Dis Breast Cancer Survivors Part III - GAGWTA!

[wdw4us2]

I didn't know whether to laugh or cry. It hit so close to home.

But my DH is such a great guy I really can't complain - it's just kinda funny that they can be so clueless sometimes. But he really does make up for it with his other wonderful qualities.

GAGWTA.

I couldn't have said it better myself, KJ. If that's the only thing I have to complain about, I think I'm doing pretty good.

 

[MinnieTink]

Good morning all! I followed the link on the other thread (the BC/anxiety one) to find you guys. I can't read every page but I have read some and you all are very inspirational.

The reason I'm here is because I could truly use a hug and some info. My mom had her mammo Thurs. First one in about 4 1/2 years. There is a definite malignacy and two other nodules that are probably nothing but ??? I'm going with her to see a surgeon later today and she has an MRI scheduled for Friday. It is so "new" and there are more questions than answers. I work at the rad facility where she had her mm/us. The first radiologist scared the bejeezus out of me and my mind went straight to worst case scenario. I spoke with a different rad yesterday, a breast specialist, and she made me feel like we can get thru this. The knot that has been in my stomach loosened a little.

I'm sure I will have many more questions as we move forward. Thanks for being here!!

 

[jackskellingtonsgirl]

Welcome, MinnieTink!
I am sorry about your mom! My mom was diagnosed with stage III ILC in 2008, so I know how you are feeling. My mom is doing fine now. The waiting is the most brutal part, I think. Once you know what you are dealing with you feel a little bit like you have some power. The ladies on this thread were a tremendous comfort and resource for me while my mom was in treatment, and now I just hang out here because I like the group.

 

[KJ Luvs Pluto]

Welcome MinnieTink

jacksgirl said it so well. Waiting for results is probably the hardest part of it all. Once I knew what I was up against I could go forward with treatment. I had invasive lobular carcinoma that I just finished treatment for (other than 5 years of Tamoxifen and final reconstruction which will come later this year). Surgery, chemo, radiation all sounds so scary until you go through it. It's really not that bad. The fear of it is worse than the reality.

So - go ahead and ask your questions. Everyone on this thread is always so nice and so willing to help. There is always an answer to whatever question you have.

 

[MinnieTink]

Thanks. I agree. I am someone who needs to know EVERYTHING. The first rad, all he said was Its bad, Im sorry. The four days that followed were sickening. I wear my heart on my sleeve and all my emotions on my face and I had to hide my terror from my kids all weekend. I spoke to the second rad yesterday. She said there are far worse things that she comes accross almost daily and that with done surgery and treatment, my mom should be just fine. She went into details that I needed to hear. My mom and I are very close. I'm an only child. And a worry wart so this is tough but we will do it!!!

On a further crappy note, today my best friend should be blowing 38 candles out on a birthday cake. Instead she will always be forever 21, as she passed away in 1993 of nonhodgkins lymphoma. It is a craptastic day today but I still can see the beauty of life in the smiles of my children and feel the love in a hug from a friend.

Peace

 

[luvmarypoppins]

Good afternoon ladies

Minnie Tink - sending you a . So sorry to hear of your moms dx. She is very blessed to have you in her life. I will pray that she gets the best treatment possible. Its good that you want to seek information and have questions. The gals here are also a weath of information and knowledge,experience and caring etc. They are the best!!

KJ - Well I thought I was the only one with a clueless dh. After reading your post I feel better. For christmas my dh got me nothing, yup 7 operations, coma, radiation etc. and I get nothing. (Well I did get the disney trip in december, but nothing personal from him) We do not exchange gifts but I did get him a picture of us in disney and wrote him a nice note. Well this year I had to do the planning myself for the b day and anniversary at disney. I guess I am blessed to be going there. I just wish he would put some effort into something once in a while, but after all these years he usualy knows I dont like anything he picks out himself etc. It just goes in the drawer etc.
Anyway, I hope you have a really nice dinner somewhere really nice too. You so deserve it. You have fought tough and hard sista!! Those 100 mile round trips for the chemo and radiation alone are amazing! You encourage me for sure.

