The Blunt Truth About Terminal Colon Cancer
NOTE, THE FOLLOWING IS GRAPHIC. THIS IS NOT INTENDED FOR ALL AUDIENCES!
No one wants to talk about death, especially when a loved one is faced with illness. You want to focus your energy on taking care of your loved one and worry about making them well again. But at some point, you may need to face facts that healing is not what God has planned. I know from experience. My Mom just passed from Colon Cancer. Iíve searched high and low for an honest look at what to expect and let me tell you, there arenít answers out there because no one wants to tell you the truth about what happens when someone you love is dying from Colon Cancer.
No doctor wants to be blunt about what to expect when we finally ran out of treatment options. And frankly, no one online was addressing my practical questions either. Itís uncomfortable, painful, and terrifying. So having just been in those shoes, I want to post this online and possibly help any other families facing the same mountain mine just climbed. You need to be prepared for what is waiting on the other side.
Each type of cancer is unique and will attack the body in a different way. My Momís cancer was a rare form of Colon Cancer. The cancer grew within the fat in her abdomen, making it squeeze in and around her organs. Please be aware that not all Colon Cancer acts this way and certainly, not all cancer is the same. Lung cancer is different than liver cancer and so on. I am not a doctor and I can only explain the progression as I personally experience it with my Mom.
I am not writing this to make money from it, I just want people to have the answers I could not find when I needed them. Please feel free to share this with others facing the same battle with Colon Cancer. Information is power and itís scary to experience this without being mentally prepared. The following will help prepare you for the various stages involved with terminal Colon Cancer, as my Mom had experienced.
Let me start by saying that Colon Cancer is aggressive and it hides. There are millions who face cancer and never relapse but the odds of Colon Cancer relapsing are huge. The left side of your body is full of cavities cancer can hide in and with few organs on that side of the body, so it is easy for the cancer to go unnoticed. My biggest regret of this whole journey was listening to her doctor.
My Mom had stage 3 Colon Cancer, originating in her Appendix. After a long string of Folfox treatments, she was told she was in remission. Her doctor waited one year to retest her. He was confident that they had caught the cancer early and knocked it out. But little did we know it was hiding and came back with a vengeance.
When she was finally retested, she was promptly told that she was terminal. She was now stage 4 with Colon Cancer. What a blow for our family, as the doctor was never honest about the chances of relapse with Colon Cancer. After the diagnosis, I found countless resources online that confirmed that Colon Cancer requires very frequent testing due to the aggressive nature of this form of cancer.
If I could go back in time, I would have gotten a second opinion or insisted the doctor run tests every three months despite protocol. Iím sure the obstacle was insurance related, but had my Momís insurance provider forked out the grand for more frequent tests, it would have saved them hundreds of thousands of dollars in the following three years of hospital stays, medicine, and chemo treatments.
My Mom was on three different versions of chemo during those three years. She had a port put in since dehydration is common with Colon Cancer. She had issues with loose stool and a general lack of wanting food or water. When the body is lacking enough water or is losing water from frequent restroom visits, the veins tighten up and it makes drawing blood or installing an IV quite a tricky and painful experience. So the port allowed the Oncologists to pull blood for testing and delivering the chemo to my Momís system.
With the chemo treatments for Colon Cancer, here are a few things your loved one may experience. There may be more but from my Momís experience this is what Iím familiar with:
1. Extreme sensitivity to cold, so keep them bundled up. When my Mom had her first treatment and walked outside to the cold car, she lost her breath. It actually took her breath away and my Mom was not a frail woman by any means and she grew up in this area, so she was quite familiar with cold weather.
2. Chemo will cause their feet and hands to ache. My Mom found that diabetes cream worked for her. It has capsaicin (chemical found in hot peppers) in it so it helped the circulation in her extremities. The doctor approved of her using the cream and stated it was not interacting with her type of chemo.
3. My Mom also experienced over time an increase of mucus. Her eyes and nose dripped liquid. She always had tissues on hand. Often times, she was unaware of her leaking and needed to be told to wipe.
4. You can also expect loose stool with Colon Cancer. It can be extreme. My Mom had to swallow her pride and wear protection when going out in public. We had to plan eating around activities. She found that food came and went quickly, so eating dinner AFTER the movie became a better idea.
5. My Mom also had issues with her skin changing. The dehydration and malnourishment was making her skin paper thin. She bruised very easily and her skin would crack open and she would get the occasional blood blister. Silver cream worked well but any thick moisturizer should help with the cracking.
6. Her circulation was affected. She wore tight, therapeutic nylons that helped but eventually her legs discolored and became spotty in coloration.
7. Nausea is probably the most common problem though with chemo. Donít take any over the counter medicine for nausea before you check with the oncologist that is ok for your loved oneís specific type of cancer. But in general, sour candies or ginger ale usually help a queasy stomach. Your doctor can prescribe something stronger if needed.
