I have read quite a few postings under different forums and I am concerned. My mother, 85, has a large painful lump at the base of her throat. Cat scan shows that half her throat is closed, they referred us to a tumor center, appt is next Tuesday. Has not been diagnosed with cancer yet, but from all the forums here, that is probably what we are looking at. She has many medical problems already and all the treatments that I have read about on these boards may do her more harm than good and I am not sure she will survive them. If that is the case, and she chooses not to be treated, what will her death be like? Is this the nightmare it sounds like, will this be a horrific death without treatment, or are there things that the doctors will do to make living til the end a bit better/easier? I have been caring for her for the last two years because my father got ill and died of liver cancer. We cared for him at home til his time came, but this sounds much worse. Someone please enlighten me, what is around the corner for us?
Carol

Carol, my heart goes out to you and your Mother. There are several forum members who have had to travel the same road you're on, unfortunately. I'm sure many will offer their opinions. Know that there are those of us who care about you and what you're facing. Keep posting...

Lois & Buzz in NC

Thank you for your reply. I was afraid it was too blunt, but did not know any other way of asking. I don't want to offend anyone or make anyone feel bad, but this is my reality. My heart is broken, I don't want to see my mother suffer and I don't know what's coming, but the direction it's going is very disheartening. The treatments I have read about here are effective, however severe, which will kill her. Thank you for your thoughts......
Carol

Hello Carol.Please feel free to ask what is on your mind and I will do my best to answer any specific questions you have.Sometimes this sort of subject can be more openly discussed on private message or personal e-mail which you will find in my profile bearing in mind no two people are the same,but i may be able to put some of your worst fears to rest.

liz

[i] Hello.... Cookey I responded to you yesterday via personal message and was expecting a response, however, reading some of the other boards, it appears that this function may not work properly and you may have not received my message. I am dissapointed that I haven't received much in responses to my post. Is it because my mother is so old that there aren't very many out there that have experienced my problem or is it because the idea of death as a reality is not something that people are willing to discuss? My heart is broken! My mother is going to die! Whether it be with the treatment....which will kill her or without the treatment, which will kill her, please someone tell me, which is the kindest? I don't want to see her suffer any more than she has to...........
Why doesn't anyone answer me? My keyboard is wet from my tears and yet I cannot cry in front of her, I have to be strong for her and give her strength. I know that she knows that she is going to die. She was smiling and laughing today when she had no reason to, so very unlike her..., she has an onry streak. She is trying to make me feel better. Am I in the wrong place to share my pain and sadness?/i]
There has to be someone out there that has been here before
Please help me
Carol

Hi Carol,i have checked my in box and i have no private messages.I really don't know what the problem is but be assured i will respond to your post immediately.Luckily i put a watch notification on this subject and got a message to my personal e-mail address which you will find in my profile if you want to write to me there.



love liz

HI Carol
just checked and pauls posts are under coping with anger and fear not blogs.his screen name is PaulR last one was in january.

love liz

Carol, Liz
if I am not mistaken his screen name is: Paul R (with a space) otherwise you will not find it.

It may be easiest to search for his posts under user lists.

Markus

Carol -- Trust me, nobody is ignoring your post or avoiding the subject. However, it is a specific topic that I, as a survivor, do not feel qualified to express a view on. I have not had someone close die of this disease, and frankly have difficulty putting myself hypothetically at your mother's age, with her various health problems, and facing possible cancer treatment. There are so many variables, it is an impossible task unless you have been there.

Liz has been there, and continues to contribute to the community in a most wonderful and caring way. Keep in mind that not many people have the generousity and courage to continue contributing to a site like this after losing a loved one.

For me to offer advice on this subject would be presumptuous, and potentially damaging. None of us want to say or do anything that would steer you on the wrong course. Those with direct experience are really the only ones who can meaningfully contribute.

Thanks Markus,i just e-mailed the thread to Carol it seemed easiest.

love liz

Carol,
I'm so sorry, you've been through a lot already. It can take a few days sometimes for people to get online and read the board. Don't loose heart, you are in the right place for compassion, and as many answers as possible. There are a few people that I can think of that could help more than others, one is JulieKay, who lost her husband Rich who chose no treatment. I understand your fear, and that you are heart broken. This is a scary situation for you and your mom. There may be ways, if it is a tumor, to shrink it without causing her a lot of problems. Many folks here would say, it isn't cancer until the doctors say it is. You're doing the right thing by researching and learning all you can, and by reaching out. Please give the folks here a chance to read and respond, they surely will. Fear of the unknown is the worst, I hope you get your answers and comfort you need to make peace with whatever you are facing.

