Calling all TNs
Comments
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Interesting article I received through Google alerts this a.m. At least they appear to be finding out more and more about us:
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Thanks LRM ... very interesting study.
Ladies, I'm going to vent here a bit and if you're not in the mood please skip over. All over these boards I come across threads where women say they chose Mx because they wanted to do everything they could to wipe out their cancers and stop them from coming back.... as if those of us who choose Lx are somehow inviting a recurrence. Brower and others, I know you don't mean this, but please understand how it comes across.
I'm really weary that years and years after Lx plus rads was proven to be equivalent to Mx, we are still seeing the same arguments. (It's very interesting to me that Lx appears to be a far more common choice in Canada, where we have single-payer publicly funded medicine.) Fine if women choose Mx for psychological or emotional reasons, or because their docs recommend it on the basis on multi-quadrant or widespread disease, DCIS or cosmetic reasons - I understand all that and respect it. But could we please not propagate the notion here that recurrence can be avoided by Mx? Because there is no compelling evidence that that is the case! At best, there are some conflicting studies. Here's one, for the record, that suggests quite the opposite for TNs: http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3191
Rant over. Sigh.
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Susan, I love the painting!
Minxie, I am going for another plastic surgery consult at Emory in Atlanta. The surgeon wanted me to wait until a year after rads before I even visited for the consult. I am hoping to do reconstruction with an expander and no flap but guess I will see what he says. I have a really good local plastic surgeon, experienced in reconstruction, who is willing to try it, but my BS was opposed to the idea and wanted me to go to Emory and see what they said about it. My BS speaks his mind and I value him so much for it, so I wanted to follow his advice.
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Thanks for the encouraging words guys... I gues what steams me is I'VE DONE THIS ALL BEFORE. I had BMX/recon in 2009, after my chemo. I can't fricking believe that this has happened to me twice, that I have to go through this bullsh!t twice, and now thanks to rads, I have the date pushed out even further.
Luah... Guess I'm proof that a MX won't necessarily keep the cancer away. But I'd still have done it. I am of a certain personality type that could not function if I still had breasts after a BC diagnosis. I know you're all not like me. Please don't feel that we're feeling superior to you lumpectomy folks - I've had 2 lumpectomies now and a BMX and they're all tough personal choices with no guarantees.
Sorry to be such a crank today. This delayed recon news threw me for a loop. Right after I heard I had to go to an important meeting. I was in my car, covered in sweat and tears, took the wrong way down the highway... and slept for 4 hours when it was all over.
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Welll in my case I did the Lx, chemo and rads and thought that I had done everything I could to prevent it from coming back and it still did. So then a mastectomy. It's all a crap shoot
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I, too, did LX and rads and still it came back. Then I had a BMX, chemo and rads, and yet again it came back. It is most definitely a crapshoot. And I can't help but wonder if it would have recurred at all, had I elected to have a BMX the first time around. But "what if's" get you nowhere, so I try not to think about the "woulda, coulda, shoulda" scenarios.
Minxie - I hear you and feel your pain. When I had my BMX, I wanted DIEP recon but was told I didn't have enough fat. So the PS did TEs. Then when I went to the PS at Dana Farber, I was told that yes, indeed, I could have DIEP. And my RO insisted that my left TE be removed prior to radiation. So I had that surgery and told them to take both of the TEs out because I was going to have DIEP in July. But wait a minute, I have mets as of May so DIEP was cancelled and now I don't know if I'll ever be able to have any type of reconstruction. Yup, I feel your pain and it totally sucks.
That study that Linda posted is interesting and may explain why someone like me has a recurrence while others do fine.
No one really knows, at least not right now. Hopefully, some day, we will get real answers.
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Thanks for the chuckles Bernie & Cocker.
Have my date for rad planning... September 18 - looking forward to getting this last part (fingers crossed) over and done with and then focus of real healing.
((((hugs)))) to all - find your happy today.
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Luah I agree. I too had a LX and my Dr's have told me that with chemo and rads it is just as good as a MX. I feel like I made a good choice and I don't regret my decision. It may or may not come back but as of right now I am NED!!! I feel very confident with my decision and feel like it has saved me from having to have more and more surgeries.
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Hi guys, just a quick shout out.