8. Hair loss is also common. My Mom woke up for church, ran a comb through her hair and it had ďmeltedĒ overnight. Thatís the only way to describe it. It was as if the chemical make-up of her hair changed overnight. Needless to say, It was traumatic and the more she tried to investigate it, the faster the melted clumps would fall out. My aunt then came over and cut the clumps out then shaved it the rest of the way. She found a nice wig that matched her old hair. It didnít grow back until the very end when her doctor stopped treatment all together. I have since heard of people who preemptively shave their head to avoid the trauma of waking up to bald patches. They say it brings the patient a sense of control over the cancer. They decide when they lose their hair, the cancer does not.
9. The doctors have an affectionate term for another symptom, ďchemo brainĒ. This refers to the disorientation and slight brain hiccups that often come with chemo treatments. My Mom kept pretty alert, but I understand some people can get this quite bad. Short of forgetting that she already told you the same story twice now, or the occasional forgetting what something is called, my Mom lucked out with this side effect.
When her friends and family found out about my Momís relapse, she was bombarded with home remedies, medical trials, and lists of foods she should try. But the reality is, most of these ďremediesĒ were actually counterintuitive for her treatment. Her doctors all warned that eating onions, garlic, and herbals may help prevent Colon Cancer, but once you already have it can actually do you more harm than good. One such example was a special juice that an old family friend had sent my Mom. It was a wonderful sentiment and she was trying to offer help to my Mom, but the juice contained a chemical that would fight freeradicalsÖ.chemo is a freeradical. Her doctor assured her, had she taken the natural herbal juice, it would have sped her cancer up even more as the herbs in that juice would have prevented her chemo from doing its job.
Chemo maintained her cancer for the most part. It bought us three years of birthdays, weddings, babies being born but ultimately each test was showing gradual to moderate increased in cancer progress. The doctor would try to be optimistic about the results from each scan but my Mom knew she was not feeling better overall. She started to ask for a written copy of each scan. Despite the optimistic tone of the well-meaning doctor, the written reports gave us the real picture of what we were facing. If your loved one is facing this scenario, it is well within your rights to ask for it in writing. Go home and Google any word you do not understand. The doctor was focusing so much effort on keeping her spirits up that he often glanced over really important keystones in her illness. Youíll get a much more accurate picture of what you are really facing if you get it in writing.
Part 1 of 2
In the third and final year of the relapse, things started to change. You can’t bother the doctors over every little ache and pain but in hind sight, there were signs that the end was only months away:
1. The first sign was my Mom’s toenails started to literally fall off her body. We bandaged them up with Band-Aids to try and keep them from tearing but one by one, they started to fall off.
2. She developed a “tummy ache” that grew into a full-fledged pain in her side. But it grew much worst within the last two months of her life. We wrote it off at first, thinking it was chemo related or she ate something bad….but in reality her liver was failing.
3. She slept more. If she wanted to go to the store, she had to get showered, take a nap, get dressed, sit on the recliner for a while, and then go to the store. It was a gradual change but towards the end, even a shower became an event that needed planned for.
4. My Mom had struggled the entire time with being unsteady on her feet. But it really started to be more pronounced at this stage. Before, she had only needed to hold onto your arm when walking on an uneven surface such as gravel. But now, she needed someone with her to hold onto to get through doors, to step up or down, and to get in and out of chairs.
5. The chemo had caused my Mom to lose a lot of weight over the years. But for the past month and a half of her life, her belly slowly inflated back up. And it certainly was not due to an increase of food consumption. It was due to fluids. Her liver had failed and was filling her belly full of toxins.
Finally, the pain intensified until my Dad took her to the emergency room for testing. We suspected a blockage. What we found was that she was now weeks from the end. Here is what we experienced at this point:
1. My Mom started to withdraw into her own mind at times. She was ok with sleeping all day or most of the day. Even when sitting with the family, she didn’t always chime in like normal.
2. She did not want food or drink. When she did partake, it was only after being reminded to do so. She simply no longer had the urge to drink or eat. Nothing tasted right, nothing looked appetizing, even foods she would normally have loved.
3. Mom was lethargic. She needed help getting to the toilet and her recliner. This increased until one week before she passed when she was no longer strong enough to walk on her own. We had to use a wheel chair. We moved her bed into the living room because it was a much more open and easier to wheel her when we needed to.
4. She was shaky. Her hands, her head, and feet twitched. Her body was restless.
5. The unsteadiness in her feet was increasing dramatically. She was wobbly. Even getting on the toilet was a two helper job. One person for each arm to keep her from falling over.
6. Her belly started to swell even more dramatically. Pajama bottoms that she had worn the week before, no longer fit. The fluid levels were increasing in her abdomen. Eventually, they swelled her fingers and feet too.
