CALLING ALL STAGE I SISTERS
Comments
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DebbieSawyer,
Lymphedema was my biggest fear, and with only three nodes out, I got bug bites three weeks post op and my hand swelled up, and sure enough--lymphedema.
Binney, who is the guru of the lymphedema website, wrote about her first surgeon who forbade her to use her arm above the elbow for the first weeks after surgery and she did very well, it was after her next surgery that she developed problems.
Exercise doesn't prevent lymphedema, so I wouldn't worry about not exercising while you're in the midst of all this.
No more horses for me--he was really my daughter's, but was a family horse because he was so calm.
Kira
I post and then I see that Sue snuck in before me--
Sue, I hope your day at the mecca went well (his mother must be SO proud....). Your posts are so funny, they just brighten my day.
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Hi Sue!
Thanks again Kira. I've been reading some of Binney's posts as well, about lymphedema.
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Hmm, I brought my sister with me to the LGFB seminar. She does not have cancer. She did not recieve all the goodies that I got, but she could still attend. It was fun.
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KIRA, this is going to make you faint. i closed up the Maine house this AM. Saw all the kids and grandkid quite a bit this wk. Was "killing" my own lobster (they are 499/lb in NH) (steam in about 2 inches of water for 10 min)and the cover to the pan kind of adhered, i cannot explain why or how, it was just stuck. i pulled the cover off and I cannot even imagine how much hot water/steam leapt out of that pan at me........and have a blister on my wrist that scared the $%^$ outta me. Was up all night w ice packs, ibuprofen. I had to go under my house, literally CRAWL, to do some stuff to the plumbing. I knew I had sterile bandages here in MA so there I am with my pliers, LLBean windup flashlight (those are cool by the way, never need batteries and they are ten bucks) , my right wrist wrapped in a clean towel (good thing I am left handed), double bagged with baggies (figured they were clean) and all i could think of was YOU and the LE risks. Sheesh, what a day.
But that was one tasty crustacean. Sue
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Hi Everyone,
I love reading all your comments. I just turned 60 in Sept. I was diagnosed last March from my yearly ultrasound not mammogram. The Rad MD said that if I just had the mammogram, this wouldn't have been detected. Tnx god for the Ultrasound! Anyway, I live in the OC, Newport Beach to be exact. I love the beach! I have a few questions I was going to throw out to you all. Any input would be helpful. I LOVE my wine. Is it bad to drink a glass of wine everynight if you are ER+? I've heard that this is NOT good for you. I just started taking Femara and I got a letter from my insurance saying they will not authorize Femara but they would authorize Arimidex. So now I have to switch...not sure how that will go down because I am having no SE on the Femara. Any thoughts? If I start the Arimidex and it reaks havic, I can go back to Femara and they will authorize it. I am experiencing a little leg and neck pain the last two days. Is this normal? Any others words of wisdom you might want to pass along.....feel free. I had a lumpectomy and a re-excision because the margins were not clear, six weeks of rads, no chemo. This has been quite a jouney. I want to wish everyone good health for 2010. Thanks for sharing everything. It's great to be here and I have lots to be thankful for this Turkey Day!
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Meece - no need to thank us for "patience" as we all learn from each other as we travel this road together. It sure sounds like you went through hell - geez, what a time to have an inconsiderate team of professionals. Hopefully, you will NEVER have to endure anything like that again. Special hugs being sent your way.
Linda
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KT
my onc said wine was ok......should i have told him I buy the 4 L kind with screw off caps? (just kidding)
I am retired nurse casemanager for nation wide ins co. The squeaky wheel usually gets the grease. Did they offer you an appeal re the femara denial? I know Arimidex is outrageous in price. If you are doing well on Femara, write a lette to either your insuror or the appeals dept. or have your doc intervene. (Perhaps your doc can call and discuss with either the pharmacy dept or the medical director as to why you need this med. If it is working for you this is nonsense. Arimidex is ten bucks a pill. But like I said, I have no clue as to the cost of Femara. Is there a website for your ins co? I can go in and request a cost quote on mine.......not sure if you can do the same. You also need to check pharnacy benefits. How long have u been on this med and what the heck is the deal now. You are doing well on it and it is disgusting to me if this is some kind of cost savings measure. Ceo's make big bucks and like to screw the members. And I am sure your doc has the time to spend on the phone with such nonsense.
