Non-surgical..!?!?

Twinzma · August 2018

Well what a blow. My husband saw his oncologist today and she told him she will rescan him after 2 more sessions of chemo. She also just told him that she does not want to put him through surgery as his mets are everywhere on his liver. Well we knew it was devasting at diagnosis, he had 30 mets. But as treatment has progressed his tumor marker levels have dropped wonderfully, the majority of the mets dissappeared. I fell like we are somehow being kicked to the curb now. It's funny how her tone changed as we approch September. Our insurance only appproved treatment till then. Of course that may be denial lashing out, but what the heck! For months we have been led on with GREAT news now a sudden somber appointment, before scans even though CEA is falling tremendously. He has been on Chemo since the last week of December, so now what stop let the cancer grow back and watch him die? The next 4 weeks are going to be the most miserable waiting for the scans but I already know the answer I suppose. I wish he'd see another doctor but he refuses still. I swear if he doesn't get another oppinion now, he doesn't have to worry about cancer, I will bash him over the head with a bat! Well no I won't, but you all understand what I mean. Sorry I am running on, I just feel crushed right now!

SandiaBuddy · August 2018

Insurance

I hope that you have an opportunity to appeal the insurance decision to stop paying for treatment. Perhaps there is a patient advocate or attorney with healthcare insurance experience (I do not know your husband's age, but some legal assistance programs are funded under the Older Americans Act and do not charge for their services: link) who can help with this. The cost of chemo without insurance (and even with it) is ridiculous. Your frustration is understandable so please feel free to vent it with us.

Twinzma · August 2018

SandiaBuddy said:
Insurance
I hope that you have an opportunity to appeal the insurance decision to stop paying for treatment. Perhaps there is a patient advocate or attorney with healthcare insurance experience (I do not know your husband's age, but some legal assistance programs are funded under the Older Americans Act and do not charge for their services: link) who can help with this. The cost of chemo without insurance (and even with it) is ridiculous. Your frustration is understandable so please feel free to vent it with us.

Thank you. I will appeal and

Thank you. I will appeal and notify the state if we get denied. He's a working full time and since he's 55 there are little options. If he quits working, we still can't get assistance with the state because we have savings. We would have to exhaust all our savings & retirement first. Chemo costs are outragious! Our insurance does not cover the Erbitux so fortunaley our hospital approved us for charity for that one drug. I do have a friend that is a personal injury attorney so he may be able to help us fight. You know how people say they wish they had a rich uncle, I do but he is bequsting his estate to charity.....I may need to change my name! LOL.

Ruthmomto4 · August 2018

I am so sorry

I don’t understand how the insurance can deny him what he needs to live. I hope they change their minds, and I wish you could get him to seek a second opinion. I get the bat comment I have said many times I might kill him before the cancer does, it’s a joke he laughs. After almost 30 years of marriage I totally get it. I know what gut punch this was for you today I am sorry.

annie4145 · August 2018

I understand as well. My

I understand as well. My husband is as stubborn as a mule! Sometimes I can convince him, but sometimes I try to let him think it is his idea, rather than mine! Try to figure out why he doesn't want to go so you can address the underlying issue. Maybe he thinks it won't change anything, maybe he is concerned about traveling, maybe the expense... good luck in trying to get him to another doctor.

As far as insurance, what state are you in? I am not an expert in it, but what about that new national insurance program... I don't know what the status is regarding it but perhaps there is a way to switch... Is there a way to switch insurance? I think that they don't limit preexisting conditions like they used to? Does he have the ability to change insurance through his job (like once a year?), or can you look on the "exchange" for a difference insurance policy? Good luck... Also check out all clinicial trials that you think that he could qualify for. (Through www.clinicaltrials.gov)

Annabelle41415 · August 2018

Opinion

I'm not sure if you could go over his stern hesitation to go to another doctor and just make an appointment to get him there. I'm sorry about the insurance and I'm not sure why they won't pay for future treatments beyond September. Like Sandia said above, appeal to the insurance company to have them pay for future treatments because the treatment needs to happen. Wishing him the best on insurance and treatment.

Kim

beaumontdave · August 2018

Twinzma said:
Thank you. I will appeal and
Thank you. I will appeal and notify the state if we get denied. He's a working full time and since he's 55 there are little options. If he quits working, we still can't get assistance with the state because we have savings. We would have to exhaust all our savings & retirement first. Chemo costs are outragious! Our insurance does not cover the Erbitux so fortunaley our hospital approved us for charity for that one drug. I do have a friend that is a personal injury attorney so he may be able to help us fight. You know how people say they wish they had a rich uncle, I do but he is bequsting his estate to charity.....I may need to change my name! LOL.

I had the same squeeze,

I had the same squeeze, working, too much saved. I qualified for MediCal[Medicaid] with a $5000 a mon th co-pay. I ran out of savings in the middle of the 12 rounds of chemo, and was scared because I couldn't pay my mortgage and bills, and still make the co-pay. I lucked out learning of the Desert Cancer Foundation here in SoCal. I qualified, and they got me through chemo and the scans until I could qualify for the state's High-Risk Program. I nearly used up the lifetime limits of that program [$75,000 per year, $750,000 lifetime] when ObamaCare was started. I didn't notice what state your in, but check on everything, the ACA programs, any state programs, or any private foundations that may help out. Good luck....................Dave

Betsydoglover · August 2018

Non-Surgical????

Hi - a couple of things I can think of:

1) Consult a liver surgeon since surgeons do surgery and oncologist do chemo etc. What your onc says is not at all necessarily what a surgeon would say.

