Calling all TNs
Comments
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Violet7 - you are the first person that I've run across that was positive with your original biopsy and then negative post surgery like me. I have been trying to get answers to how this happened or why and no one can come up with anything. A mystery for me too. So annoying not knowing. My original biopsy was even retested and still came back positive. And my post surgery was also retested and cam back negative. I am trying to accept this, it would just be easier if there was an explanation that made sense.
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my onc said that during biopsy, they can take just a spot that is hormone receptive. BC can have multiple characteristics. I had ALMOST TN in the right breast the first go round.... but just enough er receptors to mimic er+. The tumor in my left breast was very er+. If the biopsy only got hormone receptive cells, but the majority of the tumor were not, then that explains the results you both got. Its definitely confusing, but I guess that's why the oncs get paid the big bucks.
don't sweat this diagnosis ladies. Advances are being made every day for women like us. More and more focus is on we TN's and what can be done for us.
So smile and laugh........ it's been proven that laughter IS indeed good medicine.0 -
Violet - I had my surgery on a Friday afternoon so mine probably did sit in the lab all weekend! My biopsy didn't even show cancer so I don't have any receptors from before to go by. Mine showed only Atypical Hyperplasia....the invasive cancer was an added surprise to the package along with some high grade DCIS after the surgery.
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Stephanief..glad you are doing the parp trial...lots of info on here about that...also..did you hear about the vaccine that is coming out from Cleveland Clinic? As far as I'm concerned..bring it on...there are thousands of women willing to try it...I'm trying to not get too excited about it but I sure wish we all could get that vaccine TODAY!
About the weight issue...I was told to NOT lose weight because I was too thin at the time..so I ate and ate and ate and ate and ate... now I'm paying for it...20 lbs. later...It is just not easy to lose weight any more..used to be I would just cut back some and lose it..doesn't seem to be working this time...oh well..fluffy is good...
Violet..was wondering where you were! You sound good...I bet everything will turn out well for you...
And Monika....it is so very easy to freak out when you are first diagnosed..we have all been there, done that.....alot of us on this thread are just starting with this junk, or in the middle of it or just starting to get our "normal" lives back...alot of times when I reading what everyone posts I go from laughing to crying all in a couple of minutes...
Cancer sucks..but meeting all of you does not.
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we aren't fat, we are voluptuous.
(rakes in another scoop of mint chocolate chip ice cream with fudge stripe cookies crumbled on top, smothered in hershey syrup.) YUM
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I just had the best vanilla ice cream cone at Costco! I was buying one for my 10-year-old and couldn't resist. Yummy!
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I just gained 5 lbs. reading that.
Sounds sooo good. 0 -
Well..I'm very voluptuous then..sounds good to me...just finished off a couple pieces of the world's best pizza..now out to the bonfire with my kids and dh for some somemores!
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So not fair discussing food! I'm off to the gym with my DH soon. I'm walking 60 miles in October and need to get my rear in gear! I quit sugar three days ago and surprisingly, no headache. I need to lose 20 pounds so I'm not dragging it around with me. But....an ice cream cone sounds sooooo good!
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Mmmmmmmmm If I weren't so tired, I'd be on an ice cream run.
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My husband and I just went through the McDonald's drive through last night for a 49 cent ice cream cone----delicious! :0) I remember years ago when they were 25 cents---best deal in town.
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That's just enough icecream to curb the craving, but not put on ten pounds. I remember when a baskin Robbins cone was 69 cents. Now they are over 2 bucks!
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Remember Thrifty ice cream? 5 cents a scoop...my age is showing!
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A friend once told me the ice cream at McDonald's is actually frozen yogourt; which, if true, is healthier!
