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Husband Fighting Stage 4 Colon Cancer.....HARD YEAR

Anonymous user (not verified)

Hi,

On January 2018, my husband was diagnosed with Stage 4 colon cancer.  In December 2016, he had a colonscopy due to blood in stool.  Upto this point he had been a very healthy person.  We've been married 24 years and he has never had the flu or strep.  The surgeon who performed the colonscopy stated he removed polyps and he would send them for biopsies.  We never received a phone call asking us to call them because they had our test results.  We were in the midst of my father in-law just passing away and preparing his house to be sold.  We did receive phone calls regarding the bill because we thought it was a preventative procedure so we thought it was free.  After much going back in forth with the doctors office and insurance we found out once they remove polyps its no longer a free procedure so we paid the bil in full.  My husband was calling into the office about the bill but he assumed 'no news on the polyps was good news'.  Nobody ever left a message stating, "Please call us back about your test results". Fast forward to January 2018, he became very sick with stomach issues so he went back to the general practioner, who originally requested the colonscopy and nothing was in his chart about the polyps, the GP requested a CT scan and it was performed on a Monday.  That evening the radiologist called the GP stating my husband had cancer and the radiologist caught the fact that the polyps were cancerous the previous and didn't someone notify us.  The GP called at 8:00 am on Tuesday morning telling my husband the news over the phone and asking him to come into his office immediately.  The GP had never been notified of the polyp results but neither did his office keep track of the procedure.  

Basically, when the polyps were removed the cancer was in the early stages but grew to stage 4 advanced (incurable) colon cancer.  He had 1/3 of his colon removed and part of his small intestine because the cancer grew through the colon wall and attached itself to the small intestine.  They removed 64 lymph nodes around the colon and 24 were cancerous.  He has one spot on his liver but several lymph nodes infected including the aorta, stomach and chest region.  The oncologist and surgeon are concerned with everything but the most concerning is the aorta.  The liver spot seems to be in a highly favorable region (if you can see any of this favorable).  After 4 round of the tradional first line chemo treatments they performed another scan but the cancer had only stalled no shrinkage.  He has now done ten rounds and each round gets worse.  He's having a lot of neuropathy in his feet.  On two rounds he was very, very sick and I had to rush him upto the hospital.  He's on 5FU,oxaliplatin,leucovorin and irinotecan.  Last visit, we had to beg the doctor to reduce the irinotecan.  She has reduced the oxaliplatin once but she says he needs these to fight the tumors.  They check his neuropathy but they say it's fine.  He's tried five different nausea medicines.  

He is 53 and I'm 48.  We have three boys ages 18, 15, 13.  We are not financially capable of retiring so he has been trying to work through the cancer.  Some days are easier than others.  I worked in a school during Jan - June of 2018 and people were kind of enough to donate days so I could take off to go with him to treatments.  I was let go from the position due to loss in funding and loss of enrollment.  Our youngest son has a learning disability in math so we placed in a wonderful private Christian school that has a learning lab with a therapy designed by the National Institute of Learning Disabilites so I need to work to pay for his schooling.  I found another job starting soon but I will not be able to take off and go to my husband's appointments.  We don't have family members to help us it's pretty much just us.  As he is highly functional, I just feel bad no being there and I hate there will not be someone else to see and hear the doctor when she meets with him.  

Instead of performing a liver resection, the doctors are talking about doing ablation.  Has anybody ever had this done?   We were suppose to Monday for another PET scan.  The doctor ordered it on July 2 but we've never heard anything from scheduling so my husband called last week and they said they were waiting on insurance approval.  They've had over a month to get this scheduled.  We feel like we are getting the run around again.  We feel like we are just a number and not a human life.  Everything feels so hard.  

Thank for listening to me.  People who have not been through this do not understand.  

Woodytele
Posts: 163
Joined: Apr 2017

Ive never had an ablation, but lots of people on this board have, they will give you advice.  The good news is that he can get the ablation, lots of liver tumors are inoperable. 

Keep telling the oncologist about any neuropathy, or other side effects, they can tweak the mix so that it’s tolerable.

hang in there, it’s tough. 

abita's picture
abita
Posts: 681
Joined: Dec 2017

I am so sorry for y'all. It infuriates me that the doctor did not inform your husband when he had the colonoscopy. Why reduce the irintecan? I was on it after I had a reaction to the oxaliplatin on my 5th round. Where the lesion is on the liver is important. I had 3 large tumors, but they were all in the left lobe, so I was able to get them removed. 

Never lose hope. There are new treatments being discovered. 

Twinzma
Posts: 220
Joined: Jan 2018

How tragic that this could have been prevented. I am not a lawsuit happy person, but I would definatley speak to a lawyer about this. Someone besides your husband needs to be held accountable. My husband is still working, refuses to go on disability. I really wish he would. I hate the fact that he has worked his tail end off for so many years, saved and sacrificed for a retirement he probally won't live to see. I am pushing him to start traveling more while he still can but he doesn't want to touch the savings. I have been a stay at home mom for 13 years now not like I would be welcomed so readily back in the workforce so he doesn't want to spend the money that I will need to raise the boys. 

My husbands cancer is much more advanced than your husbands. So please, try to find comfort here there are many that have seen remission, No evidence of disease. It's acheivable don't give up! I am so very sorry you found yourself here. But there are so many loving caring people that on are in this journey with you here. Hugs! 

 

Trubrit's picture
Trubrit
Posts: 4960
Joined: Jan 2013

When you are ready, I would fight the insurance AND those who didn't report the findings. But first, get your head around this diagnosis. 