Hi Carol,
I am going to be of no help at this point, but wanted you to know I care and will keep you and your mom in my thoughts. I have been receeving some messages from other members telling me that they PM'd me but they never came through...that normally doesn't happen here. I'm sure that now that it is Monday, you'll be getting more responses.
All the best,
Donna

Carol,
I think one of the reasons you are not getting too many responses is very few people choose that option and most of their caregivers leave the board after it is over. Thus if you are PMing them, they may never see it, nor can one reply to a PM without signing onto the board. Better you should email them.

There is a thread called 'Refused all Treatment' by Paul R, who happens to be my boss, in the Anger and Coping section page 4. I now see that Liz emailed it to you. Paul has rarely been on the board since his mother died so do not PM him. However, you might try emailing him and I think he will respond. His Mom was only 71 when diagnosed, had several other medical issues, but was a fiesty lady to the end. She lived a year and 1/4 and went quickly at the end. Most are not that lucky from what I read on the board. There are other stories of the final days in the blog sections. Read Liz's, Amy's, Rosie's,and I believe Rick's. While these peoples relatives did not refuse treatement, they did not make it.

Keep us posted on what the dr says and do lots of reading on the board.

Take care,
Eileen

Ditto to what Jeff and Donna said.

There are things that can be done to slow progression/provide relief. Even radiation can be used that way without getting into all the problems that you get when you are treated in the curative mode which is what you have been reading on these boards.
What is feasible, makes sense and/or can be tolerated by your mother has to be evaluated by your team.
Hopefully, you will hear from GC that have experience with palliative treatment. (If that is what makes sense).

I wished I could help more....

Markus

Hi Carol,
I am not sure if or how I can answer any of your questions, but I can share with you the similar experience I went through. My mom, at the age of 71, passed away from oral cancer in November 2006. She was diagnosed in February 2006, had almost half of her tongue removed in March 2006, and went through only radiation in the summer. After radiation treatment she had a lot of problems with mucous and thrush. What we didn't know was that the cancer went to the other side of her tongue, down her neck, and who knows else where. Towards the end of October one day she had serious problems breathing as her throat became swollen so we had her taken to ER. They ended up putting a trach tube in her so she could breath, and they told else the cancer has spread and she is terminal with less than 6 months. BIG shock to us. We made plans to move her to a Hospice where we believe she received the best care possible. They gave her drugs to clear up the mucous and ease her pain. I was holding her hand when she went very peacefully. She passed away 10 days after going to the ER. We believe the Hospice made her very comfortable.

It is a very difficult subject for me to talk about because it is like I am reliving it, and I also was diagnosed with oral cancer in 2007. Right now I am 6 months post treatment with everything clear. I do understand the pain and anxiety you are going through, and will try to help as much as possible.

Without knowing the cause of the swelling in your mom's throat, it is hard to say what will happen. I would think for now what ever the case they would keep her comfortable.

Please update us with more information after the Drs. visit on Tuesay, and I think you will get more responses.

Carol:

Im sorry, I do not have experience going thru what you are asking. I just wanted to say I feel badly that you are going thru this. I cant begin to image the internal turmoil you must be feeling. Please keep posting, there are many on here who can help by giving you emotional support.

Hello all

Thank you all for replying, it was very nice and very helpful.

Liz,
I read your blog last night til 2am, amazing, I had tears running freely down my face throughout most of it. I can't even put into words how I felt reading it. It was good, it was sad, it was uplifting and depressing, it was everything.

I also read Paul R as you suggested today and there were lots of insights for me.

I will get back to you all when we know more, I feel better, but I need to take mom to the dentist now, her front cap popped off and she looks like the toothless wonder.......

Talk to you soon and thank you all so much

Carol

Carol,
Is was Rich's Plea in the blog section, not Ricks.

