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Swapped Hospitals #198525
06-18-2019 01:56 AM
06-18-2019 01:56 AM
Joined: Jun 2019
Posts: 58
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
D

Joined: Jun 2019
Posts: 58
Hey everyone,

I didn't gel with my Head & Neck specialist, or much of her team. When I got my diagnosis from a dental team they made me feel as if I was in safe hands, but the next day I met with the team at the hospital which I was going to be treated at and I found their bedside manner very blunt. I understand my cancer is life changing, I understand that my treatment is going to be tough, but I felt like the wrote me off.

They recommended I went for a 2nd opinion at a different hospital, who said almost the same thing to me but they said it in such a way that I felt the fight in me want to get going. Team 2 were far more positive and pro-me! Team 2 also introduce me to a 3rd team (crazy right!) who said I fit the criteria for an immunotherapy trial (689). It would run with my treatment.
They said that I would have 2 doses of immunotherapy before surgery to try to reduce my tumour (my tumour covers the left latteral side and is 1.5cm over the halfway point into the right. They will reduce 2/3 to 3/4 of my tongue. The base is looking good though). I will then have a partial glossectomy, neck dissection on both left and right, followed by reconstruction.

I'm going to have 30 sessions of radiotherapy and chemo thrown in with the immunotherapy on top.

I met Team 3 last week and their encoragement and positivity blew me away. They were honest and gave me worst case vs best case, which is far more than Team 1 did.

So for anyone out there who is at the beginning of this awful journey, always get a 2nd opinion and if you don't get on with your team then do find yourself someone who makes you want to live and fight to live.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Swapped Hospitals [Re: Dizz_zzey] #198534
06-18-2019 02:06 PM
06-18-2019 02:06 PM
Joined: Jun 2013
Posts: 337
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 337
alabama
Awesome! So glad you found people you can work with! Good luck!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Swapped Hospitals [Re: Dizz_zzey] #198689
07-11-2019 04:45 PM
07-11-2019 04:45 PM
Joined: Jun 2019
Posts: 6
C
Charly1 Offline
Member
Charly1  Offline
Member
C

Joined: Jun 2019
Posts: 6
Good job!


Stage I floor of mouth cancer 2012. Surgery only.
Recurrence stage IV floor of mouth October 2018.
Surgery, 2 rounds of chemo and 35 radiation treatment.
Completed treatment March 2019.
Female 57

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