Mastectomy Sept 2011
Comments
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Olgah - how FRUSTRATING. I just did a little search for you, and I ran across the organization below which appears to help patients negotiate with insurance companies for free. It is a non-profit and was started by a woman who had a friend who had cancer and had problems with her insurance company. I hesitated as to whether it was real or not, and then I found out it is partnered with the American Cancer Society and Livestrong - so I'm assuming it's legit. If so, what a great organization!
Patient Advocate Foundation (PAF) has partnered with the American Cancer Society to provide case management services to patients nationwide that have been diagnosed with cancer or are screening for symptoms of cancer. Patient Advocate Foundation provides extended services to patients experiencing healthcare issues to include insurance, debt crisis, employment, and/or out-of-pocket expenses related to cancer diagnosis and treatment.
The dedicated PAF case managers assist patients with insurance appeals, co-pays for chemotherapy treatment and medications, transportation to and from treatment, debt crisis in relation to the patient's diagnosis, pre-authorizations, enrollment and/or eligibility for state and federal funded programs (Medicare or Medicaid), billing/coding errors, and unpaid medical debt.
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Finally! They just called me and asked me what is going on , then they promise to extend and pay....Thank you Lord!
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Caryn-- when my port was placed this summer I was bruised for 2 weeks -Dr said that is normal. -- yea on the shower.
Groovy girls-- I wasn't told anything about massaging TE either. I go to PT for the first time this afternoon and I am going to ask I will also be asking PS next Tues at my first fill.
Sarah congrats on sleeping almost flat.
Tina- I tried the bed last night (been sleeping in a recliner for two weeks - tried the bed 2 time while I had the drains) and even though I am now drain free I couldn't get comfy no matter how many pillows I used.
Olga. I agree this doesn't sound right with your disability I would call your HR department - hopefully they can help you.0 -
Great news Olgah!!!
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To add a little humor to your day...I think we can all relate to this!
This is why t-rex's weren't good boxers:
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Thank you so much. Lorraine!
what is it the domes?
Margie, I am still sleeping with a wedge, I am used to it , I guess... funny...
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Olgah - That is wonderful news! So happy for you.
That was a cute pic of the T-REX! Very funny.
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Olgah - My type of reconstruction is called microfat grafting, and it is a relatively new procedure. Basically, I have liposuction from my legs, etc. and that fat is injected to make my breasts. However, you have to make a "matrix" into which the fat is injected - the domes are worn on my chest and apply low suction. Over long periods of time this stretches the skin out and improves blood flow so that more fat can be injected and survive. I will probably will need 2 more graftings over the next 6 months or so.
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Dance trance, Thanks for the "nip tip" Not sure what I'm going to do but decided not to think about it until other tx is complete. Right now, I'll live with a Barbie boob!
Caryn0 -
Hi ladies! Been away from the 'puter this a.m b/c I was at the PS for my f/u. First things first:
Olga - catching up here so was all fired up to let you know about the PAF (Lorraine, they are totally legit and do so much good for so many people!) and to help you fight them, but now am ready to celebrate w/you and to breathe a huge sigh of relief - hooray! that got resolved in your favor, and so quickly. You don't need stress like that. Now you can go back to doing your most important job right now, treating, healing, and kicking cancer's butt.
Lorraine - those domes sound like some sorta torture - glad that you got a reprieve - you have a lot going on this week and it'll be nice not to add to the mix right now. Let's hear it for keeping it simple for now - and how awesome is your surgeon for emailing you STAT!? Love it when they take good care of us. Restores my faith. LOVE the t-rex cartoon. I am always referrring to myself as a t-rex.
Jaysmommy - I'm doing well w/pain right now, so am off everything for that. For sleeping I still haven't given up Ativan some nights - helps ease me down and gets my mind to stop spinning. I am trying to wean myself off everything but I was a terrible sleeper before BC so it's always a struggle for me. As someone else said - sleeping badly is the #1 complaint of everyone on this thread.
