Calling all TNs
Comments
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Lovelyface, I'm sorry, I suffer from Chemo brain BAD. Have you already had our biospy or talked to your BS yet? Just thinking about you.
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mccrimmon, thanks so much for thinking about me, so sweet of you. I am talking to her this afternoon. My family and I can't wait to hear what she says. I will talk to her about whether I should have a needle biopsy or excisional biopsy, take this stuff out. I will update you all tomorrow. Thanks so much for remembering me, even with the bad chemo brain, I know what that is like.
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Good luck at your appt Lovelyface.
I'm thankfull I have a very easy going boss and co-workers. They choose to make light of my chemo brain instead of get annoyed when I forget everything they ask of me. :{
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Ok. my best friend is a goof ball! My birthday is not until October, but she got me tickets to the Van Halen concert in May. I loved Van Halen - 25 years ago! She talked to my husband about it to see if he wanted to go too (he doesn't). So it will be me, my friend and her husband.I can't remember the last time I went to a concert. Do you think they will be embarrassed if I keep saying the music is too loud! It will be fun- something different!
Sending good thoughts Lovelyface and Bak!
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TifJ - what fun!!! You may want to tuck a couple of cotton balls in your pocket
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Good idea OBXK!
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TifJ -- I'm jealous!! I loved Van Halen back when it was David Lee Roth!! Have a great time!
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Just as an FYI regarding the cost of the BRCA1 and 2 tests. I just looked at my claims summary and the cost that the lab billed my insurance company was $3,177.37 and then another $687.26 for something called: Molecular Diagnositcs.
Wow.
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Char- David Lee Roth is touring with them again- should be good! Kool and the Gang is the opener. Kind of a weird matchup, but i like them both!
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Char- David Lee Roth is touring with them again- should be good! Kool and the Gang is the opener. Kind of a weird matchup, but i like them both!
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Char - isn't that price crazy? I think I pay the $160 a month, for 60 months! They should never had been allowed to patent that gene. If they had not, the cost would be around $600.
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I just came back from the surgeon. She recommended I do the needle biopsy. But I told her I would rather do an excisional biopsy. I asked her to remove this new area of enhancement, as well as clean out my prior surgical margin (where they had residual bad pre pre pre cancer cells) to which she agreed. So I am going to have a small surgery very soon, and wait for the most scariest moment of my life, to see what the pathelogy report indicates, cancer or not cancer. The surgeon said that enhancement does not mean cancer. She said your whole breast could be enhanced, but that does not mean cancer. I told her that all my doctors have told me they are monitoring me very closely, however, I am shocked to experience that another cancer diagnosis can happen just like that, in an instant. An MRI, enhancement, and lo and behold, Cancer. She said, yeah! It can happen just like that. Then what is the point of MRI, Mammo's, Ultrasound? What is the purpose? To catch it early, I guess. But one would have to go through the chemo anyway, even if it is early. I don't understand this horrible, horrible disease. Fuck you cancer, get the hell out of my life and everyone's life, whoever the hell, the evil entity that you are! I hate you.
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Lovelyface:
Sending wishes for good results (and an easy recovery to you).
Bak:
Also hoping for all good test results.
Stay strong, ladies, stay strong.
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Lovelyface..sounds like you have a good onc...encouraging..but...letting you know what the possible scenarios could be..when I had my calcs in my "good" breast..I told my BS that I wanted both of them hacked off NOW...he was like..that's a little extreme...IF it is cancer..you will just have to do rads...I dunno Lovely..if it IS and hopefully it is NOT...treatment may be mimimal..
That probably doesn't help...and it sucks you are going through this now..but like Linda says..stay strong..and you will.....
haven't done the best thing that happened to me today for awhile..but I jogged 2 miles (though slowly)..and went out for dinner with some friends and had some great chicken wings...I'm addicted to those things...honey BBQ..at an Italian restaurant.none the less...
Good for you Fighter..no clothes to wear..good stuff..you need to go shopping...get some skinny clothes...that's why I got 5 wings instead of a pasta dinner..my clothes are fitting just a little too tight lately.
