I'm just venting, super frustrated

[dixie_belle]

Last September I went thru the whole breast cancer thing. Had the partial mastectomy and radiation therapy. The oncologist put me on Tamoxifen. This is a drug that will help prevent the breast cancer from returning, but causes uterine cancer.

So this past August (you know, two months ago), I started spotting. Really? I haven't had a period for four years. Know what the first symptom of uterine cancer is? Spotting....naturally. So I panic, make an appointment with my local GYN. Now, he can't see me right away so I make an appointment for the following week. The morning of my appointment his office calls and says he is sick and can't see me, so the appointment is postponed until the following week. (Keeping count? two weeks now)

I go to see him and he does a biopsy. No signs of cancer but the tissue coming out is necrotic. He says it'll probably stop. The following week I have a terrible UTI. Have to go to the urgent care. (three weeks now).

A week later, I'm still bleeding. So now my GYN schedules an ultrasound, for the following week. It shows a thickening of my uterus and a possible polyp (and cancer is not eliminated, according to the results).

So now I go to a specialist in Bowling Green, KY. (And no one moves quickly.) No one is worried, except me.

Doctor in Bowling Green refuses to do a hysterectomy. Not because I need one, but because the insurance company will not approve it unless he does a D & C first. So he schedules me for a D & C in three weeks time. WHAT? That date would be October 16.

OK, so I go home and want a second opinion from another GYN. I call every doctor in the tri state area. I get a couple of responses: 1) they are not taking new patients, 2) they do not accept Anthem Blue Cross/Blue Shield, 3) they simply refuse to return my voice mails or 4) they cannot squeeze me into their schedule for 6 - 8 weeks. Even when I sobbingly told them on the phone I was concerned about bleeding to death between now and then. When I did get to speak with someone at a doctor's office, I was pretty hysterical.

So, after three really heavy bleeding days, we pack up and go to the emergency room in Owensboro, KY (about an hour away). They refused to call in a GYN because I wasn't in imminent danger of bleeding to death. But, if I did, be sure to come right on back. Again, WHAT?

So I have been paying for private insurance for 5 years and I can't get an appointment to save my life. I am just sitting and waiting on my D & C on the 16th (another two weeks from now). I'm severely depressed. And, not to be gross, but the stuff coming out smells like fish that's been left out in the sun.

Since when does the insurance company get to decide what care you receive? I'm freaking out.

Hubby must love me because for the past two months I've been a weepy, moody mess.

And the hospital where I had the ultra sound severely overcharged me (like $122 worth) according to my EOB from the insurance company, but they made me pay before they would do the scan. And, of course, when I called to ask about it, my calls went to voice mail every dang time and they never friggin called me back!!!!

Am I frustrated? OMG, you bet I am. Am I fearful that I have cancer and no one will listed? You bet.

I honestly don't know what else I can do.. I've seen my local OBG three times, been to the urgent care, had a biopsy, had an ultrasound, been to a specialist, been to the emergency room and no one seems to be in a hurry to find out the reason for the bleeding.

OK, I"ve vented my frustration. I'll just go sit and wait another 12 days until they'll do a D & C so they can tell me what is going on.

 

[paintponylvr]

Dixie-Belle -

OI, I, I, I .... have no idea how to respond. Nothing seems appropriate.

A part of me understands after I got so sick at Nationals 2012 (still having trouble keeping stuff down 2 weeks after coming home - affected my job and my taking care of/training our ponies and my home life, too.) The way I was treated was terrible - but nothing like you've described both in your previous cancer scare and in the current situation.

All I can say is "WOW". I have put you in my prayers and am sending you "CYBER HUGS"... Please keep us up to date on what happens with "this round" (ack - that sounds terrible).

 

[amysue]

I am truly at a loss for words here, as reading about your situation both angered and upset me. I feel for you my dear, im putting you in my prayers. I cannot imagine how hard this must be for you and your husband. I certainly would never wish anything bad on anybody...but ill bet if our fearless leader or a member of his family came down with a medical condition.....you know they would not be treated awfully like you are being treated, nor would they be left to wait and worry. That's healthcare reform for you.

 

[Sonya]

How awful, I'm so sorry. I wish I had some advice for something you could do but I'm at a loss. I am thinking of you and praying for you.

 

[shorthorsemom]

Dixiebelle.. I have been wondering where you were. I am at a loss for words.

I probably don't know enough to ease your frustrations, but if what I say helps just a tiny tad, then I am going to try... tell me to delete this if it doesn't help make you feel better...

It is not uncommon for the period to return after a long absence depending on your age. When it does come, it can come with a huge flow and it is very scary. The flow is your body trying its hardest to get rid of any tissue and by ultrasound the uterus can look thicker too. I assume they will take some cell cultures and then do the D&C to try to get you a new clean lining. The next stage could be to do a hysterectomy if they feel you need it, but not necessarily the only option.. Your body is shedding tissue and responding by bleeding like the dickens. I am hoping that you are just experiencing the "last hoorah" as my doctor called it of your period. Your doctor can usually take a blood test to see if you are really in menopause or not, but that might be more complicated due to the tamoxifen. I am not sure.

My friends 90 year old mom is experiencing uterine cancer right now. They are not in a hurry to rush her to a hysterectomy and she has many treatment options that are not so invasive.

