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Hello to whomever reads this... I found this site while researching two topics: vitamins and herbs to aid in nerve regeneration post-op and acute shoulder pain associated with surgery (neck dissection).

I am 38, female and generally in excellent health - aside from having been diagnosed with Squamous Cell Carcinoma in late February. I don't smoke, drink only socially and am physically fit. I have always enjoyed a fairly active lifestyle and maintain a healthy diet (sure, I'll have cookies or ice cream now and then - I do have a sweet tooth). My cancer story happened so fast, I still have a hard time wrapping my head around it all.

Back in December, a piece of a partial crown I had on a right, rear molar broke off while I was eating and when I bit down on the broken piece, it chipped the tooth next to it. I had the crown replaced - which took a couple of weeks. Between the time the original crown broke and when the new crown was put in, the jagged edge of tooth next to the crown persistently rubbed against the right bottom of my tongue so when my dentist put the new crown in, I asked her to please smooth out the sharp edge as it was irritating my tongue. She quickly obliged and I was scheduled for a cleaning in late February.

The irritation, which looked like nothing more than a tiny red spot on my tongue, persisted so when I went for my cleaning in February, I mentioned it to my dentist in the hopes that she could prescribe something to make it go away. When she asked me: "how long has this thing been hanging around now?" and I responded that I wasn't sure - I knew it was around the time she put in my new crown, she took a look at my records and saw that it was back in December. This must have set off some alarm bells though she seemed very calm but referred me to an oral surgeon to have a biopsy, which I did right away.

Even the oral surgeon seemed as though it was probably nothing, though he said there was a "slight" chance that it could be an oral cancer (I guess he had to provide me with every possibility). The biopsy was on a Thursday and the following Monday, the oral surgeon himself called my cell phone as I was driving home from work and told me that I had Squamous Cell Carcinoma - cancer. I immediately called my husband for emotional support.

From that point on, it was a slew of doctor's appointments, PET/CT scans, bloodwork, etc. all culminating in my surgery on April 11th. My doctors originally anticipated having to remove almost 1/2 of my tongue and some lymph nodes (just in case) as well as flap reconstruction. The surgery was anticipated to be 16 hours minimum. I supposed that I was somehow fortunate because when my surgeon got in, only about 1/4 of my tongue needed to be removed though they still took out 29 lymph nodes (to be safe).

My first post-op follow up was on April 23rd during which my doctors told me that all pathology on my lymph nodes returned clean and I would not need radiation or chemo. I cried from relief during that visit. All-told, my surgery ended up lasting just over 3 hours and my hospital stay - originally forecasted to be 7 - 10 days, turned out to be 4 days in the ICU, after which I was discharged.

I have been obsessively diligent about keeping my neck wound clean and slathered with bacitracin and it appears to be healing well. Most of the sutures have dissolved. The hole in my neck where the drain was is pretty tiny but there is still swelling around the right side just below my jaw. I still have stitches in my tongue, which are driving me insane but at least I can eat solids again. The right side of my tongue now feels like it's burning - a slight burning sensation, which I find annoying.

My biggest issue right now is acute shoulder pain in my right shoulder. I also am very weak in that shoulder - I can only raise it (horizontally from my body) about 25% which I find extremely frustrating as I am right-handed. I also have greatly reduced range of motion when turning my head. I can turn it to the right almost all the way, but only about halfway to the left.

I am just baffled by this - it makes no sense to me. I have no genetic predisposition to any sort of cancer and being a non-smoker - I can only attribute this to my chipped tooth. Before that, I had no problems in my mouth.

Today I went to the supermarket and for the first time, a little girl - about 5 or 6 maybe - was openly gawking at me with an almost frightened look on her face. She was looking right at my scar because otherwise I'm not an altogether scary looking girl. It really rattled me but I tried to play it cool. I've been on short-term disability from work until my docs release me to go back but I'm afraid of this reaction from some of my colleagues. I'm sure I'm just being silly but I feel somehow deffective now.

Anyway - I had intended this first post to be short and to the point but I guess I had more to say than I realized...


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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Welcome to OCF, Pepper. Glad you have found this forum which is full of survivors and great info.

Many neck dissection patients have the limited range of motion problems, myself included. For me its my left side which is the bad one. This is something that can improve with physical therapy.

Im sure your looks are just fine. Small children can sure be very observant! Your work colleagues should know better than to stare (at least I hope their manners are better than that!). Once you recover from the surgery, your scars will be barely noticeable. To you though, you will always know they are there.

Best wishes with your continued recovery!


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
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Hi,
Sorry for what happened to you. Lots of us feel the same, which means you are in the right place to vent.

Ok, you need to get your docs to refer you to a very good physical therapist--Christine's thought as well, but also one who works with head and neck patients.

You'll see I had the same surgery, but one bad lymph node so add radiation & chemo to the mix, which generally makes the after effects worse. But I did not experience the shoulder pain, except for maybe some twinges early on. Nevertheless I got a referral to a PT, which I consider one of the smartest things I ever did. She had me on a lot of exercises as my neck was so weak. I also learned lymphedema massage, which only some PTs are qualified in. I still use the lymphedema massage now. I still do the exercises for head and neck now.
You will feel so much better about yourself if you do this.

