Can I have your opinion

RobinS

My mother is 73 years old and is recovering from tongue cancer surgery, where they took out 3/4 of her tongue, broke her jaw, floor reconstruction of her mouth and neck dissection.  She had to have the floor reconstruction done twice as sutures came loose the first time. They put a wound vac in my mother's mouth for over a week to try to get the skin to heal over a small hole in front of her teeth. That didn't work.  So, she had to have another surgery where the doctors had to put dermaskin on the front of her teeth because they had to break her jaw twice to fix the floor construction issue and it was not healing. Next, they took out her nose feeding tube and put in a G-tube.  So, in all about 6 surgeries and a month in the hospital. She just got home on Feb. 1st.  She has to make a decision with radiation as the doctors think she should even though all of her marigins were clear.  They said that cancer was in part of a nerve and even though the margins were clear and no cancer in lymph nodes there is a 25% chance the cancer could come back.  If she did radiation she could bump it up to 80-90% and they are pressuring her to make a decision.  My mother doesn't want to do it as she has been through hell.  She couldn't even walk a week ago.  I try talking to her about it and she starts crying and says that she can't even swallow and wants to eat again.  She is having PT twice a week to help her relearn to swallow and she's making progress.  I don't know what to do.  She doesn't want to go through it.  Anyone's opinions would help and I will have her read them.  Thank you all for your time.

 

Robin Scott

longtermsurvivor

Hey Robin

Your mom has had a rough go of it, and I can understand her reluctance to pursue another morbid treatment at this time.  The numbers you have quoted lend themselves to a lot of speculation.  First, the complications of radiation can be severe, and are fairly common.  So one way of looking at things is that  she would be trading a lesser risk for reoccurance for a significantly higher morbidity rate if she were to elect radiation.  Another way of looking at it is that if she doesn't get radiation now, a reoccurance may or may not be caught early enough to treat successfully on down the road.  So she is kind of caught between the devil and the deep blue sea here.

 

I have personally been down this road.  You can click on my bio and read all about it.  I've had surgery very much like what she's been through.  I have been through radiation--- twice.  So I can personally see the plusses and minuses well enough to understand the conundrum.  She certainly has the option of waiting and seeing what happens on down the road.  In my case, I was not radiated after the radical surgery.  Unfortunately I had a reoccurance within a year of that surgery.  I then went ahead with radiation, completing this therapy almost a year ago.  I can't say any of it was easy.  I have some problems still as a result of this combination of treatments, but life is good even so.  No reoccurance in the last year, and I am quite functional after all this.

Please PM me if I can be of any help.

 

Pat

 

RobinS

longtermsurvivor said:

Hey Robin

Your mom has had a rough go of it, and I can understand her reluctance to pursue another morbid treatment at this time.  The numbers you have quoted lend themselves to a lot of speculation.  First, the complications of radiation can be severe, and are fairly common.  So one way of looking at things is that  she would be trading a lesser risk for reoccurance for a significantly higher morbidity rate if she were to elect radiation.  Another way of looking at it is that if she doesn't get radiation now, a reoccurance may or may not be caught early enough to treat successfully on down the road.  So she is kind of caught between the devil and the deep blue sea here.

 

I have personally been down this road.  You can click on my bio and read all about it.  I've had surgery very much like what she's been through.  I have been through radiation--- twice.  So I can personally see the plusses and minuses well enough to understand the conundrum.  She certainly has the option of waiting and seeing what happens on down the road.  In my case, I was not radiated after the radical surgery.  Unfortunately I had a reoccurance within a year of that surgery.  I then went ahead with radiation, completing this therapy almost a year ago.  I can't say any of it was easy.  I have some problems still as a result of this combination of treatments, but life is good even so.  No reoccurance in the last year, and I am quite functional after all this.

Please PM me if I can be of any help.

