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Darkened
Posts: 5
Joined: Dec 2012

A few months ago I started feeling like I was coming down with the flu and was having stabbing pains that would come and go. I never got the flu, never got a fever and the pains got bad enough that I ended up in the ER. I was expecting to have something like a kidney infection... drs ran blood work that came back all messed up but they said no infection and did a CT scan that showed tons of cysts on both ovaries and a lesion on my uterus. They said I need more tests to figure out what the lesion is and threw around the possibility of if being cancer. I have no insurance so dealing with county hospitals so this was end of Oct and they still havent scheduled any of the tests. I am so exhausted I can barely do anything but the dr said this isnt a symptom that I must have something else wrong with me too.

so these are my questions:

before anyone was diagnosed did were they extremely tired (like how you feel with the flu)?

did anyone have a lesion show up and it was later confirmed to be cancer?

did anyone else have tons of ovarian cysts as well as uterine problems?

I have read that bleeding is a symptom... could much lighter periods also be a symptom?

did anyone have any irregularities in their blood work before they were diagnosed?

any help or info would be much appreciated as I am on my own and just sitting here feeling horrible with no where to go for help (ER will just send me home again and tell me to wait for my appointments that this isnt an emergency)...

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry you're in this situation, but keep on trying until you find THE ANSWER YOU WANT AND NEED. At this point it could be anything, but surely more testing will help. I do have insurance and can only guess they're putting you on the waiting list without insurance...ya think?

You know your body better then anyone else, and if you feel it's not normal keep pushing for some diagnosis. Having this started in October and still no where, doesn't sound good to me. Have you tried your general doc or better yet your OB???? Try that route.

You ask how I felt prior to diagnosis -- GREAT!!! I had some vaginal "pinkish spotting" and NO cramps. Went to my OB who had me take a vaginal ultrasound, then to D&C as he thought I had just thicking of the uterine wall (not full blown menopause yet). Found fibroid cysts and did pathology which came back cancer.

Never had any blood work prior to diagnosis, but after yes and it showed a high tumor marker called CA125 which use for uterine/ovarian.

In your mind this is an emergency, so my suggestion, get on the horn and call your doctor.

Hope this was helpful and plse come back and ask more questions...we're here to support and guide.

Jan

imackie48
Posts: 90
Joined: Nov 2011

Sorry to hear your situation, what STATE do you live in? I know in my State of CT, people with no.insurance have just as good care as an someone who is insuranced.
I hope you get some results from your doctor soon.
Irene

beila
Posts: 97
Joined: Sep 2012

I am an emergency physician currently on medical leave during treatment for uterine cancer.

Before I returned to Canada, where EVERYONE has medical insurance, I worked for 15 years in County Hospital Emergency departments in New York City (Bellevue) and The San Francisco area.

I know what it is like...no insurance...the only care you get is County Hospital Emergency, unless you can afford to pay for family MD/ObGyn on your own, which I assume you cannot.
YOU HAVE TO WORK THE SYSTEM.....because the system is very bad for the millions of Americans who are un-insured

What I would suggest is you return to the ER saying your symptoms are worse....more fatigue and abdominal pains.
If you go when it is not too busy (???when is that???....perhaps early morning, when the night shift hands over to the morning shift of doctors) perhaps you will be lucky enough to get a doctor starting his/her shift with some time and compassion enough to take you seriously.

THE KEY IS YOU HAVE TO SAY YOU ARE FEELING WORSE, which it sounds like you are.
I too would like to know what state you live in.

I would like to help you, as I have been on both sides of the coin, and am extremely familiar with the County Hospital ER health care, often the only recourse to Americans with no medical insurance.

If you get no satisfaction, go to another County Hospital....again I could help you more if I knew what state you are in and what hospitals are County

Good Luck

Beila

Darkened
Posts: 5
Joined: Dec 2012

I am in southern florida so have been going to Jackson Memorial Hospital and their clinics. My clinic card actually just expired on the 4th of Dec... I was told on the phone that they probably didnt schedule any of my appointments because they saw my card would be expiring soon and they want to make sure I re qualify so monday I have to go down there and am crossing my fingers that I get my card or I will not be able to get the tests at all. Hospital is about 12 miles from me but closet county hospital and I have no car so have to take buses and the train there.

this is some of what my CT results are (I picked them up because the drs never tell you everything it says, have had drs flat out lie to me about results in the past)

Hypodense lesion seen within the lower uterine segment which mesures 2.3 x 2.8 cm probably represents degenerating/necrotic fibroid or less favored necrotic carcinoma. Dedicated GYN ultrasound recommended. The uterus is retroverted. Bilateral adnexa demonstrate follicular cysts. The right adnexa measures 2.2 x 3 cm and contains multiple cysts. The left adnexa measures 2.4 x 3.2 cm and contains a few cysts.

