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Shocked and Fast! #198985
09-06-2019 03:22 PM
09-06-2019 03:22 PM
Joined: Sep 2019
Posts: 1
Harrisburg PA
K
KarlaB Offline OP
Member
KarlaB  Offline OP
Member
K

Joined: Sep 2019
Posts: 1
Harrisburg PA
Hi Everyone!

My name is Karla and everything happened so fast! What started out as a mild irritation on my tongue and an ear ache quickly turned into a tumor on my tongue and down the side of my neck!

I have surgery scheduled for the 7th of October to have all kinds of fun stuff done. I'm still processing the whole thing

Oral cancer? How?!? I never smoked, I'm only a social drinker test came back negative for HPV. The only answer anyone can give me is something wa don't know the reason some one gets cancer or the type of cancer they may get.

I go from being mad one minute, scared out of my mind, to being very zen about things. I guess I haven't found balance yet but I know I need to be in a good place mentally going into the surgery. Any suggestions?

Re: Shocked and Fast! [Re: KarlaB] #198986
09-06-2019 05:12 PM
09-06-2019 05:12 PM
Joined: Jun 2007
Posts: 10,409
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: 10,409
PA
Welcome to OCF, Karla! Im so sorry reading what you have already been thru. You must be overwhelmed by so much happening in such a short amount of time. Luckily you found our site to help you with info and support.

We have been where you are and fully understand what you are going thru. You arent alone in having none of the most common causes for oral cancer (OC). Roughly 10% of OC patients/survivors have no known cause. I know quite a few people in the same situation. I guess not knowing exactly what happened makes it much harder to come to terms where you can eventually move past the why and onto accepting your situation. Im not sure how I would feel if I hadnt known what happened to cause the cancer? Im kind of embarrassed to say, I smoked and since have accepted the guilt of knowing I did this to myself. Regardless of what caused it, you may never know??? You are here now and taking steps to eliminate the cancer so you are heading in the right direction. Reading and learning more about OC will help to make you a better advocate for yourself. Theres tons of first hand info in posts and also page after page of in depth OC info on the main OCF site.

Whenever you tell people about your diagnosis, you will be asked questions and often people want to help but dont quite know to do. Start a list by taking down every single person who offers to help you full contact info and tell them you will let them know when the time comes. Down the road theres a million things that may seem minor or insignificant but for someone not feeling the best all those little things can add up to be alot to manage. For example mowing the grass, raking leaves (its almost that season smile ), taking the dog for a walk, taking out the trash, picking up/dropping off dry cleaning, if you have young children taking them out for the day so you can rest, cooking the family a nice home-cooked dinner, taking the kids to the movies or out to the playground, helping kids with homework or a school project, doing a load of laundry, picking up prescriptions from the pharmacy, grocery shopping (or now most grocery stores will shop for you and you just pick it up), shoveling snow in the winter, etc are tasks others can do to help. You may want to consider making one person your contact person so you only need to tell one person updates and that person can be in charge of sharing whatever you want people to know. It can be overwhelming and take a great amount of energy to continually update several people instead of telling just your one contact person.

Now is the time to start eating all your favorite foods as much as you can before any treatment begins. You are likely to get to a point where your ability to eat is temporarily compromised. It always seems like if whenever someone is unable to eat, thats when the food cravings happen the most. Enjoy eating now without being concerned about calories, weight gain or if something is healthy or a nutritional nightmare. Gaining a few pounds is alright. Especially if you are average or on the slim side, you should put on a few pounds to have a little buffer in case you lose weight from treatments or run into eating difficulties which unfortunately is something almost every person going thru this does.

Its NOT easy for everyone to handle the mental aspects of having cancer. We get it and its ok to lean on us if you need to. If you are having trouble processing everything its ok, most treatment facilities have therapists trained to deal with the challenges a cancer diagnosis brings as well as tips on how to overcome worrying. For me, I found staying super busy helped to pass the time. Whenever I started thinking negatively I would allow myself a few minutes to reflect then I physically got up and "changed the channel" by going to another room and doing something positive like cleaning out the closet. This became such a habit of avoiding "going there" that by the time I began treatments all the closets in my house were cleaned and organized. I even had such an abundance of time after doing the closets that I tackled all the dressers next. Time goes by quickly if you read a book that holds your interest, pick up a new hobby, watch a movie that requires you to pay strict attention to the plot, or any number of activities that require you to focus.

If you havent already done so a second opinion at a comprehensive cancer center (CCC) would be a smart move. Just remember, surgeons cut. Thats their job so a surgeon will always say surgery is the best choice just like any other specialist will recommend their services. If for nothing else, the second opinion would help to confirm what your original team of doctors suggested. Its perfectly fine and encouraged to put your faith in your medical team. Just be smart and get another specialists input prior to getting anything done.

Im sure there are tons of other things I could add on but I dont want to overwhelm you and more than you already are. Feel free to ask questions and we will try to answer as best as we can. As a group of patients/survivors and caregivers (without years of medical education, or degrees) we may not always know the answer but we always will try our best to help you as much as possible.


