I need more information about advocating for myself in the American Health Care system
September 26, 2012 7:05 PM   Subscribe

So this was me commenting a bit ago about how some views toward health care actually damage the lives of real people. And now I need advice, because the situation has grown so far out of my control and I think I’ll go out of my mind with worry.

Short version, I'm recently unemployed, uninsured and I have a mass on my left ovary the radiologist report suggests is a tumor in need of biopsy. The pain is a constant 5-6 based on this scale, with spikes up to an 8 that are brief or hours long. I've fallen between the cracks of the healthcare system and my boyfriend can no longer cope and has dumped me as of last night. I've listed the options I'm considering, as well as the things with which I'll need assistance for each option. My questions: 1. How/where else should I look for assistance? 2. Have I missed anything I should consider?

I have at the absolute minimum, one month to wait until I get a referral to a gynecologist through the county. On Monday this week I was told that my normal pap smear meant I could not be referred because there was no need, and there was no record in my chart of my wanting a referral. I asked the nurse when did pap smears start finding ovarian pathology? And cried. She asked who told me I have a tumor. I told her that my MRI and ultrasound reports are in my chart. A few hours later she called back to tell me very excitedly that the doctor has started the referral process, but it will take some time. Hoping that I could pick it up the next day, “I asked how long is some time?” A month, maybe a month and a half. Nothing can be done to make it happen faster, because the referral is being done by the county, not by the clinic. My trust in this system is almost irreparably broken by several other mis-statements at every level, from scheduling to billing to nurses and the Nurse Practitioner who delayed my referral.

My boyfriend talked me into making an appointment with a gynecologist acquainted with a friend of his. He’d convinced me to do this a month ago, but only sent me the contact information Monday, despite several reminders, and pleas. Thanks to some name dropping they squeezed me in for next Monday. The first visit will cost $230 plus any labs or further ultrasound. I had been calling other gynecologists whose offices declined to accept a “self pay” patient with a known tumor and no insurance of any kind.

Yesterday my boyfriend dumped me. He said that I have “a lot of projects going on that he doesn’t need to be involved in.” Yes. I suppose finding a job and getting health care is a lot of projects. My name is on the lease, but we just got a roommate to help defray the costs of my uncertain situation. He had talked to his parents on Monday and they told him that I seem lost and all of his help is doing me “a disservice.” My name is on the lease, however I am sleeping on the couch until I can find another place. They also expressed that he "doesn't need to be taking care of someone else while he is in Medical School." And he agrees with them.

Several mefites have reached out to me to offer help and to suggest some courses of action. These are the two that I think makes the most sense:

Crowd source funds to get pre-existing coverage insurance. This will take a few weeks and have a deductible, likely pretty high. [worst case is $235 per month for a maximum of $7,000 catastrophic maximum excess.] Find a surgeon who accepts that insurance and can make a payment plan for the remainder if necessary. Get surgery while living with my ex-boyfriend, then find a job and then get an apartment. If the ovary is not invaded by the tumor/has no other pathology (isn’t twisted), it might be spared and I can keep the pair. This is not a priority for me, but several people have mentioned that staying in this system allows that. Hope to not need chemo or radiation.

Option 2: crowd source funds to go to another country with less expensive health care. A couple of mefite friends I met are medics in another country and have invited me to visit them. With their help, the kind of pain and my history I would be operated on within a week and just have to pay hospital charges much lower than here. The ovary would likely not be saved. I do not hold a current passport, so I would need to get one. [worst case scenario about $7,000 to be cared for by people who...uh...care]

Either way, a friend has requested that I go help with her baby for a few weeks on the East Coast. She’s a stay at home mom and the baby is sick. They can’t pay me to help, but they can feed and house me for a few weeks. This is appealing because sleeping on a sofa and interacting with the guy who just dumped me is going to get old. Also, I love this friend and her husband and their toddler. We would all be helped immensely by this. If possible, crowdsourcing of frequent flyer miles to accomplish that trip? Are there websites for that?

Staying here in Orlando gives me little to do but beat the job search path (knowing as I do that I need abdominal surgery) and mope around the apartment. I volunteer teaching adults literacy and I go to a knitting group one night a week. I don’t own a car, so I have been pretty isolated here.

So now that I’ve outlined what I need to do, I need help mapping out the logistics:

What are the best crowdsourcing websites for fundraising? I have heard of Chipin and...some others. Pros and Cons of them? How to encourage people who want to give but want more control over where the money goes? Amazon wishlist? Something else?

Part of my health problem is that I’m having a cognitive decline. I have trouble integrating information. This question has been in process since I asked my last question (I asked it to give myself time to formulate this without being hasty.) We don’t know if this is because of the tumor or something else (well, some think it may be the tumor/hormones, others think maybe it’s lupus or RA. I wish I were kidding.)

I need help comparing PCIP insurance plans. Who can I contact for that?

Things I have done/tried:

Enrolling in medical trials. My joblessness/no insurance status makes me a poor candidate, because trials have costs involved. The screener stopped there.

Social workers at local hospitals: they referred me to Medicaid and the county program. Florida would qualify me for Medicaid if I had a disability or a baby or were pregnant.

Gone to the emergency room in excruciating pain. They did an ultrasound, decided the ovary was not twisted and gave me Percocet and a prescription for tramadol. This was the public ER that is required to provide the most care of all the ones local. While I understand that in other countries/other situations this would result in at least someone taking a look inside, I was given an ultrasound and sent on my way when the results of that showed probably not twisted. That level of pain returns near daily, but I fear being labeled as a drug seeker in the health care system. Also, the bills.

Finding a job with health insurance. Finding any job has been very difficult, health insurance even more so. I have been reminded that small business insurance costs go up dramatically with cancer treatment. I am not interested in having a small business feel like I screwed them over. It does look like this is just going to be surgery and done, but there is a small chance that this is very bad news.

