Crazymama's Cancer Story

I have my own tale to tell about federally subsidized health care.

Here is my cancer story and my medical treatment while on welfare. which is probably the #1 reason I've never written my story, admitting i was a recipient of medicaid doesn't leave me feeling super rad.

But I have my own story and damn it I'm gonna tell it, it's time i finally did. take it for what it's worth.

first remember i had Thyroid cancer. which may not be the most exciting type of cancer, but it was still incredibly inconvenient.

When i found the lump on my neck and started checking into it , getting my first appointments and ultrasounds we had private health insurance through my husband's work. I got right in, they referred quickly , ultrasounds scheduled in a timely manner. chop chop! it was speedy fast for the first few months.

Then due to issues at work and lack of advancement opportunities my husband quit his Job and went back to school, (you make sacrifices in life while trying to get ahead , this was a small one).We lived with my mom in the basement and we got on a state funded medicaid program (welfare) for our medical insurance for the duration of his 5 year degree program. There was a program , we utilized it. we lived off student loans and grants and welfare to survive.

my thoughts on this were, we are legal US citizen's that paid into the welfare system before and would forever after . while we had a need we were working it. plus you can't have a herd of kids and no insurance, and have medical issues and let them go. the medicaid program is out there for that reason. temporary assistance. i was not a long term lifelong milking the system kind of recipient.

That being said, during this time i still had cancer and needed follow up.

while on medicaid , i went to my PCP with horrifying wait times, waiting 2 hours was standard to see her for 5 minutes. she was what was available on medicaid. getting in when you were sick was unheard of. it was dirty , and gross, and incredibly unpleasant. but she was what was available and who I'd been assigned to. the system was overloaded, and her attitude was, she was getting paid no matter what and whether or not, she had patients lined up ! you could tell the attitude was , "why be competitive by having a nice office, nice staff, and short wait times?"

then when it was time i was referred to a surgeon who seemed nice. but wanted to piddle around on actually doing anything. come in and we'll examine your neck. come in and we'll do a needle biopsy, let's wait a few months and try suppressive therapy and see if the nodule shrinks. let's repeat that test again.

for almost 2 years this Surgeon/Dr. waited around on this nodule. He told me i was young, thyroid cancer is slow growing. It's true my biopsy wasn't definitive (but then again follicular carcinoma rarely shows up on fine needle biopsy, it's only by surgical removal that diagnosis is definitive) but in the mean time i couldn't swallow. I had difficulty swallowing the tiniest of pills, food got stuck, i felt like i was choking when i was laying down. and there was a growth on my thyroid.

by the time he removed half of my thyroid, the growth was golf ball sized underneath the gland and had been compressing my esophagus (no wonder i was choking and couldn't swallow).

At my post surgery follow-up appointment, he told me it was a borderline follicular adenoma (benign growth) he gave me hormone replacement and sent me on my way . i believed him.

"Oh it wasn't cancer!", i told people. it was benign. great.

6 months later i got a letter from the cancer registry at the hospital I'd had my surgery at wondering what follow-up I'd had. i ignored it thinking ,"why am i getting this, i thought it was benign?" Another year went by. i got 2 more letters from the hospital, and i wondered why, since that surgeon had told me, it was only borderline. i hadn't even questioned what he told me.

i started having trouble swallowing again, so i went to a different PCP this time with equally long wait times, and horrible referral staff . I was finally referred to (after demanding to be referred) to an ENDOCRINOLOGIST which i apparently should have been referred to years before.

keep in mind we are still on medicaid.

At that point , i got a copy of my chart from the first surgeon to take to my new specialists and the endo. Imagine my surprise when i found a 2nd opinion on my pathology report of the original nodule.

a 2nd opinion from a world renowned pathologist saying I HAD CANCER(the hospital sent it to because it was "borderline" ) I HAD CANCER!?!

2 plus years before it was cancer. but the surgeon didn't see fit to inform me or go in and take out the rest of my thyroid which was , according the American Thyroid Association standard protocol! it should have been removed and i should have had radiation 2 years before! i guess he assumed telling me it was borderline and suppressive therapy would do the job.

i plunged forward to a new set of Dr's . of course i questioned would i have been treated better if I'd had private insurance? would the quality of care in my case have been better?

