Previous Thread
Next Thread
Print Thread
6 months post treatment and counting #199799
02-14-2020 04:21 PM
02-14-2020 04:21 PM
Joined: Feb 2020
Posts: 4
C
cancersurvivor2019 Offline OP
Member
cancersurvivor2019  Offline OP
Member
C

Joined: Feb 2020
Posts: 4
Hello Everyone,

I was diagnosed P16+ Squamous cell carcinoma in both tonsils and 2 lymph nodes in May 2019. After a radical neck dissection, tonsillectomy, 5 rounds of chemo, 33 radiation sessions and four and a half months on a feeding tube, I'm feeling great! I had my 12 week PET scan in November and was given the all clear. The PET did show low level activity in the left pulmonary apex which the doctors attributed to inflammatory changes resulting from radiation therapy. As a precaution they scheduled a followup CT scan which took place on Tuesday of this week. I'm scheduled to see the Dr about results next Friday, Feb 28th 2020.

It's been a long time since I've felt this good and expect everything will be normal on the CT. Had the feeding tube removed on November 25th 2019. I've been back to work since December 2nd. I started going to the gym a couple of weeks ago and hope to someday put this behind me. It has been a tough... really tough battle. My recovery was faster than some that I've talked to but it sometimes seemed like I would never taste food again or sleep through the night without waking up to drink.

I'm 6 months post treatment yesterday. I wouldn’t say I’m one hundred percent but I’m closer to one hundred percent than I thought I’d ever be just a few months ago, so that’s great. If you are going through treatments and would like to hear about what worked for me and could be helpful to you as well, let me know.

Everyone is unique and reacts to treatments and recovery differently but with several people I've read about there are many similarities. I hope this can help and give hope for a speedy recovery to anyone dealing with this horrible disease.

Dave


Dave

SCC May 2019
Both tonsils metastatic to 2 lymph nodes
Stage T1,N1,M0 age 50
Radical Neck Dissection and Tonsillectomy
5x Erbitux- 33 IMRT end 8/13/19
Clear PET 11/19
Feeling better every day!
Re: 6 months post treatment and counting [Re: cancersurvivor2019] #199801
02-15-2020 06:38 AM
02-15-2020 06:38 AM
Joined: Dec 2019
Posts: 19
J
Janey Offline
Member
Janey  Offline
Member
J

Joined: Dec 2019
Posts: 19
Hi Dave,

It's good to hear you are doing well after such an ordeal. Thank you for sharing your story.

I had a precancerous lesion removed from my tongue (over 1 cm and deep), but no recommendation as of yet for further treatment. I find this strange.

I'm also going back to the same oral pathologist this Thursday for 2 more biopsies at my request.

On Tuesday, I see my family doctor and will ask for a referral to an ENT and a lung scan. (Would a CT scan be the right one to ask for?)

I feel very alone and that I'm the one having to monitor and make arrangements for testing etc. Shouldn't it be the doctors?

Also, since the precancerous mass was candidiasis erythematous before it turned to precancer, I wonder whether the pathologist got all of it and whether I shouldn't be given fluconol and maybe radiation...

I also wonder if I haven't got cancer in my adenoids because food sometimes goes up the posterior nasal flap at the back of my soft upper palate.

Any feedback or encouragement would be welcome.

Thank you

Re: 6 months post treatment and counting [Re: Janey] #199804
02-15-2020 04:15 PM
02-15-2020 04:15 PM
Joined: Feb 2020
Posts: 4
C
cancersurvivor2019 Offline OP
Member
cancersurvivor2019  Offline OP
Member
C

Joined: Feb 2020
Posts: 4
Hi Janey,

I don't know how other medical facilities operate. Just speaking from my own experience, My family Dr. referred me to an ENT specialist who checked it out and ordered biopsy, CT Scan, PET scan, referral to chemo and radiation doctors, etc. Once I went to the ENT everything was set up by him.


I believe he simply followed a standard protocol which, in my case, looked something like this:

1) First was an ultrasound of the lump on my neck which was a lymph node.

2) Next was the biopsy of the lymph node which was positive for malignancy.

3) Next was the CT scan. (he ordered a PET but the insurance required a CT first).

4) After the CT he ordered the PET to see if they could locate the primary site.

5) Once the primary site was identified as my tonsils he scheduled the neck dissection and tonsillectomy.

6) When he did not achieve clear margins with the tonsillectomy he recommended chemo and radiation to, hopefully, eradicate any remaining cancer cells.


In my case the result of each step led to another step. If the lymph node had not been cancerous, I have no idea what the next step might have been.


After your surgery to have a lesion removed the surgeon didn't speak with you about their findings and what's next?


Dave

SCC May 2019
Both tonsils metastatic to 2 lymph nodes
Stage T1,N1,M0 age 50
Radical Neck Dissection and Tonsillectomy
5x Erbitux- 33 IMRT end 8/13/19
Clear PET 11/19
Feeling better every day!
Re: 6 months post treatment and counting [Re: cancersurvivor2019] #199814
02-17-2020 06:49 AM
02-17-2020 06:49 AM
Joined: Dec 2019
Posts: 19
J
Janey Offline
Member
Janey  Offline
Member
J

Joined: Dec 2019
Posts: 19
Thank you for detailing your procedures step-by-step, Dave.

I really appreciate the time you took to do so.

From what I understand I really need an ENT.

I'm scared to have my family doctor look into my mouth tomorrow, but it is necessary, in order to get the referral.

I don't check my mouth myself anymore because of fear.

I have stopped smoking and have gum disease as well.

The oral pathologist told me to check my mouth and come back in six months, she didn't do an exam or tell me what's next, she just gave me the results that it was precancer.

So, I've no idea what to expect... did she get it all? Why not radiation, too... I don't know.

I've booked an appointment to see her Thursday, so I'll need to come up with a list of questions... any suggestions would be welcome.

You see, I've another bump on the side of my tongue. The sides of my tongue has white patches, my inner cheeks have leukoplakia white patches and the upper left-hand side of the roof of my mouth is white the last time I checked .. I can feel and indentation now and the skin feels like sandpaper.

Last edited by Janey; 02-17-2020 06:54 AM.
Re: 6 months post treatment and counting [Re: cancersurvivor2019] #199829
02-20-2020 08:25 PM
02-20-2020 08:25 PM
Joined: Nov 2019
Posts: 6
S
SueBee65 Offline
Member
SueBee65  Offline
Member
S

Joined: Nov 2019
Posts: 6
Thank you for sharing, Dave! Your story gives me some encouragement. My husband’s last chemo and radiation was 12/26/19. He seemed to hit bottom in January. He has made small improvements but still tube dependent, significantly fatigued, and difficulty with no appetite, no taste, and difficulty with foods. It just feels like his progress is stalled and he’s not turning the proverbial corner that the doctors say is coming.


Support OCF


Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,440
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,744
Newest Members
Jojo1997x, rachelz, Deedee2855, cathyb43, MTtoWA
12344 Registered Users
Forum Statistics
Forums23
Topics17,705
Posts194,808
Members12,345
Most Online458
Jan 16th, 2020
Powered by UBB.threads™ PHP Forum Software 7.7.1