Major cancer centers/insurance

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margiej
Posts: 50
Joined: Sat Apr 14, 2018 8:46 am

Major cancer centers/insurance

Postby margiej » Fri Oct 26, 2018 2:36 pm

I am currently and thankfully NED but insurance enrollment is coming up. My husband and I retired early and because his employer (a Fortune 500 company that makes billions each year), decided to not offer any insurance options for retirees, we purchase insurance through healthcare.gov. We live in Western Wisconsin and there are only two insurance companies selling insurance in our county. Neither offers any out-of-network coverage. I can't go to any of the bigger name major cancer centers unless I pay for it 100 percent out of pocket. Not feasible for a major surgery if that should be necessary. Do others have this problem? I feel like my cancer treatment and, potentially, my life are dictated by insurance companies. I continue to pray for continued good health but this insurance situation hangs heavily over us.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Major cancer centers/insurance

Postby NHMike » Fri Oct 26, 2018 4:54 pm

I looked into this earlier this year and I think that there's only one provider in my state and I couldn't determine whether or not they covered MGH or Dana Farber. I looked into the MA (neighboring state) options and there might be coverage but I couldn't be sure. We have the option of 3 years of COBRA if I went out on long-term disability (something that I am considering though not too seriously). But I'm going to up my LTD to 66% from 50% this enrollment season.

My manager is generally sympathetic having had lifetime GI issues.

Some friends in New York tell me that the cost of healthcare.gov insurance can run around $3,000/month. Insurance in my area would be about $2,500/month and the coverage isn't anywhere near as good as our company insurance. So coverage is definitely an issue for people below retirement age.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Utwo
Posts: 218
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Major cancer centers/insurance

Postby Utwo » Fri Oct 26, 2018 7:42 pm

NHMike wrote:But I'm going to up my LTD to 66% from 50% this enrollment season.
NHMike, are you allowed to do this?
Have you studied the fine print?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

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bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Major cancer centers/insurance

Postby bitchslapped » Fri Oct 26, 2018 8:36 pm

margiej wrote:Do others have this problem? I feel like my cancer treatment and, potentially, my life are dictated by insurance companies.


Yes, others have this problem. Insurance companies have dictated health coverage for the last 40 years I'd say. Began with pre-authorizations required for certain procedures/surgeries in an effort to reduce unnecessary surgeries AND THEN medications that doctors can prescribe as well. Allergy clinic I went to had to hire on a person just to handle pre-auths for Rx's for patients.

Last year insurance companies continue to narrow the scope of docs & hospitals allowed by county through Obamacare. You should speak w/the two companies, or get an agent (no charge to you). If the medical care you need is not available within your coverage area, they may provide some benefit if you have to go out of network. Surprised they don't include @ least ONE major hospital in your area.
In my area, they even had PART of ONE additional county listed. I joked that you better be careful what side of the street you're having lunch in case something happens! :roll:

Good Luck
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

martd
Posts: 53
Joined: Tue Nov 21, 2017 3:48 pm

Re: Major cancer centers/insurance

Postby martd » Fri Oct 26, 2018 10:00 pm

Here in Arizona there is only one insurance provider available to purchase from, some company named Ambetter. Mayo Clinic is here in Arizona but does not accept Ambetter. And Mayo accepts almost all major Ins, even Medicaid. The medical insurance industry is almost non-existent for people that pay their own way.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Major cancer centers/insurance

Postby NHMike » Sat Oct 27, 2018 2:46 am

Utwo wrote:
NHMike wrote:But I'm going to up my LTD to 66% from 50% this enrollment season.
NHMike, are you allowed to do this?
Have you studied the fine print?


Yes, we’ve always had the option to select 50% or 66% LTD coverage. One of my coworkers out on LTD is at the 66% level.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

cbsmith
Posts: 72
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Major cancer centers/insurance

Postby cbsmith » Sat Oct 27, 2018 6:13 am

NHMike wrote:
Utwo wrote:
NHMike wrote:But I'm going to up my LTD to 66% from 50% this enrollment season.
NHMike, are you allowed to do this?
Have you studied the fine print?


Yes, we’ve always had the option to select 50% or 66% LTD coverage. One of my coworkers out on LTD is at the 66% level.


Mike, I think she was referring to are you able to change it when you have an existing condition that may require you to use LTD. At my work we can choose between 55% or 66% but if you increase to the higher level you cannot use the higher level fro 12 months. So if I increased it on Jan 1, 2019 and went out on LTD in August I would only get the 55% I had before. I would need to work until Jan 1,2020 to get the 66%. They do it to prevent people from keeping the cost down by picking the lower option and then increasing it when they are getting sick or think they may need to use it. And I believe that once you go to 66% on our plan you can’t go back down.