Looked into starting a non-profit or charity to make donations from my larger social network more appealing. However, a kind Mefite has found this in the tax code (and I'm quoting the IRS here): "must be organized and operated exclusively for exempt purposes...and none of its earnings may inure to any private shareholder or individual."

While I have a pretty long history on Metafilter and there are mefites who know me in person, I’m supremely conscious of the difficulties in the past so feel free to ask questions.

HiveMind, is there something I’m missing?
posted by bilabial to Health & Fitness (51 answers total) 21 users marked this as a favorite
Your friend on the east coast - where does she live? There might be programs or options there that someone here would know to tell you about.
posted by dilettante at 7:20 PM on September 26, 2012 [2 favorites]

Have you a) talked to your local United Way or b) local cancer societies? I would do both before trying to do crowd-sourcing, mostly because times are tough and there have been some big cancer fundraising scams (both of which will make donations harder to come by.)
posted by SMPA at 7:20 PM on September 26, 2012 [2 favorites]

I had been calling other gynecologists whose offices declined to accept a “self pay” patient with a known tumor and no insurance of any kind.

Wait, what???

Perhaps you need to describe your financial situation to them somewhat differently... I have completely crappy "worst-case" medical insurance, with an HSA that I use to cover all my actual annual visits. And I don't even bother wasting time going through insurance that pays nothing, ever. I just pay everything up front on plastic (which I can get reimbursed from the HSA later).

And... Two out of three of my medical-ish providers (GP and eye doctor) actually give me a discount for not putting them through insurance hell.
posted by pla at 7:21 PM on September 26, 2012 [1 favorite]

I'm really sorry I can't give more substantive help-- your situation sounds so horrible and I hope you can get the aid you need. But my one nugget of wisdom is this: Why are you the one sleeping on the couch when you have PAINFUL CANCER? Seriously, your ex sounds like a total a-hole just for that. I think it's ok to be like "yo I have CANCER, I need to sleep in the fucking bed".
posted by threeants at 7:22 PM on September 26, 2012 [19 favorites]

Nothing can be done to make it happen faster, because the referral is being done by the county, not by the clinic.

Call your county commissioner. Then go to the press. Those things might speed up the process with the county.
posted by grouse at 7:23 PM on September 26, 2012 [3 favorites]

Did you talk to the social worker about whether you could qualify for state disability? (I'm wondering if the cognitive issues would qualify you.) That would come with Medicaid coverage.
posted by jaguar at 7:41 PM on September 26, 2012

As mentioned, try the United Way. Pick up a phone, dial 211, and they'll be able to tell you of ANY resources where you are now or plan to be in the future. From my experience with helping those in need, they've always went above and beyond if they could...

I'm so sorry for what you're going through. Good vibes to you and know that some stranger in internet land is thinking of you and hoping it all works out...
posted by youandiandaflame at 7:41 PM on September 26, 2012

Sorry I didn't think of this before, but the insurance might actually be the better way to go, because if it is anything that requires an ongoing condition and treatment, you'd be covered for that. Going to Europe seems like something that could be OK as a one-off, but if this isn't a one-off situation, what then? BEing in the US with insurance could be the better deal if that's the way it looks then.

United Way: great suggestion.
posted by Miko at 7:43 PM on September 26, 2012

Is there an academic medical center near you? They might also have more flexibility with payment/insurance options. You'd probably need a referral to one of their gynecologists to start, but it may be worth just calling their patient care number and asking about options.
posted by jaguar at 7:43 PM on September 26, 2012 [2 favorites]

I'm sorry you're going through this. Here are some resources that might be helpful. You're going to have to call various resources, some repeatedly. You're going to get conflicting advice, you'll be told to do things and people will lose papers. You have to keep at it, everyday. It will be exhausting. If you have friends that can help, please reach out to them. Don't take no for an answer and go over people's heads.

No Health Insurance

Coverage for All Florida

Call the clinic back everyday regarding the referral and find out who the county health commissioner or whatever they're called in your area and call him/her. Everyday.

Share Self Help for Women with Breast or Ovarian Cancer

Contact the American Cancer Society

Contact your state insurance commissioner

Hospitals that receive construction funds from the federal government must provide some services to cancer patients who can't afford to pay for their care. Approximately 300 hospitals take part in this program. Call (800) 638-0742 to find the closest participating hospital.
posted by shoesietart at 7:44 PM on September 26, 2012 [9 favorites]

"I had been calling other gynecologists whose offices declined to accept a “self pay” patient with a known tumor and no insurance of any kind.

Wait, what???"

This is a real thing. When I had to have thyroid cancer surgery, I had no health insurance, no job, and I was in the process of applying for disability but had not yet been accepted. I had to pay a deposit on the surgery, and I was only able to actually have the surgery because my dad is a personal friend of the surgeon and she offered to waive her fee after I called to cancel the surgery because I could not afford it. She's a bigwig at this particular hospital, and somewhat famous, so she threw her weight around so I could have cancer taken out of my neck. (The anesthesiologist declined to waive his fee, and of course my overnight stay couldn't be waived. All in all, I owed something like 19 grand.)

So, to the OP. You're in Florida? Apply for Medicaid anyway. I was eligible for Medicaid for a short period of time due to the catastrophic nature of my health crisis. Once I got on disability my income was too great (heh) to continue on Medicaid. Find out if your county offers health services to the uninsured or underinsured. I found out after my disaster that I could have spoken with the billing office at the hospital and gotten information from them about services available in my state/county. (Luckily I live in NY, where there are more services available in general.)