I am also stage IV, and even though it is always in my head, it can be dealt with. I won't use the word cured. I've had too many friends whose Cancer has returned, years after. BUT, you can LIVE with stage IV, and live well. And be NED - No evidence of disease -  I refuse to use the word 'incurable' it is a negative word, and I don't live negative in any way. 

I had an ablation on April 24th 2014 on one liver met 2.2 cm.  I have been NED ever since.  If you have specific questions you would like to ask, I am happy to answer, along with the others, here on the forum who have had ablations. 

Neuropathy. How do they check for it? As far as I know - and I have neuropathy -, the Doctor's can't tell how bad it is, only the patient can tell how bad it is. There is no test. If the patient says their hands are numb, their feet are numb, then they have neuropathy. If they just tingle, then you watch it, but if the hands start going purple, or feel numb, and the feet feel numb, then you have neuropathy.   My advice would be for your husband to judge how bad it is. I left mine too long, and here I am, five years out from chemo, with numb feet and fingertips, and it will never get better. 

I am so sorry for your husband's diagnosis. It is such a shock, and it is not just his diagnosis, but the family as well.  You all fight it, just in a different way than your husband. 

I wish you the best as you all move forward.  Come here and post. Come here and read. There is much to learn, and much that we can tell you that you won't get from a book or even from the Doctors. We live it every day, either as patients or caregivers. 

Tru

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I agree with what Tru said,  even though stage 4 is not curable,  you can live with it and many here are still doing so.  My oncologist hesitates to use the word "cure" but rather refers to it as a manageable, chronic condition that can be controlled, sometimes for years.  I was diagnosed with stage 4 rectal cancer in 2015 with mets to the liver.  After  several rounds of  chemo and radiation,  both the primary tumor and  the liver mets had shrunk, and I had a radiofrequency ablation on the liver tumor in August , 2016.   It entailed an overnight stay in the hospital but I was discharged the next day and what pain I had was well controlled with  Hydrocodone-acetaminophen 7.5-325 mg. If I remember correctly, I only needed to take 8 of the tablets.  I was told no strenuous activities and no lifting over 5  pounds for 2 weeks. I hope you husband's ablation is similarly uneventful and that everything goes well.

I agree that you should fight the insurance company over coverage-which in itself can be very stressful, but  it is necessary, and I would demand some answers on why  you were not notified about the  polyp findings. Dealing with the diagnosis and the treatments is  a hard road to travel, for both patients and caregivers, but as others  have mentioned, there are many here  who  have travelled that road and are still on it and are here to give you whatever support we can. I, too wish you and your family the best as you move forward. Let us know how everything is going.

Grace/lizard44

Anonymous user (not verified)

Thank you for your previous responses.  I feel just a little less lonely in this walk.

PET scan earlier in the week shows the cancer has shrunk in the lymph nodes and liver.  However, a couple additional items were added to the scan notes that have never been mentioned before:   at the left port-a-cath tip: there is atherosclerotic calcification noting mild caridomegaly and his right lung is now showing a nodule.  The doctor said these are items to watch.  

They stopped his oxaliplatin due to neuropathy.  He will do one more chemo treatment then decide how to move forward with the liver tumor.  The doctor believes ablation is the best route due to the smallness of the tumor but my husband is wondering if it would be better to cut out the tumor.  

Abby Claire

Trubrit's picture
Trubrit
Posts: 4960
Joined: Jan 2013

I had an ablation on my 2.2 cm liver tumour in April 2014. I have been NED (no evidence of disease) ever since. 

I was defintiely cautioned about the ablation; but my liver surgeon said that I had a very healthy liver, and that he was reluctant to cut a good portion of it off to get to the tumour. 

The surgery was very easy to recover from, also. 

Its a big decison. Good luck!

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6306
Joined: Feb 2009

Sorry for you having to join the group but you've come to a great board with very compassionate people that can give you much help and many answers.  I've not gone through the ablation that your husband will have but have been given the oxy which gave me permanent neuropathy.  Glad they stoppped the oxy as prolonged use or people that can't tolerate it suffer after.

Sounds like he has gotten lost in the system with no one informing him of the previous colonoscopy.  Someone should be accountable for "dropping the ball."  Ask the doctor why this has happened.

If something doesn't seem right, ask questions and be very aware that they won't discuss everything with you.  It's sad that you have to be your own best advocate but that is what has to happen.  Wishing him the best and call the insurance company and find out what the hold up is.  It shouldn't take a month.  You are a great wife and caregiver.

Kim

beaumontdave's picture
beaumontdave
Posts: 1014
Joined: Aug 2013

My fear would have a hard time keeping up with my anger at them getting the polyps and not diagnosing the cancer, loudly and clearly, at that time. I'm sorry their bungling has put your family in this position. Most of our stories just require you to click on our names, it's good to hear other experiences on this trip. My youngest was a 13yo when I was diagnosed, I remember the anxiety like it was yesterday. I'm a 3b who had cancer cut out of my liver twice, people and I'm here and NED, 11 years later, so keep a good thought that folks do survive, and live with late-stage diagnoses......................Dave

impactzone's picture
impactzone
Posts: 532
Joined: Aug 2006

Sorry to hear you story. Stage 4 here but that was 12 years ago, so there is hope. Be proactive always and I personally believe taking the most aggresive approach possible. You are the youngest then. I too taught throughout the treaments ( colon, liver 4 lung surgeries and chemo over the years) and it is hard to work. If surgery is a choice, I always took it. Ablation is great. I also suggest finding a good cancer center that you trust. I drove to Stanford ( 4 - 5 ) hours away instead of closer options just because I felt better there. All my best

Chip

Annabelle41415's picture
Annabelle41415
Posts: 6306
Joined: Feb 2009

Good to see you post.  Great to see that you are still doing great.  Always good to see your input.  Wishing you continued health.

Kim

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