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New to forum #200267
07-21-2020 03:25 PM
07-21-2020 03:25 PM
Joined: Jul 2020
Posts: 1
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Noel Offline OP
Member
Noel  Offline OP
Member
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Joined: Jul 2020
Posts: 1
Hi everyone
My name is Noel.
I was diagnosed with SCC June 4, 2020. I do not know what stage
I will have surgery on July 31, 2020
I know they will remove 4 teeth but the cancer seems to be fairly localized --- only time will tell
I am concerned about peoples post surgery problems - eating and drinking, talking, swallowing, duration of pain and anything else any of you can tell me.
I simply feel rather lost!

Do I always come to my "introduction" to ask a question? If not what do I do? I'm sorry but I can't seem to find an answer to this within basic information.

Last edited by Noel; 07-21-2020 03:47 PM. Reason: change icon and add question
Re: New to forum [Re: Noel] #200269
07-21-2020 06:56 PM
07-21-2020 06:56 PM
Joined: Jul 2020
Posts: 3
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Travisty Offline
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Travisty  Offline
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Joined: Jul 2020
Posts: 3
I am a survivor of Spindal Cell Sarcoma (2015) on my lower right mandible which they removed 4 teeth & 3mm of jaw bone. No Chemo/Radiation. Recovery itself was painful but not as bad as I thought it would be. I ate a minced & moist diet for a few weeks while the healing took place. I didn't have any long term swallowing problems. Because of the bone loss on the jaw I wasn't a candidate for implants & the tissue on the jaw grew back as sponge mucosal tissue & can't wear a partial. It took a while to get used to chewing on one side and I have to be concious of taking smaller bites & thoroughly masticating my food. It takes a while to eat. Hopefully you will be able to have a partial or implant.
I had surgery for a SCC stage II on 4/30/20 on the left side of my tongue. The surgery went very well, only taking a third of my tongue. They removed all the lymph nodes on the left side of my face. I have nerve damage & very little feeling below my jaw line. The Radiation was the worst part & I had my last of 33 treatments on 7/10/20. Liquid diet since 6/14 but I'm starting to eat small amounts of minced & moist food. Swallowing gets better each day. I didn't get a feeding tube but if I had a do over I probably would have. Lost 50 pounds but I had it too lose. Best wishes...

Re: New to forum [Re: Noel] #200270
07-22-2020 03:10 AM
07-22-2020 03:10 AM
Joined: Jun 2007
Posts: 10,499
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: 10,499
PA
Welcome to OCF, Noel! You are no longer lost!!! We have been where you are and completely understand what you are facing and will help as much as possible. Im sorry you have a need for our assistance! Getting a SCC diagnosis can be a terrifying time full of unknowns that can easily become overwhelming. Dont worry, you're in the very best place to connect with oral cancer (OC) patients/survivors and caregivers who have been down the same path. We're able to provide you with important, honest and correct medical info along with the support everyone needs when facing cancer.

One of the very first things you will learn about OC (it actually applies to all medical conditions), is that everybodys different!. No matter how much patients appear on paper to be similar, no two patients will ever be exactly the same due to soooo many variables... its impossible. What one patient struggles with may barely affect another patient even when the two patients seems to be very similar. Every patient will respond to medications, treatments, procedures, recovery, etc in their own unique way. So many variables within a rare type of cancer diagnosis makes it difficult to compare or predict what could happen.

If you havent yet gotten a second opinion, you may want to consider getting one prior to starting any type of treatment. Always remember, surgeons cut and when something is removed it can never be returned to 100% functionality. Surgeons recommend surgery and radiation oncologists advise rads. All the info newly diagnosed patients are learning can be overwhelming!!! Back when I was first diagnosed I had no idea there was such a thing as oral cancer or someone could end up having cancer in their mouth, Id only heard about the most common cancers like lung, prostrate, ovarian, pancreas, etc. All this was shocking to me who had never had anyone with cancer in my family or known anything or anyone who had it. Sorry for getting off track, I t3end to do that and I dont mean to intentionally be confusing. In the US, comprehensive cancer centers (CCC's) are the top cancer facilities where the best of the best work with a team based approach with the newest proven techniques, medicines, etc. This is not to be confused with some lesser strictly for profit facilities which include the words "cancer center"' in their name but they pick and choose which patients that fit their own criteria only taking patients with certain types of cancer if they are easily cured. Another option is very important and might be easiest to get done thru the internet. Some CCCs patients can send their medical records to receive their opinion thru email which works great for patients who live a great distance from the CCC. Theres assistance with flights/transportation, lodging, financial aid and many other things but if you dont speak up to be your own advocate or have your caregiver do it then you will not automatically get info on all available options. Please dont let location be the deciding factor for your fate!!!

