TRIPLE POSITIVE GROUP
Comments
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SK thanks thats great - what about spelt? and grains like quinoa, i love quinoa and i know it is considered a "super grain"
my parents are both italian so i grew up on a med diet full of veggies, we never had desert after dinner, we had fruit! but boy do we love our pasta which is why i try to eat spelt (which is actually really good) instead
no dairy is a tough one i really like my organic greek style yogurt. Ive tried to acquire a taste for almond milk but it just tastes so bitter to me, maybe i will try a different brand
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Everybody, thank you so much. I'm going to check this thread regularly. I'm so damn scared right now.
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rozem - I love pasta too - it is the one thing I really miss - I don't care about bread or rice, but I love pasta! On the diet I am following it is no grain at all, but the anti-candida one that has been mentioned does allow brown rice and quinoa. I also recently found brown rice pasta! Tried it and it was pretty good! I find it easier mentally to eliminate it completely, but this is such a restrictive diet that I follow it for 30 days strictly, then add things in as in the SB Diet for a little while, then go back to the restrictive for another 30 days. I have found that when I add sensible things in, I do not gain back what I have lost - so, yay! Ultimately it always comes down to calories consumed vs. calories burned, so you can tailor it to meet your needs.
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Camillegal you got me.
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Dreamfields puts out a low glycemic pasta that I have used for years. It has 5Gms digestable carbs per serving. Also has inulin (fiber) in it.
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Shore,
Since you didn't have nodes, did you have close margins? Or LVI?
Other than that, I didn't think rads was recommended for MX.
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sewingnut - my SIL loves that pasta too, I have it in my local store but have not tried it.
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SpecialK,
While Rads was considered a "gray" area when you were in tx, now the guidelines are fairly clear. If you were diagnosed today, you'd likely get a strong rads recommendation.
I think it is important to make the distinction between PRE-June 2011 and AFTER June 2011 since the standards have changed almost universally since that time.
Now we know empirically, "After a five-year follow-up, interim analysis of the data showed a greater than 30%improvement in disease-free survival for those receiving RNI. This resulted from a 41 per cent lower rate of recurrences in the breast and lymph nodes and a 36 per cent lower rate of cancer recurrence in other parts of the body."
In short rads to the axilla decreases recurrences and increases over all survival.
Not picking on you sister
....just hoping to make the line of demarcation a little clearer for newer members here. It can get confusing. I've received some PMs from a few newer members who are a little confused about this one-time-gray area. 0 -
I have to say ALL of u have so much discipline about everything u do--it's marvelous I know I don't and beside I've always lived in the gray area for the most part. I admire all of u so.
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I had BC in 2003 with a right MX, micromet in the sentinal node, chemo. I don't remember radiation every being brought up back then. Now with a local recurrence in 2011 on the same side and completely negative nodes, I had radiation (which I wish I had in 2003) chemo and herceptin, which they were not giving to early stagers in 2003. Things are always changing in the BC world!
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Thanks for the replies on my rads question. TonLee, I did have LVI but the MO and RO said no rads if node negative. Second opinion said same. But I was dx in early june 2011 so maybe recommendations would be different now. I don't know how close to chest wall it was - just that it was 7:00 on right side. Oh well, something else for me to obsess over & ask about at my next appointment.
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Yes Kay. The results are extrapolated to MX as well because it involves positive nodes (which has nothing to do with the chosen method of surgery and can occur with both MX and lump.)
Since MX and lump/rads have close rates of recurrence and survival, studies done on nodes, rads, etc, can be extrapolated from one group to the next. Instances where this would not apply is when studying lumpectomy specific issues, or MX specific issues.
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Shore,
I wouldn't worry about it. In two years we'll probably all find out something we did or didn't do during our tx could have saved our lives, or killed us. I take comfort in knowing I am exactly where and WHEN I'm supposed to be.
Here's some info I thought you might be interested in......
In 2010 (November) the Fox Chase Cancer Center came out with definitive findings on LVI.
"By carefully examining recurrence patterns of thousands of women with breast cancer from records spanning more than 30 years, Wilhelm Lubbe, M.D.,Ph.D., chief resident in Fox Chase's Radiation Oncology Department, and his colleagues have now shown that the appearance of LVI in breast tissue predicts the future recurrence of cancer to nearby lymph nodes."
My RO was treating women with LVI long before this study and some of the newest standards came out. He said my tumor had set up its own blood supply. So he was super aggressive in treating it.
I refused axilla dissection....so I got axilla rads too...and I'm glad I did....when I look at calculators like this (the one linked below)....I had a 90% chance of it being in more nodes. I put more stock in this calculator because it is based on a a decision tree predictor study....and you plug in your unique labs.
STUDY: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=33085
CALCULATOR: http://nomograms.mskcc.org/Breast/BreastAdditionalNonSLNMetastasesPage.aspx
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Here's a question I don't think I've ever seen answered. What percentage of Her2 pos ladies are hornone receptor positive as well? Are we in the minority or majority?
