Anxious about 1st post-tx PET Scan this coming week

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Anxious about 1st post-tx PET Scan this coming week

by tanasi on Sun Dec 03, 2017 10:14 PM

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Trying to stay in the moment and not make assumptions on the sensations I've been feeling the past few weeks.

I went through treatment for HPV (P16) Tonsil Cancer (SCC) July - September. Started in my left tonsil and grew into my left pterygoid muscle. I had 35 radiation tx's and 3 chemo (Cisplatin) tx's. The 3rd left me in the hospital for 3 days.

I've been doing well, slowly gaining some wieght back. However, the past few weeks I've noticed similar sensations in my left TMJ area as before my tx began. Numb, tingling feeling along left check. The positive differences being I still have feeling (can feel hot & cold liquids) inside my left check and I can open my mouth to normal limits, w/ just slight pain at the furtherest point. There has been some swelling around my left TMJ as well last coule of weeks, but none of the jawline lymphnodes feel tender at all.

Hoping it's all associated to muscle & nerve damage from the tumor, but it's all come on in past 2-3 weeks. 

RE: Anxious about 1st post-tx PET Scan this coming week

by Sdurnell on Sun Dec 03, 2017 11:38 PM

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The muscle and nerve damaged caused by a tumor or surgery can be exacerbated by radiation.  That could be what's happening, as often effects are felt after treatment is over.

Best of luck to you.

Susan

RE: Anxious about 1st post-tx PET Scan this coming week

by tanasi on Mon Dec 04, 2017 03:30 PM

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Susan, thank you for your reassuring reply. My head tells me the same thing.

RE: Anxious about 1st post-tx PET Scan this coming week

by TIG2016 on Tue Dec 05, 2017 05:19 AM

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Good luck! Will be thinking of you. Bet all is good

TIG

RE: Anxious about 1st post-tx PET Scan this coming week

by NJM01 on Wed Dec 06, 2017 09:21 AM

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Hi Tanasi, It is uncanny our similar our situations are. I too was diagnosed with locally advanced HPV 16 cancer in late June. Mine was situated in my left tonsil. I had treatment (35 x rads and 6 x Cisplatin) from July through to mid-September. My first PET scan is scheduled next week. I'm still on the long path to recovery and finding my "new normal". Over the last few weeks I have been withdrawing from Fentanyl after a long bout of mucositis that left me with a PEG tube longer than I wanted. Like you, I have been feeling pains in my neck that scare me. However, there is no suggestion that the lymph nodes are up so I take comfort from that and attribute these pains to the ongoing healing process. To make matters worse, I woke this morning and had blood in my throat. I also had an exceptionally dry mouth/threat. I immediately rang the nurse coordinator at the centre where I was treated and she reassured me that even that dramatic an experience is not entirely unexpected given (in her words) "the hammering" they gave my throat. I wanted to write to let you know that you are not alone and that the symptoms and fears you are experiencing are shared by others. I have so many doubts, including around what the treatment options are if my scan is not clear and whether I have the inner strength to endure an ongoing fight given how tough my recent treatment was. When I am particularly stressed or preoccupied with my imminent scan, I just cling to the words of my treating radiation oncologist who has many years of experience with HPV throat cancer. He said, "we cure almost everyone". I note his emphasis on "almost". There are no guarantees and my oncologist naturally emphasised that he can't predict or guarantee the outcome of my PET scan, but I take comfort from the fact that the odds are in my (our) favour. I wish you all the best in your scan. N

RE: Anxious about 1st post-tx PET Scan this coming week

by tanasi on Wed Dec 06, 2017 08:00 PM

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On Dec 06, 2017 9:21 AM NJM01 wrote:

Hi Tanasi, It is uncanny our similar our situations are. I too was diagnosed with locally advanced HPV 16 cancer in late June. Mine was situated in my left tonsil. I had treatment (35 x rads and 6 x Cisplatin) from July through to mid-September. My first PET scan is scheduled next week. I'm still on the long path to recovery and finding my "new normal". Over the last few weeks I have been withdrawing from Fentanyl after a long bout of mucositis that left me with a PEG tube longer than I wanted. Like you, I have been feeling pains in my neck that scare me. However, there is no suggestion that the lymph nodes are up so I take comfort from that and attribute these pains to the ongoing healing process. To make matters worse, I woke this morning and had blood in my throat. I also had an exceptionally dry mouth/threat. I immediately rang the nurse coordinator at the centre where I was treated and she reassured me that even that dramatic an experience is not entirely unexpected given (in her words) "the hammering" they gave my throat. I wanted to write to let you know that you are not alone and that the symptoms and fears you are experiencing are shared by others. I have so many doubts, including around what the treatment options are if my scan is not clear and whether I have the inner strength to endure an ongoing fight given how tough my recent treatment was. When I am particularly stressed or preoccupied with my imminent scan, I just cling to the words of my treating radiation oncologist who has many years of experience with HPV throat cancer. He said, "we cure almost everyone". I note his emphasis on "almost". There are no guarantees and my oncologist naturally emphasised that he can't predict or guarantee the outcome of my PET scan, but I take comfort from the fact that the odds are in my (our) favour. I wish you all the best in your scan. N
Thank you, NJM01! Such a great reply. I love your radiation oncologist’s quote. I had been texting with my RO about today. He replied, “I get the anxiety but nothing about your course of treatment or recovery has me concerned. Sleep well my friend...your big brother Jesus has already walked this road for you.“ At this moment, he came in during his sabbatical to review my scans from today. These guys are rock stars. I wish you all the best.

RE: Anxious about 1st post-tx PET Scan this coming week

by Sdurnell on Thu Dec 07, 2017 06:59 AM

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There are a couple of ways to look at upcoming PET and/or CT  scans.  You can worry, or you can adjust your thinking (it may take some self talk) to see it as an opportunity. 

Right now neither you nor anyone else knows what is going on with your cancer status, but that will change with your scan.  And you will be better off no matter what it shows.  Either your scan will be clear (NED--no evidence of disease) and you can go out and celebrate, or something will show up, in which case you will have an early warning that you need to do something else.  In both cases you will have a better idea of what will be happening in the future.

"Scanxiety" is not uncommon with cancer patients, and it can be pretty consuming.  But it really doesn't do us any good.  Best of luck to you both on your next "opportunity" and all the ones that come after!

Susan

RE: Anxious about 1st post-tx PET Scan this coming week

by tanasi on Fri Dec 08, 2017 08:52 PM

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Thanks for the feedback. Met with my s morning, and my PET Scan and CT Scan are ALL CLEAR. Very thankful, and grateful.

RE: Anxious about 1st post-tx PET Scan this coming week

by NJM01 on Fri Dec 08, 2017 11:38 PM

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Fantastic news! I'm hoping for the same outcome on Tuesday next week. So very happy for you. I pray that the good results continue!

RE: Anxious about 1st post-tx PET Scan this coming week

by tanasi on Sat Dec 09, 2017 12:00 AM

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On Dec 08, 2017 11:38 PM NJM01 wrote:

Fantastic news! I'm hoping for the same outcome on Tuesday next week. So very happy for you. I pray that the good results continue!
Thanks! Please let me know your news. Direct message here, if this forum has the feature.
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