My neighbor is still trying to sell his house. I never see anyone coming to look and he has had 2 open houses. Ds 22 is at a job fair at college today. I hope it goes well. Ds 20 wants his phone back, yeah right. Like that is going to happen. I accidently got the sonogram bill since the hospital billed it wrong. They will resubmit it $325!! Wow, stuff is sure expensive. Thank God we have health ins. Which reminds me to keep working on ds22 paperwork. I am debating wether to get him the drug option or not. They say that chemo is something different etc. The premium would be alot less without it.

GTAGWTA. Have a great day everyone.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Maryann, my bosses put their house on the market back in February and they have had ONE showing. They have had 2 realtor open houses (with a third this week) and they had a general Open House Sunday but I don't know how that went. It is a good thing they aren't desperate to sell the house. They would like to buy a bigger place, but it isn't DIRE.

Add my DH to the pile of DHs who don't plan or purchase things for special occasions.

Last time I had a mammogram my OOP cost on it was $320. It was "applied to my deductible". I was FURIOUS. Mammos are supposed to be 100% covered as a cancer screening, but MY mammo was DIAGNOSTIC, not SCREENING. The difference is *I* got to pay for the procedure I had. I went round and round and round with the radiology clinic and they would NOT resubmit it coded as a screening. The guy was a complete jerk about it, too. It is the EXACT SAME PROCEDURE, so I fail to see what difference it makes how they code and bill it.

 

[snappy]

Good morning all! I followed the link on the other thread (the BC/anxiety one) to find you guys. I can't read every page but I have read some and you all are very inspirational.

The reason I'm here is because I could truly use a hug and some info. My mom had her mammo Thurs. First one in about 4 1/2 years. There is a definite malignacy and two other nodules that are probably nothing but ??? I'm going with her to see a surgeon later today and she has an MRI scheduled for Friday. It is so "new" and there are more questions than answers. I work at the rad facility where she had her mm/us. The first radiologist scared the bejeezus out of me and my mind went straight to worst case scenario. I spoke with a different rad yesterday, a breast specialist, and she made me feel like we can get thru this. The knot that has been in my stomach loosened a little.

I'm sure I will have many more questions as we move forward. Thanks for being here!!

minnietink, when is your mother having a biopsy? You really need the info from that report to know what is facing your mom. When she has the biopsy pathology I would try and gather all the reports she receives from the biopsy, the MRI, etc in a folder. You have to ask generally for a copy of the reports, even though they do belong to the patient.

I am glad you went with her today to the surgeon's visit. It is really hard to remember all your questions when you are scared.

Let us know how the visit today went.

 

[MinnieTink]

Thank you for your input so far everyone.

My moms visit with the surgeon went well. She has such a great bedside manner and made my mom feel really comfortable with her. The plan is MRI on Friday. Then she needs surgical clearance from her GP and/or cardiologist. Then lumpectomy. The surgeon explained a procedure...how they inject some type of isotope into the lymphatic system then somehow they can tell which nodes would most likely have been affected and test those first. (?) Then path report and we figure out what to do from there.

I had a fibroadenoma removed in 2000. The surgeon explained that the recovery would likely be similar for my mom. (No big deal. A little sore for a bit). I have another fibroadenoma in the other breast which we've just been watching. Anyone know if they can change from being benign to malignant?

I feel much better--anxiety-wise- now that the ball is rolling and we are going to take care if this.

Oh another question to which I'm sure there are many answers... When and how do you tell children? My mom doesn't want the girls to worry. I think they need to know. Maybe not right this minute but eventually. I am also concerned about how they will take hearing this news. My DD14's best friend just lost her 42 y/o dad to cancer. His battle only lasted a very tough 6 months. I totally don't see this being the case with my mom but I'm afraid they will immediately equate cancer with death.

You all are the best!!!!!!!!!!!!!!!!

 

[snappy]

I would say your daughters probably already sense something is up. I would tell them as matter of factly as you can. It is better than overhearing discussion about it which is what happened with my DD when she was 8 yrs old.

I understand your mom's take on it but I agree with you on this.

