Resources, costs and economics

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rp1954
Posts: 1670
Joined: Mon Jun 13, 2011 1:13 am

Resources, costs and economics

Postby rp1954 » Mon Mar 13, 2023 4:28 pm

I’ve lost everything.
But I’m alive.


After explaining the CRC first aid plan to my wife (hour #2), I took a walk outside to consider what things needed to be marshalled immediately and longer term, our massive change of plans. I also realized we could go broke without careful planning and that to maneuver, we needed to know lots of prices and hidden costs.
----
We used to have sporadic discussions of costs on the forum but they seem to have faded after the increased socialization of insurance and the expansion of limits in the US. The billed costs of cancer have always been considered (potentially) cripplingly high in the US across the generations but with huge increases. Today the battles are often much longer with nominal price tags that are highly variable with location and circumstances. One of the things I'm still in the dark about are the average monthly and total costs of a campaign at MSK (e.g. full costs for 1-2 yrs for HAI) or MDA.

It might be useful to discuss various numbers in terms of the resources mobilized, as well as prices in various locales. For us, we lowered our out of pocket costs but the invested time and efforts were high.

One shot across the bow, was the cancer blog from someone I knew in college that died in 2008 with moderate income but great insurance. They spent $4 million in 3 years on a recur, largely with CTCA, after sent home elsewhere, surprised on a followup visit (NED to almost dead, CEA ca 400 due to lax BrC monitoring guidelines). For US and wealthy private patients overseas, aggressive patients would blow through their insurance limits and savings in 1-2 years before becoming highly cost conscious. Part of the problem was lack of good cost information, or even early rough numbers at a distance.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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beach sunrise
Posts: 797
Joined: Thu Mar 05, 2020 7:14 pm

Re: Resources, costs and economics

Postby beach sunrise » Mon Mar 13, 2023 6:16 pm

I have found it is actually cheaper for me to go intergrative MD and ND than to stay with SOC. Insurance co-pays for SOC averaged around $1500.00 per month for chemo + onc appts, bloodwork (co-pay $200.00 per infusion plus $150.00 for onc appt, bloodwork weekly $35.00, basic chem14 and CBC). With radiation it was just a lil cheaper with co-pays and appts (radiation for 6wks was around $100.00 per week co-pay, rad appts $150.00).
Port access $38.00 co-pay (coded as venipuncture. Insurance charged $75.00, so they pad half)
When I started out on my own it was costly with consults but leveled out once I got drs and plan in place for home based treatment.
IVC= $150 per infusion of 75g (monthly average is $1200.00 per month)
ND= around $200 every 6wks for appt. Out of pocket
Intergrative= around $500.00 per month plus $160 for TM drug plan. Out of pocket
Supplements= around $500- $800.00 per month (out of pocket)
No travel involved unless for scans. Super plus!!!
Scans= ($150- $500.00 co-pay depending on type. Specialist appts co-pay $200.00) every 3 months
Co-pays for bloodwork at lab corp vary depending on what we are tesing big panels vs smaller panels
To add: when I twisted first oncs arm for xeloda is was rx'd at $125.00 per month for 2wks on, one wk off. Rx now is much cheaper because I get a larger quantity, 3 month supply for $255.00 co-pay.
Last edited by beach sunrise on Tue Mar 14, 2023 1:25 pm, edited 1 time in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

utahgal7
Posts: 118
Joined: Fri Sep 11, 2020 12:04 pm

Re: Resources, costs and economics

Postby utahgal7 » Tue Mar 14, 2023 12:01 pm

I have a high deductible healthcare plan. So until I meet the yearly deductible, the following is average out of pocket costs:

Oncology appt. average $350 a visit but includes basic CBC, metabolic panel and CEA
Chest Ct with contrast averages $1800.
Chest/Abdomen combined CT averages $5600
Capecitabine is covered in full before I reach deductible
When I took Folfox last time (2020), it was roughly $1500 per infusion
Basic bloodwork through LabCorp averages approx. $150-$200

Cancer is fucking EXPENSIVE!!! Excuse my language.

One of my coworkers had CRC. He survived for 7 years. After he died, his widow was left with over 1 million in medical bills. The hospital wanted her to pay 10% ($100K). Our company had a fundraiser for her. We were able to raise $30K for her. I don't know how she paid the remainder (i.e. payment plan, bankruptcy or if the hospital wrote the remainder off).

I am gonna die BROKE!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

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beach sunrise
Posts: 797
Joined: Thu Mar 05, 2020 7:14 pm

Re: Resources, costs and economics

Postby beach sunrise » Tue Mar 14, 2023 1:21 pm

Wow, Utahgal, that is expensive. I thought mine was bad but your bills got me beat. Sad thing is you can't count off fed taxes unless its way way up there. We met the state filing but not the fed.
My insurance was billed $10,xxx.xx per infusion of folfox6. Co-pay per infusion was $200.
The bills pile up for sure.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

Rock_Robster
Posts: 766
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Resources, costs and economics

Postby Rock_Robster » Wed Mar 15, 2023 1:07 am

Happy and useful to compare budgets and resources here, but as I’m based in Australia I suspect it won’t be particularly comparable for the majority of the audience here. Shout out if I’m wrong though.
41M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec - Feb-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 PVE, lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

rp1954
Posts: 1670
Joined: Mon Jun 13, 2011 1:13 am

Re: Resources, costs and economics

Postby rp1954 » Wed Mar 15, 2023 1:08 pm

Rock_Robster wrote:Happy and useful to compare budgets and resources here, but as I’m based in Australia I suspect it won’t be particularly comparable for the majority of the audience here.