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TonLee, interesting (and scary)- I am treated at fox chase in philly and was told by MO RO & BS that because I had negative nodes there was nothing to radiate. I was told LVI was covered by chemo. Wonder why they didn't mention this study done there? I will ask about it. Thanks.
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I had to go back and look at path reports but still can't figure out if it was close to chest wall. Does anyone know what "negative deep margins" means?
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Kayb, the excisional biopsy path says tumor is at the anterior margin, approaches the superior margin, is within 0.1 cm of the inferior margin, 0.4 cm of the posterior margin, 0.5 cm of the medial margin and 0.9 cm of the lateral margin. I don't know what that means and I guess its too late now anyway. After the biopsy, I had bmx and that path says negative deep margin.
Im just freaking myself out over a moot point I guess.0 -
Kayb - lol, yes its making me crazy. Crazier. I think I was confused from the get go because I had the excisional path and bmx path and in my panic last summer didn't get as clear an understanding as I should have. Thank you!
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My bs just told me stop looking at my labs when I get my herceptin. He said If there's a problem we'll tell you about it and do something to fix it.
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I agree with Kay. On this side of tx, what's done is done. Most of this information I tuck away in the back of my head, much like the wigs stuffed in the back of my closet.
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ashla - it is difficult to find this info - if 75% of BC is ER+, and 20% is Her2+ where do they intersect? I can find lots of references to either, but not the percentage for both. I am Her2+++ and 96% ER+
soltantio - I had never been more than 10 lbs. above ideal weight either - until I had BC and so much surgery and chemo. By the time I was done with chemo I weighed the same as when I gave birth! A lot of it was massive fluid retention, couldn't wear my shoes! I tried conventional dieting, but with Femara the weight didn't budge. This is the only thing that has worked for me. I don't have feelings of deprivation by eliminating what I have because I can eat an unlimited quantity of the things I am allowed - and they are actually foods I like. I don't do well by allowing myself a little of something - I just ignore if it I am disallowing it, lol! Besides, if the diet is working I am going to follow it for success. I was willing to try this in an effort to limit things that are not recommended, or are questionable, for ER+ and BC. I have the Anti-Cancer book but have not read it in its entirety yet.
tonlee - do you think I would have had rads recommended after June of 2011 even though I was having complete ALND? I did discuss the node surgery at length with my BS because my positive nodes were not known until after my BMX, at which the SNB appeared clear. The ALND surgery was 5 weeks after my BMX - so we had a lot of time to consider what was the best approach and I was resistant to removing the nodes, but both BS/MO insisted. I was concerned about needing rads in addition to the dissection but they both said no.
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Shore, those measurements simply place where the tumor was in your breast tissue. Anterior is front, posterior is back, superior is above,or top, inferior is below,or bottom. medial is toward the center, lateral is toward the side. It paints a 3d picture of the location. Like is you had a fish bowl, you could describe right where the fish was. Say four inches from the top, six inches from the back wall on the left side, etc. Someone else would be able to put the fish in a matching place in the same type of bowl without seeing the first one. I don't know if that helps or just confused you more. much love.
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I read a poem today and it brought tears to my eyes I want to share it and I plan to read it daily as a mental fight against this..
Cancer I did not give you the right, to invade my body and take a bite. This is my body and with all my might, I will prevail with one hell of a fight. To the cancer inside, I will battle and kill. For this is my body's God given will. To my cancer, these words I do send.... Your life is short and soon will end...
Take care all Praying and thinking of all of you..
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Special k.... I chose bmx to avoid rads, although the RO I met with beforehand said if the cancer was in my nodes, they would recommend rads. If I had done the lumpectomy, they considered me in the gray area at 1 cm.
Also, just finishing my 6th trip for the vaccine. Will be checked out tomorrow. Injection sites are really itchy and red this time. One more trip for sensitivity testing and then I am done until next May.
You guys have been busy the last few days.
Do you know if LE sleeves are recommended prophylacticly? A friend is having a umm on Friday, triple neg and it is in her nodes. She went to see the LE specialist connected to the hospital, and she just automatically told her to get set up with a sleeve. She is having a full auxiliary removal0 -
Amy...hitting the like button
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fluff - I wear the left sleeve prophy (2 node SNB at BMX) for flying/exercise, right sleeve for dx'ed LE. Yay for being done with the vaccine! My #2 was itchier than #1. I should add for anyone who doesn't know that I am also doing the vaccine trial - otherwise that sentence is pretty funny!
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I wear my sleeve on the left for LE. On the right where the 4 nodes were taken I wear it flying and strength training. Considering I only had 10 nodes and no rads on the right, and my mom had LE in her legs I feel I need to be very careful with righty.
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Well, when you get to number 6, you will be pulling out all the big anti itch guns. If I wasn't driving back for ten hours tomorrow, I would take half of a hydoxyzine. If I do that though, I won't get out of bed tomorrow. I'll pop a Claritin in the morning to see if that helps.
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Fluffqueen01 its a good one!
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I have to say it again, and again---u guys are incredible. Whew
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