| Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2018 Posts: 71 Likes: 1 | Hello! Ok so I have a cluster of painful lumps that are on the left side of my tongue along with a patch of white. Just seen an ENT for this and he's pretty concerned. Biopsy is scheduled which is where my questions start.
I know I may be jumping the gun here but I am the type to BE PREPARED. I've been reading on here and already found a cancer center in my area (per advice here to use a center for treatment.) Is there any other advice that I need to heed? Again, I realize I am EARLY since I don't have a dx but I've been reading for hours and hours and I have several of the symptoms of the cancerous tumors such as ear pain on just the left side, sore jaw, swollen lymph nodes, overall tongue pain and the fact of the alarm on my ENT's face and his comment that I'm too young to be having to 'deal with this.'
I am sooo concerned with the costs involved. I am a single mom of 3 and have just enough money to pay bills every month and THATS IT. I don't know how people can afford to be off work to deal with cancer! I have nothing to sell to create a sort of nest egg so that's out.
Also, today is my 40th birthday! Cake and cancer on my mind today! That's normal right?? Lol
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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | Happy birthday despite the chaotic feelings!
My husband went to the doctor in early July. Even with all the tests, we never heard a definitive diagnosis until mid August, we heard some preliminary at the beginning though. It was a slow process.
Lots to learn here and these people know the ropes. My husband does not ask questions and does not do what they tell him to do to get through his treatments as well as possible. He has paid the price for it. I say listen to the experienced!
Best wishes for you on all this.
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Im so sorry you are going thru a scare right now!!! Hopefully this is only a scare and will not turn ot to be anything serious. Even an experienced doctor can NOT determine exactly what something is unless they do a biopsy and send the sample to a lab for the technician to examine and test. Then the doc receives a pathology report explaining exactly what it is. Ive looked at many photos that to me looked almost identical where one spot looked ok but really was oral cancer (IOC) and then on other pictures they looked really serious but nope they werent cancer. So you just never ever can tell and going by a doctors reaction of a visual exam, take it with a grain of salt. They are NOT certain, but they can give you a guess but its not accurate. Most patients with this sort of cancer can have many biopsies come back with negative results. Ive had many more negatives than positives. As far as the bills and working goes... I had to learn a long time ago bills to pay are something almost every single person has and sadly many live paycheck to paycheck... me too! No matter what best laid plans are made they dont always play out. I had set myself up to retire with a pension, 401K and SS but ended up never happening due to getting sick and not being able to do my job anymore. Things happen, people get sick and the darn bills pile up but to me there are far worse problems people can have... I can still walk and talk and most days feel pretty good so Im happy and OK. Other days I feel so bad I cant even dial a phone or get off the couch. Even if I had more of those bad days Id still look at it as Im ok as things could always get worse. If you would end up to have cancer dont worry we have a list of financial help places patients can go to and ask for help. Not all places on the list cater to everyone some are geographic others are by age or other criteria. Plus many treatment centers offer programs for patients who need some financial help. Some of these things are kept hush-hush unless the patient asks. Some programs have a bunch of hoops to jump thru before they give help but its worth it if it gets approved. Waiting is hard!!!!! Try yor best to not let it get to you. Stay busy and engaged with your children. Take it day by day, stay busy with positive things that keep your focus and your mind engaged to help make the time pass easier. Being busy with tasks that require you to pay attention is what worked for me. I never in a million years thought my doc was right and his suspicion was that I had cancer... but I did. I survived by the help from many of the great people here and listening to their advice. I also would tell myself to stop borrowing troubles from tomorrow. At that moment I had not yet been diagnosed so as far as I knew I did NOT have cancer and I went about my regular routines as much as I could. Its NOT cancer until the biopsy says its cancer! Worrying about "what if" has never helped anyone, not ever!!! All it does is stress people out and when people get upset and worried often they can become paralyzed by fear. Stress is NOIT helpful to anyone, its actually harmfuyl to patients and makes every single thing more difficult. Being a single mom is tough!!! If you can do that I have a feeling you are tougher than you think  Happy Birthday!!! ChristineSCC 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 | | | | Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2018 Posts: 71 Likes: 1 | I'm sorry about your husband ConnieT. Sounds soo stressful and I hope you are taking care of yourself through all of this.
ChristineB thank you for the warm welcome. I do feel like there's tons of support here so that is helpful. I'll be back on here when I get more information. This waiting stuff is for the birds!!!
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
| | | | Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2018 Posts: 71 Likes: 1 | Update: I have cancer. The ENT says it's at T1 but it's moving quick to a T2. I've been reading a TON and a lot on here and thanks to Christine's posts, I have researched and found that I have a cancer center nearby so THAT makes me SO happy. Tomorrow I meet with the ENT where I suppose he gives me more details on this diagnosis and refers me to an Oncologist. Here's the thing....I want to go to THAT cancer center BUT this cancer is spreading and I don't have a lot of time to mess around. I guess my question is, how do you get into a cancer center and is it a longer wait? I don't have time on my side to play the waiting game on this.
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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | hugs to you. just wanted to acknowledge your post though I have no answers for you.
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Feb 2015 Posts: 134 Likes: 7 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2015 Posts: 134 Likes: 7 | Why not go on the cancer center website and see if they have a "head and neck" department and who is on the staff.
Often on websites there is a way to get an appointment.
SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15 SCC stage 1, lower gum Mar '23, all lower gums and teeth removed
TLC356
| | | | Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2018 Posts: 71 Likes: 1 | So update....I got into the Cancer Center....they acknowledged that my tongue cancer is fast growing and surgery was needed quickly. I had surgery October 1st. I lost a fourth of my tongue which they used a skin graft from my neck to repair. I have an incision from the front of my neck to behind my ear for the skin graft and to remove all the lymph nodes from the left side of my neck. Right now I have gauze sewn into my tongue to hold the skin graft in place and a drainage tube in my neck. It's been wild but I'm home and resting comfortably.
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
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