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Lovelyface-yeah, so much for being watched closely! My insurance wouldn't pay for mri's after being 5 years cancer free. Well, year 8-stage 3C/4 new cancer in opposite breast! Don't let that scare you though, I am brca pos and should have had bmx back then. Glad you are getting it out and hoping it is benign.
I did not get another phone call from the cancer center today, but did start pt. I asked if they confirm appointments in the late afternoon, evening and they said yes, so it might have just been a confirmation call, but no message!
I am much better mentally today! Started the ACTIVE program through my hospital, includes assessment of my physical status, pt and works on getting me back into shape. That is my good thing for the day! The doctor was so nice and helpful. I guess I am a mess! He said I have weakness, bad range of motion but said I can get much better if I work at it.
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TifJ: That concert should be fun. I saw Van Halen, like, 25 years ago lol. I recently saw the Goo Goo Dolls, which I enjoyed.
Lovelyface, I am sorry you have to go through another surgery. I agree with the "F U cancer".
It does seem to be an evil entity that we're up against.
Titan, great for you, jogging 2 miles. And bak94, that ACTIVE program sounds good.
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Bak - so sorry to hear that there was a 8 year gap. My God, I was thinking of relaxing a little after 5 years but it seems like one can never relax after this thing strikes you once. I am still not getting a mastectomy, but just getting some more breast tissues taken out. When I had an excisional biopsy last time, the path. report indicated that I had those bad epithelial cells remaining at the surgical margin. That is what the surgeon will try to slice out in addition to the enhanced clumped thing (scary). They don't normally take those cells out by surgery, not even sure if insurance will authorize it, but they normally watch them closely. They may become cancer or may never become cancer, I was told. I don't know what it means to watch it closely. I just want them sliced out and see if there is any possibility of getting clean margins this time. My surgeon has agreed to do the surgery, so I think we are on the same understanding (I hope). I have no idea how this is going to turn out. Did I tell you guys that my mammo and ultrasound are very clean reports, there are no signs of any calcs, enhancements, nodules or anything. My rad thinks that they are no longer dense and are at a very clean and good stage. This doesn't make sense to me. How can the mammo and US be so clean, and yet there is an enhancement on the MRI. I truly pray and hope it is false positive. I am getting a clip put at the site, a mammo guided wire to be placed there and then surgery to remove a chunk. She said it will heal pretty quickly. It is nothing like a lumpectomy. The downtime will be just a few days, so I am hoping it will be something very small. The scariest part is to hear the results of the pathalogy report.
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Lovelyface,
Sending you hugs, love, and support! I'm sorry you have to go through this and hopefully you will have all benign results!
Titan, I can't imagine running 2miles at this point, even at a snail's pace - but I did walk Sat and Sun 2 miles each day. I've been working too much this week to do it again but I'm going to tomorrow if I can.
I have my first mammogram on my remaining breast later this morning (it just turned midnight here) - it has been one year since my diagnosis. My daughter is going in to get her mammogram 15 minutes before me. I'm anxious because I get all these twinges of pain in my breast and underarm on the non-cancer side with the chemo and I think from having the port. I check all the time and have loads of breast exams by every doctor I see and no one has felt anything, so hopefully everything is ok over there. I never had the problems with that breast that I had with the other - on the cancer breast I had cysts drained probably 3 times in my lifetime. Wish I'd known that was a risk factor, I might have caught it earlier.
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Lovelyface***HUGS***I know this is a scary time. We are all scared. I am just up and down with my emotions lately. This too shall pass.
TifJ-enjoy the concert.
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Bak - so glad your feeling better. I'm sure once your really get into the ACTIVE program you'll feel more and more like your old self.
Lovelyface, I'm sorry you have to have another surgery but glad they are doing as you have requested. I don't know, if all of your other tests came out clean, it sounds to me like it's a false positive on the MRI. That's what I'm praying for!
Good thing that happened to me today. Today marks 1 year of being smoke free! I can't believe in another 2 months to the day I'll be 1 year from diagnosis.
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Thanks everyone- the concert is not until May- so that gives me time to relisten to all the songs and get the new ones! I can't believe at 46 I am excited about seeing Van Halen again!
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I finally found some information regarding recurrance rates for TN. It's from the American Society of Clinical Oncology and it's based on 1 study - The Georgia Cancer Specialist Database (2003-2004) was used. The study sample included 1,572 patients, with 26.3% (n = 414) being TN. Five-year recurrence rates were 18.8% for TN and 11.2% for non-TN groups.