Tina - ugh. Still uncomfortable - boo . . . but I did see it was "better" so I'm keeping fingers crossed that the trend continues for you. I think that back incision makes a huge difference in you getting comfortable - you've got stuff going on on both sides of your body and it just sucks in terms of finding a position that works. Hoping you get a break soon. Pouring rain here. No walkie for Sarah today.
Caryn - I think you might be feeling a little better - back to cracking jokes - love the "Barbie boob!" Hope you're more up than down today.
SO! Great news for me - I can do cardio! Lefty is healing up nicely since its revision last Wed., so she wants me to be careful w/arms, still - no arms at all for 3 more weeks 'til I see her again. But I can sweat - oh yeah, baby - look out. She even said gym OK - no arms on ellipticalARC, even suggested recumbant bike so that no pressure on pecs/arms but fast walking no arms swinging, treadmill, etc. all OK. I'm super tired today so I won't do much, but I can't tell you what a lift this is for my spirits. I still have 3 weeks b/c as I'd suspected, the revision set me back a week - so meals on wheels (really just friends) will continue as I can't lift a pan or push or pull. But at least one restriction has been lifted.
I'm off to rest and then dig into some amazing and unexpected food that my friend who took me to the hospital brought - North African peanut soup and some delicious looking salad. My other girlfriend brought sweet potato burritos to feed an army for dinner tonight, so I might have one for lunch as well - feels nice to have an appetite today.
Hope people are having a decent day.
Sarah
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Lorraine-- love the Trex
Sarah-- good to hear you can start working out. I am walking 2.5 miles per day with my arms pinned to my side but yesterday PS gave me permission to swing them. One mire step to being normal.0 -
Hello all.
Olga - So sorry the insurance was causing you such stress. You clearly don't need that hassle right now as you need to focus on getting bettter while kicking cancer butt as Sarah says!!
Tina/MargieC - Sleep whereever is comfortable and hopefully you'll be able to transition back to your own bed in no time...
Dancetrancer - Boy and here I thought the steorolactic biospy was some kind of man made torture!! Glad you get a one week reprieve so you can continue healing before starting the process. And as always, eyes on the prize... Hang in there....
Sarah - Congrats on the increase of activity which will help you get back to feeling more like the old Sarah... Just remember, baby steps.....
I too saw the PS today and he is not overly concerned about the incision sports as he feels they are superficial and should heal in a few days. However on side of caution, no fill for me today as he does not want to risk stressing the tissue. Will try again next week....
Lookin forward to a quiet evening (hubby gone on business) with me & the puppies enjoying some popcorn & a movie.
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Odie, tell us about your puppies...I am a dog person. I have 6 years old labradaor Rocky and 6 years old Westie named Scotty.
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Olgah ,
I have two rescue puppies (glorified mutts) from the Bahamas. Apparently dogs are wild there and not treated well. A rescue league (Potcake Place) takes in puppy litters to send them to the US & Canada so they can have a chance of a decent life. My one year old is a minature German Shepherd mix complete with markings ... and my 8 month old is a rust colored lab type mix. Both are about 50 lbs each and have unique personalities. They have become very spoiled having Mommy home all day to play and share air-popped popcorn with them... I previously had a black lab/Shepherd mix who was the center of my world until his peaceful passing last summer. Is Rocky a golden/brown or black lab? Soulful & loveable, right? And I bet the Westie keeps him in line, huh?
Sorry ladies...... Clearly I am a pet person and can yammer on about my babies however Missy says I am hogging the popcorn so back to the movie..... Have a good evening all.
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Will find out tomorrow if I need chemo or radiation....
It has been raining out so I have not been able to walk outside. Renewed my gym membership and met with my personal trainer. Kind of funny to come up with a routine that involves no upper body weights!
I have been so paranoid about truncal edema I have GG#1 poking my back "does this look fat to you?" I will be seeing the lymphodema specialist on Monday- I think it is the same one Sarah goes to. I also have a UA compression top which I think will help- if only the weather will cooperate!
