Waiting for first pet scan after treatment

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Waiting for first pet scan after treatment

by Deputymom on Wed Jul 10, 2019 02:39 AM

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Hi. I just completed 33 rads and 3 rounds of chemo for stage4a squamous cell carcinoma in my neck. I was misdiagnosed for over a year before I finally got someone to pay attention to my enlarged lymph nodes. Rough treatment but I made it through. Thank goodness for the peg tube. I am 4 weeks out from treatment and eating and drinking by mouth. Terrible dry mouth and not much taste from the food but at least no more nausea and things don't taste spoiled any more. My neck still feels foreign and weird. I saw my ENT and he said he could feel one spot which might be scar tissue from a lymph node but the rest of my neck felt clear. I have my first peg scan in 4 weeks and I am so worried about it. I am concerned that I might need a neck dissection and honestly I am so sick and tired of being sick. I was wondering if anyone else had "leftover scar tissue" from lymph nodes after treatment? This is my first post but this forum has been so helpful to me throughout my ordeal...I welcome any info or advice. Thanks!

RE: Waiting for first pet scan after treatment

by Coopercoop on Wed Jul 10, 2019 04:33 PM

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Can I ask about your lymph node and symptoms prior to diagnosis? I, too, have enlarged lymph nodes (at least 3) in the neck and some other symptoms and haven’t been able to find answers. Did you have a CT of the lymph nodes and still were told it wasn’t cancer? That’s where I’m at... I’ve had a CT, been told they are enlarged but probably reactive. Ball stopped there. I’ve been trying to figure this out for nearly 2 months now. Sending good thoughts for your upcoming scan and best wishes for continued recovery.

RE: Waiting for first pet scan after treatment

by Deputymom on Wed Jul 10, 2019 07:55 PM

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I had pain in the right side of my neck almost like I "slept wrong" on it so after a few weeks I went to my primary care physician who sent me to have an ultrasound of my carotid artery "just in case". The ultrasound showed nodules on my thyroid gland which I had a fine needle biopsy for in March 2018. After weeks of worry I finally was told it wasn't  cancer. I still felt the enlarged lymph node on that side but was assured it was nothing. It got larger that call so I went to 2 other doctors who said it was nothing to worry about.  Then in February 2019 I happened to accompany my husband to his doctor and the young resident he was remembered me and I told her my node was still there. She said maybe you should see a surgeon. I went the next week. Had ultrasound, then CT scan, then biopsy and finally diagnosed...couldn't find primary site. Had pet scan and thankfully the cancer was still regional in head and neck although now on both sides. Had peg tube and chemo port surgery, had radiation mask made and treatment began in April. My advice to anyone is if you think something is wrong don't just accept it... You know yourself better than any doctor. I have to say that once diagnosed I have received excellent care. But it has been a very difficult time and I can't help but worry that my chances would have been better if I knew sooner. I feel like that year have cancer an advantage...but since I don't have a time machine, I am just trying to move ahead and be strong. Maybe you should ask about a biopsy if the node doesn't go away...good luck and be the "squeaky wheel" if you have to!

RE: Waiting for first pet scan after treatment

by Coopercoop on Wed Jul 10, 2019 10:30 PM

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What an ordeal! I’m so sorry to hear that. How large was the enlarged node, if you don’t mind me asking? Did they suspect it was cancer after your CT (despite not seeing a primary)? I had a CT and the report simply states that it is presumed to be reactive and given size criteria, not deemed pathological. The radiologist concludes it should be monitored on follow-up. I’m confused because I didn’t think size should be the only criteria for suspicion. Mine doesn’t seem to have changed in size, but it sounds like yours took a long time to change size. Stories of others being told similar makes me worried. And I realize that it won’t always be the case that something is missed. Sorry I jumped on your thread, for some reason none of the posts I’m creating are showing up. It says it needs to be approved by a moderator... it’s really just my story so I can’t sort out why it hasn’t been approved! Continuing to wish you well.

RE: Waiting for first pet scan after treatment

by Deputymom on Thu Jul 11, 2019 01:39 AM

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I had multiple nodes which showed up on pet scan but the one I could feel was 2.2 x 2.3 cm...

RE: Waiting for first pet scan after treatment

by Sdurnell on Thu Jul 11, 2019 05:02 AM

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Deputy,

Did you have radiation only or surgery too?  

I had a modified radical neck dissection first because I didn't have a firm diagnosis.  That surgery provided it--SCC, stage II, non HPV related, no primary found, only in one lymph node.  Then radiation followed.

But I wanted to tell you that my neck dissection was a piece of cake.  I never even needed pain meds.  I had some minor issues later, after radiation to the surgical site, but they were/are not serious.  So if you have to have it, go for it!

And try not to dread the upcoming scans too much.  I looked at them this way--either they would be clear, in which case I'd carry on with my plans, or they'd find an early sign of something I needed to deal with, in which case I'd get a new plan.