Also check into the National Association for Free & Charitable Clinics. There may be one near you that has relationships with volunteer providers. One near Orlando, for instance, helped a guy get a cancerous tumor taken out of his abdomen by a volunteer surgeon. Even they can't directly help you, they are very likely to be able to point you in the right direction.

Our health "care" system fucking sucks, and I really feel for you. No one should have to die of treatable illnesses in a medically advanced country because of their inability to pay.
posted by xyzzy at 7:51 PM on September 26, 2012 [8 favorites]

I have a mass on my left ovary the radiologist report suggests is a tumor in need of biopsy

If I'm understanding correctly, you haven't yet had a biopsy - this may not be cancer, unless doctors have told you definitively that it is. You absolutely need to get it looked at, as you're trying to do, but not all masses are cancer and blood/ultrasound tests for ovarian cancer are inconsistent at best, misleading at worst. Diagnosis of cancer vs. precancerous tumour vs. totally benign tumour is done by the biopsy.

They'll most likely want to remove the tumour regardless, particularly if it's large and painful, so the surgery costs would still be a concern for you. I would ask that gynecologist you're seeing on Monday for advice about paying. It's a question they hear all the time and I'm sure they will be able to refer you somewhere for help or at least information.

I'm sorry that you're going through this stressful situation.
posted by randomnity at 8:05 PM on September 26, 2012 [8 favorites]

Yes, please do drop back in and let us know which state your friend on the east coast lives in. Speaking REALLY broadly, states in the Northeast (as well as California/Oregon/Washington) tend to have much more generous eligibility standards for Medicaid and other state-funded medical coverage programs than do states in the South, so it might be a really good move for you to head out and stay with your friend.

The best-case scenario would be if your friend lives in Massachusetts, where Medicaid is available to all very-low income adults regardless of parental status or disability, and the state additionally provides very generous subsidies to purchase private insurance to those who aren't quite poor enough to qualify for Medicaid. By moving there you'd almost guarantee yourself free or very low-cost medical insurance. Other Northeastern states aren't quite that generous but quite a few of them have programs for low-income adults without children that you may qualify for.

In terms of the PCIP plan, that definitely seems like an option for you if you can scrape together the money for 2-3 months of premiums plus the out-of-pocket co-insurance costs for the surgery. Florida's PCIP program is run by the feds, and if I'm estimating your age correctly (between 19 and 34, yes?) then you're looking at between $176 and $237 per month for the standard or extended plan. The out-of-pocket max on those plans is $4,000 per year, which sounds like a real possibility given inpatient surgery for you. That's a lot of money but perhaps not impossible given that you're considering flying to another country as an option. If you can scrape together the money and apply by October 15th (which means ALL of your paperwork in, so you want to shoot for earlier) then your coverage would kick in by November 1. You could then get the surgery and know that your costs (for the year) would be capped at $4,000 which is a lot less than trying to do this out-of-pocket.

I'm so sorry this is happening to you, bilabial.
posted by iminurmefi at 8:13 PM on September 26, 2012 [1 favorite]

I don't know what county you're in, but google "Project Access" + Florida. Project Access is an organization in many states comprised of doctors, including specialists, who have agreed to volunteer care to those with no insurance.
posted by availablelight at 8:14 PM on September 26, 2012

That first item in my post was supposed to be a link -

No Health Insurance
posted by shoesietart at 8:15 PM on September 26, 2012

If you do choose to crowdsource funding for your health care, GiveForward.com is a site people I know have used with success. (A review here echoes what I've heard about it.)

I am so, so sorry you are having to deal with this. You will be in my thoughts, and if you do go crowdsourced, please MeMail the link to me so I can help. (I wish I had airline miles to contribute!)
posted by Sidhedevil at 8:22 PM on September 26, 2012

It might be worth contacting Catholic Charities of Central Florida. Catholic Charities was very helpful to a friend of mine in a similar situation. You do not need to be Catholic to receive services.
posted by Wordwoman at 8:29 PM on September 26, 2012 [1 favorite]

So I see in your previous comment that you moved in order to live with your ex-boyfriend. He does sound like a complete and utter asshole, but is it possible that you could borrow money from him for the flight to your friend in the Northeast? Or is it possible that he in fact OWES you some money? Or would pay for your flight in order to end his involvement in your "projects"?

More good thoughts are coming to you from me.
posted by snorkmaiden at 8:30 PM on September 26, 2012

Response by poster: I'm in orange county. Will follow all links, make lots of calls in the morning.

I think I need a script? Like the elevator pitch version of the mess above? It took me so long to pare it down to that size and keep some narrative.

My friend are in NJ, a small town. They are not in anyway equipped for me to stay with them more than 2-3 weeks. If I go to the hospital there I would worry about bringing Something Awful home to the new baby.

As for whether this is cancer, the GP who was seeing me when this was first uncovered used the c-word in saying this could be one of the best or one of the worst cancers. He said I should go to see a gynecological oncologist. he was unable to refer me to any particular one. Maybe using the term cancer in its 'misprogrammed cells being naughty and annoying' and 'OMFG you might die from this' senses simultaneously. Obviously a biopsy would be the ideal starting point for the finer points of planning. I've been trying to get one since May.
posted by bilabial at 8:42 PM on September 26, 2012

Free flights for cancer patients. This is specifically for treatment, not anything else, but a lot of people seem to not know. Maybe it will help somehow.