Of course my always BEST advice is to call your insurance company and request a casemanager. I was only allowed to casemanage people who needed a lot of education re their disease. I did cardiac and know nada about breast cancer. The very first thing I did when I got the dx was to request a cm and she was so very helpful, I cannot even begin to tell you! told em i was really dumb about cancer. (say whatever it is you have to say to get some intervention from your insuror)And most casemanagers are nurses. And most nurses woud give you the shirts off their backs to help their members. I know I would. (got in trouble sometimes but slept well at night)
As far as I can say about aches and pains.......sheesh, I am 62 and different parts of my body seem to attack me for no particular reason.
I am appalled at these insurance companies who take your money and then take their members over the coals. That's why I retired last yr. Was SO SICK of having to deny something for some bogus reason. Let me know if ths info has helped u......you can also check the femara web to see if they wil help u out on the cost...........take care, Sue
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All of you wonderful women are killing me!!! A couple of days ago, I had to stop reading posts about cake, cake and cake because I was suddenly overwhelmed with an insatiable longing for CAKE. Surely, I thought, somewhere in my kitchen must be something at least similar to cake....had to settle for a cracker with peanut butter on it. Major bummer.
My computer was seriously ill for 2 days so I couldn't stay up to speed with these posts (which I love like none other on this site).....so tonight I'm back for the first time and not only is there discussion of cake but also of LOBSTER. I am drooling all over the keyboard.......
My Arimidex-laden body is putting on weight through word/imaging osmosis......However, the images are most delightful!
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Welcome ktmimi2! I have not heard that wine is bad for ER+, but someone clue me in if I'm incorrect. I am continuing to have my nightly glass! Did you ask your onc about it? I can't comment about Femara and Arimidex, since I've not taken those, but others here will probably be able to answer your question. I had a lumpectomy, waiting for re-excision in a couple weeks, due to not enough clean margin taken. Then rads. So you're just ahead of me in treatment, and yes what a journey. If you find out more about wine and ER+, let me know!
Debbie
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My name is Karen and I am stage 1. It will be 2 years for me on 1/31/08 since my dx. I am currently NED and having a mastectomy on my other breast with reconstruction to both on 12/18/09.
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I can't believe it. This is the one week anniversary of this thread and we are into page 10! I went to work this morning and had nearly two pages to read when I got home! My DH is gonna wonder if he's ever gonna get dinner. Ofr at least dinner on time.
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When I was recently diagnosed with breast cancer, a dear friend of mine (and survivor) told me that, when it was all over, I wouldn't trade this experience for anything in the world. I see what she means!
There is a sisterhood. There is a hope. There is a bond. It's too bad it takes a little bit of tissue to do it, but I'm glad for it.
I remain positive. Although I report my HER2 status as negative, it is indeterminate (2+ out of 3), so we are awaiting the FISH results to determine if I will exchange my taxotere/cytoxan regime for taxotere/carbiplatin/herceptin/neulasta for the second cycle. I will be all right, no matter what.
Glad to join you all!
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Hello Ladies
I am so glad to find you here. I am Stage I (microinvasion), Grade III, with extensive DCIS. Had lumpectomy, that is when they found out more extensive and higher grade, plus very close margins. After consult with radiation oncologist who offered me large field and 36 rounds, I picked up the phone right there and made a consult appt. with the reconstructive plastic surgeon..never looked back after that moment, skin sparing bilateral mastectomy, expanders exchanged for silicone cohesive gel implants. Things went well, no complications. I am 59, fit and healthy. BUT, my SLN biopsy was compromised due to the previous surgery (lumpectomy). Seven nodes were removed, ONE had 7 isolated tumor cells. At that time (Sept. 07) considered node negative. Recent studies MIRROR from The Netherlands and others in U.S. dispute the "Node Negative" and give the absolute recurrence risk for women with ITC without adjunct therapy at 10% within 5 years independent upon tumor, etc. status. Due to quality of life issues, I declined aromatase inhibitor (strongly er/pr positive. Wondering if others had ITC and what the tumor board/oncologist recommended. Geri 0 -
Good evening all,
Linda....thank you for answering and I will see what my area has to offer for LGFB. Was diagnosed within weeks of each other with someone I work with and will see if she would like to go also. Again thanks.
Now about the wine.................... I was told that it can raise estrogen levels and if you were estrogen positive it may not be a good idea. Who knows.
Pat
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Hi Ladies,
I'm almost 3 years from my dx with Stage 1 Invasive Ductal Carcinoma. Did 4 rounds of AC and 13 rads and finished tx on June 22, 2007. I suffer from chemobrain, combined with Tamoxifen brain, and menopause brain.
I am, thankfully, NED, for which I thank the Lord each day.
This site connected me with the most amazing women, bonding together as we went through our chemotherapy in March 2007. I encourage all of you join or start a group as you continue on the journey.