Got punished for my casino trip. Caught an awful bug. (slept for 34 out of 36 hours the first day of it). Finally to the point where it's bearable and poor Mom caught it. Yesterday it put her into respiratory distress and off to the hospital she went. She's doing better now, but will be in for a couple days. Her doctor heard my cough and asked if we'd like double accomadations, lol. Thinking of you all and sending good thoughts your way.0 -
Luah - Your post makes a very good point, especially for our newbies. I'm one who is having a healthy breast removed at my own request. I understand completely that it will not prevent getting cancer in it. I'm doing it because I am so very uncomfortable wearing my prosthesis. Running around with one breast dangling is not a good option. My bc breast had tumors "all over the place" and could not be saved. So there was not choice for me and at age 68 I really didn't care. I do understand your "rant." I think our culture of "if it's bad, get rid of it" plays a big role, and the medical field needs to put stronger emphasis on preservation.
LRM - Thanks for the study article. It's very hopeful for our daughters and granddaughters.
Annie and Bernie - Thanks for the laughs. Keep them coming.
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painting,dormac,fighter, my hair is about 1 inch in length (almost 8 months since last chemo), still kinda thin esp on top-but i can feel stubbies-yeeeeaaaa! it came back white/grey-white on top. at 7 months post chemo,i used the 28 shampoo dye-med brown on it, hoping it would appear thicker! OMG- big mistake,tried to wash it out ,internet suggestions- OMG ended up with orange looking hair! I resisted the urge to do anything else for 2 months,i went to my salon,had her color it and trim off some of the fuzzies! Have to say looks a lot better,still not thick or long enough for me but it's getting there!! To feel the wind in my hair was like a miracle to me,didn't think it would ever happen!!!
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Kathryn - See there.......Momma said you shouldn't go. Maybe you'll listen to her next time. Hee hee
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Kathy - yikes! I hope both you and Momma are feeling better soon. Not good to pick up a nasty bug at the casino - you don't need to be that kind of winner...lol!
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DorMac you got it right.....took me a pause to figure it out.
Bernie Ellen great laughs from you.
LRM216 thanks for the great article. This is such a wonderful resource.
Christina 19 ...I guess 2 heads can be better than one...who knows.
Tazzy...congrats it gets easier from here.
Kathryn...oh so sorry... sounds like oyu only get to lose your money to the medical system this time.
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Annie & Bernie,
Thanks for the laughs!
Kathy - I hope you and mom are feeling well soon. Sure hope she isn't blaming you!
Belle - sorry your hair didn't turn out as planned. I colored mine a few weeks ago. The chemo had taken so much pigment out of my hair, it didn't give me great results either.
Minxie - calming thoughts your way!0 -
LX or MX or BMX is a personal choice. For me I knew I had to have the BMX even though my surgeon told me he'd "get it all with a lumpectomy" and he said "the 5 year stat is the same for lumpectomy with chemo and rads and mastectomy with chemo". I just knew that for me I could not leave a breast and have the worry of having the breast (or breasts) hanging around. In MY mind I did everything I could to fight this beast. If I choose to believe that I am limiting my risk by having a BMX then so be it. I would never expect anyone else to feel bad or like I am suggesting that their cancer is at a higher risk of coming back then mine because they had a lumpectomy. This journey is so personal and we all need to do whatever it is that we need to do to ensure we gave this beast the best shot. I would never want to look back and think "I should have......I wish I had of". For me that meant getting rid of my breasts. This journey is SO much psychological/emotional that I knew I had to do the double mastectomy. After the chemo is over and life moves forward, all we have are ourselves, our thoughts, our worries, our fears. It helps me in MY journey to know that I did everything I could. Also it was a way for me to control something when so much is out of my control.
Luah......I am sorry if you are offended, that would never be my intent. Please understand though that people thoughts and feelings that they express are not directed at anyone in particular. I'm sorry if you were hurt by this. It's a lesson learned for all of us to be aware of how our words may affect and hurt others.
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Born: Be assured I am neither offended nor hurt, nor do I take it personally. I'm just angry when comments suggest, contrary to medical evidence, that Mx is the surer way to fight this disease. I think we do an enormous disservice to women who visit here, especially newbies, when such comments are made. And it disrespects the very valid, evidence-based choices that other women make.
You're right that this journey is very psychological/emotional... and we ought to be very clear, as you have been, when those aspects -- rather than evidence -- are swaying our decisions. That's all I'm saying.