Gofundme.com another option for online fundraising that I don't see mentioned yet (of course I have crap eyesight).
posted by Michele in California at 8:44 PM on September 26, 2012 [2 favorites]

Best answer: For the script you can cut out all the boyfriend stuff and pare it down to the essentials:

Doctor X found a mass on my ovary on date X. I am in constant pain, ranging from the slightly tolerable to the almost intolerable. I have no health insurance, no employment, no resources, and am in an unstable living situation. My doctor has referred me to a gynecological oncologist for a biopsy that I need but cannot afford, and a positive result would require surgery and possibly extended treatment. What resources are available to me so that I may receive the care I need in a reasonable amount of time?
posted by xyzzy at 9:17 PM on September 26, 2012 [19 favorites]

I wish I could be more help, but there does seem to be a hotline specifically for women with ovarian cancer that might have some answers (http://www.cancercare.org/press/releases/16-2009_09_01). The number is 877-OV-HOPE-1 -- M-F, 9-5.
posted by en forme de poire at 9:51 PM on September 26, 2012

Apply for Medicaid. Even if you got something called "spend down" (which is where once you hit a certain out of pocket limit Medicaid kicks in fully), its better than nothing. Also check the Mediciad requirements of where your friend lives. Establish residency with their address and see if you qualify.

All of the other suggestions are good, but add Livestrong.com to your list of possible resources. I don't know what they offer in Orlando but they advocate and help people find treatment so they may have some resources. At this point, leave no stone unturned.
posted by MultiFaceted at 10:05 PM on September 26, 2012 [1 favorite]

If I were you I would be filling out all the credit card applications I could get my hands on and requesting cash advances. Worry about paying debt back later. This is what bankruptcy is for. Save your life first.

Also, if you are concerned about paying a penalty for breaking the lease, then consider speaking to the landlord and asking to be released on humanitarian grounds or whatever you want to call it. landlords are people too. If they say no, fuck 'em. Remember that you are essentially judgement proof. In a way this is a plus. If you have nothing to lose, then you can focus on preserving your health instead of your possessions.
posted by bq at 10:23 PM on September 26, 2012 [2 favorites]

So there are a lot of separate problems right now, and they're all so huge that it's probably hard to separate them.

Your ex-boyfriend sounds like a shit for doing this to you, and I would definitely throw a higher weight to whatever options involve you not being in his presence. You also sound like a nicer human being than I am - sleeping on the couch, when he's the one being selfish and awful? No. But in practical terms, this is only going to increase your stress. Cancer and cancer treatment is a time that you need to make as low stress as humanly possible, because it's going to take all your energy to go through it. I would definitely go live with your friends for a few weeks.

Per my mother, the American Cancer Society was actually helpful, though you may need an actual diagnosis, not sure. Their website claims they offer a "personal cancer guide," it might be worth your time to at least check it out and see what they can do for you, if anything. I know they've helped her out a lot, though that might have been a local option.

Don't worry about starting a non-profit: however, what you might want to look into is being essentially "adopted" by a non-profit, if you know individuals personally. You might be able to acquire something called "Fiscal sponsorship," which essentially means, they raise money through their charity, but they help you through one of their existing programs. Do not try this unless you have friends who actually work at nonprofits related to cancer, healthcare, etc, though.

Also: really, don't worry about nonprofit status for crowdsourcing money. From all of the recent medical appeals I can recall crowdsourced over the internet, none of them were tax-deductible, and people still donated. You might want to look into getting your own website, and also reaching out to people who might be willing to donate services or objects to people who donate. (Okay, I know this is the livejournal model, but it seems to have done good things for a lot of people even in recent years.)

In regards to your decision, I think it's going to depend a lot on how you feel about your ovary. This is an incredibly personal decision that no one can make for you, but here are some questions it might help to ask yourself.

-Is having your own biological children important to you? I understand it's not a priority, but how do you feel about that?
-If so, would those needs be satisfied by potentially freezing eggs now? (Which, I'm not sure on the logistics of, but I wanted to raise it as a potential possibility)

In regards to crowdsourcing: think also of every single group, association, high school, college, etc, that you have ever attended through the entire course of your life. You want to make contact with those and especially with the alumni sections to get these asks circulated.

If you want to talk about fundraising, I have never raised money for personal funds but have raised money for nonprofit projects that benefited individuals. Memail me if you need.
posted by corb at 10:37 PM on September 26, 2012

My idea was the PCIP, but someone's already mentioned it. All I can say, as for paying for it, it's your life--put that shit on credit cards and declare bankruptcy if you have to. I'm not saying this lightly as I'm poor as dirt myself and also going without health insurance. But it is better to have bad credit than dead.
posted by Anonymous at 10:41 PM on September 26, 2012

Oh yeah, and for the love of all that's holy, on reread, do not, absolutely do not go through surgery while living with your ex boyfriend. It will make you feel horrible and will be terrible for your recovery.

If you don't have great insurance, you don't get to spend a lot of recovery time in the hospital, generally, which means you'll be incredibly dependent on whoever you are living with to help care for you for at least a couple days. This can include helping you to the bathroom, helping you shower, etc. You may have to be continuously draining blood from tubing yourself post-surgery - possibly with the aid of a visiting nurse, but most likely not.

This is not the kind of thing you want an ex-boyfriend who has proven himself untrustworthy in your time of vulnerability privy to. No matter what his medical experience is, I have no faith in his ability to care for you the way you will need.

Do you have any family that would either let you live with them or you could invite to live with you for a while?
posted by corb at 10:42 PM on September 26, 2012

1.) Don't go help your friend with the baby. You are in constant pain! Babies do not sleep! This is not a good combination, at all. As a mother and a frequent ovarian pain sufferer I would not recommend it.

2.) Don't sleep on the couch. Sleep in the bed. Do not let your ex make you feel guilty for living in your own home.

3.) Keep calling doctors until you can find one who will see you. Planned Parenthood, as others suggested, may be an option, but hopefully there is someone in town who will help.

4.) Previous posters are right that this may well not be malignant cancer. I once had a cyst on my ovary that was larger than the ovary, and causing torsion. The doctors I saw were very concerned that it may be malignant. I had it removed via emergency surgery and it was not. Since then I have repeatedly had large cysts on that same ovary (I know, fun, right?) and none of them have been malignant. This happens more than many people (even many doctors who are not specialists) know.

