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#50955 10-04-2004 10:58 AM
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Hi everybody,

I'm taking a deep breathe as I type this. I'm worried sick again as usual. I know everybody is going to say not to worry until there is something to worry about but I guess I just have one of those personalities where no matter how much I tell myself to put it out of my mind its the only thing I can think about.

My mom called me Friday saying that she made an appointment with her ENT because she is feeling something strange going on with her tongue. She just had an appointment 2 weeks ago and he relayed a message to her to give to me and my sister that everything looked great. Well now my mom says she feels a hard spot on her tongue where they reattached it and she had a strange feeling that she can't describe (like a stretching or pulling). I'm hoping its just scar tissue that formed on her tongue and like her neck how it gets stiff. Could it be possible that scar tissue could just develop 7 months after the radiation. She is feeling so much better lately and hardly has any pain anymore. Has anybody ever experienced anything like this before? She has an appointment on Wednesday so her ENT can look at it and I am just so worried about what it could be. I was trying to go without posting anything about it but I really need some support right now. I have been praying constantly. Please let me know if anybody has ever had anything like this.

Thank you,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#50956 10-04-2004 11:15 AM
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Dani,

What I found months after surgery and radiation was that I gradually became more aware of scar tissue that I hadn't sensed early on. I think many of the nerves in that area were either severed (by surgery) or temporarily deadened (by radiation), and when they started to get back to a normal level of sensation, I began to feel things that took some time to get used to. I don't know if this is what your mother is experiencing, but it could be.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#50957 10-04-2004 01:24 PM
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Cathy,

Thats what I'm hoping. Thank you so much for your response. It will help take my mind off it a little more until Wednesday.

Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#50958 10-04-2004 03:37 PM
Joined: Aug 2003
Posts: 1,627
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Hi Dani,
I would feel good about the fact that she just had a check up two weeks ago. It sounds like scar tissue, etc., to me so let's hope that's what the doctor says.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#50959 10-04-2004 05:32 PM
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Hello Dani,

All I can offer you is my support that this is not a reoccurance. It's natural for you to worry. I think we all look over our shoulders when something like this happens. This is such a sneaky nasty diaease. I'm praying everything turns out ok for your Mother. Please keep us posted.

Love ya, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#50960 10-04-2004 06:25 PM
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DaniJams,

I was scared to death a few weeks ago because at the bottom of my ribs it first started hurting around the PEG tube site and gradually worked it's way to the center and then the right. I had xrays, scans, etc. I am now convinced it is only adhesions (scar tissue) from where they poked into my stomach to place the PEG tube. A friend of my sister had the same thing and they kept going in there and cutting it away. She was on strong pain medication for many months. I believe scar tissue can form anywhere and push against nerves and cause anything from pain to numbness. I don't think we will ever reach a point of never worrying about what might be lurking in our bodies after cancer. I am surely hoping and praying that your mother is remaining cancer free and God calms your heart and spirit and provides you warmth, comfort and endless love!

You are the greatest for all your love and concern you have for your mother. There is nothing like the love of a mother and child. God Bless you.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#50961 10-05-2004 02:32 AM
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Dani,
They had to disattach the left side of my tongue during surgery and I have hard spots there with some small bumps.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#50962 10-05-2004 03:18 PM
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Dani,
I feel strange sensations daily in my tongue & my surgery was 7 mos ago. Some days I cannot do coffee or anything even remotely hot and others it doesn't bother me. The last week or so I have felt swelling & my tongue feels tight, I just continue on, knowing I am getting checked out as your mom is. Dont worry and reassure her as best you can ... I even feel better about the "pulling" sensation in my tongue now I have read YOUR post....Thanks!
Take care
Maria


01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
#50963 10-06-2004 06:12 AM
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Thank you Minnie, Dan & Ed,

You are all awesome. Her appointment is at 2pm today so we are just waiting to hear what the ENT says.
Minnie, I told my mom about the chocolate thing and she said that right before her tongue started to feel a little strange she had eaten chocolate and that two days prior to noticing the change in her mouth she had eaten a lot of chocolate. So maybe chocolate is affecting her also. She has been trying to gain some weight so she has been eating everything she can.
Maria,
Not to say that I'm glad you are feeling the same sensations as my mom but it makes me feel a lot better knowing that she is not alone with the strange feeling. She has the same problems where some days she is fine eating stuff and other days she can't. I hadn't heard that anybody else was that way.
I will let you all know how the appointment goes today.

Thanks again,
Love and prayer to you all!
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#50964 10-06-2004 11:46 AM
Joined: Jun 2004
Posts: 72
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Dani: Dryness can cause many foods to be uncomfortable on the tongue. I have Sjogren's(an autoimmune disease, affect endocrine system)and before I was diagnosed (and before I knew I needed to drink a lot more water) I had trouble with coffee, chocolate, walnuts and wine. The walnuts have tanin, as does red wine, and coffee; I am not sure about chocolate but something it is affects my tongue when I am dehydrated. Drinking lots of water helps me. It may be partly a dryness issue w/your mom. Good luck - Candace

Sister to guy w/Tongue cancer, Stage IV, Dx 4/03, ended Tx 9/03. 12 clear exams.


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
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