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Just Diagnosed and Nervous

LC814's picture
LC814
Posts: 18
Joined: Aug 2012

I was just diagnosed 2 weeks ago with DCIS..... I never felt a lump, and was sent for my first mammogram. Within 2 weeks, my world as I knew it has been tossed upside down and inside out. I went from a baseline Mammogram, to an ultra sound, followed by a Core Biopsy. a week later I get a call from my doctor stating that it's DCIS. 2 days later I'm at the Surgeon and Oncologist's office,and on Tuesday,I will be undergoing a Lumpectomy. my surgeon didn't give much details as to what to expect, or what to wear to the hospital.. and the worst part is my Ins.Co. is trying to refuse coverage because I'm too young(34), yet the person on the phone had nothing to say when I asked her, "since when does cancer care what age you are?" My Surgeon and Oncologist said I will have some sort of Device put in, just incase my Margins dont come back Clear, so they will begin Radiation therapy.

So if anyone has any advice, I would greatly appreciate it.... As I'm Nervous and Scared...

""

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear LC814,

Ask your doctor to call your Insurance Company. You are not to young, breast cancer can happen at any age, we have a poster who is very young. Your Insurance company should be reported to the department in your state who deal with this sort of thing. I am very sorry that you have to deal with such an uncaring company.

There is a wonderful book, if you can borrow it from your library it would be helpful. The book is "Dr. Susan Love Breast Book" and it does offer the basics in understanding this awful disease. Or you can try her web page, copy and paste the following.

http://www.dslrf.org/breastcancer/content.asp?L2=3&SID=153

There are ladies who can answer your questions on DCIS better than I can. This one will inform you on DCIS

http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&L4=3&SID=164

When I had a lumpectomy I wore a very loose blouse so I would not have any problems if I could not wear my bra. I remember wearing my bra and I went back to work the next day. It really isn't so bad.

I know that from the moment we learn that our worse nightmare might come true, we are held in a vice of fear. It will get better that I can state having going through it all. Though it doesn't help a lot when we begin this journey,

Wishing you the best,

Doris

MAJW
Posts: 2515
Joined: May 2009

I would be furious with your insurance company! I don't think they can refuse to pay for treatment because of your age....that's BS and is discriminating....you're physician's office can go to bat for you on this matter....I know it's bad enough having been told you have cancer,
but having to deal with this crap can send you over the edge.....again have your physician's office deal with this..they always have personnel who deal with insurance companies.....

When I had my lumpectomy, it was at 1:00 PM...I was home resting comfortably at 4 :30....just take your pain meds on schedule....don't allow pain or discomfort to get a jump on you.....it's harder to get under control.....I had what I call discomfort more than pain....the incision to remove lymph nodes bothered me more than the lumpectomy incision....also I was "super glued"... No sutures..loved that! ..I took button down the front pajamas with me and wore them home...didn't want to get undressed again and into them once home....worked out well for me....

Wishing you well..please continue to post...you have found a wonderful group of women, who have first hand experience ,are caring and encouraging...
Hugs, Nancy

LC814's picture
LC814
Posts: 18
Joined: Aug 2012

Thank you both, it's greatly appreciated.... My worst fear became a living nightmare the moment i recieved that phone call.... My Ins. Co, will eventually accept im sure. I'm thankful to have this network of people who know what I'm going through.... my journey is just beginning and I dont know what may be ahead for me, but I wont give up this fight....
The hardest part so far since finding out and fighting with my Ins. Co, was having to tell and explain to my two daughters that I have Breast Cancer. My 8 year old just looked at me like Ok, mom you will get over it... (as if i had the flu) my 11 year old paused and then looked me straight in the eyes and said " Mom, are you going to die?!" that just broke my heart, and stole my breath.... so I assured her, we will take it one day at a time, and I wasn't going anywhere anytime soon, and that I will be there on her first day of Middle school. (unfortunately falls 2 days after surgery)

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Age has nothing to do with anything! I was 33 when I was first diagnosed and had Stage 3A (large invasive tumor that had spread to 4 nodes). I am still fighting (mets 2009) 25 years later but doing well.

I have never heard of an insurance company denying coverage because of age. I would put my appeal in writing and begin a paper trail asap!

