Elderly and Treatment

GrannysDaughter

Hello,

My Mom's biopsy is scheduled for tomorrow at 10:30 a.m. Central.  She's 84 years old and is more than mild cognitive impairment (she still knows everyone and if you only see her for a few minutes, depending on her current state, she can seem completely out of it or almost normal).   Over the last couple of weeks, I've had to help her remember how to put in her false teeth and how to take pills (which is really hard considering the fact that she is having a great deal of difficulty swallowing anyway).  She often forgets that she's going for a biopsy in the morning.

I'm scared and I'm furious and I'm so sad and alone.  Yes, my father is still alive.  He's 88 and doing fantastic for 88 but he doesn't really believe that anything is wrong that gargling and prune juice won't fix.  Too many doctors pushed off her symptoms as being part of her dementia (ear pain, swallowing, claims that she wants her voice back -"It's changed.  It's not mine.")

I finally found an ENT that actually took a scope and looked at the base of her tongue (he said cancer to the assistants, 3 times on the first visit).  Asked if she'd smoked.  She's never smoke or drank at all, her entire life!    On the second visit, last week, (he wanted to wait two weeks and check it again to make sure it wasn't an infection),   he, again speaking to the assistants, stated that it was on the right side and extended to her tonsils and vallecula.  He scheduled the biopsy for tomorrow.

So, these symptoms have been going on for at least 6 months.  I finally quit my job, making 175k/yr, and moved home so that I could get my Mom to a doctor that could help her.  I NEVER expected the word CANCER to come out of the ENT's mouth!!  I don't know why, but I didn't.  I just figured, with all of the uncontrolled indigestion she has, that it was "LPR".

I've been home around 6 weeks now and she has complained about all of the doctor visits.  A gastroscopy came back negative for anything.  I got a copy of her medical charts from the PC and I see where several months ago my sister had taken her there and she'd been given antibiotics for swelling in her right lymph node but it didn't seem to reduce it in size!  The PC decided that it was just a muscle strain in her neck that was the source of the ear pain and tenderness and swelling.  I took a day off of work at that time and the PC refused to refer her to an ENT at that time. 

So, here I am.  In the last two weeks, my Mom has begain itching all over at times and having night sweats.  So, now I'm worried that it's lymphoma.

I did a little reading here and I appreciate the saying "It's not cancer until they say it is."  I appreciate it but I'm still in a state.

If it is cancer, can an 84 year old lady, weighing 120 lbs, with dementia, handle all of the treatments that I've been reading about here???

I can't make that decision for her but I wonder what the right answer will be.  I wouldn't want her to give up too soon but I also wouldn't want to make what's perhaps her last months of still being aware of "everything" into a nightmare.

Yes, I've read too much on the internet but if I hadn't read things on the internet, I never would have insisted on 2nd and 3rd opinions to find out what's wrong with my Momma.

 

Scared and Lonely

 

longtermsurvivor

Hi Daughter,

Sorry for the situation.  Many of those who post on this  board have had a delayed diagnosis.  It is just part of the territory, sad but true.  Assuming that she has cancer, she still would be in this situation, even if diagnostics had proceeded apace, but I understand the frustration you feel.  She will be a very difficult case, and the decision to treat will not, and should not be easy.  The oldest person who has been treated in the several years I've been here is 77, and he is doing well now, though it was a very difficult treatment and recovery for him.  We have seen discussion of treatment of people even older than your mother, but have no way of knowing whether any of them have actually persued treatment after full discussion.

 

Her dementia is a big problem, as you  already know.  If this is Alzheimers, then she is at least moderately advanced.  This disease limits life expectancy without any other medical problems, and her survival may be less than two years even  without this malignancy.  I think this is a very important thing to add to the discussion with her treatment team, which logically should include someone expert at dementia, as well as a medical oncologist, radiation oncologist and ENT oncologist.  The best you can do at the moment is to get the biopsy, then sit down for a complete review of the pros and cons of radiation treatment.  Because her situation will be radiation, or nothing at all.