Eileen

Hello to all,
Thank you for your concern, I appreciate it. I do have questions here at the end of my update, so if you have an opinion, I would be grateful to hear it. I have not listed any specifics previously because I wasn't sure what mom's problems were, but we went to the emt today (tumor specialist). After examining the cat scan and her personally (without a biopsy), he said she had a SCC (Squamous Cell Carinoma) at the base of her tongue which was mid-range in size. He did not see that it had metastasized to her lymph nodes, but was not sure. He did see some spots on her lungs. I personally believe that the spots on her lungs were already there. (emphysema) He has set her up for a pet scan to determine if she is cancerous elsewhere. Mind you, I have not shared with mom the information that I have gleaned from those of you on this website. We discussed various treatments, of which I told him that surgery and chemo was out of the question - she would not survive the treatment and her remaining life would be miserable, he agreed 100 percent. We discussed radiation treatment... and I expressed my concerns about the burn and blistering of the throat, the damage to the salivary glands and the possibility of having to pull her teeth to avoid infection. He suggested that there have been recent cases in which very low doses of radiation have slowed the growth of the cancer and in a very few (rare), disposed of it. He also said that he would not recommend radiation (even low dose) without the radiologist suggesting that she was a viable candidate for such treatment and therefore would set up the appt to see the radiologist. If the radiologist says that she is a viable candidate for this then we would need to get a biopsy. I know a biopsy is normal for most people, however it is not for mom... here is a partial (because I don't know all that she has or what the past is} of her medical problems--She has or is:
legally blind due to torn retina caused by the arthritis
asthma
copd
mild emphasema
severe arthritis (which is crippling without meds)
mild strokes (for which she take blood thinners)
weak heart
vertigo
high blood pressure
irregular heart beat
I am sure there are many more, I just can't think of them at the moment and she is physically weak. I whip out the wheelchair if we need to walk more than 200 feet - because she needs to rest.
She is on medications for all of these. Her heart has stopped on the surgery table before, it is difficult to get her back after being anesthetized.... not a good thing.
A biopsy for mom is surgery, which means that she needs to NOT take her blood thinners. Hazardous... but acceptable
The emt said he would do the biopsy if the radiologist said that she was viable for the low dose of radiation, otherwise it was not necessary because the outcome will be the same - death. He wasn't blunt like this, but I was pulling teeth. He also said that he would like to insert the trachea and PEG while she was still healthy enough. He needed her to be able to go off the blood thinners for 5 days and would schedule both procedures to be done so that she would only have to go off the meds the one time. He did not explicitly say, but the inference was that if she did not get the trachea she would suffocate. He suggested that both would be for her future comfort and she did not need to use them until the actual need arose. I am assuming from this that her throat is closing from the cancer and if another avenue is not provided she will slowly suffocate from lack of air. The PEG is so that she will be able to receive the benefits of nutrition and medications (I assume mainly for pain management). Mom understood that she had cancer and was going to die, but she was looking dumbfounded as we discussed the tubes and meds and feeding and what was so not acceptable to me. This particular cancer to me really is "SO NOT ACCEPTABLE". We cried together before going to bed, kind of....she has no tear ducts due to previous surgeries so she can't physically cry.
I would like some opinions please on what you think about placing the trachea and PEG tube at this stage? Some of you never had one or the other, let alone both, what do you make of this? Do you think this is reasonable or advisable? Any opinions here are appreciated.
Thanks again
Carol

Carol,
My heart goes out to you. It seems to me that the doctor's suggestion is wise. He is saying that IF the radiologist agrees that it would not be harmful, the low dose radiation would provide relief for your mother. The trach tube and PEG are not pleasant to see but as someone who had both for a while I saw them as alternative means of the basic functions of life, breathing and eating. Instead of guessing and worrying, ask the doctor why he is recommending them.
You have not mentioned her primary doctor. I would certainly recommend getting his opinion as well as that of any other physicians she is seeing. Ask the ENT to forward results of his diagnosis and the CT and PET scans to them for their records.
Until the results are in you really are in limbo. You are making assumptions based on fear and love of your mother. Is there anyone you can talk to whose judgement you trust to help you through this.
My prayers for your mother and for you.
Malka

