Recurrence

Rosesforever
Rosesforever Member Posts: 44 Member

Hi all,

It's been awhile since I updated but I do read your posts and keep you all in my prayers. 
july 9 I had a sigmoidectomy for diverticulosis and had unexpected results. 2 Masses were found along with cancer in my abdomen. Big surprise because I had 3 ct scans and a pet scan that showed nothing. i currently have a colostomy because surgeon was told by my gyno oncologist not to hook me back up for fear of cancer spread. My gyno oncologist has given me a prognosis of 1 to 2 years. My chemo oncologist now has me on arimidex a hormone inhibitor. She says if we find the right inhibitor I could live many years. My only cancer marker is my CA 125 which has gone from 78 to 98 in less than a month. Chem doc says it's too soon to tell if med is working we need at least 3 months. What are your thoughts? I'm in Texas with my son and family and plan to get a second opinion from MD Anderson in the next two weeks. I have pretty much given up hope for a successful treatment. I understand there is no cure. Almost anything that could or can go wrong with my treatment since 2/3018 has gone wrong. It does my heart good to see your positive posts. Any input or suggestions are welcom. Best wishes to you all,,, stay safe and healthy. 

Comments

  • Molly110
    Molly110 Member Posts: 191 Member
    edited August 2020 #2
    Rosesforever, I am so sorry

    Rosesforever, I am so sorry to hear about the recurrence. It's such a good thing that you are with famiy and close to MD Anderson, since they are ranked number one in the country for cancer care.  You must be so scared to get a prognosis like that from your gyn, but surely your chemo oncologist is in a better position to know about what may be available to help you? I'm sure the more experienced and knowledgeable women here will have some sage advice, which I do not have, but I'm sending you positive thoughts across the miles.

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Rosesforever, so sorry to

    Rosesforever, so sorry to hear this! There are so many available treatments these days. I'm surprised that your gyno doc told you that. I hope your chemo doctor is right and they find the correct balance of something to get you stable. Many, many women here have gone through multiple recurrences and are still here with us. Please don't give up. I'm glad you are going to get a second opinion. Please come back and let us know what they tell you. We are here for you!

    Love and Hugs,

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,034 Member
    edited August 2020 #4
    Oh Roses, I am so sorry to

    Oh Roses, I am so sorry to hear this for you.  

    Being in TX and MD Anderson being so close what do you have to lose?  Go for it and see what they say.  As Cindi said, "please don't give up".  You are a statistic of one!

  • cmb
    cmb Member Posts: 919 Member
    Article

    Rosesforever,

    I know that you've struggled with severe side effects from your cancer treatment, so I'm very sorry to hear about this recurrence. I agree that a second opinion would be very helpful in your situation. I hope that you're able to have this done soon.

    And I wanted to remind you of an article that was posted on the board last year that may be especially timely for you now: "Metastatic Cancer Is a Chronic Condition"

    https://www.onclive.com/view/metastatic-cancer-is-a-chronic-condition

    Please keep us posted on your next steps.

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    cmb said:

    Article

    Rosesforever,

    I know that you've struggled with severe side effects from your cancer treatment, so I'm very sorry to hear about this recurrence. I agree that a second opinion would be very helpful in your situation. I hope that you're able to have this done soon.

    And I wanted to remind you of an article that was posted on the board last year that may be especially timely for you now: "Metastatic Cancer Is a Chronic Condition"

    https://www.onclive.com/view/metastatic-cancer-is-a-chronic-condition

    Please keep us posted on your next steps.

    sad long story. I was on the

    sad long story. I was on the phone for 5 hours yesterday. MD Anderson refuses to see me because I have Kaiser and Medicare advantage it doesn't matter if I agree to pay out of pocket. I am frustrated and furious. so,,,, I'm going to exhausted the Kaiser system for a second opinion on every treatment I've had since my orginal Dx. I have 1 doc who is encouraging me to fight it. Have any of you had experience similar to mine? thank you in advance for your help. 