Doctors are not very good about being proactive with physical therapy, so you ask, and do not take "no" for an answer. You need to get on the better of side of the shoulder pain, and the exercises you do now will benefit you down the road.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Thanks! I think my doctor's nurse assistant must be totally over my emails by now but any time I have an issue or question, I email her and she has been really great about responding to every one of my concerns. I had already made up my mind that I will be extremely insistent with my doc at my next follow-up that he prescribe physical therapy. Most of the time I'm not in pain but when it hits - almost always late afternoon - it is unbearable. I worry how I'll manage once I run out of Lortab, which I intend to make sure he understands. So far, a combination of alternating heat and cold, biofreeze, Lortab and gentle massage provided by my wonderful husband does help with the pain but not the range of motion, which is why I want the PT.

Putting my hair in a ponytail is exhausting. I have to push my elbow against a wall to hold my arm up so that I can use it. Same thing in the shower when I wash my hair...


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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I had to have physical therapy, also to help me raise my arm. It really did help. My therapist also gave me exercises to do at home. My ENT was reall good at referring me as soon as I told him that I was having problems. Pepper, I never smoked, either, and was a light social drinker. I was also negative for HPV. My ENT told me that he has seen a number of women my age who are getting this, but it seems to be no reason why. His theory is that it might be some sort of virus, one that hasn't even been discovered yet. I was also very healthy. In fact the last time I had been a patient in a hospital was when my son was born, and he was 30 years old when I was diagnosed. Good luck, you have come to the right place for answers and support!


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Hi there - welcome! As you can see all of us who've responded except Christine have had the same surgery though we've also had more treatment (rads chemo) we also have the same lack of predisposition - and I like you had a very similar situation,though mine went on for about 6 yrs (I'd had a bad molar then capped thn a dx of cancer deoite 2 negative biopsies. - physio will help - lymphatic massage I'll help, your scars will heal an fade - you're very lucky in that they caught it early and thngs ended up bein less than you expected. However, do keep a close eye on your neck and mouth. And nudist lumps or bumps high tal it back to the drs thi cancer can be sneaky. So it should b treated aggressively, your dr sounds very good. Hopefully this is the end of it... Hugs!!! smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Pepper, it does get better! I'm running a coulpe months ahead of you and finding it steadily improves. Worst time is trying to roll out of bead in the morining, and then anytime you sit too long. The entire neck upper shoulders both sides, then of course the impacted arm. Just keep moving, stretch your arm out and use fingers to walk it up / down a wall as a regular exercise. Hurts like heck, but my dr said to expect a near complete recovery of motion... So glad you caught those tongue symptoms early!!


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
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Wow - I'm completely weirded out by how many of you had none of the "common" factors as well. Am I the only one who thinks that something doesn't quite add up? My mom has a theory that my partial crown (the one that broke while I was eating) may have been made of some material that, when my chipped tooth created the irritation on my tongue, the "foreign" material of the crown had a clear path to enter my cells... The crown in question, because it was not traditional, was made of a composite/resin type material... I can think of no other reason for cancer to appear in my case. As I said, we have no genetic predisposition to cancer in my family, I don't smoke, active lifestyle, eat well, maintain good weight... Seriously, I haven't had so much as a cold in years. I have mild seasonal allergies and I do have ADHD, but neither of these would be precursors to oral cancer.

I'm not walking around thinking "why me, why me??" although at first I did - but I am interested in understanding how this happened - if that can be determined, perhaps others can be spared this experience...

I was treated at MUSC (Medical University of South Carolina) which is a learning medical facility so not only did I see my main doctor who is the director of the ENT oncology department, I saw a slew of residents as well. Hell, I signed papers letting them use my biopsy tissue and blood work, etc. for educational purposes.

I understand why a smoker or smoker + drinker might end up with cancer - cigarettes are carcinogenic after all - I understand genetic predisposition and perhaps even advanced age + poor oral hygiene causing this but nothing about my cancer and its very, very sudden appearance make any sense at all.

I am beyond obsessive about my mouth ever since I had to have a deep scaling when I was in high school due to a gum infection. Since then, I have been very aware of any changes in my mouth. I suppose that is why I found the lesion so early on - something just wasn't right and even though it seemed like such a tiny thing - I mean it looked like nothing more than a tiny red, slightly raised area but it felt constantly irritated. The irony is that it irritated me enough that I mentioned it to my dentist but just before that, I told my husband that I was going to bring it up to my dentist and he said "why would you tell your dentist about that?" and I said, "well it just seems logical, I mean she's inside my mouth so I would think she might know how to help me get rid of it..." I know he has kicked himself several times since my diagnosis, poor guy - but then my husband (like many men) avoids doctors and always plays things down when it concerns health, much to my dismay.

If nothing else, I have learned that NOTHING is too insignificant to at least discuss with your doctor.

But I am still very curious and would really like to know what caused it. A 30-year old survivor I met was diagnosed with her SCC when she was 24!!! Also a non-smoker, social drinker, otherwise healthy... She wore Invisilign braces and the lower set had a sharp edge that rubbed her tongue. She mentioned it repeatedly to her orthodontist who initially brushed it off and then had her stop wearing the braces altogether. She finally went to a doctor friend of hers to have a biopsy and since she is a nurse, she knew how to read her own path reports - needless to say that was a shock for her - for 9 months she went undiagnosed after she brought up the soreness to her orthodontist, during which hers spread to her lymph nodes. She had half of her tongue removed and flap reconstruction and many lymph nodes taken out and chemo and radiation... at 24!

I have to think that there is an underlying cause and for all we know, they may all be linked somehow...


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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Maybe I missed this in all the above posts, but Pepper, did they check your biopsy for HPV?


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Kathy - good question... I honestly do not know. No one ever mentioned it to me so I assumed they hadn't - but I could be wrong... I did ask my doc's assistant via email but she never responded to that specific question...


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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