 

Again, sorry for what brought you here.  I'm sure others will have opinions.

 

Pat

 

Ladylacy

Your Mother

So sorry to hear about your mother.  Cancer treatment for head and neck is one of the worse we were told when my husband at age 73 started treatment for laryngeal cancer.  His started with an occasion ear ache and swallowing problems.  Our PC gave him a prescription for ear drops and said if not better in 5 days to see an ENT.  Well he saw the ENT and the ENT told me that he didn't know what made him scope my husband on the first visit but he did.  He saw a tumor on his laryx and sent him for a CT scan.  Then a PET scan then a biopsy which our ENT had already told me he knew was cancer before the report was back. 

My husband went thru 35 radiation treatments, daily for 7 weeks and 3 chemo treatments.  It was rough.  He had a feeding tube and by the end of the second week he was using it.  The radiation, which we didn't know until they did surgery 4 months later had closed off the back of his throat and it had to be reconstructed.  My husband had no trouble with the surgery and our head and neck specialist said he should be the poster boy/man for how well he healed.  My husband told me he wouldn't do radiation again.  Well fast forward one year and the H&N specialist found a tumor at the cervical of his esophagus.  It was small when found.  PET/CT showed no spread.  The only option was more radiation and chemo.  I didn't think he would do it but he did.  Another 35 radiation and 7 chemo treatments.  3 months later, PET/CT scan and endoscopy showed nothing.  But then 4 months later the PET/CT scan showed that the cancer had reoccurred at the cervical of his esophagus, much larger tumor and had spread to his right lung.  My husband declined all further treatment.  The only thing offered was chemo and we were told it wouldn't cure, only prolong and could possibly hasten.  4 months later he is doing okay.  Pain that is controlled with medication and low energy but still able to do and go when he feels up to it.  

After reading a lot on this board plus others, I know in my heart that my husband's decision was the right one.  Now he was healthy up until he was diagnosed.  Your mother on the other hand has other health issues.  If it was my mother, I would have to think long and hard about putting her thru the treatment for head and neck cancer, especially if she had other health issues.  My mother, at age 81 sailed thru by-pass surgery but her last 2-3 years after surgery were hard on her and she often said if she had it to do over, she would not have had the surgery. 

You and your siblings might be the one to make the decision since your father probably won't and your mother won't understand.  It will be a hard decision, but don't let anyone tell you, doctors included, that treatment isn't all that bad because it is one of the worse with all types of side effects. 

Wishing you and your family the best -- Sharon

GrannysDaughter

Ladylacy said:

Your Mother

So sorry to hear about your mother.  Cancer treatment for head and neck is one of the worse we were told when my husband at age 73 started treatment for laryngeal cancer.  His started with an occasion ear ache and swallowing problems.  Our PC gave him a prescription for ear drops and said if not better in 5 days to see an ENT.  Well he saw the ENT and the ENT told me that he didn't know what made him scope my husband on the first visit but he did.  He saw a tumor on his laryx and sent him for a CT scan.  Then a PET scan then a biopsy which our ENT had already told me he knew was cancer before the report was back. 

My husband went thru 35 radiation treatments, daily for 7 weeks and 3 chemo treatments.  It was rough.  He had a feeding tube and by the end of the second week he was using it.  The radiation, which we didn't know until they did surgery 4 months later had closed off the back of his throat and it had to be reconstructed.  My husband had no trouble with the surgery and our head and neck specialist said he should be the poster boy/man for how well he healed.  My husband told me he wouldn't do radiation again.  Well fast forward one year and the H&N specialist found a tumor at the cervical of his esophagus.  It was small when found.  PET/CT showed no spread.  The only option was more radiation and chemo.  I didn't think he would do it but he did.  Another 35 radiation and 7 chemo treatments.  3 months later, PET/CT scan and endoscopy showed nothing.  But then 4 months later the PET/CT scan showed that the cancer had reoccurred at the cervical of his esophagus, much larger tumor and had spread to his right lung.  My husband declined all further treatment.  The only thing offered was chemo and we were told it wouldn't cure, only prolong and could possibly hasten.  4 months later he is doing okay.  Pain that is controlled with medication and low energy but still able to do and go when he feels up to it.  