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Hey Groovygirls - who are you seeing on Monday for LE? I am not going to MGH, have an old friend/contact in Wellesley who I saw 10 years ago - she is super, but I've heard from women on the LE board that the women at MGH are great, too. If you end up wanting my therapist's info., I'm happy to pass it on. I've had swelling and no one is concerned - I'm taking their word for it for now - after all, I figure they've seen hundreds of women and this is my first time thru with all this, right?
I love the idea of a training program w/no upper body. I'm not quite ready for the gym, I think (in part b/c I have to park in a parking garage to go to mine, and that's a lot of cranking the wheel, etc.), but I might follow your lead on that one!
Olga/Odie - I'm jealous of you and your pups while healing. There is nothing better than unconditional pet love when going through cancer treatment. However, it's been POURING today and my MIL is here w/her (awesome and very sweet poodle) and every time he has to go out (our yard is not fenced) she complains - can't blame her. A dog's a ways off for this family.
Well, in the spirit of being cleared for cardio, and b/c I was stuck inside w/the pouring rain here in Boston, I did an "hour of power" here late afternoon and got this place semi-presentable. Cleaners are coming tomorrow so now they can clean surfaces, floors, etc. Feeling tired, sore and satisfied. I'm waiting for DD to fall asleep and then I'm not far behind. Tomorrow will be my first solo car trip - cross your fingers no one gets hurt and I don't have a nervous breakdown! Only going a very short distance . . . .
Rest well, ladies.
Sarah
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I go in to see my BS tomorrow. Actually to be his test dummy. He is going to start using the LE machine to detect the early stages, etc. The lady who runs this program will be training his staff on patients. And guess who's first? That's right. Kinda excited about it. Hoping for good results!
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Ladies, I forgot to say- I am officially bold now...The hair started falling off on th 18 day oif chemo...I thought first I had headaches, but it was skin aches. I cut it myself very short, it took time, because my hair is very thick and curly. Och.. it was.....But it made me feel better, after I finished cutting and later shaved it. I say myself I look like Sinead O'Connor now. Eye brows want to fall off too.
I got myself free wig in the CC, but I don't know how to deal with it.I look ridiculous myself wearing it.I would like to go to Benetton store, they have pretty scarves there, but better avoid crowds. Sp I am wearing little scarf now.
Odie, I want to see pictures of your puppies.it is so good you rescued them.Rocky is yellow lab, and Scotty bosses him around,he is Alfa too. They both give us unconditional love and know when I am feeling bad.
Sarah, I am proud of you. Are you exersizing? That is so good. I wish I could, but chemo keeps me fatique.Later, I promise. And you have so good friends and family. In my situation only my husband cooks and cleans, my younger son does not communicate, because his fife does not like me .... unfortunally...even now. But this is another story.However, ladies at my work do and they gave me $120 gift card to Whole foods, that was so good!
Groovygirls I will pray for youtoday.
Lori, I did not undestand about mashine, but good luck!
And, ladies who is having chemo besides me? I lost a lot of communications here.
Olga
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Ladies, I forgot to say- I am officially bold now...The hair started falling off on th 18 day oif chemo...I thought first I had headaches, but it was skin aches. I cut it myself very short, it took time, because my hair is very thick and curly. Och.. it was.....But it made me feel better, after I finished cutting and later shaved it. I say myself I look like Sinead O'Connor now. Eye brows want to fall off too.
I got myself free wig in the CC, but I don't know how to deal with it.I look ridiculous myself wearing it.I would like to go to Benetton store, they have pretty scarves there, but better avoid crowds. Sp I am wearing little scarf now.
Odie, I want to see pictures of your puppies.it is so good you rescued them.Rocky is yellow lab, and Scotty bosses him around,he is Alfa too. They both give us unconditional love and know when I am feeling bad.
Sarah, I am proud of you. Are you exersizing? That is so good. I wish I could, but chemo keeps me fatique.Later, I promise. And you have so good friends and family. In my situation only my husband cooks and cleans, my younger son does not communicate, because his fife does not like me .... unfortunally...even now. But this is another story.However, ladies at my work do and they gave me $120 gift card to Whole foods, that was so good!
Groovygirls I will pray for youtoday.
Lori, I did not undestand about mashine, but good luck!