  • jan9wils
    jan9wils Member Posts: 180 Member
    edited September 2020 #7
    Hi Rosesforever. Firstly, let

    Hi Rosesforever. Firstly, let me say I am sorry that you have a recurrence. I have recurred myself so many times and I keep bouncing back, although it does take longer each time. My original prognosis was pretty good but that went out the window fairly quickly. That said, I'm living proof that metastati cancer is a chronic condition! I live in Texas. I had a second opinion at MD Anderson in 2018 at the urging of my gyn/onc. I am not familiar with your insurance situation and I am wondering if during open enrollment there might be a plan that MD Anderson would take. I had thought they pretty much accepted all insurance. I am sad that with everything you have going on you have to fight to find a second opinion. It really should not be this way.

    Jan

  • Forherself
    Forherself Member Posts: 722 Member

    sad long story. I was on the

    sad long story. I was on the phone for 5 hours yesterday. MD Anderson refuses to see me because I have Kaiser and Medicare advantage it doesn't matter if I agree to pay out of pocket. I am frustrated and furious. so,,,, I'm going to exhausted the Kaiser system for a second opinion on every treatment I've had since my orginal Dx. I have 1 doc who is encouraging me to fight it. Have any of you had experience similar to mine? thank you in advance for your help. 

    Roses

    I also am sorry to hear that you are having another recurrence.   Darn disease.  We are not allowed to use stronger language.  

    I am no expert on Medicare but my cousin taught me this.  Medicare Advantage plans are all preferred provider orangizations.   If you have Medicare you can go to an insurance broker and ask to switch to a medicare supplemental plan.  Any doctor that accepts Medicare will accept you with this.  And that means about 100% of specialists.  I don't know why you have Kaiser and it may prevent you from switching if it is through aretirement plan of some kind.  We had to switch to AARP supplemental and then two months later were free to choose a different company.  I chose Blue Shield.   This may not help but is additional information that I never knew until I was turned down by a Gynecologist in my town when I  was first being assessed for post menopausal bleeding.  I was told it was because of my Medicare Advantage plan.  And I switched.

     

  • Molly110
    Molly110 Member Posts: 191 Member
    Medicare

    Roses, I am not on Medicare, but I know a little about it from my previous work, and it sounds like the problem you're encountering is that your Medicare through Kaiser is Medicare Advantage, which is managed care. By definition, that means that the company through which you have Medicare Advantage (Medicare managed care) can limit your options for where you can seek care. The problem likely is not with MD Anderson but with Kaiser (your managed care company), which apparently will not pay for you to go outside their network because they don't contract with MD Anderson. 

    "Traditional" Medicare is not managed care, and people in traditional Medicare are allowed to get care from any provider or institution that accepts Medicare, which MD Anderson does.  Medicare open enrollment period starts in mid-October and ends in early December, and you can switch to traditional Medicare during that period, although your new plan wouldn't start until January 1, which may be longer than you want to wait. If you do switch to traditional Medicare, you will need to get a supplemental (MediGap) plan and will need to take care that you choose a MediGap plan that contracts with MD Anderson. If you get your insurance through a retirement plan that requires that you use Medicare Advantage (which I think some do), then you may not have the ability to switch. Also, in many, perhaps most, states you might not have the right to buy a Medigap plan without going through medical underwriting if you switch to traditional Medicare during open enrollment, and without a Medigap plan, cancer care would be out of reach for most of us.

    You may well know all this, so excuse me if you do. I’m not an expert by any means. You likely also have seen this Medicare information on the MD Anderson website: 

    "Medicare Part A, or Hospital Insurance, covers hospital stays, hospice care, skilled nursing facilities, and some home health care.

    Medicare Part B, or Medical Insurance, covers doctor visits, preventive care and screening, and medical supplies.

    Medicare Parts A and B  are both accepted at MD Anderson.  

