jlock & anyone else that can help. I'm in a bad place right now...

[djoyg]

I'm in a really bad place right now...no one has mentioned Medicaid, I don't even know who or where to contact for that. My Gyno is calling the outpatient surgery center to get a price quote on a lap. (I feel like I am a car that needs work) but says to expect in the thousands...I've just had an extremely painful weekend and rough night. Sitting in a car or chair worsens my pain, and gluten for punishment that I am, I took the kids to the movies and sat in traffic to get them to Chuck E Cheese this weekend. I am also having some mild dizziness as well, which is new. I was in so much pain in the middle of the night, if I didn't have 4 kids asleep in the house, I would have taken myself to the ER. I called my Social Security Rep in tears, I'm due to go see him later today to complete all the rest of the 'rushed' paperwork for Medicare and asked him how long he though 'rushed' paperwork realistically meant. He said he thought he might be able to get me Medicare within a week. I've put in a call to my Endocrinologist as well, when I saw her in mid May, before this pain started, she had run some blood work to see if I was starting menopause because I had been having strange periods and spotting. The pain and symptoms have been so unbearable I thought I may as well get her input and if my gyno won't due the Ca125 or the OvaSure, maybe should would. I have tried taking Norco 10/325 for the pain, it's like taking nothing. (stronger than vicoden)

I have always felt very comfortable with my gyno, and believe me, I DO NOT WANT this to be cancer, but he is saying he "doesn't see how it can be cancer when there is a clear ultrasound and clear ct scan". In the meantime, Squamous cell skin cancer is supposed to be a slow growing cancer, and I've had a new tumor show up and grow to just under the size of a marble in less than a week, an inch or so away from a tumor removed with clear margins and followed with chemo and am told this CAN'T happen as well. He said if there is cancer, a lap. would find it. Not finding it would mean the pain is likely caused by something irritating a nerve, the other suggestion the Neurologist had. I said, well at least then I would know I am not ignoring something vitally important that would end up affecting the lives of 4 children. I think I could find a way to adjust and deal with the pain if I KNEW the pain wasn't in any way connected to a potentially fatal condition. I could then just focus on the squamous cell cancer, count my blessings that I have such a wonderful doctor that isn't concerned with charging me, try to figure out why it has been so aggressive.

Here is what I don't understand. Keep in mind that this is coming from someone that needs to pay cash for care. Considering the OvaSure or the Ca125...The OvaSure includes the Ca125 as part of it's test and seems to have a much higher success rate of detecting ovca. In the 99% range. At this point, my concern in a test would be false negatives, not false positives. As I am already at the point of spending thousands for the lap...if this test doesn't have a problem with false negatives, meaning if I take the test and it's negative, wouldn't I be assured I do not have ovca? If I take the OvaSure and it's positive, go ahead with the lap. as planned?

Ok. writing this has helped. I was crying when I started, now I am not.

Thank you,

deb

[djoyg]

Thank you for the info.

I felt like a bad mom when I saw the condition of my kitchen and my kids through the eyes of my boyfriend! The piles of dishes they had created, broken glasses, food left out, sitting in their boxers in front of the tv!

I was really touched when I went into my endocrinologist on Tuesday and they did my bloodwork, including the OvaSure test, and didn't charge me anything. And when I went to see my doctor yesterday regarding my squamous cell cancer treatment and the new tumor growth, and he told me not to worry about paying, went over my care game plan and booked my next appointment, keeping in mind, there would probably be no payment then as well.

This has also made me realize that while I was very happy with and comfortable my ob/gyn for the delivery of my younger 2 boys, I will take this opportunity that if the OvaSure does come back positive/if I do proceed with further treatment with this in any way, I will find someone that specializes in treatment and not in delivering babies. While I can not expect him to lower his fees for me just because other doctors have been willing to, he was phoning me daily with concern prior to July 1 (when I was dropped from my insurance) and the calls stopped flat after July 1 even though the pain has continued to worsen and I have called to tell him as much.