 

Pat

 

Thank you

Thank you very much Pat for the quick reply.  I am sorry you have had to go through so much.  You are an inspiration.  The man in charge of my mother's radiation is supposed to call this afternoon.  I brought it up again with her because she will have to talk to him about it today.  Although, her speech is very much effected, he should be able to understand her if she talks slow.  She wants to know what she can do to check for cancer recurrence with her doctor every 6 months or so.  I don't know what to tell her, and I said these are good questions to ask when he calls.  She really doesn't want to do it, and I don't want her to go through more hell either.  I told her it her decision, but she needs to make an educated one and she will have to go through radiation if it comes back as they can't do more surgery.  I will let you know what happens.  Thank you again.

 

Robin

fisrpotpe

thoughts

deciding to do radiation or not is a hard choice. i wonder why the doc is pushing the radiation so fast as with all the surgery and without know how long it has been since the last one, i would think 4 plus weeks of healing would be needed. so my thought would be to ask why they need to know so fast and could you wait till the 4-6 week healing time. at that point if she is doing better it may be easier to make the choice. 

if your mother is in good health other than the cancer, doing radiation might be eaiser. but side effects from radiation are different for most all other than getting dry mouth and mucus, those two most everyone gets. Another question would be how many treatments? some i know who follow surgery with radition only get max. of 30 treatments which is much easier than 35-38 that many of us have had. those 5-8 treatments beyond the 30 seem to be the big time hurt. please make sure the equipment used is from IMRT or tomotherapy for radiation. the newer equipment is much better and more pinpointed. not know where your treatments would be is why i ask. most smaller places for treatment may not have the newer better equipment. 

would chemo be part of the treatment with radiation? from my perspective chemo adds more challenges than the ugly radiation. both by self are bad but both together are much worse. this would be something i would check on, radiation is hard but would be much harder with chemo and 35-38 treatments. 

good luck with choice, it is so wonderful know your mother has a great caregiver to help her with her daily challenges. 

john 

George_Baltimore

fisrpotpe said:

thoughts

deciding to do radiation or not is a hard choice. i wonder why the doc is pushing the radiation so fast as with all the surgery and without know how long it has been since the last one, i would think 4 plus weeks of healing would be needed. so my thought would be to ask why they need to know so fast and could you wait till the 4-6 week healing time. at that point if she is doing better it may be easier to make the choice. 

if your mother is in good health other than the cancer, doing radiation might be eaiser. but side effects from radiation are different for most all other than getting dry mouth and mucus, those two most everyone gets. Another question would be how many treatments? some i know who follow surgery with radition only get max. of 30 treatments which is much easier than 35-38 that many of us have had. those 5-8 treatments beyond the 30 seem to be the big time hurt. please make sure the equipment used is from IMRT or tomotherapy for radiation. the newer equipment is much better and more pinpointed. not know where your treatments would be is why i ask. most smaller places for treatment may not have the newer better equipment. 

would chemo be part of the treatment with radiation? from my perspective chemo adds more challenges than the ugly radiation. both by self are bad but both together are much worse. this would be something i would check on, radiation is hard but would be much harder with chemo and 35-38 treatments. 

good luck with choice, it is so wonderful know your mother has a great caregiver to help her with her daily challenges. 

john 

Hi Robin

As I read your post, so many emotions ran through me that I started crying.  In a way, I can understand both yours and Mom's point of view.  Back in early 2009 my mother under went an operation for her bladder.  When they lifted it up, there was a tumor underneath.  At the time, she was 85 and not in the best of health so, she was a bit older than your Mom.  She made the decision to forego treatment.  My two sisters are registered nurses and I was a mortician but even with those backgrounds, it was very difficult on all of us.  We respected her wishes and didn't try to persuade her to have treatment.  She passed away in September of that year.  If Mom truly has her mind made up, then don't try to persuade her to have treatments.  If she's on the fence, then maybe you could point out the benefits of treatment.