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Kittycat: I have an expensive natural hair wig that was cut exactly like my natural hair and no one ever knew I was wearing a wig! I had to wash it once a week. I just combed it out, put rollers into it to keep it's shape and then used a flat iron on it while it was on my head to restyle. A light coat of hairspray and an occasional flick of the flat iron and I was good to go. My blond wig in my picture looks pretty fake. It is also an expensive wig. After I washed it I used some hair wax on it to piece it out and I also put some braids in it and it now looks like real hair. This one you just wash and wear, although I do hit it with a pit of lite hair spray.
PM me and I will give you a ton of alternative stuff to help you through chemo. With your amazing attitude,you will be fine.
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Ladies: What you eat is your business, but since I am a sugarholic trying to quit and my dr has told me no more, I thought I would reach out to you. Sugar is supposed to be the worst thing for you and also feeds cancer. I have slowly replaced my sugar with Agave organic in both powdered and liquid form for baking and drinks like fresh lemonade. I also use date sugar, maple syrup and fruit juice to replace sugar. Just a bit concerned
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workmother & violet: There is a woman in one of my support groups that was originally diagnosed as positive, had a lumpectomy and rads and then it became inflamatory triple neg! Also, a very good friend of mine was originally diagnosed as positive in both breasts, had chemo, surgery, rads and reconstruction and two years after her original diagnosis, has mets and is triple neg. She is undergoing chemo now. She was advised by her surgeon to do the rare 2nd chemo before and again after surgery but she refused to do the after chemo. TN sucks, cancer sucks. I feel lucky that when they took my cancer out, the chemo had killed it all--it was just one large dead mass. Still, I am doing the diet, excercise, and everything my dr's are telling me in order to survive. BTW: I started out stage III but after chemo and surgery, I was told I was only stage II, so that I think is also very rare. My dr. sent me to the onc before the surgeon and he helped me pick my surgeon and the hospital. His first choice turned out to be a real ass but we found me a better choice and he turned out to be a TN specialist. I feel very lucky to be alive.
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I just got back from the grocery and somehow didn't buy myself anything sweet, so I am enjoying all of the icecream treats through cyber space.
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I'm enjoying some chips and salsa!!! This is our one day of sunshine all week and the rain returns tomorrow. So it's been yard work and more yard work. I have finally planted my tomatoes and hanging baskets. The weather has just not been nice!!!
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I am trying to go without sweets except for 2-3 pieces of dark chocolate with my green tea after dinner. I have been reading the book "Anti-Cancer" which mentions that if you do eat sweets(which should be limited to no more than 3 a week) that it should be with your meal, not in between.
I'm trying, but it is not easy.
Brenda
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I'm not really too into sweets too much myself....salty, starchy things and carbs are my downfall. Like Brenda, I'm eating a couple of squares of 80 or 85% dark chocolate every night with a cup of green tea. I've never been a chocolate lover in the past but I am acquiring a taste for the very dark chocolate and have come to really look forward to my little "healthy" indulgence every night.
Sherri
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I was diagnosed with tnbc on March 31, 2010 ... lumpecomy on April 14, 2010 and then a week of mammocyte radiation followed by DD AC-T -- every two weeks ... I am currently scheduled to receive my 3rd of 4 AC infusions and will then begin 4 infusions of Taxol starting in early July. Found out after radiation that I am positive for the BRCA-1 gene mutation, so once chemo is finished I will have the bilateral double mastectomy and have my ovaries removed. I have never wavered about the double mastectomy and ovary removal after finding out I was positive for the BRCA -- I am hoping to never have to deal with this again, but I am concerned about recurrence rates, especially given the aggressive nature of tnbc ... so scary ...
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Kathleen: You have a lot ahead of you and I will be praying for strength for you. You-Can-Do-It. I also feel that by reading the posts from all the women here, it will empower you.
Brenda
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Hey Brenda..I'm from Ohio too..only closer to Cleveland than Cincinnati...but we have been to Mason for soccer tournaments. lovely area..and some of my son's friends go to UC and Xavier.
