6 years out - just denied MRI

conniehar

I was dx'd in 2007 with a 10 cm ILC tumor.  It was not detected by mammo or u/s - only by MRI.  Had a mastectomy on the left breast but kept the right.  Onc has ordered yearly mammos and yearly MRI's (alternating every six months).  This year, Cigna denied the MRI stating that the mammo was crystal clear.   Ummm.... I had a 10 cm (!!) tumor that was not seen at all on the mammo or u/s.  I cried to the nurse and she contacted Cigna again - felt that she reached a really sympathetic person but it came back again denied. 

Looking around, it looks like this is routine when someone reaches 5 years.   I meet with my onc next week to see if I have any other options.  Anyone else have this occur?   I am seriously considering a proph mastectomy on the right now.

mary625

They told me (they being the breast surgeon's NP) that I would never qualify for an MRI on the other breast, so I had it off prophylactically. I have CIGNA too. She seemed to think this was standard no matter what the insurance company from year one. With an undetected by mammogram ILC of 7 cm, I just had it removed. I did not have time or strength to research her statement since I was in chemo. Also, I was having problems with that breast right up to 2 weeks before surgery when they were finally able to biopsy two areas that were lighting up on MRI and prove them to be noncancerous. After all we go through, shouldn't there be some standard information that we can rely upon such as whether or not we can get detection that's reasonably expected to work? I feel for you.

jessica749

That's terrible. I can totally understand why you'd want to get a prophylactic mx under these circumstances. I don't know your insurance, but there is always a formal claims process required by law. If they've sent you a denial, they must state the grounds upon which its denied. Also the formal claims process usually requires written response if you are appealing the denial- I'm not sure a phone call from the NP counts as formal appeal of the denial-- In other words, if you are still w/I 30 days, you can send in writing apeal request and state the add'l grounds. Get a second bite at the apple, even though nurse called. It sounds like ths is being seen by the insur co as some sort of follow up treatment to your diagnosis that ends when you are "better"....can you have your oncologist write a letter that this is medically necessary screening given your % risk level/nature of ILC/density /what have you?

I just get so angry at insur cos - they get my battle juices going. Since you'd speak to your onc about mastectomy maybe it's worth asking her/him if trees anything they can write for an appeal? At the same time if the thought of all this exhausts you, believe me I understand. It was -in part- long term insurance coverage concerns re MRIs that led to my bmx (and choice of saline implants). So I think your thinking is absolutely reasonable.

LRM216

I'm in the same boat with BCBS.  I'm triple negative and will be 5 years since diagnose this coming February.  I see the BS every 6 months for mammo and US.  My lump was found by mammo but never felt as it was 5 cms deep under the nipple so it was never felt.  For the first three years, BCBS allowed me to have a breast MRI every year then suddenly stopped me from having it.  My BS has fought them tooth and nail to no avail.  The reasons are absolutely ridiculous for their turning me down:  1.  I have had no reoccurrence or progression; 2.  No one else in my immediate family has breast cancer (even though I freaking have it!); 3.  I have no BRCA status to confirm that I need one (they refused to do my BRCA testing as I was 62 at time of diagnose with no family history); and 4.  it would be "merely investigational."  I cannot believe these idiots.  It is terribly frustrating and very stressful to me to know that my BS does indeed think it should be done every year, but two morons that call themselves doctors (and they are not even oncologists) can make this call on my life.  The saddest part of all this is that with the oncoming Obamacare - what else will they be cutting out on us?

HLB

They will think of any crazy reason to deny payment! My cancer was also not found on mammogram and that's why I had a BMX. I worry about Ocare too.

AlyonA

Wow. I am just so…mad for all of you! How can they not give you targeted test? Oh. Do you have friends outside of the USA? Or could you take a vacation to Europe?

MRI is around 80 euro – to 250euro in Europe, depending on the country, and in countries like Croatia, Greece, etc (with really pretty see sides!) you don’t even need to have any kind of added cost for insurance, since tests are done in private clinics (if you are having difficulties, or your physician stated you had past difficulties, you can apply for free tests, but the waiting lists are about a month long). The plane ticket (that is bough in advance and has fixed dates) goes along the lines of 700- 800$, and trough agencies that book vacations it can all come off even better. In the end – your upper cost for the whole shabang is 900$ compared to the 1200$ in the USA (just for a freaking scan!), and you are also drinking a daiquiri and enjoying the sunset while doing it.

I know, I know, many of you are just unable to give up that kind of money (even if a few hundred are shaved off), but then again – if you were planning on a trip – here is something you can brainstorm about.