Carol my heart goes out to you during this time.
I really don

Carol I am so sorry to hear of your mother's cancer diagnosis on top of the multitude of other health issues she has. It certainly makes treatment decisions more complex. I can understand the use of palliative radiation in an effort to shrink the tumour. The PEG tube is a good avenue for administering nutrition, medication and fluids to keep her hydrated. I would have reservations about the tracheostomy as being hard on her and the care required following. Would the Dr. consider a wait and see on the trach? Are you able to have a meaningful discussion with your Mom about these things to know what she wants in terms of care. There are medications available to control symptoms that occur at the end of life, even shortness of breath. If she gets to the point that she is not able to take her heart medication, cause of her death could be her heart giving out. Usually not an unpleasant death. There certainly are lot of things for you to think about, but if your Mom is able, let her be your guide. Do you have good medical support from your primary care doctor and home care nursing services available, also family support?
Sending you hugs, courage and strength for the days ahead.

Thank you Malka,
Talked to her GP yesterday who looked at the ents notes and made a few suggestions for the remaining months of her life. He did recommend the tubes, stating that death by slow suffocation or starvation was not pleasant or the desireable path to follow. He also stated that his opinion on the radiation was - if they cannot say that they think it will improve the quality of her life then don't risk the quality she has now for the months that are left. He put in a referral for hospice care and gave her several different options for pain management. The PET scan was done last Friday and we see the tumor panel next Monday. After we see them and digest their recommendations, then mom will finally have to decide.... This is all very difficult. Thanks for your input, appreciate it.
Carol

Michelle and Wallyswife,
Wow, you are so courageous and your journey has been very tough indeed. I just replied to Malka before this reply, having not realized that there was a third page to my post - must be a dumb blonde thing...., so I just repeated it here. I talked to mom's GP yesterday who looked at the ENT's notes and made a few suggestions for the remaining months of her life. He did recommend the tubes, stating that death by slow suffocation or starvation was not pleasant or the desireable path to follow. He also stated that his opinion on the radiation was - if they cannot say that they think it will improve the quality of her life then don't risk the quality she has now for the months that are left. He put in a referral for hospice care and gave her several different options for pain management. The PET scan was done last Friday and we see the tumor panel next Monday. After we see them and digest their recommendations, then mom will finally have to decide....
Michelle - I hope your husband fares better than your other family members have, my prayers are with you also.
Wallyswife - Yes, mom understands what is going on, she just doesn't know the type of death that is just around the corner. Either way - there are no easy choices. Thank you for your care and concern.

Carol

Carol my heart is with you .I send my prayers. It is so hard to watch a loved one suffer like this. We stood by my dad until he took his last breath. He chose to come home and not die in the hospital. The Drs gave him morphine for if his pain got too severe. He never took one. You have to be strong for your mother but really it will show her more if you did in fact shed some tears for her and with her. I do understand she has other medical problems. I have to walk a step behind my mother most of the time now because she has a heart condition and passes out alot. Now I have added to her stress with my cancer. We lean on each other and can only offer our hugs, tears, fears and most of all our love for each other. I told her today that if this next biopsy proved to be cancer again I would not take further treatments as that is my right. She told me she would stop taking all the drugs that she is on as that is her right. Neither one of us will do what we said because we have to be there for each other. Be there and give her your support. My mom lost her youngest son to cancer in 1978 and my dad ten years ago. The Drs told her that when abody gets to a certian point it shuts down and feels no pain. so her laughing and smiling may be Gods way of releaseing some of her pain.I don't know if this will help you in anyway but after watching members of my own family I do know that after what seemed an eternity of pain it was like they stopped having pain. My baby brother refused the drugs for pain that the Drs gave him saying he didn't need them. My mom hurt enough for the both of them. She is my hero and most likly the strongest person in the world at least to me she is. Yes she is in pain but she tries to hide it best she can but I see it in her face. I try to give her some of my pain meds but she refuses. Pray for her not to be in pain, God does answer I now this for a fact. Good luck and again I will send out a prayer tonight and every night for you and your mom. Brenda

Hi, My husband decided not to have any treatment because of other major health problems. I ain't going to lie is was terrible the last few months. He was diagnosed 7 months before h died though. And I believe he he wasn't so stubborn hospice could have made the last few months more bearable for both of us. He had to be nagged, begged and threatened to increase his pain medication. As bad as it was though we never regretted not having it treated as he really enjoyed the first 5 months after his dx. So as with anything it depends s much on the individual. If you have any questions please feel free to contact me.