Eventually, hospice informed us that we were days from her passing. Here are some notable symptoms that told us she was close:
1. By now, she had stopped eating and drinking, even when prompted. She would only swallow enough water to take down her pill. The last day and a half of her life, she stopped even doing that. We had to ask the hospice nurse for liquid medicine. By the last day, she refused to even open her mouth for us. We had to work the medicine into her gums and let it absorb into her bloodstream that way.
2. Mom was increasingly in her own world. When she was days from passing, she no longer responded to conversation although I like to think she was still aware of it. Her eyes were closed the entire day although she was not always asleep. Starting at two days before passing, she could no longer move any muscles. She was rigid and still. When we moved her, she moaned as if it were uncomfortable, even with Morphine in her system. We had a constant stream of family coming over and we talked to her as if she could hear us, as our hospice nurse said that she likely could hear but not respond.
3. She moaned in her sleep. At the start of the end, she talked in her sleep. Every once in a while you could make out a word or two, usually a family member’s name.
4. Her right leg “collapsed” overnight. The hospice nurse explained that the extreme dehydration is making her muscles shrink and it was extremely painful to touch that leg. We kept it propped up with a pillow and kept the Morphine coming.
5. She did have a few, and I mean few, moments where she was lucid. The night before she passed my sister and I told her that we would be fine if she had to go into the light. As we gave her permission to leave the pain behind, she opened her eyes at us for a moment. I believe in my heart she was trying to acknowledge what we were saying.
6. A few days before passing, her breathing was labored. It was a struggle for her to breathe even though she was on oxygen. Even while catatonic, her breathing required a great deal of effort on her behalf.
Family had already been trickling in. Judging by her breathing, we knew it wouldn’t be much longer until she was finally released from her battle. God was calling her home and it was pretty obvious to all. My Mom passed in the afternoon. Here are the events that took place the day of her passing:
1. Her breathing would pause and skip breaths, then resume.
2. Her head lay to the side. We would try to fix it straight but with all the energy left in her body she made her neck rigid and refused to move it.
3. She threw up a black liquid, several times. The hospice nurse informed us that it was common and her body’s last ditch effort to remove the toxins due to her failed liver.
4. Minutes before passing, her nose released a massive amount of mucus. We used the blue pads hospice had given us to contain the mess but I must admit even typing this is making me feel ill. It was a very dramatic sign that her body was losing all control.
5. I can’t say for certain that she lost control of her bowels after passing or before, but at the time we cleaned up the body, she had emptied her bowels.
She didn’t gasp and pop up from her bed like you see on TV. She laid there still, the toxins and mucus coming out of her without effort. Her breaths being irregular, then spotty, until it stopped all together. Minutes before death were chaotic for us, the onlookers, but the last minute was peaceful and quiet. She just stopped. She was surrounded by her loved ones and we were holding her hands and feet and shoulders. She knew we were there for her and wanted more for her than this world could give her.
Part 2 of 2
Daughter, welcome to the Forums and I am very sorry for your loss. Colon Cancer is a terrible disease ind is known to often recur after remission so, unfortunately, your Mom's story is not very different from many others. The side effects you describe (chemo Brain, hair loss, loose stools) are very common when treating this disease.
Your description of the dying process is detailed and accurate based on my observation of loved ones and my years on these boards. I am sorry you had to experience them with your Mom.
I hope that going through the effort of recording all of the detail you have was helpful to you and, in some way, may be helpful to others.
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 Rituxin, 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.
American daughter- Im very sorry for your loss Mom has been battling this almost 6years now- her choice of treatments are down to slim to nothing. I feel we are to the point of climbing that last hill. I have witnessed other deaths and it is a similar process in most. with my aunt we were told to watch all you had describe but also the mottling of the legs and at the end the ears will somewhat "pin back" closer to the head.
might be a morbid topic but its fact. I do trust that most doctors will be upfront if questioned thats why we have to be proactive in this or any other problems we have .
Their goal also is to give a terminal person as much hope as possible for I whole heartedly believe attitude and emotional strengths and faith play a huge part of longer life.
The other of course is the disease and the doctors.more than one opinion on things such as this is always a good idea.
and yes people mean well by suggestions but true alot of OTC and alts will in thse cases do more harm than good when mixed.
but they do mean well and I thank them for their suggestions and thats as far as most of them go.
Im glad you were able to get this all out and I too would like to welcome you.
The info you have given had good accuracy and is simple to understand . Your right most people have no clue especially if they had never lost someone close and if the never witnessed a death. Altho something one would tather not think about its good to try and be prepared.
Being prepared tho-doesnt make the end any more easier. Just helps you to know what you can should and shouldnt be doing.
thanks for the info. thanks for caring about others. May you know and realize that the support you have given to your mom gave her comfort in her passing.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.