5.) You still need to get it removed, though, because ovary issues, as you and I both know, are INCREDIBLY PAINFUL and what's more if left untreated can cause all sorts of serious complications. In my case, that first big cyst ruptured and I developed internal bleeding which was . . . bad. If you can find a doctor anywhere who will take care of this for you I would get it done regardless of the scary bills that may result. In fact I did get the aforementioned surgery on myself done when I had nothing but awful catastrophic student insurance, and the catastrophic insurance refused to recognize this as a catastrophe (even though, as it happened, I was suffering from life-threatening complications that made the surgery immediately necessary). And I got stuck with a $25,000 bill that I spent the next several years negotiating and struggling to repay. And that totally sucked. But you know what? I was alive. Also, later, still fertile, which eventually worked out well for me. (I joke that my kid was a $25,000 baby).

I hope you get help for this as soon as possible. You do deserve to get help no matter what any doctor (or your stupid ex) says.
posted by BlueJae at 10:44 PM on September 26, 2012 [3 favorites]

In California, there are social worker type people who get people into Medicare or Medicaid pretty much immediately in certain situations. Or maybe it's that county providers agree to "advance" care, I'm not sure. But at least in the system I know here, you might qualify based on recently unemployed plus medical emergency. Maybe something analogous where you live?
posted by ClaudiaCenter at 10:47 PM on September 26, 2012 [1 favorite]

I have a cousin on the West Coast who recently got eye cancer and just finished her treatment for it (as a full a recovery as could be hoped, thankfully), so am speaking from that experience.

Crowd-sourcing funds is a great idea. She and her husband were both recently unemployed (egads), so they went that route for costs not covered by their insurance, and it ended up working out pretty well. They used Indiegogo.

I live in France and had looked into what care for her cancer would cost here, without our insurance since you have to be a resident to get it (I also happen to live a couple of miles from the best cancer clinic in France, woohoo), and with a round-trip plane ticket figured in, it still came out to much less than her original care plan, even with her US insurer. However, she got lucky and was able to get treatment at a university, since her eye cancer was a rare sort that academics were interested in studying.

Option 2: crowd source funds to go to another country with less expensive health care. A couple of mefite friends I met are medics in another country and have invited me to visit them. With their help, the kind of pain and my history I would be operated on within a week and just have to pay hospital charges much lower than here. The ovary would likely not be saved. I do not hold a current passport, so I would need to get one. [worst case scenario about $7,000 to be cared for by people who...uh...care]

For info (IANAD), my ovary was saved in Finland following a burst torsioned ovarian cyst. That was 12 years ago. It's not necessarily a given that they'll remove it; in any case you'll be consulted about it. They said they don't know if it's viable, but when in doubt and keeping the ovary isn't a health risk, they keep it.

I have also heard that getting care outside the US system can complicate things once you're back in the US, so do keep that in mind, weigh the pros and cons.

So sorry to hear you're going through this.
posted by fraula at 12:59 AM on September 27, 2012

Amendment to my previous comment, because as I also told bilabial over PM, I regret saying this:
I have also heard that getting care outside the US system can complicate things once you're back in the US, so do keep that in mind, weigh the pros and cons.

I've heard this from a lot of people, namely my cousin was told it could complicate things, and it factored into her decision to stay in the US, although the fact that the university care was so much cheaper was the main reason she chose it over coming to France.

However. On further reflection, I have never heard concrete examples or evidence of it "complicating things", which brings up another jarring realization: it's a rumor that clearly works in favor of insurance companies.

Uninsured foreigners are not turned down in Europe. Heck, when I first arrived and hadn't yet qualified for the national scheme in France (I was a student), there were doctors who went through emergency appointments as if all were normal, and then when I went to pay, they told their secretaries to shoo me out – they didn't want to burden someone without insurance.

How to encourage people who want to give but want more control over where the money goes? Amazon wishlist? Something else?

My cousin had zero issues with this, although I can certainly understand your concerns given your ex's and his family's heartlessness :-/ Indiegogo let her specify her cost breakdown and end goal, but honestly, since all of us knew that no one chooses health issues, we all put into it without asking for specifics. Even including some people in the family who are usually more iffy about that sort of thing.

He said that I have “a lot of projects going on that he doesn’t need to be involved in.” Yes. I suppose finding a job and getting health care is a lot of projects.

He's a project himself, yeesh. Health care is a right, not a project. You can choose a car or accommodation; you can't choose your health.
posted by fraula at 4:42 AM on September 27, 2012 [1 favorite]

I am a gynaecologist, not your gynaecologist etc etc. I hate commenting in medical threads generally, but I want to clear up one major misconception.

Ovarian cancer should not be diagnosed by biopsy.

If you do have a malignant tumor, which is unlikely based on your age, the decision to operate is based on scan (MRI and/or ultrasound) appearances, and the blood tumor markers (usually CA-125). That's because a localised malignant tumour would be cured be appropriate surgery, but biopsying it first would spill its malignant contents into the abdomen, raising the staging, and therefore requiring chemotherapy. My impression based on the limited information posted here is that your primary care doctors, and the ER docs/emergency gynae docs, think based on scan appearances that you have a benign tumor, hence their lack of urgency. If your primary care physician is unaware however that you have substantial pain, they need to know, because pain due to ovarian torsion is an emergency anyway.
posted by roofus at 8:47 AM on September 27, 2012 [15 favorites]

In our community, we have a network of nonprofits that offer emergency assistance in exactly this type of situation. You said you volunteer teaching adults literacy. Talking to people who run that literacy group might help put you in touch with a network of nonprofits and help you find a group like this. Some churches have emergency funds like this and you don't necessarily have to be part of the church. You could also try Googling "Orlando emergency assistance" -- several organizations are listed. You don't have to have your house burn down to be eligible.
posted by chickenmagazine at 9:40 AM on September 27, 2012