My new endocrinologist was 30 minutes away in downtown Phoenix. but i took what i could get, i was on medicaid.

Want to know how about the wait times there? each appointment was a STANDARD 3 HOURS of waiting. an hour and a half or more out front in the jam packed waiting room, an hour and a half in the dirty little office waiting to be seen by the dr. and 20 minutes with a Dr that didn't speak English that i could understand. his accent was ultra thick from his eastern Indian country. he'd ask me questions, then ask again over and over either not understanding me, or forgetting what he'd asked me. neither of us could understand the other. questions went unanswered. he explained nothing. i cried at every appointment either over the wait time as i struggled to keep whatever kids i had with me in check, or because he was rude and uncaring.

this time around i went to an ENT at an office that my kids had gone to for tubes. i essentially demanded to pick my own surgeon. i fought the insurance. i was NOT going to another substandard surgeon that i was just randomly assigned to.

she agreed the rest of the thyroid should come out, it was overcompensating, when it should have been dormant. it was enlarged. it had nodules but nothing large enough to biopsy. it should not have been there in the first place.

and then, she almost wouldn't even touch it surgically because of the complications. most surgeons don't like to clean up after another surgeons mess. going in a 2nd time was risky, vocal chord paralyzing was a risk, not knowing if he'd damaged one before the risk of having to trach me was there this time around. damaged parathyroid glands was a risk not knowing if what the surgeon said was there or not or was stunned or damaged .

not to mention the railroad track scars. 'cuz that's what every 20 something woman wants.

she went in anyway. the surgery went great. she got everything she safely could . no trach, no parathyroid issues, the scars eventually faded.

back to the endo i go. more 3 hour waits in the dirty downtown office. the waiting room was chock full of obvious medicaid recipients.

now came the fun part of attempting to get in for my post surgical (I-131) radiation.

i was educated this time around, and had to be my own advocate.

i had to fight with the insurance to get radiation. i had to demand and threaten my way into inpatient radiation isolation which was standard protocol when i had my first surgery, and if I'd had the whole thyroid gland removed at that time wouldn't have been a fight but again my treatment was SUB-STANDARD!

Now when i finally was wanting the treatment i should have had the first time around, i had to fight the insurance. i had to fight the Dr. who didn't want to say it was medically necessary to be kept inpatient while i was radioactive .

Radioactive and at risk for exposing my 5 young children. i couldn't do at home isolation, we lived in the basement of my mom's house and shared 1 bathroom and I didn't even have a bedroom. we slept in the middle of the basement. I couldn't afford to go to a hotel for radiation isolation which is what the Dr. so kindly suggested. even if i could afford a hotel , doing so is putting unknowing people at risk for radiation exposure and against radiation safety protocol. (debates on this subject are a daily occurrence on the thyroid cancer support group)

my fight with the insurance nearly put me over the edge. i was severely hypothyroid. i ached in places i didn't know i had, my energy level was NON existent. i was depressed, i was nauseous, i had no appetite. i couldn't sleep. i couldn't function to take care of my family. honestly i was secretly suicidal. IT . WAS. THAT. BAD. it went on longer than necessary because of the fight with the insurance to cover inpatient isolation. i didn't have an alternative. i had to fight for the safety of my children.

finally it was the nuclear medicine Dr. that got me approved for isolation at the hospital. he was my savior.

I honestly think taking 2 kids in a stroller with me to the pre radiation appointment helped, because i didn't have a sitter, we discussed the need for inpatient isolation while one baby clung to me and a toddler talked incessantly in the stroller.

my tears combined with the threat of a malpractice law suit if my kids were exposed and the visual of kids that wouldn't take no for an answer on being held 24/7 , sold him on the need to deem it medically necessary.

he cared about patient care whether the insurance would penalize him or not. the first Dr. made less money if he referred for unnecessary items like radiation safety. now even private insurance doesn't want to cover inpatient radiation isolation. that's a different issue for another day, but LOW INCOME people being denied basic radiation safety protocols? ASININE.

during my ordeal there were cancer patients on my Thyroid cancer online support group from Canada. they had their own group too about dealing with cancer in a country with socialized medicine, about how to get around the system to get proper and timely treatment. At the time i wondered WHY alot of those patients that could afford to come to the US for treatment did. now i know. they couldn't cut through the bureaucracy of their system to get decent and timely treatment. if they could afford it they came here to the US.