Right now, take it day by day. Every single day make it a goal to stay busy doing positive things, eat as much as possible especially if you are average or slim sized, and line up some helpers. Unfortunately not everyone is able to deal with facing close friends and/or relatives cancer diagnosis and head for the hills, but others less close to you will surprisingly step up to the plate and become the support every cancer patient needs. If you dont already have someone to help you, its necessary to select someone to be your caregiver. Everyone needs help and its not easy for some people to accept it but it is a necessity. I cant stress enough just how vitally important intake is!!! Make sure you eat all your favorite foods and have dessert too. Almost every oral cancer patient has their ability to eat, taste, swallow, etc temporarily compromised when they have oral cancer. For most its just temporary and a major annoyance! At the very least OC patients need 2500 calories and 48-64 oz of water every single day for at least a year, possibly 2 years as many who have complex cases have long recoveries where extra nutrition is necessary to heal. I'll go into more detail another time, as you read thru posts you will see I can be quite a nag about intake. After being hospitalized a few times for malnutrition and dehydration where I was so sick and debilitated I could barely walk by myself, talk or let alone have the mental stamina to carry on a conversation. I felt soooo horrible that I thought i was in the beginning stages of dying! Thankfully I was not dying!!! I was dehydrated and malnourished which led to my feeling so bad. I hate to see anyone else on that same path so I try to prevent other OC patients from experiencing it by nagging about intake.

At this time along with eating and drinking all your favorites, make a list of contact info for everyone who offers their assistance to you when they learn of your OC diagnosis. You may want to select one person to be who keeps everyone informed of your progress. Be prepared to hear a million stories and advice from people who have no idea about what they're telling you. Everyone suddenly becomes an authority and just has to share it with the cancer patient and/or their caregiver. Theres tons of fake cures quack doctors promote from 3rd world countries backwoods secret clinics. They sure can sound convincing as they recant their stories of their neighbors brother who 5 years ago worked with someone whose mothers lawn maintenance person had cancer in 1996 and took XYZ every day and POOF! their cancer was magically cured and today they are in perfect health and enjoying their new life after winning the lottery for the 3rd time. Kinda extreme but Im sure you get the point smile

Im sending you a private message (PM) so watch for the tiny blinking envelope next to your name near the upper right of any page and click on it. That PM will include a link you need to click on to get something written for new members who are beginners with the most commonly needed assistance to make navigating the forum easier. Theres also tons of valuable info on the main OCF pages as well. Its a different set up there, without having the individual input of other members who can answer your questions. On the main OCF site, you will see many articles and excerpts from vetted medical resources so rest assured OCF ONLY provides correct, up to date medical info from verifiable science based resources. Monitoring is one very important major difference that sets OCF apart, our site is one of very few sites that does internal monitoring plus has several other behind the scenes individuals and organizations overseeing our forum and main site. Health on the Net has awarded their coveted badge which is assuring OCF always follows their strict guidelines with ONLY giving factual science based info and operates above and beyond other websites.

Any questions, please feel free to ask and we will try our best to help. Below are several links you should find helpful. Hang in there!!! Now you have us to help get you thru whatever path your cancer takes you on. Its ok to lean on us for help, we completely understand what you are going thru and will assist you as much as possible... you're part of our online family now smile



NCI list of CCCs

US News Best Hospitals List

Main OCF Site, Understanding Oral Cancer

Main OCF Site, Financial help for OC patients including flights, lodging, etc








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: New to forum [Re: ChristineB] #200271
07-22-2020 04:25 AM
07-22-2020 04:25 AM
Joined: Feb 2015
Posts: 92
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 92
Boston suburb
I've posted this in the past, I hope it helps.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest some thoughts for newcomers.

1) Since oral cancer hits only about 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff (CCC)

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

In some cases where they take lymph nodes expect that they will do an RND, (radical neck dissection). Be prepared for a scar across your neck.

If your cancer was not caused by HPV, I've learned that drinking alcohol can cause the cancer to come back.

My guess is that things will look a lot better in a few months.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: New to forum [Re: Noel] #200291
07-28-2020 02:59 AM
07-28-2020 02:59 AM
Joined: Jul 2020
Posts: 8
A
Andy Columbia Md Offline
Member
Andy Columbia Md  Offline
Member
A

Joined: Jul 2020
Posts: 8
Hi

I was diagnosed last October and had surgery in November. I wish I had gotten second opinions on surgery and radiation. I would second guess myself less. My surgeon said even though the cancer was not in the bone they needed to take out bone and teeth to get clear margins. It ended up being 10 teeth.

They took out the lymph nodes in my neck as a precaution. They took found cancer In only one lymph node. They still recommended radiation. That was worse then the surgery

It’s not that I don’t trust my doctors. I just don’t always think our agenda is the same.

The most difficult part for me was acceptance. There is a new normal. Look for the good in every day. Stay hopeful

Good luck to you.


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