After reading a lot on this board plus others, I know in my heart that my husband's decision was the right one.  Now he was healthy up until he was diagnosed.  Your mother on the other hand has other health issues.  If it was my mother, I would have to think long and hard about putting her thru the treatment for head and neck cancer, especially if she had other health issues.  My mother, at age 81 sailed thru by-pass surgery but her last 2-3 years after surgery were hard on her and she often said if she had it to do over, she would not have had the surgery. 

You and your siblings might be the one to make the decision since your father probably won't and your mother won't understand.  It will be a hard decision, but don't let anyone tell you, doctors included, that treatment isn't all that bad because it is one of the worse with all types of side effects. 

Wishing you and your family the best -- Sharon

My Mother

Thank you both.  It helps to have heard from you.  They were very thoughtful comments and I take them to heart.

 

Thank you so much.

S

GrannysDaughter

GrannysDaughter said:

My Mother

Thank you both.  It helps to have heard from you.  They were very thoughtful comments and I take them to heart.

 

Thank you so much.

S

On the 73 year old husband

My thoughts are still going round and round, of course.  I'm sorry for what he's gone through and going through.  Please keepin touch.

hwt

GrannysDaughter said:

On the 73 year old husband

My thoughts are still going round and round, of course.  I'm sorry for what he's gone through and going through.  Please keepin touch.

S

Prayers that your Mom's exam is negative. I will share that my own Mother, age 87, had stomach cancer last October. I broke into tears when radiation was mentioned and told my siblings I could not let my Mom go through what I did. Fortunately, they did surgery, removed the cancer and she recovered fairly quickly. The biggest problem was regaining her strength and loss of muscle from being in bed during her recovery. They said it took 3 days of recovery for each day she was bedridden. Choices for older patients are more difficult because you have other considerations, including quality vs. quantity. I hope you aren't faced with those choices. 

jim and i

hwt said:

S

Prayers that your Mom's exam is negative. I will share that my own Mother, age 87, had stomach cancer last October. I broke into tears when radiation was mentioned and told my siblings I could not let my Mom go through what I did. Fortunately, they did surgery, removed the cancer and she recovered fairly quickly. The biggest problem was regaining her strength and loss of muscle from being in bed during her recovery. They said it took 3 days of recovery for each day she was bedridden. Choices for older patients are more difficult because you have other considerations, including quality vs. quantity. I hope you aren't faced with those choices. 

My prayers are with you, mom

My prayers are with you, mom and family. My husband was 77 when he went through treatment but absolutely no other health issues. He went through 35 radiations, two cisplatin. He was hospitalized twice from the side effects. After treatment he had two more surgeries from treatment side effects and two years later still is on the feeding tube. I am not trying to scare you but want you to know this is serious treatment. When my husband's came back in his lungs he asked the oncologist what he would recommend if he was advising his brother. I suggest that maybe you might ask the question, "What would you recommend to your mother in this situaion?" But, remember, it aint cancer until they say it is cancer.

Debbie

tesa

jim and i said:

My prayers are with you, mom

My prayers are with you, mom and family. My husband was 77 when he went through treatment but absolutely no other health issues. He went through 35 radiations, two cisplatin. He was hospitalized twice from the side effects. After treatment he had two more surgeries from treatment side effects and two years later still is on the feeding tube. I am not trying to scare you but want you to know this is serious treatment. When my husband's came back in his lungs he asked the oncologist what he would recommend if he was advising his brother. I suggest that maybe you might ask the question, "What would you recommend to your mother in this situaion?" But, remember, it aint cancer until they say it is cancer.