My question ? if socialized medicine is so great? why would they need to do that? the answer is because it's not great. what about those that can't afford to go out of the country for private treatment? they go untreated. they get diagnosed too late. nothing is caught early, and minor cancers spread before they can be easily contained and treated.

it's sub-standard. wait times are horrific. if the Dr. could put you off, they will. they get paid more money to see you and not treat you in a timely manner whether they fix what ails you or not.

It sounds to me kinda like putting off my surgery for 2 years, kinda like my 3 hour wait times because i went to a medicaid approved endocrinologist. kinda like seeing a surgeon that didn't follow protocol the first time and take it all out when it was cancer, and he didn't even bother to inform me of it .

My cancer story is all about dragging out a cut and dried time tested treatment, into a long drawn out process. while I'm grateful for the treatment i received, i KNOW the process would have been faster if I'd had private insurance. i didn't have an option.

I'm greatful everyday being on medicaid was temporary for me, not a lifestyle choice.

With my current private insurance you can bet , now if my Dr. has crappy wait times i switch. and if i don't feel great about my surgeon or his abilities, i have the power to choose who i see. If i hate my endocrinologist now, or the ultrasound tech hits on me, i switch. i have that power.

sure i hate paying a out of pocket for my yearly whole body scan and hefty deductibles for my thyrogen shots (which aren't approved on medicaid. neither is cytomel )

I'm the first to admit paying for every co-pay and prescription and lab hurts our measly budget. (a family of 8 living on a mid-5 figure income, we are nearly poverty level). but the power to choose who i see, and who treats my issues in a timely manner makes up for that.

it's worth it to me to be able to shop around for a decent Dr. and not just go to an apathetic sub-standard dr. or surgeon.

I'm going to college now to be a nurse rather than a hairdresser (which i always thought would be fun), because someday if i need to or want to i can work at a place that will have to guarantee me private insurance. Because I've had cancer, private insurance companies can charge me an arm and a leg for insurance or deny me out of hand but i want the power to continue to choose who i see. i want to be able to pick my own dr. and to be my own advocate as needed. and i want health care to remain competitive. so if i have to work to get group insurance for myself and my family i will.

i prefer private insurance to anything the government is ever gonna hand out.

i don't want this health care reform bill. it will take away my power and put me right back where i was on medicaid. powerless, and waiting forever for treatment that shouldn't be such an ordeal.

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I've avoided this topic . i usually avoid other bloggers posts about their political agenda's and fanatical opinions. but I'm coming out against the new health care reform.

i admit I'm not as educated as i could be regarding this issue.

but i had cancer while i was on federal health care at the time and it SUCKED.

getting follow up and treatment since getting private insurance has been a night and day difference. I actually got to have a thyrogen induced scan. I had a Pet/Ct when there was question of recurrence. it was scheduled the next week, not months out.

now if i have a medical issue come up which unfortunately i have had recently, i get in within a reasonable amount of time to specialists. my tests are scheduled asap and if they are a month out, it's because MY SCHEDULE isn't free, not because the schedule at the testing place or my dr.'s schedule is overbooked.

i firmly believe there needs to be opportunities for Dr.s to be competitive , to want to provide the best in medical care. If you've ever been on welfare you can tell by the welfare system already in place , Dr.'s that accept mainly welfare recipients as patients don't care to be competitive, and they may not give the mostly timely or appropriate treatments. the wait time to get an appointment at those offices is often months out, wait times to see the Dr.s are ridiculous. quality of care is lacking. and you have no power. you go where they send you. and where you can get in.

I'm just sayin' this is my opinion and experience. I'm not looking for a debate.

© 2009 crazymamaof6