Kathleen..I never have done the BRCA test...I keep wondering about if I should...did you have relatives that had BC? I had a lumpectomy, plus dd ac and dd taxol then rads..sometimes I just hope that was enough. How are you handling the AC? Pretty strong stuff isn't it...During my first chemo (AC) one of the nurses dropped a bag of Adrimycin...immediately they all put on their Hazmet gear to clean it up....I was absolutely freaking....I thought this stuff is going in my veins? They had me in a room close to the nurses station so they could watch me but I ended up watching THEM...The nurse who dropped it was so embarrassed. I was just losing it because it was my first time...
Ok..about sugar...I have tried to give up sugar but I just cannot give up peanut M&M's...I just can't.
And MJB.. I like your wig..ya know..you just have to do what makes YOU feel good..when I wore mine I got carded at the store when I bought wine!
Smithlme..you are walking 60 MILES! Wow..that is awesome...I'm in training for a 5 k run in August...you put me to shame...
I was 0% ER and %PR on my biopsy report...HER was 1-2%.
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Kathleen- I had bilateral mastectomies. Never wavered. Decided before finding out I had TNBC. BRCA1/2 negative. Hang in there.
Sugar is a downfall for me as well. Gave up most animal food substances to cut down on my fat intake. Good the majority of the time but still with so much weight to lose.
One of the ladies who did radiation with me decided to have a gastric bypass surgery one month post radiation. She's actually ER+! She just barely met the criteria for surgery weight-wise.As triple negatives have no other treatment arm, how many of you would go to such drastic measures if you were overweight?
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It's the fat we have to watch. Total fat. I'm a meatatarian. I love all veggies, but I gots to have some meat with em. Switching from red meat to lean alternatives is going to be torture for me. and butter. i will miss butter.
My onc told me sugar was "not the enemy". Our bodies need sugar. Our brains use the most sugar, then the heart, then the rest of our organs. I'm hypoglycemic. Protein and sugar is the cure. Sooo, ice cream it is. LOW FAT ice cream, or sorbet, or frozen yogurt.
If I was overweight to the point of considering bypass surgery to handle it, I'd reconsider. Everyone I have seen who has had it looks like death warmed over. My aunt, her skin just hangs off her. My best friend had it several years ago, and she looks so unhealthy. They can't eat alot sure, but they cant get what they need to stay healthy on such small amounts of food. Food is life. I'd sure try to exercise and diet before I'd have surgery. I guess it's up to the individual. I know my girlfriend had dieted on and off for years, but she led a sedentary life. My aunt was the same way.
I've gained about 40 pounds since starting treatment last year. I was underweight. I work for the army and at the time of diagnosis, I was working the demolition range which is hot, hard labor work. I'm 5'9" and weighed 115 lbs at the time. I'm up to 155 now and it doesn't look bad. I changed eating habits to hold this weight, and I walk alot. so far so good. My job changed since the double mastectomy and ensuing lymphedema, so I sit at a desk all day and type. I make laps around the warehouse I work in at lunch time and periodically through the day just to get some excersise.
There are no guarantee's that even if you follow a low fat diet and cut out all things "toxic and carcinogenic" that this stuff won't haunt us again.......you just have to do what you have to do to make yourself believe you are doing all you can. Positive attitude is key. Keep those natural killer cells growing, eat healthy, stay active and laugh. and always feel for lumps and bumps.
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PamelaJo-lI ove it "you just have to do what you have to do to make yourself believe you are doing all you can." So true, becaue the truth of the matter is it is what it is. The good news is It's Sunday and I believe. Luv the way you work exercise into your daily activities.
"Eat healthy, stay active, and laugh!" A great motto for good living.
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Hi all - Well just catching up on all the posts.
Well that explains why my nails are growing - I thought I was crazy!
I am BRCA1 + and was tested over 7 yrs ago. thanks goodness because that is the only reason why I would have found my cancer so early - through an MRI - not one of my doctors could feel it and the Mammo and ultra didn't show it!!
I hate hearing that the my eyebrows and eyelashes will still fall out - I was wishing they wouldn't! o-well one more thing to look forward to - ha!