Also, my radiation oncologist insisted on waiting four months before I had a post-treatment scan.  He said any earlier and you run the risk of a false positive, which can needlessly drive fear into one's heart.  And I've noticed that some folks on these sites do get false readings when they have scans at 3 months, just because the healing is not complete enough yet, making it light up as if cancer is still there.  

All the best to you.  I hope you can tolerate the slow pace of recovery, and that you are getting a lot of calories and protein to help you heal.

Susan

RE: Waiting for first pet scan after treatment

by Deputymom on Sat Jul 13, 2019 08:39 PM

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Susan,

Thank you for your words of encouragement. The only surgery I have had so far was a biopsy...surgeon removed my "2nd largest" suspicious node. When he saw the node he decided to leave everything else as is and referred me to an oncologist immediately after he got the pathology report. So I had a pet scan and no primary found so I had a triple endoscopy and despite the ENT taking samples for biopsy no cancer found except my lymph nodes.  So I had 33 radiation treatments (I think they did my entire neck because they didn't have a primary) and 3 "heavy duty" rounds of cisplatin.  So no surgery unless the peg scan results aren't what I hope for.  I know it's possible to have false positives and my oncologist said he's good at knowing the difference so...I really appreciate your perspective on the scan anxiety...you have been where I am going and and I can't thank you enough for sharing how you cope...I will keep you posted! Bless you!  

RE: Waiting for first pet scan after treatment

by Sdurnell on Sun Jul 14, 2019 06:55 AM

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Deputy,

My case was somewhat similar.  Eight years ago I had one enlarged, painless, lymph node.  Had a CT and after that my primary doctor sent me to an ENT/neck surgeon who did a fine needle aspiration biopsy of it.  That turned out to be inconclusive (I don't hear that much at all on these forums), so I had a modified radical neck dissection, which involved removing all 20+ lymph nodes on that side.  The pathology report only found cancer in the one, and it was encapsulated.  It also tested negative for HPV, which was pretty weird since I've never smoked, am only a light drinker, and am not male.  (Since then my doctors have told me they suspect that it was a false negative.)

So I had all my teeth out (bad gums) and after my mouth healed started radiation, no chemo.  They did my whole neck too because no primary was ever found.  Declared cured at 2 years by my ENT, and at 5 by the oncologist.  

I think it's good that the doctors want to check in so often (every three months at first for me), so if there is any problem it will be found right away.  

I had a false positive once, but fortunately not the first PET.  I developed a swallowing problem that no one could diagnose, and finally began a series of throat dilations by a GI to open it up.  And one time I went to a PET before I'd waited long enough to heal from the dilation, but I told the doctor, and he was able to understand why I was lighting up.  My radiation oncologist ordered all the scans, and unlike a medical oncologist he was able to read them himself before they even got to the pathologist.  I'd get the scan in the morning and he'd show it to me after lunch--also a great stress reliever, not having to wait for days.  So he could tip the pathologist off about why I was glowing, and none of us had to worry.

I hope all goes well for you.

Susan

RE: Waiting for first pet scan after treatment

by Deputymom on Mon Jul 15, 2019 03:46 AM

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Susan,

I have never smoked and almost never drink alcohol unless it's a very special occasion...I probably average two or three drinks a year at most.  My lymph node biopsy came back negative for HPV and my oncologist thought it was a false negative, too!  I was lucky because O only had to get my bottom wisdom teeth extracted before treatment. In addition to the radiation O had 3 rounds of chemo. The two weeks after treatment ended were the worst days of my life and if it weren't for my family O might have given in to the illness and depression cut that dark time.  I didn't eat anything by !mouth for 2 1\2 months so the peg tube was vital for me...I kept trying to drink water because I had been warned about losing my "swallow". I lost about 20% of my body weight but I was "robust" (my doctor's diplomatic way of saying FAT) so although I could afford to lose weight I also lost muscle. I have been able to maintain my weight eating by mouth and haven't used the feeding tube for about three weeks now. I am hoping that if my pet scan is clear to get rid of my peg and port soon.  I know I am very lucky in some ways. I hope my saliva returns at least a little and my taste buds improve.  I also have problems with my hearing...sounds are amplified and everything seems super loud.  The ENT says everything will improve with time and I pray he is right.  I appreciate you taking the time to reassure me about the neck surgery...I hope it isn't necessary but I will just have to wait  and see. It is especially encouraging to know that you are an eight year survivor...thanks again for sharing your story with me...you have helped me more than you will ever know...take care ?

RE: Waiting for first pet scan after treatment

by kak123 on Mon Jul 15, 2019 03:40 PM

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My husbands first Pet/CT showed poisitve followed by an MRI which also showed positive. His Dr. felt this could be left over radiation and chose to repeat the testing iin 3 months, which he did. Both Pet and MRI showed positive again. He was sent to a specialist and given 3 options, do nothing, do a biopsy which probably would give false info due to treatment or have his tongue removed. He is a little over a year out and still don't know what is real. Not sure a point they will feel the Pet scan will give true finding. Very frustrating

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