    Medicare Part C, also known as the Medicare Advantage Plan, replaces traditional Medicare. Kelsey-Care Medicare Advantage is the only Medicare Advantage plan with which MD Anderson is contracted.  However, we have a working relationship with some Medicare Advantage HMO and PPO plans.  Please contact your plan to determine if they will work with MD Anderson.

    Medicare Supplemental (MediGap) policies allow enrollees to see any provider that accepts Medicare. Some of these supplemental plans are accepted at MD Anderson.  However, we do not accept any supplemental plans that require enrollees to use a provider in a restricted network that does not include MD Anderson or its physicians."

    I hope Kaiser relents. I have heard good things about Kaiser cancer care from women on this board, but I know that varies from place to place. I am so sorry that you have to deal with how to get stuff paid for when all your energy should be able to go to getting stronger and managing this disease. It makes me furious.

     

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    jan9wils said:

    Hi Rosesforever. Firstly, let

    Hi Rosesforever. Firstly, let me say I am sorry that you have a recurrence. I have recurred myself so many times and I keep bouncing back, although it does take longer each time. My original prognosis was pretty good but that went out the window fairly quickly. That said, I'm living proof that metastati cancer is a chronic condition! I live in Texas. I had a second opinion at MD Anderson in 2018 at the urging of my gyn/onc. I am not familiar with your insurance situation and I am wondering if during open enrollment there might be a plan that MD Anderson would take. I had thought they pretty much accepted all insurance. I am sad that with everything you have going on you have to fight to find a second opinion. It really should not be this way.

    Jan

    I tried to send you a thank

    I tried to send you a thank you note yesterday & for some reason it didn't send.  Thank you for the encouragement and the positive feedback about recurrence. The recurrence itself wouldn't be so bad if my oncologist had not given me 1to2 year prognosis. wishing you continued success against the cancer beast. Thx again. 

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    edited September 2020 #11
    Molly110 said:

    Medicare

    Roses, I am not on Medicare, but I know a little about it from my previous work, and it sounds like the problem you're encountering is that your Medicare through Kaiser is Medicare Advantage, which is managed care. By definition, that means that the company through which you have Medicare Advantage (Medicare managed care) can limit your options for where you can seek care. The problem likely is not with MD Anderson but with Kaiser (your managed care company), which apparently will not pay for you to go outside their network because they don't contract with MD Anderson. 

    "Traditional" Medicare is not managed care, and people in traditional Medicare are allowed to get care from any provider or institution that accepts Medicare, which MD Anderson does.  Medicare open enrollment period starts in mid-October and ends in early December, and you can switch to traditional Medicare during that period, although your new plan wouldn't start until January 1, which may be longer than you want to wait. If you do switch to traditional Medicare, you will need to get a supplemental (MediGap) plan and will need to take care that you choose a MediGap plan that contracts with MD Anderson. If you get your insurance through a retirement plan that requires that you use Medicare Advantage (which I think some do), then you may not have the ability to switch. Also, in many, perhaps most, states you might not have the right to buy a Medigap plan without going through medical underwriting if you switch to traditional Medicare during open enrollment, and without a Medigap plan, cancer care would be out of reach for most of us.

    You may well know all this, so excuse me if you do. I’m not an expert by any means. You likely also have seen this Medicare information on the MD Anderson website: 

    "Medicare Part A, or Hospital Insurance, covers hospital stays, hospice care, skilled nursing facilities, and some home health care.

    Medicare Part B, or Medical Insurance, covers doctor visits, preventive care and screening, and medical supplies.

    Medicare Parts A and B  are both accepted at MD Anderson.  

    Medicare Part C, also known as the Medicare Advantage Plan, replaces traditional Medicare. Kelsey-Care Medicare Advantage is the only Medicare Advantage plan with which MD Anderson is contracted.  However, we have a working relationship with some Medicare Advantage HMO and PPO plans.  Please contact your plan to determine if they will work with MD Anderson.