Dwwilburn's picture
Dwwilburn
Posts: 19
Joined: May 2011

Hang in there! When I had my lumpectomy in Fall 2010, I went in and as best I remember I just work comfortable clothing. They of course put you in the hospital garb, but I went home that evening, so my clothes were something that I didn't need a bra. I think I wore a button shirt so I could do that. If you are on Facebook, I put long winded notes on there and described everything I went through. My name is Dianne Wilburn.
You are way young. I was 46 when diagnosed. Sounds like the good part is that your cancer must have been caught really early.

Yeah, it does turn your WORLD totally upside down.

When you get home, follow their advice and don't do too much. I know it will be hard with kids. Don't be afraid to ask for help.

Dianne

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

how scared I was. It is something that we all go through.

When I had my lumpectomy I wore the top of my pj's and no bra. That was the suggestion I got from the surgery center and it was perfect. I took the pain meds they gave me an slept for almost a whole day, they really knocked me out. I had more of an issue with the drain than anything else. After 2 days they took it out because I didn't need it.

Just take one step at a time and you will make it through just fine. I will keep you in my thoughts.
We are here for you anytime you need.

Hugs,
Georgia

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

Each surgeon does things a little different. I had a lumpectomy in Jan 2009 (I'm old ;-) and had no drain. So take in what you learn here--I've gotten some great advice but listen to what *your* doctor says. And if the two things don't line up--ask questions. Sometimes it helps to have someone with you to hear everything, or take a tape recorder or a notebook. You are on a roller coaster and get a lot of information very fast. It's not unusual to miss some of it.

Maureen

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

this news is unsettling even to the strongest of the strongest. I am glad that you are being seen so quickly by the MO (medical oncologist). Surgery is scary. But if you can think of it as taking a crucial step in killing this beast, hopefully it will keep you sane as that time nears.

I remember the day of learning I had breast cancer (just a year ago) too. I can only imagine what you are feeling. To have your insurance company DECIDE if they are going to cover this is just plain ridiculous. They will come to their senses. I wonder if the person you spoke to was reading something that was for her eyes only. I mean, there are "scenarios" whereby the insurance company may question stuff and the rep is reading that out loud rather than getting facts straight FIRST. I can't believe an insurance can discriminate on a persons age when cancer does not.

I pray that this mess gets straightened out YESTERDAY.

My heart breaks that you had to tell your little girls about this. I found this site http://parentingwithcancer.com/2011/04/25/how-do-i-tell-my-kids-i-have-cancer-2/ and it might offer you and your babies some information on how to cope. How is your husband coping?

Prayers and gentle hugs sent your way

Mary

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

I was dx at 32 and didn't have any issues with my insurance.

Insurance companies suck! But let me tell you, you should NOT have to go through this. You should be covered!!! Why will they exclude cancer? BS! I hope this gets straighten out for you ASAP. Please have your facility contact them for you and get some answers. You need treatment and they need to cover the cost, this is why you are paying for insurance.

I had a lumpectomy and it was relatively an easy surgery. You are done and sent home afterwards. They may do the wires before surgery, depending on how small your tumor is. I suggest you ask your Dr. because this can freak you out a little, especially without knowing what to expect (it wasn't bad!). Ask as many questions as possible before taking any step so you don't become anxious. You'll do great.

I know this can be pretty scary - we all know this road very well. But please know you'll be OK. You're not alone.

I hope your insurance cooperates like they should and you have a smooth recovery.

Good luck!

LC814's picture
LC814
Posts: 18
Joined: Aug 2012

Thank you my pink sisters,
the latest update with my Insurance Company, after 2 hours of being bounced around my husband finally got them to approve the surgery. He is handling so far, I dont think it really hit him yet.
Meanwhile, I got an unexpected phone call from my surgeon that she wanted another Mammogram and MRI done..... She said The MRI was just to be sure she saw everything.... within a few hours after my Mammo and MRI, My world got turned upside down again.... my lump which was small to begin with is not so small anymore and has company, they found two more lumps. My Oncologist said she would like me to start Cytoxan 25mg, right after surgery..... I don't know anyone who took an oral Chemo before, so I have no idea what to expect, or if I should start directly after surgery??

With less then 24 hrs. to surgery, I'm becoming really nervous.... not so much as the operation it self, but afterwards..... what this battle against this beast has instore for me. My mind is racing with the hellish "WHAT IF?"

Thank You all for the advice and support!!!

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi again,

I am so sorry that you have to go through more testing. Glad that your husband made your insurance company see the light. I would still try to find a state agency that deals with insurance and report them. You might have more trouble down the road with them. Nip them in the bud and this will give your husband something positive to work on.