If your primary care physician is unaware however that you have substantial pain, they need to know, because pain due to ovarian torsion is an emergency anyway.

roofus, Does this mean the OP should go sit in the ER until they actually examine her? From her previous post she's been to the ER before & they pushed her out the door with a prescription for pain killers. Should she just go in again?
posted by pharm at 9:43 AM on September 27, 2012

Planned Parenthood of Orlando. Make an appointment and ask for help on what to do next.
posted by barnone at 11:45 AM on September 27, 2012

Response by poster: The doctor who told me the results of the MRI offered no comfort about the vast unlikelihood of this being "the bad kind" and urged me to get it removed as soon as possible. I have been working to accomplish that since. Part of my problem has been not knowing what to ask. Another part has been having trouble finding out who to ask. The biggest part has been an inability to pay.

The emergency doctors were very clear that they were only concerned about twisting, no other factor would get me into surgery there. It was not twisted and I was told to see a gyn "as soon as possible."

I'd really like to continue believing that this is probably benign. But nobody has told me that this should wait (except the nurse who says a normal pap smear means no gyn referral), just that they can't get me taken care of any faster because of bureaucracy.

The primary care Nurse Practitioner told me that the pain that caused me to vomit was most likely due to ovulation. She knows I'm in a lot of pain, and I don't know who else to convince that this is an emergency for me. I'm taking 500mg of tylenol 4 times a day and using the Emergency room tramadol and hydrocodone sparingly, for when I have to leave the house or things are super extra unbearably painful.

I've called most of the places suggested here today and made myself a spreadsheet. I have a friend who will go over it with me and make a next course of action. A few places said "sorry charlie, call us back when you are officially diagnosed as having real live cancer" others said, "the person you need to talk to will be in the office later. They can tell you what other organizations might help you, we don't offer direct financial assistance. But we'll try really hard. When we can." I left a lot of voicemails. One place answers the phone in Spanish, uses a different name and charges a membership fee.

Planned Parenthood was especially unhelpful, and the American Cancer Society suggested some resources for possible screening/case management.

Tonight I'm going to wait in line at Shepherd's Hope, a first come first serve medical charity and hope to be seen and referred. Tomorrow, more phone calls.

If anyone would like to see the spreadsheet, I can email it to you. Be warned: It's the ugliest spreadsheet ever created.
posted by bilabial at 1:31 PM on September 27, 2012 [2 favorites]

Wow! well done you! I have no idea how I would manage in such circumstances. I wish you all the best tonight. I'll happily contribute either via paypal or a donation website, I've gone on the record before on Metafilter with my utter horror of someone falling between the cracks in such a health system. It beggars belief ... you'd do better in Cuba.
Blog this please!
posted by Wilder at 2:21 PM on September 27, 2012

The Nurse Practitioner was trying to reassure you based on her own experience. She probably assumed you had an ovarian cyst, which are incredibly common, and many women have them without even knowing. They usually disappear on their own. But when they don't disappear, and instead get bigger, you will most likely discover them because you will have pain during ovulation, and that's what will alert your doctor to your cysts in the first place.

Ovarian cancer is actually pretty rare, especially at your age. It is even more unlikely for you, as someone on the Pill. If you were over 35, post-menopausal, taking HRT AND had a family history of ovarian cancer, that would increase your risk of this being cancer. Otherwise, even if the object shows up on the x-ray as a solid mass, assuming that it is a tumor, and a cancerous tumor at that, seems like a really big leap to take.

That doctor that seems to have told you that you probably have cancer sounds, from what you've told us, at least incompetent, maybe even criminally negligent. He has basically put you into shock over this, and no wonder. I'm pissed off on your behalf over that guy's ineptitude!

So, let's actually look at the situation, okay? Taking out that doctor's opinion, what you actually know is that you have severe abdominal pain and a large mass on your ovary, right? (How large, by the way? Do you have any idea how many cm the mass is?)

Pain is not something to ignore, and you are in a lot of pain. Torsion, or the twisting of your ovary-whether it is a tumor, cyst or endometrioma--is what usually causes pain. That's why the ER people were so concerned with making sure that nothing was twisted on your ultrasound.

Now, did any one in the ER tell you that your mass was a tumor? Think about that carefully, because if you went in to the ER saying, "I have cancer and I'm in a lot of pain from the tumor", they may have just assumed you knew you had cancer going in.

But you don't. Let me repeat that: you do NOT know this is cancer. They checked only to see if you were in immediate danger (torsion), because they are ER doctors and not oncologists. Their job is treat whatever makes this an emergency. For you, that was the pain, so they gave you pain meds.

Had you not said "cancer" like it was a fact in evidence, they might have gone a bit further, maybe at least done a simple blood test to check whether your CA-125 levels were elevated, which happens with most (but not all) actual cancerous masses. You can still get this test done, and you should ask for it when you do go in to see the doctor.

Even if this mass is not a benign ovarian cyst, though, you might not need abdominal surgery, another assumption you are making.

For example, rather than a tumor, it could be an endometrioma.

Endometriomas, (which I had with my Stage 3 endometriosis) known as "chocolate cysts" because they are brown and full of endometrial tissue, are much more common than ovarian cancer and also appear as solid masses on ultrasounds.

Several women here on Mefi have experienced torsion from endometriomas, which is incredibly painful. Even without torsion, there can be severe pain, though.

Most of the time, when you have a mass that could be an endometrioma or an ovarian cyst, in the absence of pain, the doctor will try a "wait and see" approach, possibly using hormonal therapy to shrink the mass. My doctor did this for 6 months, with no discernable change in size (I think the endometrioma actually got a little bigger in my case, up from 2cm to ~3cm).