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: Shocked and Fast! [Re: ChristineB] #198987
09-07-2019 05:25 AM
09-07-2019 05:25 AM
Joined: Feb 2015
Posts: 64
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 64
Boston suburb
My experience is that because OC hits such a small percent of the population (I've read 25,000 per year, plus another 25,000 from HPV) that it is very important to receive treatment from a CCC which will have specialists in oral cancer.
Many hospitals and doctors deal with cancer but our's is very rare cancer and O C patients need care from those with very specific knowledge.


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

TLC356
Re: Shocked and Fast! [Re: tlc356] #198995
09-09-2019 09:01 AM
09-09-2019 09:01 AM
Joined: Mar 2018
Posts: 69
C
CM57 Offline
Supporting Member (50+ posts)
CM57  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2018
Posts: 69
I couldn't agree more about going to a CCC.
You may eventually see a Surgeon, Radiation Oncologist and a Chemo Oncologist.
It's a lot easier if they are at the same location.
That being said, before your 1st surgery, is the time to make sure any potential procedures are done in the current order and time frame, with consultation of all 3 doctors, if in fact Radiation and /or Chemo will be prescribed.
Best wishes.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Re: Shocked and Fast! [Re: KarlaB] #198996
09-09-2019 11:11 AM
09-09-2019 11:11 AM
Joined: Jul 2012
Posts: 3,253
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,253
NYC
Hi Karla,

I’m sorry for your troubles, and waiting is the worst! Sometimes you can move your surgery date closer as a month seems long off, but the patient may be fine with that, but sometimes it’s not for the tumor.

It can be related to drinking sometimes no matter how small, but there are cases which none is involved and are looking into other matters as a cause, some which we don’t know about right now!

I’m not sure what your treatment pkN is as mine being oropharyngeal, is different than oral cancer, but believe surgery is the first step plus or minus other therapies depending on the stage.

Good luck with everything!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Shocked and Fast! [Re: KarlaB] #198998
09-09-2019 02:08 PM
09-09-2019 02:08 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hello KariaB,

So sorry you have to go through surgeries due to cancer. You will be able to glean some good info here.
I agree with all others in that being at a Comprehensive Cancer Center is in your best interest and for best outcome. There, your case will go before a Tumor Board and the entire team invested in your case will put forth the needed treatments, and come up with a plan for treating you.

Stay calm and I hope you have access to an excellent Cancer Center!

Crystal



4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Shocked and Fast! [Re: Crystal J] #199000
09-09-2019 02:54 PM
09-09-2019 02:54 PM
Joined: Aug 2019
Posts: 3
NY
G
Gameoverman Offline
Member
Gameoverman  Offline
Member
G

Joined: Aug 2019
Posts: 3
NY
KariaB,

So sorry to hear you have this cancer. Please keep the faith. I too have tongue cancer and have done lots of research. My last doctor consult is tomorrow, I'm hoping his opinion will be the best. Find the best doctors you can and that will make a huge difference. The people here are great, remember that you don't have to do it alone. Good luck and hope to see many more updates on how you're doing. I will pray for you too.

Re: Shocked and Fast! [Re: KarlaB] #199024
09-11-2019 09:19 AM
09-11-2019 09:19 AM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Hello!

Feeling ALL those emotions in a random, rotating fashion is completely normal! I had tongue cancer also and it started as a small bump and then out of the blue it really started to grow! I got my cancer diagnosis on September 18th and had surgery on October 1st. I feel like had my surgery been put off longer than I would of lost a lot more of my tongue and would have to have had a rebuild. I got lucky and only lost a fourth of my tongue and they used the skin from my neck dissection to 'close' the side of my tongue the cancer was cut from.

I had all my work done by top cancer doctors at a CCC, the only one in this midwest and I have no regrets. They are completely knowledgeable on all things oral cancer and compassionate to no end!

My advice is focus your energy in making sure you are getting the very best care by the very best cancer doctors available to you! Then you will know you've done all you can to ensure a successful outcome and can try to relax and wait for surgery day!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Shocked and Fast! [Re: KarlaB] #199044
09-13-2019 02:10 AM
09-13-2019 02:10 AM
Joined: Jun 2019
Posts: 128
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 128
Hi Karla,

Welcome to OCF.
I too was in your shoes not so long ago. I had my surgery a month ago today and am doing really well.
One of the things that really helped me get through the emotional side was to meditate. I would (and still do) use meditation when I was having MRI's, PET scans, blood tests etc. If I was having a terrible night sleep whilst in hospital or at home, meditation allowed me to calm my mind. I still might not have had a good nights sleep but stopping my mind from doing that roller-coaster thing was so helpful.

Absolutely eat everything you want to eat. My husband asked me what my wish meal was and then he took me out for it. I've only had one day, so far, where I was upset that I couldn't eat solid food and that was last night because it was my husbands birthday and we usually order out. I ordered soup as I know I can have that, but I chose wonton soup thinking I'll have a try with eating a soft wonton. I cut it up into tiny pieces and tried to chew. All it did was whizz round my my mouth laugh I was so upset. I can laugh about it now as it's not the end of the world.

I hope you find your zen.


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 RT Start 17th Sept '19
2x cispltin

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