Need Help--- Bot Question

Hello everyone,

I've been reading and posting on this site since I found out that I had base of tongue cancer in the Spring 2008.  It has been a great source of knowledge and comfort to me.

I had radiation for BOT which ended in late May.  Went it without a peg but was always able to swallow, thank goodness.   I believe in general I'm doing ok without any really big problems.  The small ones I was able to tackle with the help of this site and the treatment center.  I still have a long wasy to go but am hopeful that my PET will be clear. 

Question---Do you continue to have a feeling of a  small ball, lump, stone  (best way I can describe it) where your tumor was?  I do the gargle with baking soda/salt, Biotene many times a day.  But this feeling that there is SOMETHING caught in the area of the tumor continues.

I was checked by my oncologist, and have an appoitment wih my ENT in two weeks.  The oncologist could not see anything and told me not to worry.  But it feels so strange and of course worrisome.

Any  help would be greatly apprectiated.  Best, D.

Hi D

I'll bet you're feeling better now - since it was a few days ago that you posted. Things can change in your mouth and throat every few hours.  I am 5 months post treatment for stage 4 BOT. At 3 mos. I was always having sore problems at BOT tumor site and other places in my mouth. I was sure sores were becoming ulcers. Bad thrush complicated these issues. ENT did that whatchamacallit but he said everything was healing as expected in spite of the thrush. Sores for a while moved around alot. They are not bothering me at all now. I got results yesterday of my 3rd CT scan and I won't need neck dissection. Lymph nodes are normal size and even salivary glands looked normal so I'm optomistic that I won't be living with dry mouth forever. As of today I am off Coumadin (blood thinner for blood clots). I have 100% of my strength and endurance back. Things only get better from here, D. Enjoy the rest of the summer. Steve

 

On 7/18/2008 surferboy wrote:

Hi D

I'll bet you're feeling better now - since it was a few days ago that you posted. Things can change in your mouth and throat every few hours.  I am 5 months post treatment for stage 4 BOT. At 3 mos. I was always having sore problems at BOT tumor site and other places in my mouth. I was sure sores were becoming ulcers. Bad thrush complicated these issues. ENT did that whatchamacallit but he said everything was healing as expected in spite of the thrush. Sores for a while moved around alot. They are not bothering me at all now. I got results yesterday of my 3rd CT scan and I won't need neck dissection. Lymph nodes are normal size and even salivary glands looked normal so I'm optomistic that I won't be living with dry mouth forever. As of today I am off Coumadin (blood thinner for blood clots). I have 100% of my strength and endurance back. Things only get better from here, D. Enjoy the rest of the summer. Steve

Steve, thanks for your reply, appreciate it.   D.

Hi: I also had stage four bot with lymph node removal (operation 3/07).  While I didn't have a lump I had many other issues including bad thrush, which in fact reduced a piece of my tongue.  I still have lack of saliva and sore throat with trouble swallowing.  But I get by quite well with various life style (diet) adjustments.  My PT once said to me that it was no wonder I have throat problems since the radiation burned "the hell" out of me.  That being the case I am alive and kicking.  One further thing I would recommend is a CAT scan or MRI to give you reassurance that the cancer is gone.  Good luck.  Ed

 

On 7/19/2008 Ejw00100 wrote:

Hi: I also had stage four bot with lymph node removal (operation 3/07).  While I didn't have a lump I had many other issues including bad thrush, which in fact reduced a piece of my tongue.  I still have lack of saliva and sore throat with trouble swallowing.  But I get by quite well with various life style (diet) adjustments.  My PT once said to me that it was no wonder I have throat problems since the radiation burned "the hell" out of me.  That being the case I am alive and kicking.  One further thing I would recommend is a CAT scan or MRI to give you reassurance that the cancer is gone.  Good luck.  Ed

Thanks for your response, appreciate it.  Debra (D1211)

 

On 7/19/2008 D1211 wrote:

 

On 7/19/2008 Ejw00100 wrote:

Hi: I also had stage four bot with lymph node removal (operation 3/07).  While I didn't have a lump I had many other issues including bad thrush, which in fact reduced a piece of my tongue.  I still have lack of saliva and sore throat with trouble swallowing.  But I get by quite well with various life style (diet) adjustments.  My PT once said to me that it was no wonder I have throat problems since the radiation burned "the hell" out of me.  That being the case I am alive and kicking.  One further thing I would recommend is a CAT scan or MRI to give you reassurance that the cancer is gone.  Good luck.  Ed

Thanks for your response..  I have a PET scheduled for early Sept.  My oncologist feels that the area still has too much swelling to do even a CAT at this point. So I am in a holding patten for now.  D.