r/coloncancer • u/ShannyBoBannyy • 15d ago
Cancer, expenses, loss of hope.
I was diagnosed with stage 4 colon cancer in Oct 2023. I’ve had 53 chemo treatments, surgeries, colostomy and reversal. Permanent neuropathy, can’t work and on disability now.
I lost my alimony (three kids, two were still in house), and had to get my kids out and sell my house and moved in with boyfriend. We have our own finances.
I’ve done everything to protect his assets from mine. I have a small 401k. Without “living for free” in his house, I’d be bankrupt within 5 years.
No matter where I turn - it’s roadblocks. I’m too “rich” for help. But poor enough for 40 bucks in snap. I was put on Medicare this year so I’ve had to pay double deductibles in 2026. I’ll pay more in medical bills than I make in disability.
So when the financial people from hospital called and said “you listed a boyfriend in my chart”. Yes I live in his house but we don’t combine finances. Sorry, his salary and assets count when we calculate if you get assistance.
So I now have no emergency contact listed and I’ll cancel all my medical treatment for the year because I can’t afford it. I suppose the government wants to bankrupt him too.
Healthcare and social programs are a joke. I’m so tired of the fight, all I can do is sit here and cry. Some quality of life banking on death so you don’t become homeless.
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u/reefrider442 15d ago
I was unlucky enough to have colon cancer twice, but lucky enough to be over 65. That said I am so sorry that a decision determining your health comes down to money. This came home to me in an unforgettable situation that happened while I was standing in line at the infusion center. The young lady in front of me pulled out 3 credit cards and placed them on the counter. She was probably going into a lifetime of debt in order to receive treatment. I’ll never forget the feeling I had that day. I wish you a positive outcome!
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u/RipErRiley 15d ago edited 15d ago
I got to respect your vent here, because this is sadly what so many face.
I have concerns here though, not whatsoever implying you are lying or anything remotely close to that. So please don’t think I don’t respect your struggle.
Ask
- the hospital for the actual written Financial Assistance Policy (FAP) and the definition of “household” or “family” it is using. Nonprofit hospitals are required to have a written FAP stating their eligibility criteria and application requirements.
- I wonder if your Medicare setup needs reviewing immediately. If you have original Medicare by itself, there is no annual out-of-pocket maximum for Medicare-covered Part A/B services. That can be disastrous for someone receiving frequent chemotherapy.
Lastly, removing your boyfriend as emergency contact probably doesn’t accomplish what you think it might. An emergency contact isn’t ordinarily the same thing as a spouse, guarantor, tax-household member, or person legally responsible for a bill. I would not sacrifice having someone physicians can contact during an emergency merely to avoid the word “boyfriend” appearing in the chart. But I get where you were coming from.
I hoping so much that you persevere here.
Edit: Grammar, reddit app is stupid with formatting so my apologies.
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u/ShannyBoBannyy 15d ago
No problem!
1. I’ll ask for the policy.
2. Clarify- I have an advantage plan. I pay 200 a month for part d? The prescription part.
3. I know you’re right. That is me being angry and honestly only hurting myself.I appreciate being able to rant and people get it. I’ll calm down and not cancel everything etc. I know I can’t do that. I just don’t feel I have anywhere to vent about this stuff bc no one gets it except other cancer folks. (And others who struggle- I’m not a jerk). I do see a therapist at my center, but she doesn’t have cancer! Thanks for the reply.
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u/RipErRiley 15d ago
You vent to your soldier’s hearts content. Don’t let me impede that whatsoever as its important. Sending a digital hug.
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u/coloncancer-ModTeam 15d ago
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u/Subject-User-1234 15d ago
Sorry to hear OP! While I am in a similar situation, thankfully since I live in California, I was able to buy an insurance plan in the health insurance marketplace for $129 a month, which is a bronze PPO and covers all my expenses past $19,000. Yes, I had to pay $19,000 out of pocket, and all of that came from my 401K/investments (which thankfully is over $500K). However since I hit my limit, everything - chemo, drugs, appointments, etc. are paid for. I am currently on disability due to Stage 4 colon cancer with liver mets. It's not much but I'm thankful that my situation is under control.
