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Joined: Jul 2016
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Posts: 3
Hello! I'm Robin B and you'll see my posts under DrgnldyWarrior. Drgnldy because I like the strength projected by the symbol of a dragon and Warrior because it reminds me of my goal to help my loved one beat her cancer.

My loved one is my mom. My dad and I are her primary caregivers. She is a young 77 yo and was recently diagnosed with squamous cell carcinoma of the tongue. We believe it started making itself known November 2015 when she complained about having difficulty swallowing. Not long after, she had a sore on the left side of the tongue. In the last few weeks, everything has moved rapidly. On Tuesday 8/2/16 she had the left side of her tongue removed and her neck was cut from mandible to mandible to remove lymph nodes. The floor of the tongue was left, I assume to give her the best chance to recover speech and eating. She's now 2 days post-op.

She seems to have come through surgery well. The left side where reconstruction took place looks healthy and pink. My concern is that the right side of her tongue turned black right afterwards and is still that way. I don't know what the term is for this and don't know what type of action should be taken. The surgical residents have indicated it isn't unusual and they are taking a "wait and see" position. I'm worried she will lose the healthy side of her tongue.

I would really appreciate any direction you can give to help me understand this.


DrgnldyWarrior
Caregiver to my mom diagnosed with squamous cell carcinoma of the tongue in 2016. Partial glossectomy, left side of the tongue 8/2/16
Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Drgnldy! Im sorry to read about what your mother is going thru. Its never easy watching someone you love go thru things like what your mother has been thru.

First, I hope her medical team are keeping her pain under control. If she is uncomfortable, make sure she gets something for it. Ive laid in the hospital after a major surgery and was in incredible pain. I wouldnt want anyone else to ever go thru that! If her doc has only prescribed one pain medicine ask them to add a second one just in case shes having a bad day and needs a dose sooner than allowed. That way she can switch back and forth between the 2 and shouldnt ever have to wait for the right time before taking meds for pain.

As far as the black areas, it sounds like its a circulation issue. To me (I am not a medical professional) Im thinking the area is probably still very swollen which could affect her circulation, especially when involving tiny blood vessels. Blood flow must get to the black area or she could have complications, maybe needing more (hopefully minor) surgery. The swelling can take a long time to go down, weeks maybe months for a total recovery. If your mother is having additional treatment like radiation she probably will have that in about 6-8 weeks. By then the swelling will have mostly subsided and she should be feeling much better.

The best thing you can do to help your mother is to be there for her. If possible, someone should stay with her as much as is allowed. You sound like a strong person so Im sure you are a strong advocate for your mom. Just remember, caregiving is a tough job! Make sure you take some time for you too.

Wishing you, your mother and the rest of your family all the very best.


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: Jul 2016
Posts: 3
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Posts: 3
Thanks for the welcome and information, Christine!

I thought about the circulation as it related to the surgical repairs but hadn't thought about the swelling possibly causing circulation issues. Makes sense now why they are keeping it under surveillance.

Last time she was hospitalized for knee surgery I decorated her room with a 5 o'clock somewhere theme to help keep her spirits up. Today I'll head home for a few hours and plan on making a family photo collage representing everyone who is in her corner and to thank her for loving us all so much she made the choice to have this difficult surgery in order to continue to be in our lives.

Kept fighting, everyone, and remember you are loved!


DrgnldyWarrior
Caregiver to my mom diagnosed with squamous cell carcinoma of the tongue in 2016. Partial glossectomy, left side of the tongue 8/2/16
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Awww! I just love your ideas smile Im sure your mother does too. What a great, encouraging caregiver you are!!! Patients have so much on their minds with serious medical problems arise. Having something positive and happy helps make it easier to handle.

Your mothers surgical site must be swollen. The black means its not getting enough blood flow. Hopefully this will turn around quickly so she doesnt need further surgeries to correct it. This happened to me too. In my case I needed another mandibulectomy (jaw replacement) to correct the lack of circulation and my body's rejection of the prosthesis. Just like the saying goes... everybodys different and will react in their own individual way to things.

Have fun with your decorating.


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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