I emailed a local gynocologist with a brief history (I have also already had vulvar squamous cell about 13 years ago, considered a gyn cancer and had seen a gynoc for that) and she had her assistant phone me back right away. She said the doctor didn't want me to wait until my Medicare came through and wanted me to contact the free clinic she volunteers for, to phone them and explain such. I doubted it would work. The receptionist was sympathetic, but explained that the appointment system is completely computerized and there was no way for her to put me in the system prior to the next available date, in mid October. I was still impressed that she responded so promptly and will write her a thank you note.

Thank you again,

deb

[momofsandj]

Contact Cancercare.org --- they provide financial assistance to people in  your situation and they may also have other resources that can help you -- your kids don't sound bad -- they sound like normal kids -- and buying dinner at the market is not what will make you a bad mom -- it if does we're probably all sunk.......hang in there and I hope you feel better and find some relief

[StillFighting]

I do not know if you are currently working or not, but with having 4 children

WOW, thats a job in and of itself.

[crecco]

I do not know if you are currently working or not, but with having 4 children it might be worth checking into. Your local Department of Human Resources. (or public aid of some form) Your Dr seems very willing to help you out so I am sure he would help you as needed to get them to help in any way.
  I wish you the best.
  Chris

[withe]

Suggestions.....get an advocate.... www.patientadvocate.org or 1-800-532-5274. Seek
other money....National Cancer Information Center maintains a data base of community and national resources 1-800-227-2345.

[djoyg]

I've tried taking Norco, which is like triple strength vicoden, and has helped me with other pain in the past...it does nothing. The Neurologist gave me Ultram to try...nothing. The Celebrex, shockingly, has helped. The only thing I can think of is that it is helping to reduce the inflamation somehow and that is somehow helping. But when I googled Celebrex & Cancer stuff showed up that said Celebrex has been known to help with cancer pain when standard stuff has failed. At this point it is just so hard to imagine this level of pain could be 'normal'. I figured I would call the Neurologist's office and ask to stop by and pick up a bunch of samples. Even though it doesn't get rid of it completely, it's a big enough difference that I don't sit around suffering, convinced I'm dying from the pain alone and making everyone around me miserable.
I will write you for assistance with the Medicare insurance stuff because I find the whole issue confusing. A couple of my doctors have warned me to stick to Medicare's original plan and not opt for one of the HMOs, because the standard of care is not as good and it is difficult to then opt out. But it sounds like you aren't talking about that but a secondary insurance.
I don't have any issues with my boyfriend...except when I am in so much pain I really don't have any patience for very much of anything. Being alone with him relaxes me, but I get very little opportunity with 4 boys and an ex that doesn't take them that often. I have been a bit self conscious of the belly, when it first started to become prominently noticeable, I think that he thought I needed to start to exercise that area. I knew it had to be something else, and told him I thought it was a medical sign of something. It really just never occurred to me that it was something gyno. I went and told my Endocrinologist. She thought that my body was in 'starvation mode', because I have such a poor appetite and I barely eat, that my body was holding on to everything and that I should try to force myself to eat more. This was before my belly was as swollen as it is now. If sex has ever become uncomfortable or painful, then we stop.
Thank you for everything, I'll be in touch soon

deb

[vegas2cr]

You gave great advice... I paid about the same for Vicodin as I have no medicare drug insurance... living out of the country I only keep medicare because I visit so often.. Your last statement should be written into every womans magazine in the world... thanks

[jlock]

I am sorry I didn't see the post until today and so far you have gotten some very good ifo.I see that you are already on SS disability and know understand how you are pushing for your part B benefits. I also have a secondary ins with Humana they pay even more than Medicare,and have included a RX on their plans as well.  Everyone pays the same amount for disability.....but you can also apply for lower costs if you have a very limited income.  if you go to the SS website you can find out more about it.  Also look into the other insurance.  I have a limited income so between Humana and medicare my monthly payment is 39.00 which is taken out of my monthly check. You can e-mail me for more info. I think a lapro is the best way to go especially if nothing is showing up on the other tests.  What pain meds are you on?? Call the Dr and tell him your problems with the celebrex.  The bad part is that most pain meds are very expensive.  I have also been through the individual manufacturers for my meds....the only problem with that is that it takes at least a month for that approval..and you need the Dr. to fill out part of the app which can take a while sometimes. Celebrex really isn't a great pain reliever anyway.  I use Percocet 10mg and MS contin for pain(with my Humana ins I pay 2.50 for each per month) However even when I had to pay out of pocket for the Percocet taking 2 a day the RX was only 76.00..thats alot cheaper and much better than Celebrex!!   I had alot of problems with my boyfriend before I was dx.  he demanded sex even if it hurt me....all he could do was apologize over and over when the dx came out as ovca!!  Try to remember than present behavior is usually an indicated of  the future.  I will keep you all inprayer.  ~~~Joanne...***@****