Narrowing of the disc spaces of L4-L5 and L5 S1 is seen with vacuum phenomenon. Levoscoliosis of the lumbar spine.

Trace umbilical hernia.

Diverticulosis is noted but not acute.

Liver: decreased attenuation of the right posterior lobe.

Urinary bladder: mild circumferential urinary bladder wall thickening. Bladder is incompletely distended.

Lung Bases: Linear densities seen in the lingula, representative of a linear atelectasis.

this is the summed up results from just the 1 test... I am 32 btw...
I have been so tired and short of breath and having stabbing pains and just feel horrible.

plantlady2012
Posts: 49
Joined: Dec 2012

I am so sorry you are having to deal with all of this, and especially at such a young age! Have you considered applying for disability? If your fatigue and pains are making you unable to work full time, then perhaps you would qualify for Social Security Disability, which should eventually qualify you for Medicaid. Some people get it fairly quickly, and some have to fight for it. But it might be worth checking into with the Social Security office.

Darkened
Posts: 5
Joined: Dec 2012

I have been denied 3 times... I had a bad fall 2 yrs ago and was having other problems before this so I had tried... might try reapplying again once I have an actual diagnosis to list. I just feel so beaten down by life. Just lost the last of my family back in June (my grandmother died, had been taking care of her for 8 months) and then back in 2009 I lost my mom, she was only 52. I just dont feel like I have any fight left in me. I have been working part time but its not enough to cover all my bills and I might be losing this job in Jan (I will find out jan 15th) and even if I keep it I only have enough money to keep me going for a yr and that is only including basic bills and not extra expenses like being sick. I am all alone. I honestly just feel like giving up.

beila
Posts: 97
Joined: Sep 2012

Disability Sounds like a good idea, but you would need a doctor to fill out the forms

To interpret for you your CT: the adnexal cysts are probably NOT cancer
The uterine lesion probably is not as well.....more likely to be fibroid, but definitely needs to be checked..the Radiologist is recommending specialized ULTRASOUND for this.....If you go to ER complaining of INCREASED PELVIC PAIN they could easily order a transvaginal ultrasound right there as part of your ER visit...If I were your ER doc, that is what I would do.

Some Questions for you:
Cant you get Insurance, HMO, Kaiser, etc so you can have your own MD?
Can you ask for a Social Service consult to help you with this when you are next in the ER?
Cant you get someone to drive you to the hospital?

Jackson Memorial is a teaching hospital, as far as I know, and therefore, should have good doctors.

Best of luck,
Beila

beila
Posts: 97
Joined: Sep 2012

Disability Sounds like a good idea, but you would need a doctor to fill out the forms

To interpret for you your CT: the adnexal cysts are probably NOT cancer
The uterine lesion probably is not as well.....more likely to be fibroid, but definitely needs to be checked..the Radiologist is recommending specialized ULTRASOUND for this.....If you go to ER complaining of INCREASED PELVIC PAIN they could easily order a transvaginal ultrasound right there as part of your ER visit...If I were your ER doc, that is what I would do.

Some Questions for you:
Cant you get Insurance, HMO, Kaiser, etc so you can have your own MD?
Can you ask for a Social Service consult to help you with this when you are next in the ER?
Cant you get someone to drive you to the hospital?

Jackson Memorial is a teaching hospital, as far as I know, and therefore, should have good doctors.

