Class of 2009 - Sisters in the same time frame
Comments
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Alicia, you make me laugh....don't worry about my head swelling...my roomy wig can handle it...keep up the compliments...LOL.
Paula, Welcome to our group, it is a great place ot be...to bad we all had to meet this way and not on some sandy beach side bar..Perhaps in 5 years we can all plan a trip someplace warm to celebrate..
I havn't thought to much about reconstruction. It concerns me that if I have it on Lefty then when Righty starts to go more south (sag) then I will have one purky one and one droopy one...how will I look when I am 70...call me crazy , but I think of these things..just trying to get through chemo and radiation first..
Michele
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Michelle - Thank you for the welcome! I realize how fortunate I am to be thinking about reconstruction again because this new cancer was also found early. So many of you have so much to get through before you think about reconstruction. I admire your courage, wish you all the best, and will keep you in my prayers.
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alicia, I am still feeling great. No flu symptoms yet, no aching, no constipation, no nausea, I just get tired really quick. I have tried not to do much and that has not been a problem. I am staying with my cousin and she is taking very good care of me. My DH came down with a cold and we certainly did not want me to get it. I will get my blood work on Thursday and if it is up I will check about going home.
paula, welcome, you will find what you need here.
pam, I didn't sleep on the side of my surgery for about 5 weeks. I am a right sided sleeper and I just could not make my self rest on my left side. I stayed on the sofa, because I would face out on my left side. Finally I just gave up and went to bed on my right side and have been OK, ever since.
Hello to michele and marie, onty and everyone else. Some days it is hard to keep up on this site.
Juannelle
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Hey everyone, I have no idea where to post this question so I will try here. Sorry if it's the wrong forum.
I have a very confusing set of bills from all of my tests.
In my panic I did not realize I was out of network, and I am now paying the price. (I know it sounds so naive, but it was my first mammo,and I was caught off guard, I never dreamed I would end up getting biopsy,mri, and pet scan)
I am having a tough time understanding what insurance should be covering, and what they will not, and what might just need a new code.
I suspect I will have to file an appeal on some things, get the lab to resubmit others, and at the end of the day try to negotiate the bills and set up a payment plan.
Does anyone know of a charity or service that can assist me in dealing with my bills, not to pay for them, but to help me deal with the insurance company and the radiology lab.
I am in New York, would it be some sort of attorney or social worker or accountant? Would Komen or somebody similar have some sort of caseworker?
BTW I did request BCO to set up an insurance and finances forum....but perhaps it might get too political.
Thanks
Update...I did email the Patient Advocate Foundation to see if they can give me a case manager. FYI Later I tried to reach them by phone, I have the impression they only work with cancer patients who are terminal. Still a good resource for somebody else.
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Good Morning ladies. I wish to join your club....dx July 09, surgery in September and October and chemo beginning today. One more operation post chemo for hysterectomy in mid-2010. I believe it is wonderful how people from all over the world can unite and support, inform and guide each other through this terrible disease, I would give anything not to qualify, but where as that is not an option, I cannot think of a more wonderful group of ladies to be with ! As I fearfully head to the big chair this morning, I wish you all a wonderful, peaceful day. "Life is not about weathering the storm, it is about dancing in the rain"... be well.
Debra
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juanelle ~ so glad you are feeling good !!! I had my hair all falling out in clumps today. Emotional morning but hubby and my kids buzzed it off. A fear tears and even a few laughs. Almost left the mohawk ! hope you have another good day ~ sorry DH has a cold.
Suz ~ I don't know about insurance. I had to have everything pre-authorized beforehand. Good luck to you with the insurance nightmare. I am sorry you have to go through that on top of everything else.
Asterix ~ sorry you are in our club, but ~ Welcome. Good luck today if I am understanding correctly today is chemo.
Michelleboots ~ I am not rocking bald, now give me that butterfly headwrap I have a tattoo or two to match... LOL
HUGS !!!!
Alicia
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suzny, I am so sorry you are having to deal with the insurance thing. I know mine pays 80% and I pay 20% up to a certain amount. I am almost there, but will probably it the first of the year and have to start over before it is reached.
debra, sorry you had to join us, but you are welcome here. I hope your tx goes well today and you only have mild SEs.
alicia, you are rocking the bald look today. Doesn't look bad at all. I know all about the tears with the buz, I am glad you let your family help you.
I am still feeling good. I am so surprised. I get tired really easy, but everything else has been so easy. I did have some pain from my Nuelasta yesterday, but it wasn't anything a pill didn't help.
Hope everyone has a great day
Juannelle
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Suzyny, Can't help with the insurance questions...things are a little different here in Canada. I am sure someone can help you.