And, ladies who is having chemo besides me? I lost a lot of communications here.
Olga
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Hi everyone,
Lots of catching up for me to read here. But now I'll have time to catch up. It's been a busy week for me. Had my port installed last Friday which kind of wiped me out for last weekend. Had chemo class on monday. My first chemo treatment was yesterday, then I went to the look good feel good class at night. Slept for 4 hours maybe and have my support group today. ( if I go). Not feeling to bad right now but notice a few small things. Nothing that is too bad yet but I know it will still come.
Olga- I'm having the DD A/C x4 then T x4, 1 down and 7 to go. It's good you hav support from your co-workers . I have so much support from the people I work with and it means so much to me. It seems like i spend more time with them then my own family sometimes. I hope your younger son comes around soon. I would like to kick him in the "but" for you!!,
Diana
Edited because I can't spell Lol0 -
Diana,
nice to hear from you. Don't worry, nothing bad will come, besides, may be, fatique.They have tons of medicine nowto controll nausea, it works , like 5 days. They give steroids like Decadron, Emend, and smth else, they are really good. I see you are triple positive like me, but I did not understand what are you getting. I am getting Taxotere, Carboplatin and Herceptin 6 times and then Herceptin for whole next year. Herceptin is a wonder drug, they even mede a movie about scientist who made it, on LMN.
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Olga. It's just a different treatment, AC is adriamycin and cyclophosphamide which I will get every 2 weeks for 4 treatments, then I will get taxol every 2 weeks for four treatments. Also Herceptin for a year but it won't start till the taxol treatment. DD just means dose dense and the oncol explained what it meant but it's one of those things that went in one ear and out the other.!! Had a few of those moments lately. hehe
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wow, Diane, it is completely different treatment...I am getting tx every 3 weeks next one will be on Halloween HE HE..
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Olga= I am getting same tx as Dia123, except for the Herceptin, I'll be on Tamoxifen for 5 yrs. It's strange how everybody's is different some how. I don't fully understand this guinea pig thing I have w/the machine today either. I just know it's supposed to pick up very early signs of LE, so I'm all for that, will let you know more after I've done it. And I think it was another site, women were talking about funny ways they would paint their bald heads for Halloween. My MO even brought that up to me as well! Get creative if you choose!
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Olga, I start chemo on Nov. 1. Not sure which regimen I'll be getting since I will be in a clinical trial and I haven't been assigned an arm yet. I am hoping for TC plus Herceptin. I am not HER2 + but this trial is designed to see if Herceptin will help HER2 low women, like me. I have 2 dogs, Nala, a chubby Pomeranian and Mary Lu, a chihuahua/miniature pinscher mix. They are both very lively and remind me of slightly wild children but they are very loyal and loving. Caryn
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Caryn your dogs sound adorable! Chubby Pomeranian, is she red? they look a little like westies an a little like Foxes
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Olgah- like Lori, I'll be on tamoxifen for 5 years also. At the beginning my oncologist was suggesting tht I could do the same treatment as you or go more aggressive. At that time my her2 test results were not in yet as I had to wait for the fish test. Since that came back positive and with other aspects of my cancer we decided to go more aggressive. I actually had IDC and dcis. I think my hair will be falling out for Halloween. My second treatment will be just after then. At least it will be close I think.
Lori- hope you get good results today with the testing0 -
Diana, I will get Tamoxifen as well. I had IDC ad DCIS too, that's why I had 2 lumpectomies ( one was clear margins) and after that on September 1 double mastectomy. I won't have radiation though.
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DT, thanks for the awesome tip on the PAF. This is truly what the internet was made for - to allow one person's research and efforts to flow immediately to help others in the same situation. Sorry to any males who would disagree and say the true miracle and best use of the internet is internet porn!
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I have unbelievable news- my onco test was 9! Ended up with four tumors- largest was 2.3 cm and 1.1 which upgrades me to grade IIb. Bottom line- no chemo or radiation! Will need tamoxifen. Oncologist spoke to me about Lupron and possible oophorecetomy. Certainly things to think about and research
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