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Re: Worried, found lesion [Re: NonaChris] #200448
10-01-2020 11:28 AM
10-01-2020 11:28 AM
Joined: Jun 2019
Posts: 229
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Gold Member (200+ posts)
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Joined: Jun 2019
Posts: 229
I've got everything crossed for you


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Worried, found lesion [Re: Dizz_zzey] #200449
10-02-2020 12:20 PM
10-02-2020 12:20 PM
Joined: Aug 2020
Posts: 31
Huntington Beach, CA
N
Nels Offline
Contributing Member (25+ posts)
Nels  Offline
Contributing Member (25+ posts)
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Joined: Aug 2020
Posts: 31
Huntington Beach, CA
Dizz and NonaChris,

I learned a lot reading this thread. Thank you both for sharing.

A comment on C19 and hospitals. My surgery for SCC on my tongue (glossectomy and neck dissection) was April 1 2020 in the midst of the first wave in Southern California. At first, I thought it would be really hard on me with no loved ones there. But, over a couple days, I realized it was much harder on my wife. The not knowing is brutal and the mind plays games. So, soon as I could speak with the Passy-Muir device, we did taped videos and soon phone calls. The nurses were angels. I mean it. We had some of the most amazing experiences (choking, suctioning, laughing, trying to get the 15 wires and cables out of my way to use a bathroom). I think back, and honestly, my recovery went better. I was absolutely focused on my recovery and getting home to my family.

Hoping this whole thing is a simple fix but just in case, wanted you to know the hospital stay was not that bad.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Worried, found lesion [Re: Nels] #200479
10-10-2020 04:44 AM
10-10-2020 04:44 AM
Joined: Jan 2011
Posts: 46
Yardley, Pennsylvania
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NonaChris Offline OP
Contributing Member (25+ posts)
NonaChris  Offline OP
Contributing Member (25+ posts)
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Joined: Jan 2011
Posts: 46
Yardley, Pennsylvania
Dizz and Nels,

Your positive outlooks and shared experiences are so appreciated.
I have moved forward, well not too quickly, my surgeon who I have been followed by for the past 9 years and who is to do my surgery, threw his back out. Ugh! I want him to do the surgery, he knows me and I know him well. He has also said he wants to do my surgery so I am willing to hold on.
I found out via biopsy, CT, and exam that the cancer on my tongue is at a stage I and the hopes for the surgery is that it does not show anything that is more concerning. I understand the CT is not very good at picking up the depth of the tongue or even a good view since I have metal (fillings) in my mouth. It gets in the way. Another good reason to take care of your teeth.
There is conversation about the nodes because again they are not as visible since I have a thinner neck. Apparently they are also difficult to see on the scan.
So, I know more but a bit muddled. My surgery is set for Thursday, October 22. It may get moved up but not unless my doctor's back situation is remedied and I have to do the 2 Covid tests and pre-admission assortment of requirements.
I am a Kindergarten teacher so this is a huge part of my anxiety. I am teaching virtually currently and preparing for my leave. I know things could be very different after my recovery, they may be back in the classroom.
My hopes that out of all the negatives I can experience the positives you have both shared here is this blog. I have every hope that I will be able to negotiate the surgery and recovery with success. I very much appreciate your willingness to share and support me.
Feel free to share specifics about your surgery and after care, recovery. I am hopeful it will give me strength and knowledge to go into this a stronger patient.
Be Well,
NonaChris


61 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.

Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis
Re: Worried, found lesion [Re: NonaChris] #200483
10-13-2020 06:55 AM
10-13-2020 06:55 AM
Joined: Aug 2020
Posts: 31
Huntington Beach, CA
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Nels Offline
Contributing Member (25+ posts)
Nels  Offline
Contributing Member (25+ posts)
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Joined: Aug 2020
Posts: 31
Huntington Beach, CA
NonaChris,

Trust in your medical team is a wonderful feeling. Hope it all works and I would probably wait too especially knowing stage I. Oct 22 is not far away. As for specific notes from surgery and recovery, I have a couple lists and spreadsheets I put together. Happy to share them. Will pull them out from home later and send. May be easier to do thru private message.

BTW, being and Kindergarten teacher makes you an angel in my eyes. What a wonderful way to help influence our future.

Keeping you in my thoughts for a successful treatment.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Worried, found lesion [Re: NonaChris] #200484
10-13-2020 07:16 AM
10-13-2020 07:16 AM
Joined: Jun 2019
Posts: 229
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Gold Member (200+ posts)
D

Joined: Jun 2019
Posts: 229
Hi NonaChris,

Not long to go. I'm so glad you don't have to wait too long.

Things that helped me in hospital were a small (A4) whiteboard and several whiteboard pens so that I could communicate. I took a lady shaver so I could shave my legs whilst I was there. It just made me feel clean even though I couldn't shower or wash my hair. Moisturiser for you body and hand-cream. I gave myself gentle hand and foot massages, which helped make me feel comfortable.

I took comfy slippers, a shawl, loose nightwear, mobile phone and charger. I did take a couple of books but I found I couldn't concentrate on them. I did take a book of word searches though. It was nice to do them as you don't need to concentrate too much.

I had received loads of cards from friends, so I took a couple with me to make me smile and brighten up the room.

I'll be thinking of you on the day xx


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
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