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Can't believe I'm here posting again #199402
11-07-2019 12:14 PM
11-07-2019 12:14 PM
Joined: Jan 2009
Posts: 476
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slim Offline OP
Platinum Member (300+ posts)
slim  Offline OP
Platinum Member (300+ posts)
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Joined: Jan 2009
Posts: 476
PA
I seriously was not sure which forum to post this under since the doctors say this is not a recurrence. As you can see from my signature my husband was diagnosed in 2009 with Stage IV HPV+ Base of Tongue cancer. Life has been amazing for the past few years even while dealing with some minor after affects from the radiation and hearing loss from the chemo. John discovered a sore on the left side of his tongue a few weeks ago. He also had to have a root canal done 3 weeks ago and a tooth extraction next to the lesion last week. He is currently day 6 of 10 hyperbaric oxygen dives. When his oral surgeon did the biopsy he was honest with him and said it didn't look good. He called John on Tuesday that the biopsy was positive for HPV- squamous cell carcinoma. He called down to the CCC and got him in with their top doc yesterday. I sort of knew what the prognosis and treatment plan was going to be having been on these boards for years, but it's still shocking and hard to hear. He is going for a PET Scan on Monday and an MRI on Tuesday to try and determine how large and invasive the tumor is. His original tumor was on the right base of tongue and since this is on the left and he is 10+ years out of treatment his doctor said that it is not a recurrence. He will be having a partial glossectomy with reconstruction flap from his forearm. He will also do a left neck dissection and will be placing a trach and nasal feeding tube. He said that John already has limited tongue mobility from all the radiation he received. He said the main objective is to get clean margins and function and mobility to the tongue.

To say I am beyond scared sh*tless is an understatement. I just can't believe we are here again. I guess I was naive in not knowing or having heard about people getting oral tongue cancer after base of tongue cancer. I am very confident in his doctor, and know he is in good hands. It takes me an hour to get to the city so I'm trying to mentally prepare myself for what lays ahead. Thanks for letting me share and vent. Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Re: Can't believe I'm here posting again [Re: slim] #199403
11-07-2019 04:09 PM
11-07-2019 04:09 PM
Joined: Mar 2018
Posts: 70
Maine
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Vicky1 Offline
Supporting Member (50+ posts)
Vicky1  Offline
Supporting Member (50+ posts)
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Joined: Mar 2018
Posts: 70
Maine
Sorry you've gotten this news, Wanda. <3 It is hard to be back, thinking about surgery again. I just went through a recurrence with my dad. You can do this! One day at time. You've got great doctors and your hubby is strong.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Can't believe I'm here posting again [Re: slim] #199406
11-07-2019 08:46 PM
11-07-2019 08:46 PM
Joined: Oct 2019
Posts: 11
Abington, PA
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EileenL Online
Member
EileenL  Online
Member
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Joined: Oct 2019
Posts: 11
Abington, PA
Wanda, I am so sorry to hear all that you and your husband have been through and now you're facing more. My husband's doctor is also Dr. Shanti and I can't say enough good things about him and the whole team, but especially him. He's just got a really nice way about him. I'll send good thoughts and vibes your way!

Re: Can't believe I'm here posting again [Re: slim] #199407
11-08-2019 03:45 AM
11-08-2019 03:45 AM
Joined: Jun 2007
Posts: 10,401
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,401
PA
Oh Wanda, NOOO!!!! I am sooo sorry to read about Johns cancer diagnosis!!! Its always so shocking when reading about a new diagnosis in our old-timer members. Im sure thats an understatement for the shocking news you received out of the blue.

Sounds like he is in very competent hands at a top CCC. As you already know, thats the perfect place for complex cases like Johns. This time around you know the medical jargon and have a general idea of whats ahead.

Please keep us updated as things progress. We're all in your corner. Im wishing you both all the very best with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Can't believe I'm here posting again [Re: slim] #199410
11-08-2019 07:15 AM
11-08-2019 07:15 AM
Joined: Oct 2012
Posts: 1,151
Toronto, Canada
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gmcraft Online
Assistant Admin
gmcraft  Online
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,151
Toronto, Canada
Wanda,

I’m so sorry you and your husband need to start another fight. Oral cancer is really an insidious, cruel disease. Do keep us posted on developments.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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