Best of luck,
Beila

plantlady2012
Posts: 49
Joined: Dec 2012

Ask them about Charity Care, too. I think it is a nationwide program, but I have seen it offered in at least two different states. Hospitals can write your bills off with this program.

plantlady2012
Posts: 49
Joined: Dec 2012

Actually, in the US, you can file your own disability forms, but they will eventually contact your doctors to substantiate your claim, before they approve it. Have you been telling doctors if this has impacted your ability to work? Have they noted it on your chart?

plantlady2012
Posts: 49
Joined: Dec 2012

I like Beila's idea of asking for a social service consult next time you are in ER. The Social Service worker there should know what financial assistance programs are available there.

plantlady2012
Posts: 49
Joined: Dec 2012

Have you looked for an attorney who specializes in trying to help people get disability payments? I don't know how it is in Florida, but in my state, they will often wait for payment until you actually receive your lump sum benefits. Can't hurt to ask! If you are having trouble working, due to illness, but keep getting denied benefits, maybe your doctors haven't been noting your work problems due to illness in their records. If you explain all this to your doctor, he might be able to help you.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Since you have a wealth of experience being a physician, would you mind answering a question? What do you think about the option of US having their own health care system? Not quite sure how Canada's system works, but curious as to hear what you think might be the direction for our citizens.

Any socialistic type health care systems tends to scare a huge number of people and I'm one of them. When they tell us it'll cover "pre-existing" I love that thought, but then wonder what more it will cost us. All I've seen is my "individual" family health care premiums go up approx 20% per year, plus add on my huge deductible which has to be met every year. Feel like all I do is spend more money for my health care, as I watch my income continue to go down.

Appreciate any input you feel comfortable relaying.

Thanks
Jan

plantlady2012
Posts: 49
Joined: Dec 2012

Good questions, jazzy1! This topic might deserve it's own thread!

beila
Posts: 97
Joined: Sep 2012

I guess our system could be described as "socialistic"
Why does that scare you?

IT IS FANTASTIC

It is socialistic, because our income tax pays for it and EVERYONE IS COVERED, RICH OR POOR, SICK OR WELL, YOUNG OR OLD.
No such thing as "pre existing' issues, if you are a Canadian citizen or Permanent Resident, you are covered, PERIOD.

I have been a doctor in the USA for 20 years and in Canada for 15, and it is absolutely appalling what goes on in the USA.
In Canada there are no premiums etc.....The system is administered provincially....you get a "medicare card" (no similarity to the word "medicare" in the US) You present it at the hospital, your MD office, Radiology Dept, blood lab, etc etc and that is it!!!
You dont pay a thing.....it is payed for by the Provincial Government via funds from collective income tax

Here the rich dont get away with quite as much income tax evasion as they do in the USA, so the funds are there.

Now that I unfortunately am a patient, and back in Canada (for the past 12 years), thank God I dont have to worry about medical coverage

There is a huge amount propaganda against the Canadian Health Care System perpetrated by special interests in the US, particularly the Insurance Companies.

What is it that you fear from the word "socialized" medicine?

Beila

plantlady2012
Posts: 49
Joined: Dec 2012

Beila, I am SO happy to see your reply about the state of US Medical care! I think it is an absolute travesty that we have citizens who can't get medical care for lack of money! That is a moral injustice SO deep, I don't even have the words to express my outrage and indignation at it! We spend SO much more than ANY other nation on the planet for Military, we could probably cut it in half and still spend a lot more than any other nation. We let MAJOR employers get away with hiring thousands upon thousands of PART TIME workers, just to skirt having to give them any benefits, fattening their corporate profits, and shoving the cost of these exploited workers' medical care onto the tax payers. I am deeply disappointed that the current plan for national medical insurance is so costly to individuals, and even more disappointed that it has a punitive element.

And people at the bottom of the food chain, who work long, hard hours for low pay, are made to feel like failures for not having money for medical care. WHAT is wrong with this picture??

plantlady2012
Posts: 49
Joined: Dec 2012

The reason the middle-class fears "socialized medicine" so much is that our middle class is having a hard time hanging on to its middle-class status. Costs are rising faster than their incomes, especially in medical care and education. They fear the burden this will place on them, financially, and with good reason. And with education costs going through the roof, the middle class is finding it almost impossible to help their children secure a middle-class future. We have a lot of social problems to solve!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Possibly you could call our future health care system -- Obamacare or Universal health care. Basically, it's a full-blown dream of free, universal healthcare funded thru the US tax system. I'm not totally in agreement with our government making decision about who is to receive care and who is not.

Who will pay for this system? Our taxes going up is the answer I'm reading.