Astarix1234, Welcome to our group. I see you are in Ontario...where? I am in Ottawa. Are you french? I thought the name sounded like the french cartoon cheracter...
Alicia, the head wrap is by Designwraps. they have a site www.designwraps.comI got mine at the mastectomy shop in town for agout $25. It is made of a stretchy fabric. There was no lebel to tell the exact fabric. If I can get a better picture I will send it...it is much prettier that the photo I shows.
Must go and meet a friend for coffee...
A great day to all.
Michele
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Suzny - I totally understand your panic with your initial dx and now having to deal with the insurance companies and bills. I hope you get everything worked out. There has to be someone out there that knows something about it. Good Luck
Astarix1234 - Best wishes and luck for a peaceful and side effect free first treatment. And welcome to the board.
Juanelle - glad to hear that you are still doing so well post txt. Keep on keeping on, and I hope the hubby feels better soon.
Alicia - have a great coffee date with your friend you definitely deserve it.
I on the other hand am not feeling quite up to par this a.m. I think I am getting a sinus infection or URI. Going to see the doc at 10:45 before it gets the better of me. Have a great day everyone!
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Well I have a bit of good news. The lab appears to be willing to compromise on the portion of the bills not covered by insurance!!!!!!
It is almost too good to be true, and I hope the woman I spoke with was correct.
Oh my gosh, I am so happy. Yesterday we got a 17K bill in the mail and I was in a panic!
Fingers crossed, I already feel healthier without this stress.
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Suzyny, Holy crap...17K.My heart just skipped a beat. Makes me glad I live in Canada and don't have to deal with that stuff...I am sure the stress alone would kill me. My husbands insurance covers things like, wigs, breasts, bras, and prescriptions...my biggest expense out of my pocket is 20% of the neupegen shots...that is enough
Speaking of neupegen shots, I will get them with my taxetar TX. I thought my Dr. said it was one shot the day after tx. But it seems like some of you get them for a few days...What is the norm, if there is one. Or does it depend on the dr.
Later Lovely Ladies.
Michele
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Hi Suzny, I have had issues with out of network providers for my insurance and I have had to put one heck of a fight with my insurance company. There is a thing called RAP which stands for Radiology, Anestesia and Pathology. These are the providers that we have no control over choosing, and the ones that so far have caused me the most problems and given me the highest bills. After going round and round with the insurance company and the providers I found out about the RAP and some things got resubmitted. I am not sure if your situation is like this or not.
Wishing everyone a wonderful blessed day.
Hugs
Jen
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Hello - I am "joining the club"! Was July a BAD month for bc or what? It seems like TONS of us were dxd in July of this year. I am 46 and have 2 kids (ages 6 and 3). I had lobular and ductal, and so I had a mastectomy (right) on July 29th (no recon because I was too freaked out to even think about it, which I regret now). But I consider myslef blessed because I got an 8 on my oncotype dx and got to skip chemo and my lymph nodes were clear so I got to skip radiation. I had a rough time with "cording" but got some great PT at a special place just for bc patients. My therapist herself is a bc survivor and she is terrific.
Now I'm trying to figure out if I was to put myself through recon. I'm doing my research and DIEP is what I would do if I do it. Would love to go to NOLA but doubt my insurance will cover it.
Glad to have you ladies to lean on!
janet
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Welcome Janet to our little group.
Michele0 -
Janet,
Yes, July was a BAD month for BC! I had a bilateral mastectomy on July 2 and just finished my reconstruction (saline implants with alloderm). I'm so glad I did the reconstruction! I can't tell you anything about DIEP, but I'm beginning to like having perky breasts that don't require a bra! It's amazing what they can do with nipple reconstruction.
It looks like we had similar diagnoses and both lucked out on the chemo and radiation. I never thought I'd find myself feeling lucky about my breast cancer, but it could have been so much worse. I have a lot to be thankful for this Thanksgiving.
I hope your experience with reconstruction is positive.
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Welcome Janet, I was also diagnosed in July, so I agree that it was a bad month. We are glad you found us.
michele,the Nuelasta is one day after tx and the Neuprogen is several shots after tx. I think with the Neuprogen you can get them for 4 or 5 days, but I am not sure about that. I get Neulasta. After my 1st tx I got both because my WBC fell so low. I go today to have a blood test and see the Onc, so I am hoping everything is going well for me.
renee, I hope you get to feeling better. Glad you are getting in to see the doctor today.
Hope everyone has a great day.
Juannelle
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boy I have been on the rollercoaster this week. Just a few hours after my happy insurance news, I got the call that my oncotype was 22.
This puts me in the zone where chemo is optional, but along with the positive node, it seems like a prudent choice.
This is a hard call for me, I have been very apprehensive about chemo for a number of reasons.