[djoyg]

The $4.00 prescription offers are for generics. Unfortunately, the really expensive ones are expensive because they don't have a generic. I'll see what I can do about trying to contact the drug companies directly, although I paid for a smaller quantity of the meds today. I also thought of checking to see if the dr had samples, explaining the cost/insurance & asking if I could stop by and beg for a ton of them.
Anyway, I took 3 of the kids with me and drove out to the dr to do the bloodwork for the ovasure test. I still can't believe she didn't charge me. I was in so much pain. My 12 year old and 9 year old had to help steady me along. There was so much traffic on the way back, we stopped for lunch. I took one of my 'golden pills', called such, because they cost more than gold...and it really did help. Not 100%, but a definite improvement so that I could get back into the car and get us home. When I got home I crashed out and slept for 3 hours. I'd say my pain was at a 9+, now it's about a 5 and I feel nearly human. Is it worthy about $5 a pill to be able to function? I guess when you're in that much pain you're willing to give anything, and believe me, I was.

Is it in any way diagnostic that Celebrex, an anitinflamitory has helped ease the pain when strong narcotics have failed? That's what I wonder.

Here is something else I wonder, and yes, I am probably babbling. Pain is not normal. Nor is it acceptable as just a 'Pain of unknown source'. I think so many doctors are so used to being paid by a third party (not the patient) and know that whatever they tell the customer, it doesn't matter, they will still get paid. By the insurance. If more people were paying doctors directly for their services, I wonder if they would demand that they be held accountable. As in, "I just came here and paid you a lot for answers and you aren't giving me any."  I recently read that some study sent out $20 checks to 3000 doctors with anonymous questionaires, asking questions such as "Will you send a patient for needless tests just to get rid of them", the doctors that answered said that a third of the tests that they ordered for patients were of no use to them. I wonder if people would demand more from their doctors if they felt the money that paid the doctor more. I know if I am paying cash for meds, I expect them to work to a certain extent, or I won't buy them.

[Gatsby]

Check with the larger chain stores (walmart, etc.) they offer prescriptions for just $4.00.  If that doesn't work, contact the drug company directly.  Many times, they will comp you the meds if you cannot afford them.  This is just plain crazy.  If you are sick and in pain, you should be taken care of.  Pain should never be an option!
Tascha

[djoyg]

I have already been receiving SS Disability since 1994 & have had medicare part A and qualified for medicare part B since 5 months after that. As I understand it, everyone's medicare cost is different, for part B, dependent upon when they qualified. As I have been insured by my ex husband's employer, I haven't needed it.  They cut me off with no notice, nothing in writing, no phone call, nothing. When already qualified for part B, they are supposed to get it started as of the next first of the month once you request it, but they are overwhelmed and I and I was told it realistically takes 2-3 months. The Rep that is helping me had me fill out special papers explaining my circumstances to get it started 'while' the papers wait in line to be processed, so that in effect, medicare might realistically start within a week. He says. I have his direct number, and he has been following up with me, which does seem unusual and kind for a government worker.
The current insurance that I had with my ex husband required that I pay 30% for most everything, so 20% is actually better for me. The only set back is that medicare doesn't cover prescriptions. Any coverage is better than no coverage.

Thank you Pam, I will look into those organizations.

