End of Life Issues
My mother is 86 years old and has esophageal cancer which has spread to an area of her chest between her lungs.
My motherís doctor told us that she cannot be cured since the cancer has spread to her lymph nodes. But the Doctor said that he can ďsustain her.Ē
Over the past few months, Iíve gradually learned, and Iíve reluctantly had to accept the fact that the cancer will eventually take her away from us.
I wanted to ask a few questions about her condition.
1. What is the average length of time a stage 4 patient can survive? 1 year? 2 years? 3 years? 4 years?
2. What is the average length of time a stage 4 patient can survive after she has decided to stop treatment? 1 month? 2 months? 3 months?
3. When you decide to stop treatment, where do people generally go for the last month or two of their life for care? A nursing home? Hospital?
4. I read on the internet that a person will suffer quite a bit after stopping treatment before passing away, that he or she will vomit frequently, will have to endure a lot of pain, etc. Does anyone know what a person has to endure before passing away?
If anyone has some knowledge about any of the above issues, I would greatly appreciate hearing from you.
I know this is not a pleasant subject to talk about, but it would greatly help me to know what to expect, and to see if itís possible to prepare in some way for what sadly seems inevitable.
Thank you very much for your kind help!
Hi Tom, I am very sorry that you find yourself here with these very heavy questions on your mind. Here is what I found when I researched your questions:
1. Generally, life expectancy for S4 EC is measured in months, not years. Of course, we are talking about averages and individual cases will vary widely from the average. Sadly, though, based on what I read your Mom is nearing the end of her journey.
2. When doctors, speak of "sustaining" a S4 patient, they mostly mean that through a combination of pain management and palliative treatments (chemo or radiation) they can buy a short additional amount of time and a higher quality of life during that time. My brother in law, who died from melanoma last April, gained about three weeks as a result of radiation which was used to reduce a tumor which was pressing on his spine. , for example. the doctors were able to apply this therapy because they knew they were delaying, not preventing the inevitable outcome.
3. The answer to this question varies widely. Many die at home, many go to skilled nursing facilities, some go to hospitals. If home is not a possibility (I think most terminal patients prefer that option as it is the place where they are most comfortable emotionally) then it depends on the patient's medical requirements during the end stage. What I strongly recommend is that you contact Hospice as they are the experts in managing the end of life process and they do it with care and dignity for the patient, above all else from what I have seen.
4. This is simply not true, Tom. Again, I refer you to Hospice for assistance. Part of end of life planning is pain management planning and there is no reason that a person should have to suffer as you describe while going through this phase of life. It can all occur with as much dignity as possible while ensuring as little pain as possible but neither you nor your mother should have to go through this without the active support of people in the community who provide this important service daily.
I hope I have helped a little, God bless your Mother and good luck to you.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
Thank you very much for your kind reply.
Sorry, for being so late in thanking you for your help. I’m struggling with all sorts of serious health problems myself. I’m also desperately trying to hold on to my job. And since my mother lives with me and I’m trying to take care of her, I often have very little energy left. But, again, thank you so much for your time and help.
My mother is still doing chemo every 3 weeks but it is getting harder, much harder for her to do chemo. Since Stage 4 cancer is not curable, and as she will eventually have to stop chemo, I am very worried and nervous about the future.
It’s too bad that stage 4 EC patients have such a short time span before they pass away.
I’m sorry to hear that your brother in law passed away from melanoma. It’s sad that they were only able to extend his life for only 3 weeks.
Thanks for the information about Hospice care. I have no friends or relatives to turn to, and no knowledge about these issues so all this information is very new and helpful. Before reading your post, I thought that pain and suffering were inevitable for people who are passing away. It’s great to know that thanks to Hospice care, patients don’t have to endure much pain. It’s truly wonderful that Hospices are providing such a valuable and important service. Thank God they are there to help!
Thanks again for your thoughts and prayers. I greatly appreciate your kind help!
Kermica gave a much more informed response than I can, but I just want to add my agreement with the recommendation of hospice. My parents both died of cancer (bladder and pancreatic), and we found that hospice was a wonderful help. Both were cared for and died at home. Neither of my parents vomited at all. My father had virtually no pain, and my mother had some pain but it was well managed with morphine. I actually went out to dinner with her only a week or two before she died. I found that the hospice nurses actually knew more about pain management than the doctors. My parents died over 10 years ago. More recently, I have heard that some hospices are a lot better than others. I would recommend interviewing 2 or 3 hospices and going with the one you like best. Death is not easy, but it is something that we will all face. I hope that you will be able to find the right support and make your mom's passing as easy as it can be. God bless.