My heart cries out for her.  Right now, tears are welling up and I have gone through five Kleenex.  I know exactly what she means when she starts crying about wanting to eat again.  I watch alot of programs on the Food Network.  Actually, I can be watching any TV program and I'll just start crying thinking about some kind of food that I miss.

Although I haven't had quite the same problems with the jaw that she has had and I'm about 9 years younger, if my cancer came back, I don't think I would consent to going through treatments again.  People like Pat and others on this board who have gone through treatment twice are a true inspiration but I still don't think that would sway me.  So, in that regard, I can see where she's coming from.  I hope things turn out well for both of you.  Take care!

ToBeGolden

Treatment Decisions?

There was a time that I vowed no more treatments. But since taking that vow, I had major surgery and a couple courses of radiation/chemo. And I'm glad I did have the additional treatments.

I'd give your mother at least a couple of weeks to make up her mind. Hard to face another round of treatment when just returning from the hospital. Maybe time will allow her to change her mind; maybe time will make no difference. It is, of course, her choice.

Try to get her to speak about the worse of her hospital experiences. For me, it was all encounters with respiration therapy. It always seemed that RT was trying to suffocate me. I know they were in fact keeping the airway open; but that was not what I as a patient experienced. I really don't know if talking about the hospital experience will  help or hurt. I guess I'm just babbling. Rick.

Tim6003

George_Baltimore said:

Hi Robin

As I read your post, so many emotions ran through me that I started crying.  In a way, I can understand both yours and Mom's point of view.  Back in early 2009 my mother under went an operation for her bladder.  When they lifted it up, there was a tumor underneath.  At the time, she was 85 and not in the best of health so, she was a bit older than your Mom.  She made the decision to forego treatment.  My two sisters are registered nurses and I was a mortician but even with those backgrounds, it was very difficult on all of us.  We respected her wishes and didn't try to persuade her to have treatment.  She passed away in September of that year.  If Mom truly has her mind made up, then don't try to persuade her to have treatments.  If she's on the fence, then maybe you could point out the benefits of treatment.

My heart cries out for her.  Right now, tears are welling up and I have gone through five Kleenex.  I know exactly what she means when she starts crying about wanting to eat again.  I watch alot of programs on the Food Network.  Actually, I can be watching any TV program and I'll just start crying thinking about some kind of food that I miss.

Although I haven't had quite the same problems with the jaw that she has had and I'm about 9 years younger, if my cancer came back, I don't think I would consent to going through treatments again.  People like Pat and others on this board who have gone through treatment twice are a true inspiration but I still don't think that would sway me.  So, in that regard, I can see where she's coming from.  I hope things turn out well for both of you.  Take care!

Bottom line is it stinks...

The above folks are waaaaay more qualified than me to lend their opinion, they have been through it much tougher than me, your mom included.

I had Base of Tongue stage III with one lymph node involved.  I had no surgery, Erbitux for chemo (which is much less toxic with less long term side affects than the traditional chemo so I am told). And of course I had radiation 37 zaps. 

Simliar to what George said, I remember telling my wife months after treatments I was "just hungry".  I did not realize it would hurt her heart as it did, she just began crying for me becasue she did not want me to be hungry.  I was tired of being hungry and I just wanted to eat.  I did not make that mistake again   telling her that. 

I can't speak as to what mom should do.  She is 73 and obviously done a good job in raising you (great caregiver) but for me the choice was made because I had five children ages 2-14 (I was diagnosed in October 2011).  I took the route that was the hardest bc I had to be around for my kids and my wife...no two ways about it.  I had my feeding tube for 7 months.  I had some pretty bad neck burns from the rads (see my picture on my expressions page) and I sure had a bad reaction to the Erbitux chemo.  I would do it all again to have the time I have had with my family to date. 

This is a mean disease, your mom is no doubt exhausted.  Bless her for having to go through so much more than me, I admire her already just reading what she has been through.  Lot's of good suggestions above and there is always 2nd opinions out there to be sought from another team of docs.  I would certainly say there should be no pressure from the doctors on this even though I do know they may need an answer soon, surely not that quick?