Anyhow I hope everyone is having a good day. Thanks for all the support and concern, it has helped a lot.
Alicia ...any chance you will be at NYC gtg.
Oh yes, and I changed my avatar and screen name. Just wanted something more private. Last time I checked I was not a troll
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Hi everyone. If there is another forum for this, please let me know.
I start chemo on 12/1 (onco score 33) and should have no hair in time for Christmas. Oh goody.
I have no idea about how to find a wig. The thought of going into a wig shop because I'm going to lose my hair is upsetting. I think I would walk in, melt down, and leave.
Any thoughts, ideas, suggestions?
Thanks to everyone.
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cka, Don't be afraid of the wig shops...The ladies are normally nice...They deal with this all the time..I went in before my hair fell out just to look. Try to go at a time when there are not so many other people there, say a Monday morning..Saturdays would be a busy time I think...Every time I was there, I was alone. It is an emotional time for most ladies and I am sure they have seen their share of tears..I think it is good to try on wigs with the help of the trained professionals...even if you decide to get one on line at least you will have a bit of knowledge.
Oh by the way, Welcome..
Michele
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cka-there is a wigs at home service based on long island, where they come to you.
I'm sure other cities have wigs on the go services as well.
They also sell wigs at some mastectomy shops where I am sure meltdowns are universal.
here's one thought--
Maybe start at a costume shop and try on a few crazy wigs (I always thought it would be fun to look like a Japanese anime cartoon with blue tipped hair) and them move on to the realistic stuff. At least you will start the process with a smile on your face.
Good luck--
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I understand the big flea market in Daytona Beach has a booth that sells wigs. Maybe other similar places do too.
I know it has got to be terrible to face chemo and hair loss is just adding insult to injury. My heart is with you.
pam
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Hey to All my favorite ladies!!! I finally got the call and I go to see my med oncologist for the first visit on Monday. Not really sure what to expect? I was hoping some of you ladies could tell me what was discussed at your 1st appt with the med onc. I know I was told by the surgeon he would eval for the need for chemo and possibly do Oncotype test? Any info at all will be appreciated.
Thanks
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Dear Mimi,
The first meeting is crucial just like a first date! Ask him to explain your surgical biopsy report in plain language. Then ask him to provide you the prognosis with or without chemo, what his recommended treatment plan would be, other options and why he recommends the plan he does. Take good notes. Good luck. If you can take someone along with you, that would help.
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renee, my Onco stayed with me about an hour on the first visit, until I had no more questions. She is really good, she takes notes for me and then gives me the sheet with the notes. It certainly is a nice feature. They should go through you path report, what you have already done, surgery, etc and then talk about what you should expect over the next 10 years. She told me we would become really good friends because we would be together for 10 years and she would make sure of it. It will be lots of information to take in, but if you miss something that they tell you, you can clear it up the next time. Because you will probably go once a week through chemo. Good luck on your visit.
Juannelle
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Juannelle, she sound like a great doctor! What a gem!
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She is a great doctor. At first, I was not impressed with her staff, got off to a bad start, but was impressed with her, so I gave them another chance and am glad that I did. When I went for my first visit, her staff was watching a video on the computer and were all around it and not paying attention to the patients. It took forever to get me checked in and they just seemed disjointed. But she was so good, that I just said OK maybe it was just a one time thing. I guess it was, because they have all been so good since. I guess that I wasn't taking into account that they probably do need to have a distraction ever once in a while. They are dealing with critically ill people everyday and I just don't know how they do it.
Hope everyone has a great weekend.
Juannelle
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bump
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Mimi-
Good luck on your first med onc visit. It is crucial that you take someone with you! I went alone and it was a HUGE mistake on my part. I thought I could handle it on my own, but I didn't realize how sobering it was to visit an oncologist. I was having a hard time asking questions and couldn't think straight. Luckily for me, he is such a nice doctor and was very patient with me. Like Juanelle's doc, he stayed with me for about an hour and made sure I had no more questions for him. I made sure I took my hubby to the next appointments I had. My thoughts are with you and I hope you have a good experience with your doc.
I am looking at starting my Tamox on Monday. I keep looking at that bottle in my med cabinet staring at me every morning. I don't know what to expect for SE's and that kind of scares me. I am sorry if I sound like a broken record with this, but this is the only place I can talk about these fears and know I am speaking to women who understand
I am so blessed to have found this site! I don't know what I would do without you all Have a good weekend!
Hugs
Jen
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I put this on the 40-60 thread, but I thought you guys might like it too! It's a smile for sure. (and I am not the biggest pink pusher ever, but for this I make an exception)
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Great video! Thanks for sharing, cookiegal.0
http://www.youtube.com/watch?v=OEdVfyt-mLw