Price and cost information has a lot of uses where component ("a scan", a cycle of chemo, a minor procedure, 3-5 days hospital inpatient ) and package cost (a major procedure or program over days, weeks or months eg Rolles laser surgery or HAI for 6-24 months) information is useful. A general knowledge of home or hospital based medicine, cost structures, and insurance schemes affects how we help each other, as well as for expats, retirees, multinational families, and medical tourism.

If you're well insured in a first class corporate or national network it may seem trivial or boring, but once you or someone you care about (needs to) leaves, changes, or is in/outside that network, these are potentially important. Especially if your situation could become cash based, e.g. real tourism as well as medical tourism, whether cost or technology based. Used to be, global medical coverage seemed trivial. Not so much now. Since my wife's diagnosis (2010), we want/need to track several major US and asian locations, the "kids" shift/span continents, close friends and extended family include oz, uk. Difficult to meaningfully insure, we certainly aren't going to visit Oz for months, blindly. US and Oz forum buddies have chased procedures or clinics to meet up in Europe.

Due to limited insurance, incomes, options, savings, technology, or a combination, many here might do better with cross border shopping. Getting adequate or advanced cancer treatment without adequate fore knowledge and planning is often ruinous.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Rock_Robster
Posts: 766
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Resources, costs and economics

Postby Rock_Robster » Wed Mar 15, 2023 7:54 pm

Yes very fair points rp - sorry I wasn’t saying the info isn’t useful to me (it definitely is), but more my info may not be useful to others. Still as you point out there could be value, so I’ll recap below.

Given Australia has a dual public (Medicare) and private system, I’ll indicate which items were which, and which were self funded. For the Aussies here, I have “Silver” level private health insurance (ie covers oncology) with no Extras (premium is around $120 a month). Costs have been roughly converted to USD.

*SOC:
Liver surgeries [public]: no cost
Rectal surgery [private]: $400 for surgeon, $400 for hospital excess, $400 for anaesthetist and $200 for assistant.
Chemo - IV [private]: no cost (covered by hospital excess)
Chemo - Xeloda [private]: $20 per cycle (subsidised by PBS).
Radiotherapy - VMAT [public]: free
Radiotherapy - SBRT [private]: around $200 per course, after Medicare rebate
Imaging [mixed]: usually no cost (after Medicare rebate). Some private imaging has gap of maybe $100-200. Worst is a 2nd liver MRI within 12 months, where I’m up for the full cost (about $600, mostly for contrast).
Blood tests [public]: no charge if ordered by a doc

Most of the above treatments are also available to international patients, however do not attract the Medicare rebate. So hospitals will effectively charge the full fee amount, which is a lot higher than you see here, but also a fraction of what I understand the US uninsured fee basis to be.

*Consults:
Oncologist and most other specialists around $40 after Medicare rebate. Oncology consults during chemo aren’t charged. First surgical consults around $200; follow-ups are either $40 or no charged. Most expensive was haematologist (around $300 after rebate).

*Non-SOC
Supplements [self]: around $200-300/mth, mainly on iHerb.
IVC [self]: around $140 for a 30-50mg cycle if I go to them (1 hour drive), or $250 if they come to me at home.
IR sauna [self]: included in my gym membership ($20/wk)
ND consult [mixed]: $400/hr ($100 per 15 mins). Get about 20% back from Medicare.
ND scripts [mixed]: those that are covered (eg celebrex] are around $20 a script. Those that aren’t (eg DCA) can be anything from $20 - $200 from compounding pharmacy.
Blood tests [mixed]: no charge if covered by Medicare, otherwise ranges $20 - $150 per test.
NK/DC therapy w vaccine [private]: this was in Japan and probably the most expensive thing I did; about $30k all up.
41M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec - Feb-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 PVE, lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

utahgal7
Posts: 118
Joined: Fri Sep 11, 2020 12:04 pm

Re: Resources, costs and economics

Postby utahgal7 » Thu Mar 16, 2023 8:57 am

Thank you, rp1954, for raising this important topic. I like your idea of cross border care especially for US patients where health care costs are staggering!!!

Although this is a bit off topic, I know someone with breast cancer who became too sick to work, she had to quit her job that provided her health insurance coverage. She was single and she decided to move in with family (who lived in one of the Medicaid expansion states) and she applied for Medicaid. She said the health care that she received through Medicaid was superior to the care she received from her private health care coverage through her job. Gone were the constant phone calls and appeals to insurance company to pay for certain treatments.

I am not saying this is the right course of action for everyone. However, if you are single and become too sick to work, what are you going to do!!!!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Claudine
Posts: 767
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Resources, costs and economics

Postby Claudine » Thu Mar 16, 2023 11:07 am

That's a very informative discussion; UtahGal7, good to know about Medicaid! We're fortunate to have very good insurance - our maximum out-of-pocket cost is $8000/year, it's not hard to reach (we're all on the same insurance, including our 2 young adult children who've been prone to break limbs, ha) so I always assume that we'll spend $8000/year and then we're fine. But, it does weigh on my husband (we're insured through his job), who feels that no matter what, he needs to keep working. Should it become impossible, I can certainly look into stepping up (I'm part time but could go full time and get the same insurance he currently has, which he could join).
We also have dual citizenship with France, that could be an option; but because of ease of access to cancer care, for now it's much better for us to stay in the US.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22


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