| Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Hello to all. Just getting a feel for this forum today . I’m definitely a new patient that has only had a positive tongue biopsy on June 20th and now scheduled for an initial consultation with an Oncologist. So much crying and anxiety yesterday. My greatest fear is that the cancer will be a higher stage due to delay in care. My dental technician saw the ulcer at which time I told her I had it for 3 weeks and would not heal and though it might be from eating too many tomatoes or acid foods. She took pictures of the ulcer on the underside of the Lt side of my tongue at that time (11 April) and had the dentist view before replacing a filling that day. His exact words were, “That’s nothing” and proceeded to work on the filling. So, for the next several weeks I continued to retry everything to heal it with no avail and finally went to an Urgent Care for assistance. The doctor there immediately referred me to an Oral Surgeon who saw me the very next day and scheduled the biopsy for 20Jun. 7 days later a terrible diagnosis of tongue cancer. Had the delay in getting a biopsy and diagnosis given the cancer time to progress in Stage? I’m so concerned now what might have been a Stage 1 could now be a 3 or 4. Condition has worsened since the biopsy. Tongue now has burning sensation, left side of my throat is tender when swallowing and I keep getting a fullness feeling in my lips, not to mention this persistent post nasal drip that came out of nowhere..... all since the Biopsy! I have to wait till 2 Jul for my consult with the Oncologist and everyday I feel worse. I know some of it can be anxiety but not all of these new symptoms. Can this squamous cell cancer progress this fast even since the biopsy?
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Feb 2015 Posts: 133 Likes: 7 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2015 Posts: 133 Likes: 7 | If I were in your shoes (and I have been) I would call M D Anderson and get an appointment ASAP. I say Anderson because I see you are in the Great state.
SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15 SCC stage 1, lower gum Mar '23
TLC356
| | | | Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Actually the Oncologist that I have an appointment with is retired Air Force and trained at MD Anderson in Houston Texas. Feeling nausea tested this morning. And havenent even started any treatment. Is s it possible that the biopsy site could be making me nauseated from drainage?
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 | Everybodys different but in my case, the C-cells spread to the left neck in 2 months, then to the right neck in 2 weeks I wonder you will have CT soon
T4aN2cM0 left tongue SCC 10/17 Moderately differentiated SCC PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17 Perineural invasion present Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18 PET - NED 05/18 CT - NED 07/18, 10/18 CT - NED 02/19, 06/19 MRI H&N, X-ray chest - NED 10/19 MRI H&N NED 05/20 CT - NED 10/20 MRI - NED 04/21 CT - NED 10/21 CT - NED 4/22.10/22 CBCT - NED 10/22
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Mokie,
Anything is possible, but I was thinking nerves may make you nauseas too. Tell your oncologist when you see him Tuesday, July 2nd which is right around the corner.
I do hope for a lesser staging, but try not to worry about it much, because you did all you can do at this point, besides picking the right medical team. I’m not familiar with tongue cancer staging, but it’s easy to look up. Some cancer stages like l and II are often treated the same as are lll and IV.
Keeping busy helps some patients deal with waiting, which is the worst. Try doing some of your favorite hobbies, spending time with people you like.
Good luck
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
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Like Paul said, nerves can definitely make you nauseated. I'm the walking poster child for THAT, alas. (That was long before my cancer, and has been a bane of my existence ever since. I have a severe panic disorder.)
On the reassuring side of anecdotes, I had a 'sore that wouldn't heal' for months, and doctors that tried multiple treatments, before the ENT finally said, "Some things just don't heal till you cut them out and let them start fresh." That's when we found out it was cancer ... but he did have the foresight to be cutting it and testing it at the same time, and going for clear margins. (This was done in hospital, under sedation, thankfully.) So I woke up to find out it was cancer, instead of going through any biopsies or whatever ... had no clue till that moment. And it was still a Stage 1 thing. You really just never know which way things are going to go. Hold on to the positive, till you hear it's otherwise. It helps.
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
| | | | Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Thank you for the feedback. I know my anxiety right now is through the roof so I’m sure it could be creating stomach issues. Finding out that it spreads to quickly just reinforced that the dentist who said it was nothing months ago may have cost me dearly. He definitely will not be following me as my dentist if I have to have radiation!
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Thank you, thank you thank you. Any amount of encouragement sets my emotions at ease.
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Stomach problems being treated as an ulcer at present. Guess the Oncologist suspicions the same as he e told me to. take Nexium. PET Scan tomorrow morning. More waiting.
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Mokie,
Good luck with your PET Scan! If you haveing stomach issues, you may want to sleep on an incline to help prevent acid reflux. They do have body sleeping pillows that help with this, and believe will position the body on the left side, which is supposed to be better. I just use regular pillows, but they can position your head downward at the neck if sleeping on your back.
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
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