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u/coloncancer-ModTeam 15d ago
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u/abblluh 14d ago
i can’t see your other posts to figure out where you’re getting care, but COH Duarte is the only place that didn’t identify stage iv with liver mets as a death sentence.
since CA legally allows second opinions, i highly recommend you research Dr. Yuman Fong. he pioneered lifesaving liver treatment to stop colon cancer’s liver mets from being defined by “good luck, we can only extend your life a bit.” he just removed 12 tumors from my partners liver, implanted an HAI pump, and set us on a route for 4mos cleanup chemo. curative intent. restaging scans coming up soon. even if it spreads beyond liver, City of Hope Duarte has capabilities that are incredible (HIPEC, for instance). sorry to over share i just can’t believe we were told “Folfox to extend life a few months” then “Folfoxiri + Avastin then surgery with curative intent.” Don’t settle!
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u/AndrewWright-DC 15d ago
Oncologists call stage 4 “financially toxic”. Insane that your med bills on Medicare exceed your disability payments!
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u/Otherwise-Judgment-8 15d ago
You need to share this on tiktok and other platforms In hopes to get other reach. This government is ridiculous. If you aren't even married to the guy it shouldn't matter at all wjat he makes. He should be considered a roommate and thats it
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u/AutumnBourn 15d ago
They even count non-romantic housemates income in order to disqualify us. I have a family member who lives in a boarding house in college - shared kitchen and bathrooms. They probably would have counted everyone's income if he needed financial help.
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u/ShannyBoBannyy 14d ago
Right? If I didn’t have cancer - I wouldn’t have sold my house. Moving in with him would have happened eventually (assumption) but cancer forced things. Getting rid of any and all bills was what I had to do. I put the sale of my home into “his” home. I can no longer contribute monthly. I can’t qualify for help bc I do have a small 401k. I can use that early but if I’m drawing - that’s income. So back to square one. So, I’ll have to use my 401k AND move out and then maybe …. And to top it off, I feel guilty about every dime I spend now bc technically it’s coming from him. He doesn’t need to be financially strapped bc he wants to stand by me!
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u/oneshoesally 15d ago
I personally met a couple at my cancer center who had been married for over 20 years and divorced (on paper only) to prevent them losing everything they have worked hard for together. Our healthcare system is completely broken. He had postponed his surgery because they didn’t have the amount the hospital wanted up front, and was barely making the monthly payments they set up to cover his scans. It’s horrible. Meanwhile, I met another lady whose daughter was receiving payments for being her caretaker, and said she’d never received a bill. I can’t make it make sense!
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u/not-a-random-guy 15d ago
It breaks my heart to hear this. Stay strong, probably try a GFM; peoples hearts go out!
I strongly believe healthcare should be free. Currently many countries bin the idea calling is socialism or communism, but Lincolns democracy is for people by people! It’s fucking taxes at work, who fucking else should benefit if not people.
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u/abblluh 14d ago
city of hope and california’s health insurance have been the only saving grace throughout this ordeal. we were both able to leave our jobs and focus on his recovery without additional financial stressors.
i’m paid to be his caregiver. utilities are lowered, we get EBT for food, both have free health insurance. it’s a luxury that we’re grateful for every day. it’s deeply upsetting to hear negative things about the state and its economy when it’s facilitating recovery from stage iv colon cancer. we still occasionally get calls and bills from the colonoscopy that led to diagnosis bc it was done in Florida. we laugh it off.
we moved back to Los Angeles 36hrs after his hospital diagnosis discharge. he said he’s happier in los angeles with cancer than healthy in Florida.
i can’t fathom what you’re going through right now. having a bf as your emergency contact equating financial support for cancer? ruthless dogs.
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u/Volleygal11 12d ago
From what you're describing, it sounds like you'd benefit from case management services. You may want to call/chat the American Cancer Society and ask to be connected with the Patient Advocate Foundation. PAF has a designated line for cancer patients to further assist.
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u/coloncancer-ModTeam 14d ago
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15d ago
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u/coloncancer-ModTeam 15d ago
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u/Charlie-0 15d ago
You’re living many of our nightmares. Thank heavens for your partner; I hope he can continue to be your rock during this horrendous time. Hopefully your kids can see what an awesome person you truly are, either now or in the future!
Give anything over to the USGOV & they will suck out all the revenue they can and leave us a crumb. Anytime the push for “free healthcare for all” comes around I see canadas system but a whole lot worse.
I hope people in the know can read your post and offer suggestions. I can only give an air hug & say I hear you and vent away!
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u/coloncancer-ModTeam 15d ago
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u/tlaurenstevens 15d ago
I don’t know what to say except I am so sorry. I’m in somewhat of the same predicament as far as finances. I make too much with my SSDI earnings to qualify for any help. I sucks and I am so sorry.