Glad the visit went well. You sound a lot better. How is your mother's frame of mind?

She already has had a biopsy? I missed that part.

I cannot comment about your fibroadenoma. I would think each separate one would have to be tested to really find out. The biopsy is the ultimate test, particularly surgical biopsy as all the tissue can be tested, not just samples.

The lymph surgery she will have is called the sentinel node type. If you are a candidate for this type it is better generally than having most of the ancillary nodes removed, as the pain is usually less and the chance of lymphedema lower (fluid swelling in the affected arm).

It sounds like she is under good care.

Do you know the size of the tumor?

 

[Sha]

MinniTink Glad to hear your mom did well. My mom had the isotope injection with her 2nd mastectomy. Wish it was done with the first too so that fewer nodes wouldve been removed. I think that telling your girls about cancer is good and with education that not all cancers equal death would help them to not associate it that way.

JSK I think that is so wrong about them not recoding it, but I have learned that sometimes the amount you paid may be more than what they get when covered 100%. Im learning more about coding because of work.

Had a massage yesterday and she is wondering why I am so stressed. She even massaged inside my mouth hitting pressure points because I have been clenching my jaw so much. So need my trip without mom this weekend. Love her but need some down time. Thankful she is doing well. I have some things to look forward to so its helping with the depression, but its still there. Never stayed like this before.

Hope you all have a good day today. I am hoping to finish up on my stack of paperwork I am behind on. I have added another way to track stuff, and that seems to help. Plus slow week to begin with.

 

[KJ Luvs Pluto]

Sha -

MinnieTink - I'm glad that you are feeling better about things and that you and your mom can get on with doing something about all of this. I don't have children but I have a best friend who has kids I'm very close to and she was wondering the same thing. I said to make sure she said that first, I was going to be okay but that I was very sick and was going to need surgery and medicine that was going to make me sicker and make my hair fall out but that in the end it was going to make me better. Kids do know there is something going on and when the talk is hush, hush their imaginations can make it worse than what it is (yes, even worse than what many of us are going believe it or not). So telling them the truth can help relieve their anxiety.

I agree with snappy about keeping everything in a folder. I also keep a journal with dates of visits and tests and how I feel after treatments. Right now I remember but months or years down the road I won't and doctors will keep asking - when was your surgery, last MRI, last chemo, last radiation etc. - and I won't remember. If I keep it all written in one notebook which I always bring with me to all doctors appointments, I don't have to try and guess. I'm hoping someday to have to look under my shirt when they ask which side the mastectomy was on because I forgot and no longer have any pain

 

[snappy]

I like the journal idea. Very good. I started one but it went by the wayside.

 

[MinnieTink]

The facts are swimming in my brain but I think the tumor looked about 1.5 cm on the mammo, slightly different on us. (after my third child I lost at least half my brain cells. My memory is nothing like it used to be. Haha). As I said I have worked at the rad facility for years and I am lucky to be able to have a number of radiologists review moms films. It is so blatantly malignant that instead of spending time trying to do a bx they will just go ahead and do the lumpectomy.

Regarding the coding issue, I just checked and the procedure codes are different. (dx is 70551 and screening is 70552). In my facility if you come for a screening they do the 4 films and send you on your way. Diagnostic studies, they will do the films, show them to rad who will determine at that time of more views are needed. This process will go on until the Rad is satisfied. If it is a follow up only the usual number of films may be sufficient, but it is still diagnostic. I can see why the rad facility has to code it as diagnostic, how your physician ordered it. However I think it absolutely stinks that you are being stuck with the bill by your insurance company. That, I don't get. Maybe try calling the facility and see if they will give you some kind of break. A certain % off perhaps. It happens!

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

MinnieTink, my mom's tumor was the same way. The radiologist looked at it and said "I PROMISE you this is malignant, and if the biopsy is negative we will have to repeat it because I am CERTAIN this is cancer." And it was.