I wish you all well!

conniehar

Thanks for all the responses.  I read through the 10 page denial letter today (wonder how much that cost) and there is a written appeal process. There was a big long list of why it was denied (basically not medically necessary, I don't have dense breasts, I don't have BRCA gene, etc)   There are so many steps to the appeal process and so many requirements it is exhausting!   I have 4 months to appeal.  I plan to talk to onc on Monday and I may then go back to breast surgeon to see what he has to say (I love my surgeon).   I just don't understand how anyone could actually look at my history (10 cm tumor not seen at all on mammo or u/s) and say an MRI is not necessary!

I will let you know what onc says next week!

vlnrph

Curious to know if your situation has resolved since I am facing a similar dilemma.

Momine

I am with Alyon, come down and visit me and I will fix you up with whatever scans you want, all at pretty low cost.

sgreenarch

Hi. Mine was caught in a routine mammogram but then MRI found a second tumor not seen on mammo. This past yr my ins co denied an MRI but they backed down very quickly when my surgeon wrote them a letter saying that MRI surveillance is the standard of care for ILC. Truthfully, this is now in Israel, where we now live and where they tend to take dr letters pretty seriously. Had I needed to I would have gathered up the money somehow to have one privately (about 2000 shekels/$600) and continued to fight for reimbursement. I couldn't stand that I had one minute of stress about this and was pleased that it was over quickly.

My husband is a dr and I used to help out in his office when we lived in the US, fighting with insurance companies. I couldn't believe how mean spirited they could be. How powerful. I hope obamacare helps reduce their arrogance and empowers the insureds. I wouldn't suggest removing a breast for this reason alone. I agree w the other women who live abroad who suggest doing it abroad and making a vacation out of it. Happy to help you if you want to visit here:)

also, have you checked out how much it costs to pay out of pocket in the US? Can't let these ins cos win on this one. How stressful!!!!

vlnrph

Not sure about our original poster Connie but I'm "just up the road" from her in the Midwest USA where my earlier MRIs were billed at $3300 each (copay was a couple hundred dollars).

Like our Israeli friend above, I also had a 2nd lesion not visible on mammogram - it was up in the armpit area, a different quadrant from the ILC which meant mastectomy. We have submitted an appeal to the insurance and they are required to respond within a month, so we'll see!

Medical travel may well become very popular in the future...

sgreenarch

The other suggestion I'd make, and not sure if it would work, would be to call around to imaging (MRI) centers and explain your situation. Ask how much an MRI would be if paid for privately, given your situation. Not sure if it's still like this, but sometimes bills with original higher fees are submitted to ins cos with the hope of actually recouping less, even much less. Drs who participate w Hmos often have to accept much lower fees than they actually bill, and can't balance bill the insured for the whole remainder. it may be that they'd charge an individual less knowing that they didn't have to do all the paperwork (to end up with the same reduced fee anyway.) there is a section on BC.org on ins and others may have more experience with this. Just possible that you can negotiate a bit. Ask to speak w the office manager. Yucky stuff but fun to try to beat the system. Good luck.

Momine

Greenarch, good point! I am shocked by the prices quoted for medical services in the US. Here an MRI with contrast costs 300-400 Euros, and although wages and other costs are lower in Greece, the machines and training of techs etc. are the same. The cost differences are not so high as to justify this test costing 10X more in the US.

wallycat

Just spotted this and my heart goes out to you. I wonder if you can contact the insurance and tell them if they refuse an MRI, then you will have the doctor schedule surgery to remove the breast since mammograms are not good at detecting ILC. Either way, you can explain, the insurance company will pay...surgery, reconstruction, doctor follow ups. Which way do they want to spend their money? I also wonder if you can contact someone on local news that does follow-up and community issues who can escalate and draw attention to the issue. We should not have to fight this hard for monitoring our health!! We have suffered enough.

Best to you.

emmacat

Hi,

I live in Europe, and I need to start screening. I do not want to do a screening mammo unless I can get an MRI at the same time. I inquired about having a breast MRI while home in the states over Christmas. I contacted Hoag Hospital in Newport Beach, CA (an expensive area!) and told her I would be paying cash. This was her response:

"The estimated price for a breast MRI at this time is $1,350. The interpretation of the MRI is $275."

I also contacted Dr. Christiane Kuhl at the University of Aachen, Germany. She believes in screening MRI's in lieu of mammograms, but said she would want to do a baseline mammo as well. She quoted €1000 (about $1350) which seems high, but she's some kind of expert and does presentations and has written research papers on breast MRI's.

I am trying to figure out what kind of insurance to get before I do a screening breast MRI, if I should get international, excluding U.S. coverage, or something like Cigna International, which includes U.S. coverage, just in case.

Kiss77

Hi emmacat,

Where do you live? Here, in Bulgaria MRI costs 150-200E. You can make it here, get the disk and bring it to whoever you want to make the interpretation.

I saw Mominie's post for the price of the MRI. She lives in Greece - you can go there, too.