Very moving, thank you for posting and welcome. Also agree with the progression of symptoms having watched over my Father as he died from cancer. I am leaving instructions on the music and services I want to hear in my last days....
If a bus doesn't get me first...
So sorry for your loss - it is so sad
Cheers - DulcimerGal
Rectal Cancer diagnosed Valentines Day 2008 - stage 3
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Chemotherapy 5 months (Xeloda) finished Christmas 2008
Local recurrence found May 2011
Permanent colostomy and salvage APR surgery June 3rd 2011
Stage 3C - 4 of 12 lymph nodes involved
Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
March 2012 - clean CAT Scan
August 2012 - Cancer moves to stage 4
CAT shows cancer cells implanted in pelvis/abdomen
September - PET shows lung lesion 1.4 x 1 cm
October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
February 2013 - tumors shrinking, continuing biweekly chemo
April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
May - October Blessed chemo break!
October 2013, scan shows more growth in pelvis and lungs
Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
April 2014 CAT scan shows tumors in liver
June 2014 More tumor growth, stop Irinotecan cocktail after two years
June 2014 Begin Regorafenib (Stivarga)
If you don't mind me asking, how old was your mom?
DX with Lung Carcinoid Tumor 12/04
Double Lobectomy 3/05
DX with Rectal Cancer 12/26/07 Merry Christmas!
Rectal Resection 3/08, permanent colostomy. Stage 2C
More chemo 5/08
Chemo fries bone marrow, 9 days in hospital isolation 7/08
Recurrence confirmed in pelvic region 12/09
Tumor radiated with Cyberknife treatment 3/10
Recurrence/metastasis in pelvis/abdomen 11/10
Xeloda/Avastin 12/10 to 01/13
Progression to lungs found 1/13
Erbitux 01/13 to 01/14
Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
Restarted Erbitux, lower dose 12/13
Kidney function dips again, chemo suspended again. 2/14
New chemo regimen of low-dose Irrenotecan started 4/14.
Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
Lung biopsy confirms that nodules are metastatic, enrolled in clinical trial at Huntsman. 11/14
Sounds like a lot of fun, doesn't it?
hidee..... first let me say that i'm sorry for your loss...i have colorectal cancer with mets to liver and bone. i've been in this ol world 68 years and still have life to go. all anyone can do is fight the best they can. i too have a little girl and she seems to be bearing it as well as possible. i will never give up as long as the good lord gives me a breath. i've fought this monster for over eight years and been knocked to my knees more times than i like to remember. my bags are packed and i know the way to the station and all you have to do to get a ticket is ask. it is free. the ol ga redneck
I am so sorry that you had to endure this with your mom...I am acutely aware of the pain you went through watching this because I am going through it now and my 17 and 25 year old daughters are standing by watching...
Did your moms doctors ever mention cytoreduction with HIPEC surgery? I had this surgery in august and it is aggressive, cutting edge, but many doctors will not recommend it because:
1) only a few doctors in the world have the experience to perform it correctly;
2) many insurance companies won't pay for this expensive surgery;
3) if not done correctly can lead to serious complications.
If your mom did not know about this surgery, that is a tragedy. I am making it my mission to let as many people know about the surgery as possible because it saves lives.
I do not know what my outcome will be...but I have had 3 clear scans since august. I reply on my faith in God because he is the master healer. Know that your mom is in a place of peace and beauty and suffers no more.
I am 54 years old and will fight to the end to be here for my kids and husband...
Peace to you.
Diagnosed Stage III colon cancer July 2010
Colon resection, then 8 rounds Folfox
Diagnosed Stage IV peritoneal carcinomatosis June 2011
Had Cytoreduction with HIPEC surgery August 2011 - Dr removed all visible tumor
Clear CT scan Dec. 2011!
Hi, my mom passed away a year ago from colon cancer as well. Everything you've mentioned is really similar to what my mom went through except that during her last 2 days with us, she made a weird sound everytime she breathes in. It's loud and upsetting. The hospice doctor told us this only occur with women, as they tend to be more emotionally attached to their children and husband. (my mom was only 52. My Sis and I being 26 and 22 respectively) it was a sign she was unable to let go. This sound went on and gradually got softer as her breaths got more shallow. Mottling and death rattle only started at her last hour. Damn, the heartache.
helpless 21 yr old girl with mom diagnosed with Stage IV colon cancer.
Sorry for your loss and prayers to you and your family. I am also sorry that idiot Doc told you that. I do not believe it is true since my dad had the same thing about 20 years ago with lung cancer. With all of the positive BS they tell you to keep your spirits up, this doctor should have been slapped for telling you some crap like that. I know it is hard but try to remember all the good times you had with mom. look for the signs she gives that let you know she is still around. Like you noticing you always seem to look at the time that is releveant to an important date. They are there.