    Medicare Supplemental (MediGap) policies allow enrollees to see any provider that accepts Medicare. Some of these supplemental plans are accepted at MD Anderson.  However, we do not accept any supplemental plans that require enrollees to use a provider in a restricted network that does not include MD Anderson or its physicians."

    I hope Kaiser relents. I have heard good things about Kaiser cancer care from women on this board, but I know that varies from place to place. I am so sorry that you have to deal with how to get stuff paid for when all your energy should be able to go to getting stronger and managing this disease. It makes me furious.

     

    Thank you. This is very

    Thank you. This is very helpful. My concern is if I opt out of Medicare advanrage what will be the long term cost. Kaiser has agreed to present my case to a Gyno oncology board next week. i have been overall pleased with the treatment Kaiser has provided but I have no bases for comparison as I've never had a second opinion. I will check into open enrollment mid October. Thank you again. All the best to you. 

  • MoeKay
    MoeKay Member Posts: 403 Member
    edited September 2020 #12
    Information from MD Anderson's Website on Private Pay

    Hi Rosesforever,

    I don't know who you spoke to yesterday at MD Anderson about paying out of pocket for a second opinion consultation, but here's what their website says on this issue:

    If your insurance plan is not accepted at MD Anderson, or if you do not have insurance and are paying for your own care, you will be asked to pay a deposit for your first appointment at MD Anderson.

    The deposit is only an estimate, but the actual charges may be higher or lower based on the actual services received.  Estimates for continued treatment at MD Anderson are based on the customized treatment plan recommended by your MD Anderson physicians.

    Self-pay patients may be eligible for a discount when their account status is in good standing.

    We have dedicated financial specialists that can provide a cost estimate and accept your deposit payment by phone.  We accept Visa, Master Card, American Express and Discover. Call 713-745-9998, or toll-free at 1-844-331-9998.  

    Payments made by cash, personal pre-printed checks, cashier checks and wire transfers can be arranged with a financial specialist.  Financial specialists are available 8 a.m. – 5 p.m. Monday-Friday.

    Here's the link to the Financial Support section of MDA's website from which I took the above:  https://www.mdanderson.org/patients-family/becoming-our-patient/planning-for-care/insurance-billing-financial-support.html

    I would suggest if the answer you get from Kaiser next week is not favorable, that you contact a financial specialist at MDA to work though the details of arranging for a second opinion.  It doesn't make sense that they wouldn't be willing to accept money for a second opinion consultation. 

    Best of luck.

     

  • Rosesforever
    Rosesforever Member Posts: 44 Member
    MoeKay said:

    Information from MD Anderson's Website on Private Pay

    Hi Rosesforever,

    I don't know who you spoke to yesterday at MD Anderson about paying out of pocket for a second opinion consultation, but here's what their website says on this issue:

    If your insurance plan is not accepted at MD Anderson, or if you do not have insurance and are paying for your own care, you will be asked to pay a deposit for your first appointment at MD Anderson.

    The deposit is only an estimate, but the actual charges may be higher or lower based on the actual services received.  Estimates for continued treatment at MD Anderson are based on the customized treatment plan recommended by your MD Anderson physicians.

    Self-pay patients may be eligible for a discount when their account status is in good standing.

    We have dedicated financial specialists that can provide a cost estimate and accept your deposit payment by phone.  We accept Visa, Master Card, American Express and Discover. Call 713-745-9998, or toll-free at 1-844-331-9998.  

    Payments made by cash, personal pre-printed checks, cashier checks and wire transfers can be arranged with a financial specialist.  Financial specialists are available 8 a.m. – 5 p.m. Monday-Friday.

    Here's the link to the Financial Support section of MDA's website from which I took the above:  https://www.mdanderson.org/patients-family/becoming-our-patient/planning-for-care/insurance-billing-financial-support.html

    I would suggest if the answer you get from Kaiser next week is not favorable, that you contact a financial specialist at MDA to work though the details of arranging for a second opinion.  It doesn't make sense that they wouldn't be willing to accept money for a second opinion consultation. 