Tell mom whatever she decides I admire her toughness already and I know she and you will make the best decision, but ultimately it is hers to make. 

I whispered a prayer with with a bit of a tear in my eye as well that she would continue to be strong, recover quickly, eat soon and have peace in her heart, healing in her body.  Whispered that prayer as I hit the post button.  She in on my prayer list and there she will remain!!

Best,

 

Tim

 

Ladylacy

Treatment Decision

The decision should be your mother's alone.  Don't force the issue with her.  Radiation for head and neck cancer is the worse there is.  My husband has been thru 70 radiation treatments since August 2010 in basically the same spot.  Plus surgery and now is back in the hospital because a needle biopsy caused his lung to collapse. 

The radiation (first time) completely closed off his throat and when surgery was done, the throat had to be reconstructed.  The second time it closed off his throat but the doctor was able to open it by dilation.  He can swallow and eat, but not much and it takes a long time to eat and he has to have lots of water to flush down his food.  He is a laryngectomee.

He has told me that if the cancer has spread to his lung and if it has recurred in his esophagus again, he won't undergo any treatment, but I think that is talk because he underwent the needle biopsy.  He just turned 76 and until 2010 his health was generally good.  But like I tell him and our sons, whatever he decides I will back him.  It has been hard watching what he has gone thru and the stress on me is hard.  We caregivers, suffer just as bad but in a different way.

Let it be your mother's decision and as hard as it sounds if she doesn't want the radiation don't talk her into it.  And regardless of what she wants, remember she make the decision herself.

Wishing you both the very best, Sharon

Sharon

hwt

Ladylacy said:

Treatment Decision

The decision should be your mother's alone.  Don't force the issue with her.  Radiation for head and neck cancer is the worse there is.  My husband has been thru 70 radiation treatments since August 2010 in basically the same spot.  Plus surgery and now is back in the hospital because a needle biopsy caused his lung to collapse. 

The radiation (first time) completely closed off his throat and when surgery was done, the throat had to be reconstructed.  The second time it closed off his throat but the doctor was able to open it by dilation.  He can swallow and eat, but not much and it takes a long time to eat and he has to have lots of water to flush down his food.  He is a laryngectomee.

He has told me that if the cancer has spread to his lung and if it has recurred in his esophagus again, he won't undergo any treatment, but I think that is talk because he underwent the needle biopsy.  He just turned 76 and until 2010 his health was generally good.  But like I tell him and our sons, whatever he decides I will back him.  It has been hard watching what he has gone thru and the stress on me is hard.  We caregivers, suffer just as bad but in a different way.

Let it be your mother's decision and as hard as it sounds if she doesn't want the radiation don't talk her into it.  And regardless of what she wants, remember she make the decision herself.

Wishing you both the very best, Sharon

Sharon

To do over again...

After I finished radiation, my mother, who is older than yours, was diagnoised with stomach cancer. Even imagining my Mom having to do radiation made me burst into tears. Fortunately, they did surgery and she did not need radiation.  Since this is such a harsh tx and it is against your Mom's wishes, I guess I would have to ask what the disadvantage to a wait and see approach would be. If there is a reoccurance could she not get radiaiton then?

HobbsDoggy

I am 67

Not so far from your mom's age. The radiation I had for neck, unknown primary, along with chemo was not pleasant to say the least. There were times when I wished I would have just given up. I am two months out from last treatment and still struggling. All that said I am glad I did the radiation and chemo. I did have a neck dissection first.

I am fairly beat up right now, but have hope, most of the time.

Given what they told your mom I a have no clue what I would do in the same situation. I think a second opinion is always wise and it helped me. My second opinion doc said I am out to "Cure" you and it can be done, there is no firm guarantee, but give it a shot.

I feel for you and your Mom and wish you to absolute best no matter your decision. There is no wrong decision here, just different ones.