I always had the 66% from when I started working there as the cost wasn’t much more. And I’m glad I’ve had it because I have been on LTD for a month shy of 3 years so far.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Major cancer centers/insurance

Postby NHMike » Sat Oct 27, 2018 7:43 am

cbsmith wrote:
Mike, I think she was referring to are you able to change it when you have an existing condition that may require you to use LTD. At my work we can choose between 55% or 66% but if you increase to the higher level you cannot use the higher level fro 12 months. So if I increased it on Jan 1, 2019 and went out on LTD in August I would only get the 55% I had before. I would need to work until Jan 1,2020 to get the 66%. They do it to prevent people from keeping the cost down by picking the lower option and then increasing it when they are getting sick or think they may need to use it. And I believe that once you go to 66% on our plan you can’t go back down.

I always had the 66% from when I started working there as the cost wasn’t much more. And I’m glad I’ve had it because I have been on LTD for a month shy of 3 years so far.


I will have to check. Open enrollment starts Monday and I’ll select 66% anyways as the price difference is small. I probably should have changed it last year. I didn’t expect the post reversal period to be so difficult.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Utwo
Posts: 218
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Major cancer centers/insurance

Postby Utwo » Sat Oct 27, 2018 8:41 am

NHMike wrote:I will have to check. Open enrollment starts Monday and I’ll select 66% anyways as the price difference is small. I probably should have changed it last year. I didn’t expect the post reversal period to be so difficult.

NHMike
, please read the fine print!
Such increase may require doctor's note describing that you had no health changes in the last year.
They may decline your switch to 66% or accept your higher premiums but fall back to 50% in case you go on LTD.

My memory is not perfect.
I do not remember all the details, but back there I decided to stick with 50% and not to attempt a change to 66%.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

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susie0915
Posts: 861
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Major cancer centers/insurance

Postby susie0915 » Sat Oct 27, 2018 8:57 am

Insurance is the reason my husband will not be retiring early. Unless you are a public school teacher or work for one of the auto companies and are grandfathered, no insurance is provided to retirees unless you qualify for medicare. We could retire easily but the insurance is what holds us back. Hopefully, he can continue to work until he is 65 and we can qualify for medicare. It is very scary, especially when companies are always downsizing.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Major cancer centers/insurance

Postby NHMike » Sat Oct 27, 2018 9:33 am

susie0915 wrote:Insurance is the reason my husband will not be retiring early. Unless you are a public school teacher or work for one of the auto companies and are grandfathered, no insurance is provided to retirees unless you qualify for medicare. We could retire easily but the insurance is what holds us back. Hopefully, he can continue to work until he is 65 and we can qualify for medicare. It is very scary, especially when companies are always downsizing.


We're kind of in an area where companies are either raising pay or benefits.

I had a look at our open enrollment stuff materials on Thursday and was rather surprised to see that there are no price increases other than a small increase for legal insurance. Benefits are the same as well outside of a small change to deductibles and coinsurance which looks to be a wash. I don't believe that medical costs aren't rising so it sounds like the company is kicking in more for their part of coverage. I do not recall prices not going up, even if only a little, before.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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peanut_8
Posts: 2286
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Major cancer centers/insurance

Postby peanut_8 » Sat Oct 27, 2018 10:34 am

Just my opinion, but health insurance options for early retirees suck. DH retired a couple years ago, and went on COBRA which lasted for 18 months. 36 months is not guaranteed, butt may be an option in certain specific situations. Obamacare options didn't really work for us, since we spend time in more than one state.

The solution we settled on was to start a LLC. The LLC then become eligible to acquire insurance from providers like BCBS and United Health Care. I realize that this solution won't work for everyone, butt highlights the lengths people have to go to for adequate insurance.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

Re: Major cancer centers/insurance

Postby Jannine » Sat Oct 27, 2018 11:54 am

I read recently that some early retirees who have a good nest egg saved up are working part time at Starbucks because the company does offer health insurance and decent benefits for part time workers (I think it only requires 20 hours a week but definitely double check that). Might be something to consider for anyone who can work the part time hours (which I assume are mostly if not all on your feet).
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

margiej
Posts: 50
Joined: Sat Apr 14, 2018 8:46 am

Re: Major cancer centers/insurance

Postby margiej » Sat Oct 27, 2018 12:04 pm

The LLC option is very interesting. We will look into it. Did you create a business, Peanut? I think our business would show nothing but losses if we were paying for health insurance. And I have definitely heard that about Starbucks, Jannine. Might be a viable option, too. My husband and I are both 60... Hoping for some kind of early buy-in for Medicare at some point! Even though the health insurance is problematic, we are getting by.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Major cancer centers/insurance

Postby NHMike » Sat Oct 27, 2018 12:39 pm

We have people above retirement age working at my office (some in their 80s) part-time. I do not think that they need to work (my former manager and his wife have five pensions between them and a 401k and military health benefits) but he wants to work for the mental stimulation.

But yes, options for early retirement aren't very good.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal


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