If hormonal therapy didn't work, next step would be laparoscopic surgery to give the doctor a closer look. It is not very invasive--in my case, a hysteroscopy, they went through my navel. I have no discernible scar from this.

Now, you have severe pain, so surgery could well be in your picture, but it is still not a given.

If you have to have surgery, yours may be laparoscopic, too. You may have the more invasive laparotomy. But even if you do have cancer, you could be looking at chemo or radiation instead of surgery, or possibly a combination of all three.

For me, the hysteroscopy was the point when my Ob/gyn discovered my body was just riddled with endometriosis. I'd had pain and "breakthrough bleeding" for years and told that it was just something I had to learn to live with, though, so this had been going on a long time with me.

So, in my case, a hysterectomy was the last, best resort left to me. And that was ten years ago, and I'm still here, wasting time on Metafilter. :)

I am not trying to marginalize your distress. I would be scared, and worried, and feeling frustrated if I were you. I know the pain is so bad it makes you throw up and you've been dealing with this awhile and you are feeling down and helpless.

I just want you to know, too, that you can be hopeful. This may not be cancer! You may be able to get better again, and go on from here.

And find a better boyfriend! One who actually has your back when you're hurting, because damn, woman. What the actual fuck, as my fellow Mefites like to say. That guy was SO not worth your time.

I'm in Florida, too, on the East Central coast, if you ever need someone to just vent about all this with. We could even get together and have our own personal meetup of two. Mefimail me!

Sorry this ran so long. I wanted information when I was going through similar circumstances, so I have loaded this comment up with it!
posted by misha at 3:55 PM on September 27, 2012 [5 favorites]

Response by poster: Back from an evening at the clinic. I was the last person in the line that got admitted for care. Everyone behind me had to go home without being seen.

The doctor saw me, looked at all my records and said, "Ya. That has to come out soon" He marked my case as urgent and I am being referred to a gynecologist. I will get a call back next week to set up the initial appointment. Still no idea when that will be (or what the cost will come out to, have to have that conversation in the office). From there we schedule surgery.

So now my most urgent needs are keeping the pain bearable until consultation. Once I have a surgery date I will focus on figuring out who will care for me in the aftermath. As soon as I am recovered I need to move out of this apartment.

A kind mefite has offered to connect me with her husband who can help me brainstorm job ideas in person while he is in town soon.

Ex-boyfriend knew about this clinic "a few weeks ago" but had never mentioned it to me. When I told him that's where I was he responded that it's a good one, some doctors from the hospital where he trains run it. The evening hours are completely volunteer. I am relieved that I went and want to give a huge shout out to Cereselle who left work early, picked me up, and rubbed my back while I sobbed in the waiting room tonight. I was a mess and she is a trooper.
posted by bilabial at 6:36 PM on September 27, 2012 [12 favorites]

Your ex is such a dick. Someone with that little basic empathy should not be practicing medicine.
posted by Anonymous at 10:13 PM on September 27, 2012

Best answer: For anyone else reading this and looking for medical help for the uninsured: check and see if there's an Adventist hospital in your area. Seventh-Day Adventists may have some slightly off-center Christian beliefs, but healthcare is their major industry. Adventist hospitals are nonprofit; many Adventists work in the medical field. Church culture highly encourages volunteering and donating. You do not have to have any religious affiliation, and they do not push their religion on you (although they will probably pray before operating).

When I went to the ER for what the doc-in-a-box thought was appendicitis (it was massive uterine fibroids), I was unemployed and uninsured. They charged me the entire cost afterwards. I didn't have the money. They reduced it to half if I paid cash right then. I had that money left over from having withdrawn my 401(k) for living expenses, so I paid. A couple weeks later, I got a letter saying I fell within the parameters of their charity program and they sent me a check for every penny I'd already paid.

The place we went to last night was an Adventist all-volunteer clinic. They told bilabial which Adventist hospital would give her free labs and free prescriptions, and hook her up with Medicaid counselors to help her get started on a disability application.

I'm a former Adventist, and though I no longer believe, I am proud of this part of the culture I grew up in.
posted by cereselle at 8:43 AM on September 28, 2012 [14 favorites]

(And yes, bilabial's ex is the biggest douche on the planet.)
posted by cereselle at 8:44 AM on September 28, 2012 [2 favorites]

cereselle, you rock! well done, that's valuable information. I'm so relieved to think there's some light finally for bilabial.
Are there any practical things we can do to help? It's difficult being on the other side of the pond but let me know!
HUGS, hope the healing can begin soonest!!
posted by Wilder at 5:39 AM on September 30, 2012

I'd really like to continue believing that this is probably benign.

FWIW, it's not unheard of. My boss had this happen to her this past year and it was entirely benign. The urgency is because it's just nothing to take chances with and also because you don't need it messing with your other organs further.
posted by Miko at 9:34 AM on September 30, 2012

Response by poster: So the update: a very kind lady from Sheperd's Hope just called me back. She is telling me that they don't do the surgery, and they are figuring out who to refer me to. I haven't been here 6 months, so I don't qualify for...something. Her option is to send me back to the Orlando Health System. The county program for Ob-Gyn. She is going to fax my records to them and someone should contact me in 3 days. If they haven't called in 3 days, I can call her back, because what happened with her is that my fax didn't get to her, so she had to request it again. She wants to know that I've been contacted by them.

So I suppose if that process takes another 2 months I'll qualify for...whatever else.

On the relationship front, ex-boyfriend has continued to insist that I need to move out as soon as possible, and approached me last night about possibly seeking help in a residential treatment facility. For the depression. This time, not because he's worried about me but because he sees people at work in the ICU all day and he's tired. And he has his priorities too. (I don't think a residential treatment facility for depression is appropriate, for a number of reasons: I'm not a danger to myself, to anyone else. They are expensive.)

