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#194873 - 07/15/17 10:38 AM Re: new here and recently diagnosed [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Hi Camille! Glad to hear you are doing so well!!!

Numbness and tightness can be from many different things. Usually its from inflammation that over time gets a little better or it could subside completely and goes away. Other times its caused by something that was done during surgery. There could be something now pressing on a nerve that hadnt been that way before. It could be any number of things, most of which are no big deal. To be honest, you could have some numbness permanently, or it could slowly go away. Believe it or not, even at over 2 months post surgery, you still have some swelling. The body takes a full year to bounce back and adjust itself after a major surgery. Theres all kinds of teeny tiny blood vessels that were cut and reconnected during surgery. Id definitely ask the doc at your next appointment in August. What I mostly see patients with this type of surgery saying are that their tongue now seems too big and is awkward. If you havent already, you should seek out a speech pathologist to help you learn how to better adjust to your new tongue. They can make a huge difference even in patients who seem to have been doing well with their adjusting. At least give it a try. you have nothing to lose.

Best wishes with your continued recovery smile


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
#194903 - 07/20/17 07:11 AM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi Christine,
Thank you so much for your kindness in taking the time to respond to my post and question. Today is 11 weeks since my surgery and I am just taking it day by day and feeling very blessed and grateful for each day given. I will admit some days I do get scared reading some of the posts on here ,and thinking about all the stories I read of all the wonderful people like yourself and others on here that have had to deal with this horrible disease coming back. I just try to stay positive and just take it one day at a time. I tell myself ,,,listen you were diagnosed with melanoma in 1986 and are still going! I work in the special education classroom at a high school so have been off all summer. Looking forward to going back to work to have more to occupy my mind than stress! I have not seen a speech pathologist but my husband says my speech is totally normal. however some days it seems a little mushy to me on certain words. Of course I have a really southern accent so he says that makes it worse lol. I have been doing the exercises the surgeon asked me too and i think I have a touch of the frozen shoulder he warned me about. Other than that I feel wonderful and very blessed.
I had lost around 18 lbs. from Jan. when I first discovered the spot on my tongue till around May right after my surgery but have now put back on around 6 or 7 lbs. so eating is not a problem for me at all! Another reason I am looking forward to getting back to work. I will definitely mention to my doctor on the 4th the tenderness in my incision area and see what he says. It's weird because one side of my neck where the incision goes is totally normal feeling but on the right side where the cancer and 1 bad lymph node was is the area that feels very tender to touch, however the swelling gets better every day so hopefully it just needs time. Anyway thank you so much for your kindness shown and I hope you have a wonderful weekend coming up soon.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#194991 - 08/14/17 05:43 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi everyone,
I have a question hopefully Christine or someone here can answer. I had my tongue surgery and neck dissection on May 3, and the 4th of August had my 3 month check-up. My surgeon said I am doing excellent and coming along very good. where previously the whole right side of my head, including my ear was numb and felt very weird, now the feeling has returned to it. It now feels a little sore and especially at night as I like to sleep on that side, I have noticed over the last several days my head hurts on that side and also my ear every so often. It seems to ease up once I get up out of bed. Just wondering if this could be the nerves in that area coming back. Like I said I just saw my surgeon on the 4th who examined me thoroughly and said all looked great. don't want to run back to the doctor if this is normal and to be expected, but also don't want to let it go if this is not normal. Thank you all so much for any info anyone can offer. In the meantime will go take some Advil.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#194992 - 08/14/17 06:36 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Camille, Im one who always errs on the side of caution. I would advise you to call your doc and get checked again. Thats what the doc is there for. It cant hurt to be overly cautious but delaying if it would be something serious could cause more issues. Swelling can take months to resolve itself so even 6 months later patients can notice differences. Hopefully it turns out to be nothing serious. Please keep us posted.

When in doubt... check it out smile


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
#195027 - 08/22/17 10:20 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi everyone,
I would like to ask if you could all keep me in your prayers. I have a appointment Thursday with my surgeon to see what this constant pain in my head and ear is. I am so scared and stressing myself out that it is the cancer returned. I am trying to stay positive but being in pain and not being able to sleep at night has wore me down, and of course my mind and emotions are racing. It has only been a little over 3 months since my surgery so am praying it is just something related to that. I will appreciate any prayers and positive thoughts that can be said for me. Thank you all so much for all your kindness shown from this wonderful group and as always you are all always in my prayers.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195062 - 08/28/17 06:08 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
I had my appointment with my surgeon last Thursday. He is scheduling me for another PET scan, which he says he normally does 3-4 months after surgery. I am still having some ear pain every once in a while and some head pain during the day. He said everything looked and felt normal as far as he could see and my neck dissection is healing up nicely and my tongue looks great. He thinks the pain might be my nerves regenerating where previously that whole side of my head was numb. I am praying that is all it is but right now stressing waiting on the call to tell me when the PET scan will be.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195124 - 09/11/17 03:37 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi all,
I finally heard back from my surgeon and my PET scan is scheduled for a week from Friday on September 22. I am still having the intermittent head, ear, and every once in a while jaw and throat pain. I am praying this is just my nerves coming back after my surgery since that whole area was numb till about a month ago, but am really scared that the cancer has come back or that the cancer is now in my nerves. If you would keep me in your prayers I would very much appreciate it. I am trying to stay positive. I will admit though that some days are harder than others and the pain and fear overwhelm me.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195154 - 09/27/17 03:41 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi everyone,
I had my PET scan last Friday and as of today have still not heard from my doctor on the results. Hopefully I hear something soon, as I am stressing myself out so very bad. My next check-up is not till November. I am still having the intermittent ear, head, and jaw pain so of course this is adding to my stress level. Praying I get good news soon.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
#195156 - 09/28/17 12:31 AM Re: new here and recently diagnosed [Re: Camille]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Hang in there, Camille. Its not unusual to have PET results take several days. After the test a pathologist needs to read it before its sent to your physician. Hoping for the best news possible. Keep us posted.


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
#195157 - 09/28/17 03:23 PM Re: new here and recently diagnosed [Re: Camille]  
Joined: Apr 2017
Posts: 39
Camille Offline
Contributing Member (25+ posts)
Camille  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 39
Hi Christine,
Thank you so much for answering to my post and for your encouraging words. I am trying not to stress, as hard as it is and trying to stay positive. Hopefully I hear something soon. Have a wonderful day!
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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