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#193642 12-25-2016 09:35 PM
Joined: Dec 2016
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kashmir Offline OP
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In 2010, I noticed that I had a sore on my tongue (white leukoplakia with a red part) that wouldn't go away. Not long after I first noticed it, I had it (at least the leukoplakia, maybe the red part too) biopsied in my dentist's office (I was a graduate student at the time), and the pathology report said it was an epithelial hyperkeratosis. In hindsight, although it wasn't diagnosed as cancer, I should have been more diligent about monitoring the sore. Because it didn't seem to be getting larger or more painful, and because I was so busy with graduate studies, I didn't take further action.

Earlier this fall (2016, now done graduate studies and in a postdoctoral position), I noticed that the sore became more painful, and I developed a slight sore throat that never went away. So I first went to an orthodontist, who told me to see an oral surgeon. I had a biopsy done. Several weeks ago, the pathology report said that it is a Stage 1 tongue cancer. So the oral surgeon referred me to a clinic at the UW-Madison. The ENT doctor did not change his diagnosis at the second opinion appointment. The doctor said that someone still has to look at the biopsy to confirm the cancer diagnosis before we go through with the surgery.

My doctor is recommending a partial glossectomy (the lesion is on the left side of the tongue) along with a selective left neck dissection. He says that, because I have no risk factors (have never used tobacco, social drinker with rare binge nights, have never had sex, oral or otherwise so HPV is probably out of the question) and am only 30 years old, he wants to be more aggressive and do the neck dissection. Currently, my physical is scheduled for Jan. 5th, a CT scan will be on Jan 12th, and surgery is scheduled for Jan 19th. I suppose the exact surgery that will be performed is contingent on the findings of the CT scan. He says, if there are no complications, that I could be back at work in a week to a week-and-a-half, but that seems pretty optimistic to me.

My parents are flying to Wisconsin to be with me for the surgery and ~1 week after; I feel very fortunate that they are doing that because I am a single 30 year old male who has very little support system in Wisconsin. I've told my boss, who said he will support me (I have postdoctoral fellowship money/healthcare paying me until May 2018), but am unsure of whether to tell my colleagues. I'm afraid that if I plainly tell my colleagues, that word will spread. The reason that I'm afraid of doing that is that my postdoctoral position is not a permanent job - it is supposed to be career training (I was planning for applying for science jobs in Fall 2017) - and that if employers find out through social networks that I have had cancer that I will not be able to land a permanent job.

I'm also frustrated with myself for not being more diligent when I first noticed the sore in my mouth. But since we can't identify a cause of the cancer, what could have been done?

Anyway, I feel fortunate that this website exists and would love to hear any questions or advice that anyone has.

Last edited by ChristineB; 12-26-2016 06:13 AM. Reason: removed doctors name

tongue lesion left side 2010, biopsy was negative (not at CCC)
12/9/16 tongue SCCA Stg 1 (not at CCC)
12/15/16 2nd opinion (at CCC), no change in diagnosis
1/5/17 physical scheduled
1/12/17 CT scan scheduled
1/19/17 partial left glossectomy and ND scheduled
Joined: Jun 2007
Posts: 10,507
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Welcome to OCF! Im sorry you have a need for our group but Im glad you have found us so we can assist you.

One of the best things about OCF is you are anonymous. The info you post or include in your registration does not have to identify you. By posting here on the forum, anonymously your identity is protected. You are very smart to see the whole picture and not share your diagnosis on social media. Once something is put out on social media, its next to impossible to retract it. You are correct in saying this info could affect your ability to land a permanent job. Employers do not always support cancer patients.

One thing I noticed is you went from the oral surgeon to an ENT, but I wasnt sure if the ENT was at a different facility. Surgeons cut and will nearly always advise surgery as the best option. Once its been removed, that area can never return to a 100% of its original functionality. I suggest you seek out a second opinion preferably at a comprehensive cancer center (CCC). At a CCC they use a team based approach so all professionals are on the same page with making the treatment plans.

At this time, more is unknown about HPV than is known. As far as I know, its still not known if casual contact is able to transmit HPV. More is being discovered about HPV all the time. Since it has not been proven 100% yet about HPV being passed thru casual contact I recommend your biopsy still get tested for HPV and then a treatment plan. HPV rarely is located in the sides of the tongue which is why your physician may have said its unlikely your cancer was caused by HPV.

There are quite a few OC patients/survivors I know who have no known cause for getting OC. It could be a million and one minor things that caused the OC, including your unique bodys chemistry. Regardless of why you have this, it still must be taken care of. I suggest still getting that second opinion first.


Best wishes with everything!



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OCF main site --- DIAGNOSIS

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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
Joined: Dec 2016
Posts: 2
kashmir Offline OP
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Joined: Dec 2016
Posts: 2
Christine,

The ENT is at a different facility; he's part of the UW Carbone Cancer Center, and it is listed as a CCC. (the doctor who did the original biopsy was at a family-type of practice.) He mentioned at my second opinion appointment that he would bring up my case at a board of doctors that listen to cancer cases.


tongue lesion left side 2010, biopsy was negative (not at CCC)
12/9/16 tongue SCCA Stg 1 (not at CCC)
12/15/16 2nd opinion (at CCC), no change in diagnosis
1/5/17 physical scheduled
1/12/17 CT scan scheduled
1/19/17 partial left glossectomy and ND scheduled
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Thanks for clarifying! Im glad your ENT is from a CCC.

Thank you very much for making you signature so quickly. It helps us to better assist you.


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
Joined: Apr 2015
Posts: 91
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2015
Posts: 91
I am sorry to hear about your diagnosis. I had the same surgery on April 22, 2015 but to the right side of my tongue and neck. Luckily, they found nothing in the lymph nodes and I did not need chemo or radiation. I go for f/u appts every 4-6 weeks and will for I believe another few months, then maybe move to every 8-10 weeks. I go a bit more frequently than the oncologist actually believes is necessary, but I figure better to have an appt pending then call the guy every time I think I see something and get paranoid!
With all that being said, I can honestly tell you that the surgery and aftermath were no where near as bad as I had anticipated. I went home from the hospital the day after surgery. My mouth felt sore and fragile, and my neck just felt numb. My right arm felt weird and needed a couple of weeks to get it's strength back. But it really wasn't as bad as I was getting ready for. It was very do-able! I got some of those smoothie juices (Naked Juice) and some protein powder and would put about 1/2 the juice and a scoop of powder into a jar and shake it really good and slowly sip that throughout the day. I would have several per day. I had to wait about 10 days for the pathology results and they came back clear! I couldn't believe it, so hopefully you will luck out too. Since they said Stage I, I would think that is a definite possibility. Well, nothing you can do about the time gone by, so don't even sweat it. I smoked for years and can't change that. Why agonize over it? What's done is done. I hope it all goes well for you and like I said, it really was do-able. Good luck to you and keep us posted. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years

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