Hello All,

I have not been on the boards in a while. My mom has stage 3 base of tongue cancer was dx 11/06 has had 33 rad tx which ended about 10 weeks ago.ENT did a biopsey last week to see if the rad did it's thing...according to him the tumor has shrunk but still there. He called us into his office today to tell us we have 4 choices....

1. Remove part of tongue and nodes on left side now. Explained some of the complications/issues and clearly figured this was her best option.

2. Wait 6-8 weeks and see if the rad continued to do its thing and take care of the rest of the tumor, something her rad doc said could happen, but ENT does not really buy into, and figured just the opposite could happen....the tumor grows and then bigger area of tongue would have to be removed.

3. Chemo - does not seem to think that is a great option for cure.

4. Do nothing and call hospice.

None of the options sound any good to us....but here is my question...

Can anyone out there speak to quality of life after having part of the tongue removed? Can you share your thought process in deciding to have the surgery? Any insight, thoughts or experiences anyone has/had would be greatly appreciated.

Patti - where is your Mom being treated? Is it a designated CCC? Have you thought about going somewhere for a second opinion - sometimes a good option when tough choices have to be made.

Hello Ginny,

Thanks for the response. Sorry it's taken so long to get back to you.

She has been treated at Lacks Cancer Center in Grand Rapids MI. It is part of Mercy Medical. I tried to tell everyone that a 2nd opinion was needed in the first place, but no one listened. Now I have finally convinced my siblings and mom to go to University of Michigan Cancer Center (suggested by our pediatrican). I have sent all of her records there and she has an appointment April 3rd.

It looks like her ENT is suggesting the same procedure that you have had.

Thanks again for the response. I have been so busy with work and my mom that I have not been on these boards much in the past month.

God Bless,
Patti

Hi, Patti, your Mom has been putting up a hard fight thus far. She sounds like a strong lady. I went back to your previous posts to see if you had mentioned your Mom's age, but couldn't find it. It seems to me that her age, general health and attitude, and ongoing support system need to be considered in the treatment options offered above. Removing part of her tongue and lymph nodes will not be a walk in the park to recover from. And if that does not rid her of the cancer, then she will have to decide on chemo. The "do nothing and call Hospice" is the other end of the spectrum. And I would ask point blank if that was suggested because the other alternatives are being seen as palliative rather that cures-again, depending on her age, mental attitude, physical condition, etc. There is alot of tough stuff to consider and talk about. I am sorry yu all are faced with this situation. Amy in the Ozarks

Hello Amy,

My mom is 72 and other than this cancer was in perfect health. The docs were all amazed that she has never been on any meds in her life and that she is as healthy as she is....she comes from good German stock, all of her aunts are still alive and doing well and they are between 85-95 yrs of age.

She is much more passive in her treatment and recovery from rad than I ever thought she would be. Her rad doc said many times that she was doing very well with the treatment and based on some of the posts here I would say she fared better than most. She does not do much, other than lay on the couch. I think she was getting a little better every day until this news. And on top of it all, her older sister (my darling aunt whom I adore) was in a very bad car accident a week ago today and has been in the hospital in critical condition. I dont know if she is going to make it or not! She is a mother of 15. Yes, all hers and all sigle births...good Catholic family, no brith contorl They have called my cousins in from all over the country and it is a wait and see thing now. Although my mom would never complain or say much I am sure she is worried sick about her sister and family. They are very close.

Her ENT did tell us about all the possible complications and quality of life issues after having this surgery. He said that he would not suggest this surgery if he did not think it was a cure and said the recurrence rate is about 30%. I am calling him tomorrow to ask a few more questions. The do nothing and call hospice threw us all for a loop. I feel like he is not telling us something or at least not everything. Maybe he will be more forthcoming if my mom is not in the room. We wont make any decisions until we have a second opinion from UofM Cancer Center.

Hello Amy,

My mom is 72 and other than this cancer was in perfect health. The docs were all amazed that she has never been on any meds in her life and that she is as healthy as she is....she comes from good German stock, all of her aunts are still alive and doing well and they are between 85-95 yrs of age.

She is much more passive in her treatment and recovery from rad than I ever thought she would be. Her rad doc said many times that she was doing very well with the treatment and based on some of the posts here I would say she fared better than most. She does not do much, other than lay on the couch. I think she was getting a little better every day until this news. And on top of it all, her older sister (my darling aunt whom I adore) was in a very bad car accident a week ago today and has been in the hospital in critical condition. I dont know if she is going to make it or not! She is a mother of 15. Yes, all hers and all sigle births...good Catholic family, no brith contorl They have called my cousins in from all over the country and it is a wait and see thing now. Although my mom would never complain or say much I am sure she is worried sick about her sister and family. They are very close.

Her ENT did tell us about all the possible complications and quality of life issues after having this surgery. He said that he would not suggest this surgery if he did not think it was a cure and said the recurrence rate is about 30%. I am calling him tomorrow to ask a few more questions. The do nothing and call hospice threw us all for a loop. I feel like he is not telling us something or at least not everything. Maybe he will be more forthcoming if my mom is not in the room. We wont make any decisions until we have a second opinion from UofM Cancer Center.

Hi Amy,

Me again. I touched the wrong button on my new laptop and all the sudden my post posted!

I wanted to say thank you so much for your reply. I just noticed that you and your husband lost your battle. I am so sorry Amy. God bless you for continuing to offer comfort and support here.

Take Care,
Patti

Patti, I have a lifelong friend who always maintained that it was up to the "strongest stock" amongst us to produce enough kids to take care of the weaker who would come along! There were 9 siblings in my Mother's family, however I did not carry that tradition on! Sounds like your family did . That is very sad news about your Aunt and is something your family did not need to deal with now. I wish the very best for your Mom and your Aunt. Amy in Oz

i had part of my tongue taken off i talk alright most of the time sometimes i have problems not to often.my problem is my neck they removed some nodes i feel like i'm being choked all the time like leather shrinking thats how my neck feels all the time and hurts too. i hope everyone is all fine.i don't talk much when i'm in a room i just listen.i play for all

lynnlynn

Lynnlynn....how long ago was your surgery? You need to ask your dr. about massage and exercise for your neck. I was advised to do that, to loosen up the scar tissue. You can ease that feeling of being strangled and you need to not wait any longer. If you have been out of surgery long enough for good healing already, there is no reason you can't do this yourself. With permission, apply some good face lotion and massage away. Perhaps your dr. will want you to wait longer, or perhaps he would like for you to visit a massage therapist once to get a lesson, but if you don't do some massage, you might be left with the tightness. You can also exercise your neck by turning your head and exercising your jaw.