I do know that the survival rate of breast cancer in women is far greater if they are a candidate for tamoxifen therapy. This drug suppresses estrogen and it is your best odds of beating the breast cancer. The risk of endometrial cancer is far less than the risk of the breast cancer returning and tamoxifen has saved many lives.

Whatever you do, don't stop the medication your doctors have given you unless they tell you too. There are also other drugs available similar to tamoxifen in case they switch you but the only other medication I know of is given to women who don't have the estrogen responding type of cancer.

I hope some of my words help you ...even if just a tiny bit make you feel better. I like when people give me information and hope and real stories.

Now, take a deep breath. You are a fighter, you are awesome.. you fight for yourself and your right to decent treatment. Question everything you are told and do research on the internet or ask us to help you find information on anything you are told and we can help arm you with questions for your doctors.

sincere best wishes Dixie belle. Thank you for coming here and sharing your story. I can help research some things if you need me too. I will check back. hugs.

 

[dixie_belle]

Oh, and did I mention that in the middle of all this drama someone got ahold of my credit card and started charging all sorts of stuff, online? Chase's fraud division called me to ask if I was making the charges. Um, no. I'm way too busy being hysterical. LOL

 

[shorthorsemom]

I thought of something... Ask to be put on the doctors "cancellation list" to see if you can get a sooner appointment. I have done this many times. Once was told 6 months later for an appointment and they called back the next day and I got one the same week I called due to a cancellation. You have to be willing to drop everything and go, but this has worked well for me.

just a thought.

Don't you just hate weekends when you want to talk to a doctor that only works Monday thru Friday.

sorry about the credit card drama. Not the distraction you were looking for I bet..

 

[vickie gee]

Dixiebelle, hope you soon get some good news. Please let us know how it is going. You know folks here are praying and rooting for you. Know that you are strong.

 

[Jill]

I'm so sorry to read this post!

Have you had any progress with appointments and answers? I hope so and am keeping you in my thoughts.

My best advice is that when you feel something might be wrong, you've got to keep pressing.

Anthem is good good insurance. That's what I have, too . It may be it's more standardly accepted in my region, but here it's about like an AmEx black card. I pay crazy for it as an insulin dependent, cancer surviving, retina issue having patient but the alternative is too scary to me. You've got great insurance, but doctors are stretched so thin and it's hard to not be political and call out the reason everyone of us probably has family members and/or friends feeling frustration over getting appointments, higher costs for medicines, longer waits, etc.

Keeping you in my thoughts and prayers and hoping you are getting some answers and that they are reassuring.

 

[REO]

{{{{{{HUGS}}}}}}

 

[dixie_belle]

Well, Thursday is the day. I will have my D & C and hysteroscopy in Bowling Green. I'm not overly concerned about the actual procedure as it seems pretty straight forward (and I'll be asleep, anyway), but I will be quite anxious to see the results from the pathologist. I mean, it's not normal to have a period for two solid months. I'm concerned that they'll scrape everything out and it'll just come back. Then I'll be in exactly the same spot. Sigh.

I've been a real mess to live with these past two months, just because I don't know what is going on and the waiting is so very hard. We'll just see what happens after Thursday's procedure.

 

[candycar]

Sending many healing thoughts your way. Our hearts are on your side. ((HUGS))

 

[user 45739]

Dixie_Belle, though we don't know each other, and I'm very new to the forum, I just want to let you know I care and will be praying for you and sending you my best healing thoughts.

Blessings and Light,

Gayle

 

[lkblazin]

Iam very sorry and hope you start to feel better soon. There is not much I can say that will help you feel better but you are in my thoughts along with all my co workers. I was furious about the way the hospital has treated you, so I was on a rampage when I read this. I will as I am sure others will be waiting for the results. I hope you feel better and I am so so sorry. {{{{{{{Hugs}}}}}}}}}}}

 

[Sonya]

Hope everything went well. Prayers for a speedy recovery and no complications.

 

[dixie_belle]

Procedure went well yesterday. Apparently, what the ultrasound showed as thickening of my uterus was, in fact, a GIANT polyp. Who knew? So he removed that, scraped everything else and suctioned it out. I have to make an appointment to revisit with him at the end of next week and we will have the results from the pathologist at that time. So I feel a little better today (mentally). And I'm not bleeding as much today so that's a good sign. I think it odd that with everything I've had done to this point, no one discovered this growth, especially since the doctor referred to it as "giant". It's just a waiting game now to see what the pathologist comes up with.

 

[REO]

I came here to check on you. I'm so glad it's done and a reason was found and dealt with. I myself have suffered for years with what you recently have. 45 days at a time..... time after time. It's no fun. I hope you feel better now, I'm thinking of you {{{{Hugs}}}}

 

[user 45739]

Dixie_Belle, I'm so glad the procedure went well. I hope the results turn out to be something that can be easily remedied, and that you are feeling much better very soon.

 

[shorthorsemom]

I just stopped by to see if you had posted and am so glad you did.

Best wishes on the pathology. Glad you are over hurdle number one and feeling better!

take care

 

[lkblazin]

Very pleased the procedure went well and that it came up with a result that could be dealt with. Feel better soon, not just mentally but physically as well