Two sides to every story and I'm in the middle on it all, as really interesting to see how this universal health care is working in other countries. Have a friend from Russia who has lived in US for over 25 years, and has family still in Russia. Russia offers universal health care and she told me, when she was diagnosed with stage 3 breast cancer in US, 14 years ago, and if she was still living in Russia, she would have been on a waiting list for treatments. But...since in US she was seen by a specialist right away and started treatments soon after. To think one should have to be at the mercy of the government to decide who does/doesn't get care right away, truly scares me.

So much up in the air on the US system, but great to read the perspective of a practicing doctor who has worked in US and Canada.

Thanks Beila for your input....
Jan

beila
Posts: 97
Joined: Sep 2012

Canada is as far from Russia in every way shape and form as the US is!!!!!!!!

Contrary to the US insurance companies propaganda, there is NO WAIT for treatment of serious illness in Canada.....unlike those with no insurance in the US, as evidenced by our collegue on this board.

There is a wait for conditions that are inconvenient, such as knee replacement for arthritis in the knee

The government in Canada does not decide anything re who and when, unlike the insurance companies in the USA
The government pays....that's it
The wait for eg knee surgery is due to other factors of supply and demand....no system is perfect, but Canada is fantastic, compared to the appalling conditions in the USA ....it is mostly the lower middle class and working poor who are unable to obtain health care in the US...I know 1st hand as I treated them for 15 years in the ER of County Hospitals....the only place they will not get turned away, and they pay what they can (sliding scale)
Of course treating non emergent cases in the Emergency Dept hugely raises the costs of health care in the US

THE USA IS THE ONLY NON 3RD WORLD COUNTRY IN THE WORLD WITHOUT UNIVERSAL HEALTH CARE FOR ITS PEOPLE.....and it is mostly due to the big money and power of special interest groups, specifically Insurance companies and the propaganda people believe

Beila

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Thanks for your input! Nice to read your take of other countries health care. Do agree, the US has a ways to go to keep up with a country such as Canada.

My healthcare costs have gone up so much (as many others), plus my deductible is huge, so all I feel is more money out of my pocket for health care premiums and medical bills. Hoping for some relief, as trying to be optimistic our gov't gets moving in the right direction soon.

Ciao!
Jan

plantlady2012
Posts: 49
Joined: Dec 2012

It is pretty tough to be alone. Is there any kind of organization or group you might be interested in, that you could join for some moral support? A church group, for instance, might help fill in for the lack of close family, for moral support! But maybe even a club of some type would help.

Darkened
Posts: 5
Joined: Dec 2012

I was pretty much convinced it wasnt anything serious until recently... Mostly its just how badly I am feeling, how tired. I see all I was able to do just a few months ago that I can no longer do and I keep telling myself I just need to get more rest or I will feel better tomorrow but just keep feeling worse so now I am starting to think the worst. At this point all I want to know is what is wrong with me because I dont know how long I can go on like this. I was finally able to drag myself to the grocery store today, 1st time in 2 weeks and I didnt even think I would make it home. Factor in how cancer runs in my family and the horrible luck I have... if I am actually able to get these tests and it isnt cancer then its back to the drawing board and its so hard to get any appointments or tests and you wait months in between and in the mean time you get sicker and money runs out. Its starting to scare me how run down I feel and seeing how I have gone downhill in the past few months and worrying how I will be a few months in the future, knowing I wont have anyone there to help me. I feel like I need to work on getting well now but have no idea what else to try.

beila
Posts: 97
Joined: Sep 2012

I would be curious what your blood tests showed
I think you said they were abnormal
Did they check your THYROID blood tests?

There is a very good chance this is NOT cancer, but it could be something else medical (plus some Depression and social isolation)

This should all be diagnosed with one or 2 clinic visits

If at any time you feel unable to function, tell the ER doc you are so much worse, and cannot go home, and need to stay in hospital.
They should take this seriously

Also very important to see social worker in the ER

Beila

plantlady2012
Posts: 49
Joined: Dec 2012

Seriously, keep trying to get on disability. An attorney who specializes in disability benefits will probably be found in your phone book. If you cannot work full time due to illness, you need this program! If the first attorney you call wants money up front, and won't work with you on that, then call another attorney. And another, if necessary!

Documenting your condition in your medical records is very important. You need to talk to your doctor about how this is impacting your ability to work, and make sure he writes it down on your chart. Mention it EVERY time, at EVERY doctor or hospital visit, and make sure it gets written down in your chart EVERY time!

