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#194483 - 05/19/17 07:20 PM New Here & Recently Diagnosed  
Joined: May 2017
Posts: 2
Gardener51 Offline
Member
Gardener51  Offline
Member

Joined: May 2017
Posts: 2
Hello,

I am so thankful to have found this website. I have already learned a great deal from reading some of the posts. My heart goes out to anyone who has heard the words "you have cancer".

Much to my surprise and dismay, I was recently diagnosed, through biopsy, with squamous cell carcinoma of the maxillary alveolar ridge. My doctor has told me that treatment will include surgery and radiation. Due to the location part of my palate will be removed, as well as some teeth. I will need to wear an obturator to fill the hole that will be left between the sinus cavity and my mouth. After looking at photos of an obturator, I am even more worried. It looks so big! I have CT scans coming up and consults, then surgery depending on what the scans show.

I am trying to stay positive through all this. I've been fortunate in not having any health issues other than low thyroid. That is the only medication I take.

Again, thank you all. I will be a regular visitor from now on.


4/25/17 SCC of the left Maxillary Aveolar ridge
6/05/17 Maxillectomy Surgery Tumor grade 1 well differentiated,clear margins. Removed part of hard palate and all the rest of my teeth. My obturator and me become friends for life.
6 weeks RADS coming up in July
#194484 - 05/19/17 08:31 PM Re: New Here & Recently Diagnosed [Re: Gardener51]  
Joined: Oct 2012
Posts: 831
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 831
Toronto, Canada
Welcome to the forum. I am sorry you have to join our circle of friends, but on this forum you will find that there are a lot of knowledgeable members and everyone is supportive.

It is important to stay positive as this will make the cancer journey easier for you. Also, it may help if you try to take one day at a time. When my husband was in treatment, I learned to not worry about the outcome of a CT scan or a consultation with a doctor until I was actually in the consultation room. I think that helped me to roll with the punches.

It is likely that radiation will cause your thyroid to go even lower, but, really, as you already know, it's only taking a thyroid supplement a day. In the meantime, you may want to go out and eat everything that you love eating since surgery and radiation will mean that it will be a while before you can find enjoyment in food once you start treatment.

Glad to know you plan to be a regular visitor. We will certainly want to hear how you're coping from time to time. I'm sure ChristineB will be along shortly to tell you about hydration and nutrition, so I will leave that up to her.


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.
#194485 - 05/19/17 09:18 PM Re: New Here & Recently Diagnosed [Re: Gardener51]  
Joined: Jun 2007
Posts: 9,625
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,625
PA
welcome to OCF, Emily! Im very sorry you have a need for our site. We will help you get thru whatever challenges you are facing. Our members have been thru similar situations and can help you with info and support. Sometimes just knowing you arent alone in this is the best medicine you can get.

Since you already have some thyroid issues, its imperative to get blood work done and a baseline reading for thyroid levels before you start any treatments. Radiation can cause problems years later with a patients thyroid function. Taking one little pill a day easily corrects this issue, as Im sure you already know. I've taken thyroid meds daily for around 7 years, maybe longer.

Make sure you eat all your favorite foods prior to having anything done. Your sense of taste and ability to eat may be impaired for several months During radiation your intake and water consumption will need your daily attention as this will make or break you with how easily you get thru rads.

Read and educate yourself about your illness so you can be a strong advocate for yourself.


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
#194538 - 05/26/17 01:27 AM Re: New Here & Recently Diagnosed [Re: Gardener51]  
Joined: Feb 2013
Posts: 37
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 37
California
Hi Emily,
I'm so sorry to hear of your diagnosis but I'm glad you are reaching out and educating yourself on this cancer we here all share. It sounds like our situations are very similar. I was diagnosed in 2010 with a tiny spot in the gum tissue of my right alveolar ridge. I had consults at both UCSF and Stanford and had surgery at Stanford similar to what you describe you may have. They removed teeth and gum tissue and I had an obturator, but the hole was so small it filled in and I just wear a prosthesis which no one even notices. I would be happy to answer any questions you might have. There aren't very many of us here with the cancer in this area of the mouth. I had low thyroid as well, before the diagnosis, and they just monitor it regularly and up the dose when necessary. Stay positive and take it a step at a time!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
#194711 - 06/22/17 08:09 PM Re: New Here & Recently Diagnosed [Re: Teacher Karen]  
Joined: May 2017
Posts: 2
Gardener51 Offline
Member
Gardener51  Offline
Member

Joined: May 2017
Posts: 2
Hi Karen,

I am happy to meet you!

It has been a little over 2 weeks since I had surgery. Each day I am a little less tired, although I am usually in bed by 9:00 - can't keep my eyes open.

The dentist suggested removing my remaining teeth because of periodontal problems. She said major complications could develop during radiation. I took her advice and they were removed during surgery.
Eating has been a challenge, as it is for many people here. I have found a lot of good ideas right here on this site. I'm very thankful for that.

The opening between my mouth and sinus cavity is rather large, so I must wear an obturator. It's a pain, but I have to admit I do much better when I am wearing it than when I take it out. Speech and eating are impossible without it. I have to go back once a week to the dentist at the CCC so she can make adjustments to the fit. Someday, a long way down the road, she will begin to add teeth. Looking forward to that.

Thanks - Emily


4/25/17 SCC of the left Maxillary Aveolar ridge
6/05/17 Maxillectomy Surgery Tumor grade 1 well differentiated,clear margins. Removed part of hard palate and all the rest of my teeth. My obturator and me become friends for life.
6 weeks RADS coming up in July
#194716 - 06/24/17 02:29 AM Re: New Here & Recently Diagnosed [Re: Gardener51]  
Joined: Feb 2013
Posts: 37
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 37
California
Hi Emily,
So glad you came through the surgery well. Take it easy and recover well as the radiation ahead will be a challenge. It sounds like they did not give you an obturator with teeth? I don't know what kind of insurance you have, but once we proved to the insurance company that this prothesis was not cosmetic but a necessity, they payed for the temporary and then the final. They will usually cover one every five years, but in my case, I kept having recurrences with more of my jaw and teeth removed so they had to make new ones every couple of years. The whole process takes about a year because your mouth will continue to change during and after radiation. Check with your insurance, but I can't imagine you having to go months without teeth! I am a big fan of something called Scandi shakes that my radiation oncologist recommended when I couldn't stomach the ensure and boost shakes. You can get them on Amazon and you just mix them with milk so they taste like a milkshake. I also purchased a Vitamix which I still use almost daily to make smoothies so I can get enough protein (made with protein powder). Feel free to message me anytime with questions. We will be out of the country in July-August, but I am happy to help when I can. My best to you as you navigate this new journey.
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.

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