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Luah - one thing I have noticed on BCO is that some people are very willing to pass off as fact something that someone else just gave an opinion about. It reminds of the game "chinese whispers" where information changes as it is passed down the line. I don't think anyone is deliberately misleading, it's more thaat they believe what they read (or think they read) on the boards and it is often unsubstantiated.0
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So true gillyone.....takes a lot of thinking to figure things out.
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Luah- If I had had the option for a LX, I would have done it-no question! As it was I had both IDC and widespread DCIS so there was no choice, but to do a MX. I think you are right statistically, no difference. It really is a crapshoot! A crappy crapshoot!!
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Gill: Thanks so much for that - I agree!
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Good morning ladies. Well I'm back to typing. Fingers are still not right but I can type better than I did a little while ago. Hopefully they will improve with time.
Inmate -glad you are feeling a little better. Hope you aint eaten by a crazed penguin you could give him indigestion lol. Glad you are enjoying your time with that gorgeous little Baker man.
Lovelyface - glad you got a laugh with the cat. This is what we all need to help us through.
Painting - I just love your art. You are one talented gal.
Bak94 - wow a 9 year survivor. You send us all hope. I know what you mean about the male gyne onco. They should all be women.
Beelleeast - my hair is finally growing again. Coming through salt and pepper. I thought about dyeing it silver but have heard a lot of horror stories about no pigment from chemo so might just wait a while cause I don't want to end up green or some guastly color.
Dorman - my 46th anniversary is coming up next month. Only seems like yesterday......
Minxie - just hand on in there girl they say patience is a virtue!!
LRM216 - thanks for the article. Seems like triple neg is causing quite a bit of interest lately so lets hope.
Tazzy - good to hear you have a rads date. You will sail through it. Last leg mate....
Kath - I knew you were at that place and why you haven't been on here. How many times must I tell you to keep away from that bloody casino. You know its not good for you. Hope your mum tells you off too lol.
Luah - I think what ever surgery we have we think that this is the one that is going to beat the cancer crap out of us. I was not given a choice it was MX and that was that but I often think if I had had an LX and the cancer came back they would have more to take away whereas if it comes back in that area there is nothing to take away for me. I have noticed that lumpectomy seems to be given to American women more which is good in a way cause why take away what may not need to go but having said that lots of ladies here have a lumpectomy as well. In my own treatment I just wanted the cancer to be gone so didn't question the MX until after but too late now. I suppose the cancer was extensive and that was the better option for me at the time. I think, we all think and hope we have done the best for ourselves that we could given the circumstances at the time. I'm like Jan and thinking of having the other breast removed (1) so it can't come back in that breast and (2) because I think it is ugly with one swaying breast and I would rather be a flat top like Karen. I think it is personal choice given what the doctor says and we should never put down any of the surgery or question a decision just because we didn't have that type of treatment. I personally think there is good and bad for each of the surgery types and everyone should base their own personal decisions along with their oncologists advice, on what would be the best option for them. I hope I haven't offended anyone with my words, no intention of doing that.
Have a great day ladies. Keep well and stress free. Hugs to all. Annie
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Today's chuckle
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One other thing ladies. Regardless of all the treatment I have had I never have felt free of cancer. I feel like I am a ticking time bomb just waiting for it to rear its ugly head again. Hopefully I am wrong and this is just a stage I am going through because there doesn't seem to be anymore treatment after rads. Annie
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Oh Annie..... Life is a ticking time bomb.... Lost a sister at 28, a brother at 47, and my Pops who was 59, and none of their deaths were cancer related.... I am the very first cancer dx in my family. So, we never know when the truck will hit or the tornado will wipe us out or the heart will stop ticking, so we live, love and laugh while we can, right?!
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Love the Moo Cows! Thanks for the chuckle :-)
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I have noticed with the controversy over lumpectomy or mx,"just my observation not science" looking at the footnotes on post, it looks like a lot of women have a lumpectomy only to return in a few months and have a mx.
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Isn't this gorgeous ladies. Just love her slippers. Hope I don't look like her in the mornings at the computere but got a sneaky feeling I do!!
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OMG Annie! I work in my PJ's most days and get dressed around 3..... so I'm sure this is a picture of me most mornings! Too funny!!
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Ladies I have my lx with snb in the morning...first step for me. I am a nervous nelly. Wish me luck!!
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