Yes, Sharon, our healthcare system is whacked out. I cared for and supported my dear friend and her son while she slipped through the cracks of our system a couple of years ago as she fought hard and finally passed from breast cancer. I have 4 sons that rely on me and I hope having gone through that experience with her, and having been the strong one at that time/having that experience of fighting for her, will help see me through this challenge.

[Sharon2714]

dang i am so sorry the financial pressures of this this disease is what i will call "insult to injury" ... i pray all who read this will get the proper medical care that they deserve in our whacked out healthcare system (my sister has had cancer return on her twice and had numerous surgeries and i still dont think shes getting proper care but we live far from each other and her sons wont help her out)
Due to the priceyness she has lost her car to pay her doc and its just sick sick sick
sharon

[vegas2cr]

I have social security disability.... unless you are completely busted and I mean without a dime...medicare does NOT KICK IN FOR 24 MONTHS AND IT DOESN'T MATTER IF YOU HAVE CANCER...  Now SSI which is a supplemental for medicare alllows that you own nothing more than $2500 worth including your car.. this is here in Nevada   Medicaid in California is easier to get but you still have own nothing..

Also with my medicare which I don't use cause I live in Costa Rica... they deduct 96.00 a month for medicare part B  which is testing and doctors.... without a nothe suppolemental pollicy I would still have to pay 20% of my total bills...

For comparison in Costa Rica a full lap with doctors, anestheiologists, hospital overnight etc round the clock nurse was $1900.000

Good luck but dont let someone lead you to believe medicare is the answer as its not... even fast track medicare takes 3 to 6 months and again there is NO MEDICAL COVERAGE FOR 2 YEARS UNLESS YOU ARE TOTALLY DESTITUTE....

SORRY TO BEAR THIS UGLY NEWS...

[nyc lady]

There is an organization in the United States called the Chronic Disease Fund, they might be able to help, they are paying for my mothers treatment for Macular Degenerative Eye Disease....and also if there is cancer, contact the American Cancer Society, they might be able to  help as well.

Best of luck
Pam

[djoyg]

I am going through the unique circumstance that my insurance dropped me while I was in the midst of investigating this severe and constant left sided lower pelvic/ovarian pain. I have also been undergoing treatment for another cancer, squamous cell of the head and neck, in which another tumor appeared and has grown in the span of less than a week. I am blessed that my doctor for that has told me to continue with care and he is not concerned with charging me. My Endo said she will not charge me for the OvaSure test either, just have them bill me directly to run the test. I think the people at Social Security are being so accomadating and trying to rush things because I am already sick with something else and am in the midst of treatment.
The pain was so brutal yesterday, I was crying off and on all day. I was a horrible mother. I took the boys to the market and told them to choose their dinner, came home and collapsed in bed. I fell asleep for awhile, by boyfriend stopped by to check on me...I woke to him discovering my filthy boys had broken glasses, left piles of dirty dishes, spilled lemonade everywhere, left food out...of course they were all sitting in their boxers in front of the tv. My 12 year old hugged me and asked my boyfriend if he got me pregnant cause look at me.  I look about 6 months+. I don't think he'll ever stop by unannounced again...
The neurologist called back, he said he would call in a rx for celebrex, maybe it would help with the pain and swelling since narcotics weren't helping at all. The pharmacy called, the rx will be $300. They suggested I break it down into smaller amounts first, to see if it really helps. They were about to close, so I am going to pick it up this morning.
My ex is supposed to take the kids on Tuesdays. He's not going out of his way to be on time today. Told me he 'might' get them around 3ish...
Thank you for the well wishes,

deb.

[Kimchi]

I hear the stress you are under having to fork out big bucks for these treatments/test...I was told that it takes at least 6 months to get medicare approval...If you have a contact who can process your paperwork asap, then do it and get on their list...Hope your results come back negative too!!!

[djoyg]

I just heard back from my Endocrinologist. She told me to come in tomorrow and she'll do the OvaSure. Gyno said the lap. would be $3,800. at the outpatient surgery center and they likely couldn't schedule it within the week regardless. So. Fingers crossed, it will come back negative. And if it's positive, fingers crossed medicare will have kicked in by then and with that knowledge in hand I will be better able to proceed.