Years ago, I did oral cytoxan, to long ago to remember what the mg were. Nor did I keep the records from that time except for the pathology report. Cytoxan should not give you any problems. It is an autoimmune suppressing drug and it might lower some of your blood values but they will more than likely still be in the normal level area. You might be a little tired at first until your body adjust to it.

I use a similar drug but it is for my uveitis (an inflammatory condition of the uvea). I work with the public and have never caught anything, not even a cold.

Good luck to you with the surgery and may it all go smoothly.

Doris

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Hi LC814 my name is Patricia, and I want to welcome you to this site. I am fairly new myself. I was diagnosed on May 18th with stage 2 grade 2 dis.. I had a lumpectomy and 3 lymphnodes removed. After the surgery I was told I was stage 1 not stage 2. I was grateful to hear that. I am currently doing radiation treatments. I have done 14 and I have 20 more to go. The pain was not to bad on my breast, but under my arm was very sore. It took awhile to heal. Best to wear a button up shirt for a while. I will keep you in my prayers, and hope everything turns out OK. You are not alone

LC814's picture
LC814
Posts: 18
Joined: Aug 2012

My Pink Sisters,
Cant begin to thank you all, i thought of you all day yesterday. The day started early, and when i got checked in to St. Barnabas hospital, NJ, everything seemed on schedule, went to radiology at 10:30 for the wires, and even though they numbed me, i still felt every single part of it. also found out that the second lump was approx. 6cm. it took about 1.5 hours in radiology.
then i went upstairs to pre op. where i was told my original surgery time was pushed back an hour. this was around noon, so at about 2pm they finally took me in. by 430 i was in recovery. both lumps are now gone, and they said the lymph nodes didnt seem to be abnormal, and they inserted some device in the event that my margins arent clear, they will then call me back in for 34 treatments of Rads....
the waiting for Pathology is going to be hard. meanwhile I'm not in too much pain, just fatigued... the binder they have me in is helping a great deal with the pain. sleeping is difficult, as i cant seem to get comfortable, as i usually sleep on my right side or stomach.
if you ladies have any suggestions for how to best get comfortable i would appreciate it.

thank you all so much!
and if any of you have facebook, please email me so we can chat on facebook too.

Hugs,
Liz

LC814's picture
LC814
Posts: 18
Joined: Aug 2012

Hi everyone,
only a few weeks after surgery and pathology came back that i do not have clear margins.... my lymph nodes are clear. So October 3, 2012 i will be my 34 radation therapy treatments. The Cytoxan is killing my energy level, but at least as my onco said it might, my hair hasnt started to fall out.

How is everyone doing? Hope everyone is doing okay......

hugs,
liz

Ctine70's picture
Ctine70
Posts: 150
Joined: Sep 2012

Hi just saw your post as I am new to the board and wanted to send you well wishes and hugs.
I too have an 8 an 11 year old and understand what you are gong though.
Hearing you have cancer turns your world upside down but I am starting to learn that we are stronger
Than we think and we will beat this for our kids and loved ones.
You will be in my prayers good luck on the 2nd with radiation
Hugs Christine

sdukowitz
Posts: 250
Joined: Nov 2011

Gosh I went thru all that last fall.... my lumpectomy wasnt all that bad ...... take the pain pills the first few days for sure they will help you feel pretty normal ... just dont drive while on them .... you will be there for first day of middle school just let someone else drive
Best wishes and try to relax with your kids and let them help you out too .... keep us posted Radiation was easy for me too only took a few minutes each day so breathe and do one day at a time ...... I was so scared too and confused last fall so zi have been there ...... button up big shirts or zippered hoodies with large tank tops worked for me the first few weeks ... also got a few front close brasthat were bigger sizes and comfortable Sue D best wishes and prayers!

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

It is hard not to worry about billing, that stressed me out alot, too. It always seemed too high, but really it worked out in the end. I had decent insurance and my Dr was sure to put in the right 'codes' for billing as to minimize my co-pay. There are many women in our shoes, I was diagnosed with DCIS last year, I was 41. For me, the less detail they gave me, the better off I was. Sometimes it is simply too much information. The body heals very quickly, especially with a smaller lumpectomy, at least for me. We are young and that is good for tissue regeneration. It was sore the first few days, but we heal well with proper nutrition and rest. For the first week, take it easy--I do not recommend driving, but see how you feel.

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

And sorry you have to wait for the path report. Waiting is always hard.

My question is this. Will there be a place in the here after for those who try to deny medical coverage to those who face life and death diseases? I hope it never happens to this ones young adult child.

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