That mammo was almost 5 years ago, so I am trying to recall exactly how it went. I was 35, so it was a baseline. My GYN wrote an order for a plain old mammo. I called, and I made the mistake of mentioning to the scheduler that I have fibrocystic breasts. She then immediately changed me to "diagnostic". They did the films, then they did a u/s of one area on the right, then I was done. Then I got a bill for $320. My GYN was fabulous, offered to send whatever documents they needed to change the code. The radiology clinic was ABSOLUTE that they were NOT going to change ANYTHING, and if I didn't pay the entire amount in 90 days they were going to send me to collections. Jerks. The $320 was the "contract" amount through our PPO, so in essence it was already discounted. But our deductibles are high so I owed the entire $320. We have to pay 100% of the contract amount OOP until we meet the deductible. We NEVER meet the deductible. So, even though cancer screenings are covered at 100%, they still found a way to make me pay for it. This was years before my mom's diagnosis, and nobody else in our family has had breast cancer, so the ONLY reason they made me do diagnostic was because I mentioned the fibrocystic aspect.

 

[DonnaO]

GAGWTA

I just found your thread! Guess I never looked before. You see, I havent been on the boards in a while since I was diagnosed. It has been a long year - full of a mastectomy and medicines. But I am almost done now. Just healing. Inside and out. I think I am at that place where I am looking around and saying "Wow! Did that really just happen?" I guess many of you have been there. And to celebrate, I am bringing my family to WDW. That is how I got here. So glad I found this thread!!! Thanks to all of you for all of your stories.

 

[KJ Luvs Pluto]

Welcome DonnaO. I hope you are feeling better now that you are almost done with treatments. This is a great place to get help, advice or just encouragement. And sometimes just for a laugh when it's needed.

Last night my husband looked at me and said "You're no longer bald" What! "You have enough fuzz that you no longer shine so we can't call you bald anymore" One more step in the right direction. Never thought I'd be posting a dancing banana because I'm "no longer bald"

Well, I better finish working. I have to try and get my cat into his carrier and get him to the vet. He hates going into the carrier so I should probably get the anti-bacterial cream out now - for me, not him

GAGWTA!

 

[Pea-n-Me]

Welcome MinnieTink and Donna. (Will write more later, just running in to use the bathroom, lol - school vacation week!)

 

[snappy]

Welcome, Donna!!

Glad you got back on line and saw out thread. It has been popping lately with newcomers and old friends alike. I am lovin' it.

I gotta say I also love your idea of celebrating coming out the other side of your cancer journey! You sound like a real survivor, sista!

Share more about your story if you feel comfortable. When is your trip?
I am set to go down May 18th for 9 nights, I know LMP and Elizabeth are about the same timeframe.

 

[luvmarypoppins]

Hi Ladies, yeah I am probably the only one up right now. My back is killing me and I cant sleep.

Donna - welcome. A trip is a great way to celebrate. I did that last year too in December. I figured after 7 operations, radiation and a coma it was time to celebrate.

Laurie - we are arriving on the 18th too. My vacation is revolving around my adrs, I have to burn up the gift card because I really dont want to bring home souvenirs. If I do for myself its always the kitchen stuff and something for the ds etc. We must make a plan to meet up sometime.

I have been so tired lately. I wonder if I need another B12 shot? All I did was some laundry, had ds20 take me to the grocery store. He was so obnoxious. I was crying in the store and asking him why he was being so mean. ? He said "I had a bad day at school today!. O.K. He shouldnt take it out on me. I could barely push the cart in the store. Later he took me for the haircut. He went and got gas while I was enjoying being sane for a while. Ds18 is calling people at school to donate to the blood drive so he is happy and you all know what I think about blood!!

And if it wasnt enough, ds20 thinks he might be getting the shingles again. He has had them before. I looked at the mark where it would start and its in the same place as before. I am going to bed and he is at emilys so I dont know if I can look at it again I told him he must call the dr. because he would need the anti viral drugs asap etc. I hope it isint because the last time he had them it was terrible.

It was also a crazy day with so much bad info coming to me. Our old minister is sick in the hospital, some people we know step son died, my kids old babysitters dad died, someone else we know is having mega problems,poor sweet alyssa is sick and might not be able to have her heart biopsy.That is enough for one day!!

GTAGWTA.