Roommate is moving out today, so I will set up an air mattress in that room, and he can have his bed back.
posted by bilabial at 7:33 AM on October 3, 2012

Why isn't your boyfriend the one moving out?
posted by grouse at 7:43 AM on October 3, 2012 [2 favorites]

Your ex-boyfriend a total asshole who should be publicly shamed for putting you through this.

What a complete jerk. I am fantasizing about you showing up at his medical school as a patient and the intake process explaining the WHOLE situation to all the doctors and students so that he looks like the complete ass that he is. If you do an Indiegogo campaign, be sure to mention it and spam his friends list on FB with the links... okay, I'll stop fantasizing now.

A few more practical notes on that front:

- What are the rental laws in Florida/your lease situation/etc.? *Can* he legally kick you out? Can you assert some sort of "renter's rights" and make him go through a long drawn-out procedure to evict you? If you make it hard for him, he might move out himself. Then you can get a few roommates or do AirBNB and maybe make some extra money.

- Were you close with his parents? Can you call them and shame him into treating you well? Or just call them to fuck with him.

- I know your family is not an option, but are there other friends? Maybe look into health care options in various cities/states (like Healthy San Francisco, for example) and then reach out to friends who live in those places? (This is medical tourism within the US, basically.)

- How is your credit? Can you borrow the $7000, get treated in another country, and worry about it when you're healthy? What is aftercare like in that country? Will you have a place to stay? Sorry if I missed this in the earlier Q&A.

Please keep following up. We are here to help!
posted by 3491again at 12:11 PM on October 3, 2012

FFS bilabial this is appalling! you are really falling between the cracks here and having to deal with issues that should never come up while you're ill like this.

I'm going to summarise this from some of the above and the Memails because I know you're overwhelmed and panicking and can't really think straight, unpacking this into the main problems:-

You and boyfriend are jointly named on the lease.

Because you are now unemployed, suffer from depression and need surgery for an ovarian mass, he can't deal with the stress (and lack of co-payee presumably) and needs you to move out. You were fired as a result of the ongoing pain from the mass, although they dressed it up as "not a good fit" but basically you now don't have an income and can't pay rent.

His parents agree with him that you should be able to "boot-strap" it, whatever that means in this context. I get the impression because they have never had financial problems they really don't seem to understand people can be in this kind of situation but whatever the reasons they don't want their son negatively impacted.

The Charity Hospital you thought might be in a position to do the surgery says it can't and you haven't yet been resident long enough with the county programme to qualify for surgery there.

All of the accommodation assistance is aimed at people who are on low income, not people who have no income.

you don't have enough credit rating to take out loans.

You have an invite from a friend in New Jersey to come help her with her small children which answers your short term accommodation and food needs. You will probably need to know if there are any charity hospitals there who might do this surgery?

Can the Sheperd's Hope lady find out if they have a sister facility in New Jersey or nearby who do this surgery?I'd be happy to put up an Ask about that if your 2 week wait is a problem.

You have an invite from a friend in another country to come over and have the surgery there but the charges will probably follow you back to the USA.

At this stage bilabial I would be strongly urging you to set up the indiegogo site and use all the social media necessary to get this awful situation out there. I'm certain that whatever it raises will allow you to negotiate later with the hospital, or get some kind of health insurance cover.

Like 3491again above I have some thoughts about what I'd like to say to your boyfriend but right now I think your situation is sad enough to get more coverage through social media.

I think there are plenty of Mefites who would help publicise this through a variety of social media so please do put up the site.

what practical things do you need right now?
posted by Wilder at 3:23 AM on October 4, 2012 [2 favorites]

Have you gone through the Florida Medicaid Prescreening Tool? It might help you figure out if you would qualify for services. Keep in mind that it evaluates based on "household", so you might have to figure in your ex's income...or not. But it's worth looking at just in case. Apparently you can also apply online for benefits in order to get an official determination of eligibility.

Depending on where your friend lives, their state might have a similar online service. However, if you live with them and have to count their household income, that might not be helpful. I'm not sure on how they define "household" if you are couch surfing.

Wish I could help you out more! If I think of something I'll post here.
posted by MultiFaceted at 11:02 AM on October 6, 2012 [1 favorite]

Folks, this thread needs to be for answers only and not for some sort of ongoing "help bilabial raise money" situation. I am sorry this is challenging but we need this to not become a "what is bilabial's ongoing status?" situation either. Please find a way to organize offsite for this. Please do not use MetaTalk.
posted by jessamyn at 7:08 AM on October 9, 2012 [2 favorites]

IANAD, I am an ultrasound technologist, I haven't seen YOUR ultrasound. In my experience, when an ovarian cyst or mass gets fairly large, there is often little remaining ovarian tissue in one lump. Usually the tissue is spread thinly around the cyst/mass. If it is a cyst that can resolve on its own or can be drained, the tissue can regroup and become a normal ovary again. If it is a mass that has to be surgically removed, often the whole ovary is taken. Especially if there is a concern for cancer, the whole ovary is likely to be removed in order to be certain of getting the whole mass out.

I looked a bit online for the affect on fertility of having an ovary removed. One paper, from 1999, was reassuring (PDF). The conclusion states that women with one ovary generally don't have a reduced fertility potential, naturally or with IVF. The remaining ovary will usually remain about the same size (in other mammals it gets bigger to compensate), but will likely ovulate more frequently (every month, instead of alternating with the other side). It does say that women may have a shorter reproductive life span, due to going through the eggs more quickly.

Sorry for what you're going through, and that I don't have anything more practical to offer.
posted by dorey_oh at 9:59 PM on October 10, 2012

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