2) Sorry you have ins that gave you an "expiration" on your treatment - BUT - maybe that's just how they work and will extend based upon your onc's statements (your onc should be actively responding to ins co audits - if not at some point you might want a new one.) Although I've never heard of it in cancer care, there are definitely situations where an ins co approves a treatment for X months and then re-authorizes it after that time period. NOT an apologist for ins cos (hate them), but hopefully the Sept date is not a hard deadline, but just a time for them decide to move forward.

Wishing you the best,

Twinzma · August 2018

Thanks Everyone!

I am still just so baffled. He is responding to treatment, his liver and kidney functions are fine. No cardio issues. Why stop? Cea trending down had a scare, but just found out that they had switched labs! If insurance is the absolute reason fine, I have access to funds if I have to pay out of pocket. Is there some magic number? I mean do you have a certain number of FOlfri treatments before you are cut off? I just don't understand this at all. He goes back to see the oncologist after his next scan, and she will have presented his case to the tumor board so maybe this is just speculation on her part. But reguardless He is going for another opinion. I told him if he didn't he could pack his bags and leave. Horrible for me to have said but desperate times call for desperate measures and he finally got it through his thick head that there are more treatments availible and more aggresive & surgeons.

Annabelle41415 · August 2018

Twinzma said:
Thanks Everyone!
I am still just so baffled. He is responding to treatment, his liver and kidney functions are fine. No cardio issues. Why stop? Cea trending down had a scare, but just found out that they had switched labs! If insurance is the absolute reason fine, I have access to funds if I have to pay out of pocket. Is there some magic number? I mean do you have a certain number of FOlfri treatments before you are cut off? I just don't understand this at all. He goes back to see the oncologist after his next scan, and she will have presented his case to the tumor board so maybe this is just speculation on her part. But reguardless He is going for another opinion. I told him if he didn't he could pack his bags and leave. Horrible for me to have said but desperate times call for desperate measures and he finally got it through his thick head that there are more treatments availible and more aggresive & surgeons.

Good

Good that he listened to you about getting another opinion. Sometimes when someone is in treatment they are afraid to switch because they feel it might hamper the treatment they are already getting and will give them less of a chance for an good outcome if they switch. No one wants to be in that situation and switching midstream is like diving into a body of water with no life preserver. It's scary. No one says he has to switch doctors, but it's always a great idea to get a second opinion and wish that I'd have done that. Don't second guess this especially if he has reluctlanty agreed. In the end though, it's still his decision and that's what makes it hard when he doesn't want what you want. Glad that you could persuade him this time. Wishing him the best.

Kim

tanstaafl · August 2018

insurance

Without treatments at advanced cancer centers, like the ALPPS two stage surgery or HAI+surgery, your husband would typically be in a "chemo forever" category - chemo as long as it works or his body can stand it.

I assume that the insurance company's expiration is supposed to be a review of the chemo treatment, and the cancer for progression (that chemo dose failed) or hub's CBC for signs of blood/body limits, which can be bolstered some. Sometimes the insurance has important oversight function on dr errors or overzealous treatments or another option. But I would never trust the insurance company and have them explain exactly their most common continuity plan(s) for the month leading up to last covered treatment for (potential) plans A, B and C and going forward without delays or misses. The insurance company can overstep its role or induce delays and mistakes here too.

You are perfectly in your rights to demand explanations from the insurance company.

Kevin1224 · August 2018

Twinzma said:
Thanks Everyone!
I am still just so baffled. He is responding to treatment, his liver and kidney functions are fine. No cardio issues. Why stop? Cea trending down had a scare, but just found out that they had switched labs! If insurance is the absolute reason fine, I have access to funds if I have to pay out of pocket. Is there some magic number? I mean do you have a certain number of FOlfri treatments before you are cut off? I just don't understand this at all. He goes back to see the oncologist after his next scan, and she will have presented his case to the tumor board so maybe this is just speculation on her part. But reguardless He is going for another opinion. I told him if he didn't he could pack his bags and leave. Horrible for me to have said but desperate times call for desperate measures and he finally got it through his thick head that there are more treatments availible and more aggresive & surgeons.

Similar situation

My wife is in a similar situation with mets to the liver. She was diagnosed with stage 4 colon with mets to the liver, adrenal and bone a little over a year ago. She started chemo at Sloan Kettering and for almost 8 to 9 months her scans, CEA and Ca-19 were all trending in the right direction. This past May her last scan showed that her tumor grew in the liver, and they noticed another little tumor on her spine. The oncologist told us her cancer is in operatable and incurable, and they are giving her palatine care. If you seen her she is a 44 year old who has responded to chemo really well, and she is still a full time employee. We decided to get a second opinion with a liver specialist who is well respected in the medical field. He looked at my wife’s scan and said she is absolutely a candidate for surgery. His plan is to clear her left side of her liver, take a chunk of her tumor and send it for genetic testing to see what chemo works best on the tumor, and also to check if she has a MS gene to see if immunotherapy will work for her. She did the liver resecomy 3 weeks ago and waiting to see the results. Unfortunately she has not had chemo for close to a month and she is in some discomfort in her hip and knee area because of the bone cancer. The doctor ordered a CT this week to see if the left side tumor came back, if it did not then he want to do chemo for 3 to 6 months to shrink the right side before surgery. If it did come back he is doing surgery then chemo. He explained that when he does the surgery he will do the colon and the adrenal all together, then focus on the bone with radiation and chemo later on down the line. Like he explained to us her colon is not obstructing anything, and if she does happen to pass it will because of her liver because it is super aggressive. Hope you get the second opinion because what one doctor says does not mean another won’t do it. Good luck and I will be praying for you.

Kevin

Non-surgical..!?!?

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