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Released from Hospice Care

11D1067
Posts: 1
Joined: Sep 2018

Need any info on where to go from here.

My 81 year old mother was diagnosed with Stage 3 esophageal cancer 9/17. After 15 radiation treatments and 4 chemo treatments she decided December of 2017 to stop treatment.  Her Ongologist suggested  Home Hospice Care and my mom agreeed. we questioned should she have some sort of scan just to see if the treatments did anything and were told ”No, It was doubtful they did anything “.  

We brought mom home started Hospice in of January 2018.  This week on 9/25/18 Hospice decided to do a CT Scan. I honestly think they thought she had lived to long. The results were a bomb shell. No metastatic cancer showing anywhere, no cancer in lymph nodes but a “thicking of the esophagus “ showed. 

Hospice has now deemed her not at end of life.  My mom can barley walk to bathroom, has awful hallucinations, wetting herself, screams if you move her back a certain way! She has layed  in bed for 7-8 months!  Me and my siblings are in shock!

Does A CT scan with contrast give you a true picture?

We now have to start with going back to PC physicia and see what’s next.  My mom still smokes a pack of cigarettes a day!,

Any help, suggestions, thoughts would be greatly appreciated.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

My Dear “Shocked Siblings”

Since my husband is now into his 16th year of survival with no evidence of disease from his Esophageal Cancer DX in November of 2002, I keep a check on this forum as well as Ovarian Cancer and Peritoneal Cancer.  (My current diagnosis)  This is not the usual letter we receive here.  So please allow me to give you my personal thoughts as a Stage IV (terminal) Peritoneal Carcinomatosis/Ovarian Cancer patient. 

In my husband’s case, after his initial treatments of radiation and chemo, his PET/CT scan did not show any cancer, and he was deemed eligible for an esophagectomy.  He was 66 and way too young to die.  And like you, we’re in sort of a state of shock that he should be alive still with no cancer now some 16 years later.  That said, however, he is 81, and at that age some parts of our body just don’t work as well as they once did.

“Too soon old—too late smart” is fitting here.  When we’re young and have boundless energy, most of us take good health, vim and vigor for granted.  Other people are going to get old—sick and demented—but not us!  But now we have “passed” the golden years (which I think are in the—oh perhaps 45 to 65 year-old range—we are now into the “silver threads among the gold” era.  By this time, the gold is wearing thin if at all visible.  And we’re just happy to have some hair left, no matter the color.  But let me try to answer one specific question. 

“Does A CT scan with contrast give you a true picture?”  My answer—It can, but a PET/CT scan gives a more definitive picture of what’s going on inside.  The PET scan shows live activity in addition to the flat images that a CT scan shows.  (See a more detailed explanation in my references below.)

But since Mom only had 4 chemo treatments, it is not surprising that a scan shows “thickening in the Esophagus”.  This indicates to me that while the chemo obviously was working, to stop with such a few treatments gives plenty of opportunities for the cancer to “flare up again.”  Now understand this is just my opinion, but usually it takes a longer intense series of powerful chemicals are administered to assure the best result.  But it is indeed miraculous that Mom’s cancer treatments yielded such great results in such a short amount of time.

Moreover, you say your mom smokes a pack of cigarettes a day.  Esophageal cancer likes to spread to the lungs when it metastasizes (spreads).  So for best health in the future she should “stop smoking”.  Now tell me that someone is going to be able to have Mom stop smoking!  I doubt it.  Usually anyone smoking a pack a day has had the habit for quite some time.  So I doubt that she will stop smoking.  So most likely you won’t be able to “help” her, unless she wants it.  Smoking and drinking are two heavy contributors to Esophageal cancer.

However, most of the ones who write here tell us of their having had difficulty with swallowing and acid reflux and have usually been taking some kind of antacids for a long period of time.  In fact, they should have had an endoscopy instead of having some kind of omeprazole prescribed by their doctor.  And as an aside, NEXIUM should only be taken for a short period of time.  Continual use can actually “mask the symptoms of Esophageal Cancer”.  (See referenced article below)  Often long-time Nexium users are surprised when they are diagnosed as a Stage IV for that very reason.

Now another important thing you tell me is that “SHE DECIDED TO STOP TREATMENTS” .  You say she was diagnosed in September of 2017.  She began treatments but decided to “STOP” treatments in December 2017.  To me, this is “key” in what YOU and the rest of the family members can do.  In reality, it is Mom’s decision to make.  It’s her body and only she feels the physical effects.  Your pain is one of a different sort, worrying about how on earth you can help.