I have a synthetic wig that I really like but need to take it off after work and just haven't found any scarves that I really like.
((Hugs)) to all.
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PamelaJo: I would think that being hypoglycemic (my husband has this) you would want to keep your sugars more balanced. From what I understand, the way our bodies best utilize sugar is when it gets it slowly not all in a rush so the body doesn't "crash". When you do this your body functions better. Also, things like white flour can also cause a glycemic rush So alternatives like Agave syrup, Maple syrup, Palm Sugar--these all allow you to have sugar but with a low glycimic effect. The Anti Cancer book suggests sugar only with regular meals so that's what I try to do. I am not perfect, I do "cheat". I was up to 170 pounds at diagnosis and I am 6', small boned and now at 156-158 pounds. These substitute sugars are easy to find in Los Angeles but I am not sure how it is elsewhere. I know that Whole Foods & Trader Joes carries this stuff but not everyone has access. I am also (or was) a butter hound. I love to cook and butter makes everything taste better, but I have eliminated most animal stuff from my diet. Very minimal goat or feta cheese or light parmesan but I also try and use substitute vegan options: The vegan butter substitute tastes like butter and works on most things but does make recipes a bit more watery. The only cheese substitutes I like are the rice topping for parmesan and TJ's mozarella which I use to make mexican foods. My problem with sugar though is the worst. Put a plate of cookies in front of me and they are gone. Same with anything sweet. I do the dark chocolate after a meal--just one piece--and I try to savor it
I cannot imagine needing to have bypass surgery but I used to know a woman who was 5' tall and 300 pounds who got down to a size 5 after surgery but she also had to have the drooping skin surgically removed. She was happy with her decision and had a Victoria's Secret obsession LOL. Always buying things on line and she was at least in her 60's at the time. I think we all have different body issues and quality of life is important. I agree with the AntiCancer book in providing our bodies with a healthy terrain so that we can continue to live. For me, this has been the challenge of a lifetime to make huge changes in my life!
All the talk about eyebrows and eyelashes: I use this great Clinique product that cost $15 and lasts for years. It comes in a little silver rectangular box and it is hands down the best eyebrow filler angled brush and powder. The kit is easy to use and stays on unlike any other products, including pencil, that I have used. I am also doing a Latisse double blind study and I have to say my top eyelashes are growing in rapidly compared to my lower eyelasses. Free Latisse for a year plus some cash to participate--I couldn't refuse--so I will let you know how it goes. I have heard that not using mascara during chemo helps to save your eyelashes, unfortunately, I heard this after the fact so I can't testify if this is true. I have learned to do eyeliner like a pro to hide the fact of having no eyelashes. Revlon makes a really great and easy one to master that doesn't come off unless you want it too. I have really oily skin so this was a great find for me.
I have never been tested for BRCA. Since no one else in my family has ever had breast cancer and since I don't have children I think it isn't important for me to know.
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I've cut down on my red meat, but had done that before diagnosis. For the most part we eat chicken, turkey meat and seafood. We do eat the occassional roast or steak, but it's not weekly or even bi-weekly. Every few months I'll cook it up because my family loves roast and my DH loves steak. I do try to eat lots of fruits and vegetables, but some days I have to admit I fall short on the vegetables. One trick I've started doing to add in a few extra vitamins is adding fresh spinach to sandwiches rather than lettuce. I've got my family doing it too. I can't eat dairy, so I do substitute soy products (i.e. icecream & cheese). I think it goes back to - moderation and movement. If we eat all things in moderation, balance it out and move we're doing good.
As for the bypass discussion, a friend of mine had it last year and she looks great. She's lost a lot of weight, she's been exercising, her skin tone looks great, attitude wonderful and is very careful to eat the right foods in order to get in vitamins and protien her body needs. If she's coming up short, she'll drink a protien/vitamin shake. And........the medical problems she had before the surgery gone!
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