Debbie

My mother was in excellent

My mother was in excellent health when she was diagnosed at the age of 83 with sinus cancer. She had never been seriously ill a day in her life; her mind was very sharp She was extremely active for an 83 year old. She went through surgery and radiation fine at MUSC in Charleston, SC. She was doing great and then the cancer returned 5 months later. We took her to MD Anderson. Then we took her to the University of Michigan, where at the age of 85 she underwent radiation again. This second time was so rough, she couldn't get herself out of the bed, couldn't hardly walk, couldn't swallow. She passed away 4 months after that. If I had to do it over again, I'm not sure. Surgery would have been tough because they'd have to remove her eye, very extensive. But the radiation was very tough. We didn't know what to do so we opted for radiation again. My mother wanted to try everything to prolong her life. So did we.

Sadly, age does make a difference for head and neck cancer.

 

tesa

jim and i said:

My prayers are with you, mom

My prayers are with you, mom and family. My husband was 77 when he went through treatment but absolutely no other health issues. He went through 35 radiations, two cisplatin. He was hospitalized twice from the side effects. After treatment he had two more surgeries from treatment side effects and two years later still is on the feeding tube. I am not trying to scare you but want you to know this is serious treatment. When my husband's came back in his lungs he asked the oncologist what he would recommend if he was advising his brother. I suggest that maybe you might ask the question, "What would you recommend to your mother in this situaion?" But, remember, it aint cancer until they say it is cancer.

Debbie

My mother was in excellent

My mother was in excellent health when she was diagnosed at the age of 83 with sinus cancer. She had never been seriously ill a day in her life; her mind was very sharp She was extremely active for an 83 year old. She went through surgery and radiation fine at MUSC in Charleston, SC. She was doing great and then the cancer returned 5 months later. We took her to MD Anderson. Then we took her to the University of Michigan, where at the age of 85 she underwent radiation again. This second time was so rough, she couldn't get herself out of the bed, couldn't hardly walk, couldn't swallow. She passed away 4 months after that. If I had to do it over again, I'm not sure. Surgery would have been tough because they'd have to remove her eye, very extensive. But the radiation was very tough. We didn't know what to do so we opted for radiation again. My mother wanted to try everything to prolong her life. So did we.

Sadly, age does make a difference for head and neck cancer.

 

donfoo

tesa said:

My mother was in excellent

My mother was in excellent health when she was diagnosed at the age of 83 with sinus cancer. She had never been seriously ill a day in her life; her mind was very sharp She was extremely active for an 83 year old. She went through surgery and radiation fine at MUSC in Charleston, SC. She was doing great and then the cancer returned 5 months later. We took her to MD Anderson. Then we took her to the University of Michigan, where at the age of 85 she underwent radiation again. This second time was so rough, she couldn't get herself out of the bed, couldn't hardly walk, couldn't swallow. She passed away 4 months after that. If I had to do it over again, I'm not sure. Surgery would have been tough because they'd have to remove her eye, very extensive. But the radiation was very tough. We didn't know what to do so we opted for radiation again. My mother wanted to try everything to prolong her life. So did we.

Sadly, age does make a difference for head and neck cancer.

 

Thanks

Tesa,

Thanks for you note. It is not all that common the "other" side of the story is offered out for obvious reasons. I think it is really important that when patients are of sound mind and given what would nomially deemed sufficient thought as to quality of life issues resulting for secondary cancer therapies, they are allowed to make their decisions. Sometimes that decision is very difficult for other loved ones but at the end of the day the patient is the one who is most impacted by the actions and administered therapies.

Also seems reasonable for caregivers to have the patient give some thought to the advanced care directives, even if one is not formally in place, at least the intent and wishes are hopefully coaxed out in case it is needed for direction. don