    Best of luck.

     

    None of it made sense to me

    None of it made sense to me either but MDA was adamant about NOT seeing me due to Kaiser & Medicare Advantage. Thanx for the link. I argued what they had posted about out of pocket payment with both Kaiser & MDA. I'm willing to take some blame in that I didn't do my homework before signing up but,,, I still don't understand how I can be denied freedom of medical treatment "anywhere". In fairness Kaiser will pay for any urgent care anywhere which maybe the litmus test in that I think I have another UTI therefore I will test Kaiser's definition of "urgent care". Thank you for your response. I'll keep you all posted & wish you all improving health!!

  • MoeKay
    MoeKay Member Posts: 403 Member
    edited September 2020 #14
    Something sounds very wrong to me

    I've been dealing with all sorts of billing and insurance issues since my diagnosis in 1999, and I've never heard of a situation where someone couldn't get a second opinion at a facility of their choice if they were able and willing to pay for it.  In fact, when I was diagnosed, I was in an HMO, and I went out of network for opinions and treatment.  I did have secondary insurance, however.  At that time, my secondary insurance refused to pay for my hospitalization for a year and a half, and I ended up reaching out to my Congressman and he was able to get the matter resolved in a few short weeks. 

    If I were in your situation, I would do two things.  I would write to the Chief Financial Officer at MD Anderson, with a copy to the CEO, and explain your situation.  I would also contact your Congressional representative and request his or her assistance.

    Good luck and good health, Rosesforever!

  • Maxster
    Maxster Member Posts: 102 Member

    Roses

    I also am sorry to hear that you are having another recurrence.   Darn disease.  We are not allowed to use stronger language.  

    I am no expert on Medicare but my cousin taught me this.  Medicare Advantage plans are all preferred provider orangizations.   If you have Medicare you can go to an insurance broker and ask to switch to a medicare supplemental plan.  Any doctor that accepts Medicare will accept you with this.  And that means about 100% of specialists.  I don't know why you have Kaiser and it may prevent you from switching if it is through aretirement plan of some kind.  We had to switch to AARP supplemental and then two months later were free to choose a different company.  I chose Blue Shield.   This may not help but is additional information that I never knew until I was turned down by a Gynecologist in my town when I  was first being assessed for post menopausal bleeding.  I was told it was because of my Medicare Advantage plan.  And I switched.

     

    Medicare Advantage that is not an HMO or PPO

    I just wanted to say I have a Medicare Advantage plan that lets me go out of the preferred provider list with no penalty.  I love it for that.  So I can go anywhere Medicare is accepted.  I just wanted to let you know there are plans like that.

  • dgrdalton
    dgrdalton Member Posts: 161
    So sorry, Rosesforever, about

    So sorry, Rosesforever, about your recurrence, prognosis and insurance problems. I know how hard a recurrence diagnosis is to cope with, without adding the insurance problems. Sending hugs and prayers!

     

  • Molly110
    Molly110 Member Posts: 191 Member

    Thank you. This is very

    Thank you. This is very helpful. My concern is if I opt out of Medicare advanrage what will be the long term cost. Kaiser has agreed to present my case to a Gyno oncology board next week. i have been overall pleased with the treatment Kaiser has provided but I have no bases for comparison as I've never had a second opinion. I will check into open enrollment mid October. Thank you again. All the best to you. 

    Roses, I think you are wise

    Roses, I think you are wise to be careful about switching from Medicare Advantage at this point since, depending on your state, you might have to go through medical underwriting to get a Medigap plan (without which traditional Medicare would require you to pay for a significant percentage of your care). I hope you can make Kaiser work for you. I want to say again, though, that I am not an expert by any means.  Here is a link to wonderful experts -- this is a national nonprofit Medicare rights organization. https://www.medicarerights.org/  They have really excellent free information and will explain everything to you. 

    It makes me furious that you should have to worry about this at such a stressful time.