Christine
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WELCOME TO OUR NEW FRIENDS WHO JOINED US TODAY
Edelstoff bbsoulful2 scrapmom40 ktmimi2
I am on Femara and the cost for 30 day supply is $365.00 its like $12.00 a pill.
Arimidex is what $2.00 less per pill.
Sue....How is that arm of yours? First I thought the lobster jumped out from the pot. I had a experience years ago lol I was trying to put the crabs in boiling water one of them decided to scape, falls on the floor, my daughters were very young they are screaming 1 locks herself in the bathroom the other one gets on the table still screaming and the crab is having a walk on my carpet, didn't know how to handle the situation. I threw a big dish on it.....
Every time we talk about that day we go hysterical.
Sorry Ladies this isnt really the place about the crab story but you can blame Sue lol lol
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My news tonight is that I took my first Tamox. tablet. I'm in the 5-Year Club now. If it causes me to have some hot flashes, how would I know? I'm at the age where I'm having them on my own anyway. So maybe it's perfect timing.
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Hello friends!
I have been a member since 2006, but just happened upon this thread.. Im 3 yrs out from dx, and so far the only change is 2 bx's this past yr, but thank God both b9. I've had lump/rads/hyst/ooph/femara (currently on long holiday from that) and Zometa every 6 mo, for osteoP.
Welcome to all newcomers (glad you found us) and wishing everyone wellness and peace. God Bless. Angie
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Hi Angie....I get bone density test every 2 years ( FEMARA ) I have the beginning of osteoP. Dont know how to spell it, My DR wants to wait another 2 years to give me Boniva. Is Zometa an injection form? Thanks.
Sheila
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hi,
i am also a 1.9cm person...
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Hi InfoSeeker...I loved your introduction. Welcome
Im a 1.2 cm person
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hi all...
everything i know and have been told about alcohol is that it is okay in moderation.... i was told by the hospital that this mean no more than 3 - 5oz glass of wine per week... i really miss my wine as i use to drink more than that for sure...lol
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Hello Neighbor Scrapmom40,
I live in Chelmsford.
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look good feel better is for everyone ...regardless of stage...i went with my daughter and it really did make me feel good...
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LGFG is a great program. I went alone and felt so alone. If you can bring someone...do it.
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This is my first time here. I was dx in 9/09, fought for over a month w.ins co to have DIEP done. They finially approved after making alot of noise. I had unil/mx (skin sparing &nipple saving) with immediate DIEP on 10/29. I was 4 days in the hospital. Surgery 16 days ago and I feel wonderful! Actually, I the hardest part was standing up straight the first couple of days and dealing with the drains. Had 3 drains, 2 removed at day 6, last one on day 8-felt much better after that! I still do not know if I need any chemo, waiting on my onco test score. I know I will need to be on tamoxafin or something. Not looking forward to that, from what other people have told me it has aweful SE. Also, I do get migraines alot, not sure how they will be affected or what to do the lessen them. Anyway, that's where I am! Love all the info if get from here.
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Welcome nmi. It sounds like you have a good outlook and will be healing quickly. You are going to find so much information here it will make your head spin.
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Thanks, I love it. There is nothing like hearing from and sharing with people who are going through or been through it.
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Hello ladies, new to this forum. Thanks Geri for your post. It raised a couple of questions that I had. I had multicentric DCIS with microinvasion (3 different areas) it was high grade but I was to understand that all DCIS was staged at grade 0. A lovely sister here I think it was Beezer told me that any mircoinvasion was now considered stage 1. Is there anyone else that has a thought on correct staging? I really guess it doesn't matter since the cancer was taken with the breast. I did the mx and "immediate" reconstruction that should be done by March 2010
I also chose not to do any post mx adjunct hormone tx, Tamoxifan, Femara, or Evista as I was to understand that since I did the mx, the chance of recurrance was rare and that DCIS was not going to "move" or recur in the other breast. If I developed DCIS there, it would be a whole new cancer, and that the drugs would not prevent a new DCIS from forming, per the oncologist. I guess my question is does the microinvasion make a difference in regards to the DCIS dx? Thanks Jan
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Thanks, it helps to be reminded that this we truly have our own journey with different stories to tell. (does that sound corny?) To be reminded SE are not always the same.
How is it determined which hormone therapy one takes? (tomax, femera, amid)
How long does it take to get the ONCOtype test results? It has been 16 days since my surgery. Surgeon said he would call when he got them,not sure if I should just wait to hear from him, or call to see if they have them. I am very anxious to see what it is.
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