With health problems, and losing your grandmother recently, you might even be depressed, which might be contributing to your fatigue. Depression can be treated with medication. Talk to your doctor about depression, if you think this might apply to you.

I did not have any feelings of fatigue or being run down prior to being diagnosed with cancer. I was in poor condition, but that was nothing new to me, and I felt no new symptoms of any kind before my cancer diagnosis. It was found in a routine exam. You might very well NOT have cancer, but you clearly have SOME kind of medical problem. Don't give up, keep trying to find the medical care you need! A social worker at the hospital or a disability attorney might be able to help you.

plantlady2012
Posts: 49
Joined: Dec 2012

Oh, and don't foget to follow Beila's excellent advice on getting back to ER!

And while you are there, tell THEM how this is impacting your ability to work, and make sure they write it on your chart!

Darkened
Posts: 5
Joined: Dec 2012

had thyroid run a couple yr ago but it was ok but in the blood work they are ordering I think they are running again along with rerunning a test for lupus because I was borderline positive and then negative. My SED rate and c-reactive is always high (over a few yrs) no one knows why. My white count is usually high but the dr said because my neutrophils arent high it means no infection... other things that are currently high hemacrit, abs neutrophil, abs lymohocyte and low monocytes. I had asked my dr about leukemia also because that is what killed my cousin and they said no to that and no to infection and no to the lesion just being a cyst because they said a cyst would show up clear.

I started having health problems about 4 yrs ago... started seeing a dr about 3 1/2 yrs ago and they tell you its one thing and then it isnt. 1st they said it was a heart problem and I was going to a heart failure clinic now they say my heart is fine eexcept my pulse is always over 100 and often goes over 180 and makes me feel like I am dying. No one knows why and they have given up on trying to find out why. I cant take the heart meds that lower my pulse a little because they also lowered my blood pressure which is normal so I just live with it. Then they thought it was lupus because I tested borderline positive then they said no and said I have fibro and now they are saying no to fibro and now the pains and tiredness which are new symptoms started and they say that is from the lesion and they dont know what the lesion is and its only causing my pain and nothing else and they dont know what is wrong with me. In the meantime I just keep getting sicker.

When you are dealing with county hospital clinics you have to wait months for an appointment to see any dr or get any test and then wait again to go back and every yr your card expires and you have to renew and then I am paying on a sliding scale for every visit. You spend all day at the hospital or clinic no matter what time your appointment is and then a dr comes in and spends about 5 mins with you and you dont get anywhere.

this last time with the disability was a court hearing and I had a lawyer so at this point I have to start all over like I have never filed and was told they really will only consider new records but since then I have only seen a dr once and the er once and you need to have a diagnosis to list on the forms and as of now I dont so would be an automatic denial so I am waiting.

beila
Posts: 97
Joined: Sep 2012

JUST KEEP GOING BACK TO THE ER

At least say your lower abdominal pain is worse and then they can do the transvaginal ultrasound in the ER and at least get that out of the way....to image that lesion in your uterus.

....plus the Social Service consult
and
As one of the other ladies has stressed, make sure the MD writes on the chart that your medical condition makes you extremely weak and fatigued and unable to work,( even though there is not yet a definitive diagnosis)

and as last resort, if you really feel to ill to function, tell the MD you cannot go home and need to be admitted to hospital...worth a try...and everything will get diagnosed FAST under hospital admission

Beila

NorahS
Posts: 93
Joined: Dec 2012

First off, I'm new here....but have been lurking for a few months. I will make a more comprehensive introductory post when time permits in the coming weeks.

Most importantly, Darkened - I'm so sorry to read of your troubles getting a diagnosis and medical care. It must be very discouraging, but I hope you will make a list of action items that have been recommended in this thread and then pick one to start in on next week. (Sometimes breaking a daunting task into smaller parts (babysteps) makes it easier.)

If you are able to, please think about coming back to this thread regularly (at least weekly?) and sharing each small success that you've had getting the diagnosis and medical care that you need. We care here. Never doubt that.

Finally, what Beila has posted about health care in Canada is correct. I live on the west coast of Canada and worked for a number of years in health care administration. If you are interested in an overview of Canada health care, Wikipedia's article on "Health Care in Canada" is a good place to start.

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