Believe me, if Mom felt as bad as I did, particularly this last couple of weeks, I would not want to continue to take more chemo either.  (Some days I feel quite normal but on other days I have lots of problems.  But this letter is not about me.)  Only she knows the pain that she felt.  I was diagnosed as a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient back in November of 2012.  The normal life span for my cancer is 29 months.  So really only by the grace of God have I survived this long.  So I’ve “outlived my first 5-yr. handicap placard, and am on my second one.  However, “quality of life” is key for me.  I told my oncologist that if I were going to feel like this with almost non-stop nausea, diarrhea, vomiting and total dehydration, plus fluid buildup in the lining of both lungs making it more difficult to breathe that it would be time for me to stop treatments.  Now those are just “side effects” I live with, that doesn’t describe my surgery, radiation and chemo treatments.  This is just to let you know how one going through treatments often has to deal with “side effects” that are most unpleasant.  And if Mom felt like, “This is no way to live and stopped treatments for that reason--then that’s the decision you have to live with—agree with it or not!”

And so as part of my letter to you, I am going to once again put out an article written by the MAYO CLINIC back in 2006.  It’s all about “When to stop treatments.”  It’s now been updated.   Since then the article has been rewritten and condensed and doesn’t give as much insight as when to stop treatments as did the article that I saved from 2006.  So I will give you both those references here and I would suggest you print out copies and give to all the members of your family.  Bottom line, your mom is the patient and the decisions are for her to make!  So if she wanted to stop treatments, that was her prerogative.  And you will have to learn to cope with the hurt of remembering how your mother was in years past when she was raising you and what she deals with now.  Life just plain hurts at some time for all of us.

Believe me, although you are now “adults”, if you are like most the mom’s I know, at age 81, she is “still the mother and you are still the child!”  Now that may work differently for some families, but as long as my mom had breath, she was the one in charge of all the decisions she would make.  She went to be with the Lord at age 99, but was still in charge as long as she had breath to voice her opinion.  Now mind you, we were allowed to “help out”, but the instructions were hers to give!  And although you’re wondering “what do we do now?” relative to her health going forward, most likely that choice will probably be made by your mom alone.  Now I may have her all wrong.  She may be totally compliant with your wishes.  Even in that event, you do have a dilemma on your hands, and I for one can’t imagine how you are going to deal with it.  So this letter is more commiserate than helpful you might say.

Now if Mom stopped treatments in December of 2017 that would normally have been the time to conduct a scan to see if anything had helped.  Perhaps the doctors just “presumed” there could have been no progress since she “stopped” the treatments seemingly before completion.  Now to your shock and surprise, you discover that she had responded to the treatments even though no scan was done.  If you knew what we patients here know, you probably would have insisted that a scan be done to find out if they had helped at all.   But so many family members haven’t a clue as to what should be done, and many rely solely on their doctor’s advice, and rarely do they get up the nerve to “tell the doctor what they think would be a good idea.”  After all, we’re not doctors and many of us had never heard of Esophageal Cancer before someone in our circle of family and friends had been diagnosed with it!  So you’re not supposed to know everything from the very beginning.  The “learning curve” increases with the “living out” of the cancer.

  • So your letter raises a few questions in my mind.  Did your mother stop the treatments because they were so painful?
  • Did she have other extenuating medical conditions that required her to be bed-ridden for this long? 
  • Once her treatments stopped, did she continue to have symptoms that would make you think no progress had been made?
  • Why is she having hallucinations?  Is she on tranquilizers?  These are just “wondering-what’s-going-on” questions.  You don’t have to answer them. 

Anyway, the bottom line is that Hospice has now dismissed Mom at this point.  Obviously, they don’t consider her critical.  So it would seem to me only natural that she is extremely weak just from being in the bed for this many months.  It would seem at the least that doctors are going to recommend that some physical therapist come in and help her with regaining physical strength.  And God only knows what’s been going through Mom’s mind probably thinking that she is going to die no doubt, and wondering when.  At least if I were she, that would cross my mind.  Most likely, anyone who has been diagnosed with cancer will have those thoughts at some time.  I have and when I do, the Lord says “Just live today Loretta—today you’re still alive!”

At this point, when you go back to Mom’s regular physician, you should expect some definite recommendations as how best to get Mom back to some reasonable quality of life.  There are lots of people over 81 that are still enjoying life.  My husband is 81 and I am 79.  We know that there are just general aches and pains that come along with this age, and we deal with them as best we can.  And there’s a lot of truth to the old saying, “My get-up and go has got-up and went!”  Yet we still are in a good state of mind.  There’s a lot to be said for that, and I would hope that Mom will have a “thorough physical” to see if there is anything that isn’t working for her now that can be “fixed.”  I would love to think that she can return to a normal state of living prior to her diagnosis in January 2017.  And she will have to be willing to “get better”. 

