patient manners), and I ask the results of the Scan. He tells me..."Well, as of today, we see no tumors". I then ask the obvious...."What do ya mean, AS OF TODAY"??. He goes into this well used disertation of how it can come back at anytime...blah...blah..blah, and not to get my hopes up for at least 3 more years.

So at that moment, I made myself a resolve that I'm not gonna worry about something that I can't control and just concentrate on what I can control,.... ie....eating healthy vegggies and fruits.....rest when I want to....travel with wife and family... and just generally take care of ME and do what the medical profession tells me to do. Bottom line, Sweet, is that they aren't gonna tell you that this sorry-assed road we are on has come to an end (at least not for a few years)......so just hang in there and reduce the worry and control what you can control.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

thank you, cajuneagle.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Very well put. Why worry about what you can't control? Get about the business of living, and let the rest fall away.
As a famous guy who lived long ago -- some guy from Galilee, I think -- once said, "Who of you by worrying can add a single hour to his life?"

--Jim in Delaware

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