This is not as large of a gap as I had originally thought. I thought our recurrence rates were much, much higher.
Here's a link to the paper: http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=44218
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Thanks everyone for your good wishes and prayers.
Char - thanks for the study paper. Yes, there isn't that much gap between the two types. I can't wait for my 5 years to be over. At least that should give one some relief from worry, I hope.
Mccrimmon - Congratulations on being smoke free! That is a huge accomplishment, yeah! I will count the the two months with you, one day at a time, it will be over very quickly, and then you would have crossed off one year out of the five, after which TN's are supposed to be at less risk.
Christina - We are waiting to hear the great results from yours and your daughter's mammograms this morning. I have all sorts of pain and twinges on my non-cancer side as well, not sure why. One doc had advised patients to massage their breasts. His theory is that toxins get lodged in our breast tissues, and by massaging you are giving it some circulation. Since then I massage with pure coconut oil every night, at the same time I am able to feel it if there are any abnormalities. How old is your daugther? Also, please let me know how many images they take of each side.
Suze - I hope you are having a great vacation. We can't wait to hear about it.
LJ - how is everything with you? Still feeling good, still getting better and better with the Halavan?
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YAY!! No problems with the mammogram of the remaining breast today! One year out today, too.
Lovelyface, that is interesting about the toxins. I get all sorts of twinges, including a sore muscle lump on my non breast cancer side. I can pull the skin and muscle away from my ribs and that is where the soreness lies - maybe it is from compensating by overusing my right side as I think I still tend to "guard" the side where I had the MX and rads. On the left side, my prosthetic pushes against my lower former breast area and makes the ribs sore. I think I am going to try to get a lighter prosthetic solution or go ahead and get the implant taken out of the remaining breast so I'll be an A cup on the right. I think I can have that done as an office procedure as the implant is saline.
My daughter is 35 (I was a young mom- 15.) She doesn't get her results today, but luckily she is followed closely by my oncology surgeon who is my favorite doctor of all - he is extremely cautious. She has had at least one hard biopsy, a breast reduction a few years back, and a couple of cysts drained. What really scares me for her is that she is on bc pills for endometriosis. No matter how much I preach to her about them, she wants to take them because without them her endometriosis is really painful. I'm just afraid of the risk. We are extremely close and work together although she will probably be changing jobs within the year to work with animals.
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Lovelyface - I'm sorry you have to go through this, but it sounds like you have a good surgeon. With all your other clear scans, I'm thinking this could be a false positive on the MRI....keeping my fingers crossed for you!
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Lovleyface-sounds like it will be good news for you! I think it is great that you are being pro active though.
Soooo, my nurse from my mo's office called today and said she said she was contacted by my pharmacy. Seems that the infectious disease doc prescribed a drug-diflucan that can react severly with lovastatin, which I have taken for awhile!!! Good news is that I ran out of lovastatin because the mail order took longer than usual, so I have only taken them for a couple of days together. I have been feeling very achy and fatigued, so much that I get tired walking from the car to my doctors appointments, and the rehab doc did strength testing on me and said I was weak. It all could be from those 2 drugs together, as I had not been quite this weak before, even though I was tired. My pharmacy caught it thank goodness!
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Thank goodness it was caught! It could have caused you even more trouble. Yay for your pharmacist!!
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Thanks for finding that study Char...I'm too lazy to look it up..sorry ...but when did the 18% happen..during the first year..or spread out throughout the first 5 years?
Ok. Ok..i'll move my rear and check out lol
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Ha ha, you are funny titan! I will look also....
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Lovelyface - hoping all will be B9 with your biopsy.
Two years ago today I had my last chemo. I thought of that tonight when I was at the gym and I was on the bicept curl machine. I looked down at my arms and recalled two years ago having the IV ines running the chemo into me. It's not something we forget. And, exactly one year ago today my DD got her braces, which were to be on for 9 - 15 months, according to the Orthodontist. Well, here was are a year later and she still has them on so looks like we've passed the "9-12" mark. Anyway, I wanted to stop in and celebrate my chemo anniversary with you lovely ladies. Good night!
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