I know I haven’t been a lot of help, but I just wanted to let you know that we have read your letter.  I know you are all wondering “what now”.  As I said in the beginning, your letter is unique.  Once Mom “adjusts and accepts” the fact that she is cancer-free, perhaps she can regain her sense of normalcy.  Since I’m not a psychiatrist or general practitioner, I really don’t have a clue as to how mom is going to be rehabilitated—but I hope it’s not going to be difficult and before long both she and you will be happy once more. 

Concerned but clueless Undecidedbut wishing you all the best!

Loretta

P.S.  The articles referenced below should be read in their entirety but for the sake of a short explanation I just use a short portion of the beginning article. 

___________________________________________ 

1.     https://www.medicalnewstoday.com/articles/154877.php

A positron emission tomography, also known as a PET scan, uses radiation to show activity within the body on a cellular level.

It is most commonly used in cancer treatment, neurology, and cardiology.

Combined with a CT or MRI scan, a PET scan can produce multidimensional, color images of the inside workings of the human body.

It shows not only what an organ looks like, but how it is functioning.

A PET scan is used to diagnose certain health conditions, to plan treatment, to find out how an existing condition is developing, and to see how effective a treatment is.

_________________________________________________ 

2.     https://www.medicalnewstoday.com/articles/153201.php

CT scan or CAT scan: How does it work?

Last updated Tue 24 July 2018 - By Christian Nordqvist - Reviewed by Seunggu Han, MD

1.                 What is a CT scan?

2.                 Uses

3.                 Procedure

4.                 Risks

5.                 Finding a radiologist

A computerized tomography (CT) or computerized axial tomography (CAT) scan combines data from several X-rays to produce a detailed image of structures inside the body.

CT scans produce 2-dimensional images of a "slice" or section of the body, but the data can also be used to construct 3-dimensional images. A CT scan can be compared to looking at one slice of bread within a whole loaf.

CT scans are used in hospitals worldwide…”

_____________________________________________ 

3.     http://www.post-gazette.com/home/2011/08/01/Heartburn-meds-tied-to-cancer/stories/201108010183

“Heartburn meds tied to cancer

Popular drugs may mask risk for disease

 David Templeton- Pittsburgh Post-Gazette- dtempleton@post-gazette.com-

Aug 1, 2011

12:00 AM

Drugs such as Nexium, Prilosec and Prevacid that control production of stomach acid and treat heartburn, reflux, peptic ulcers and related conditions are some of the most popular medications on the market.

But long-term use of these drugs, known as proton pump inhibitors, can have unexpected consequences, a new study shows.

Blair A. Jobe and his research team at the University of Pittsburgh School of Medicine say the severity of symptoms for GERD, or gastroesophageal reflux disease, has an inverse relationship with the presence of Barrett's esophagus, a precursor to a lethal form of esophageal cancer known as adenocarcinoma.

The concern is that good symptom control does not reduce cancer risk but actually increases it.

The study, published online by the journal Archives of Surgery, also raises questions whether proton pump inhibitors might cause the cancer, whose incidence per million has risen sixfold from 1975 to 2001, a time when PPIs came on the market with increasing use. It's the fastest growing cancer in the nation, outpacing melanoma, breast and prostate cancers.

In the Pitt study, patients taking PPIs who reported no severe GERD symptoms had significantly higher odds of having esophageal cancer as compared with medically treat patients who reported severe symptoms…”

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4.     https://www.cancer.net/cancer-types/esophageal-cancer

 Esophageal Cancer - “This is Cancer.Net’s Guide to Esophageal Cancer. Use the menu below to choose the Introduction section to get started. Or, you can choose another section to learn more about a specific question you have. Each guide is reviewed by experts on the Cancer.Net Editorial Board, which is composed of medical, surgical, radiation, gynecologic, and pediatric oncologists, oncology nurses, physician assistants, social workers, and patient advocates…”

_______________________________________________ 

 5.     https://csn.cancer.org/node/299199

My letter posted back in 2016 quoting the “2006” Mayo Clinic article which is different in many aspects from the latest Mayo Clinic article referenced below.  It specifically dealt with “Stopping treatments—when the time is right.”

______________________________________________ 

6.     https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20047350

Cancer treatment decisions: 5 steps to help you decide…”

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