Calling all TNs
Comments
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Mittymuffin: Your hair looks beautiful. Have you seen Emma Watson's new haircut? She is on the cover of Marie Claire magazine and her hair looks like yours. I love the new short haircuts. It's great to hear you are feeling good through rads--I just started this week.
MBJ: I really like your hair also.
I am going to look for my Princess Bride movie now. I like it when they are in the fireswamp, and she asks Wesley about the ROUS's, and he says they don't exist. Boom.
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Lovelyface: It is always a personal decision, but if I were you, I would ask either your oncologist or GP to give you a couple of referrals. It is very important to have the best dr. for your care and to have someone you trust. It sounds to me as if you do not trust this dr. and this can affect your outcome greatly. Ask around, talk to everyone, PM Whippetmom for a referral in your area!
If there is still cancer in the lumpectomy breast, for me, I have peace of mind with my MX. I too had several things going on in my MX side and this was the only way to get rid of all of it. My dr's did an amazing job. It isn't perfect, because of how they have to re-attach the skin, but I didn't want to do radiation. Imagine leaving something in the microwave for too long and it comes out like rubber--this is what radiation does to your breast and if you try and do recon later, you have less choices and much more difficulty. My breasts actually look better then before--they are beautiful--it's just under the arm, when I raise my arm that you can tell there was work done. I had some questionable activity in my right breast but after chemo I am hoping it's gone, and with diet and adding iodine to protect my other breast I am hoping I am doing everything to prevent it's return. Still trying to get into excercise mode but I am experiencing some post surgery depression.
I still drink coffee ( yay my dr ok's me to have one cup a day!!) but I weaned myself off of sugar years ago (at least in coffee). If you must add sugar to anything, use lots of cinammon to counter it's high glycimic affects to help keep your body in balance. Sugar feeds cancer--oxygen kills it--hence excercise is great sugar is not so great. Get yourself a Rebecca Katz cookbook as she has recommendations for low sugar solutions for desserts. Also, I would try to use dairy products that aren't treated with Rbst (I think this is what it's called) if organic is too expensive. My Vons store now carries a large amount of affordable organics so I eat organic only chicken and Trader Joe's grass fed organic beef as an occasional treat and I have greatly increased my vegis. Another suggestion with sugar is that it has less deadly effects if you eat a little right after a healthy meal as it also lowers the glycimic effect. Drinking lots of water with lemon juice in it helps cleanse the lymph glands and a supplement called Milk Thistle will help clear the liver from chemo side effects. You can go on this board and research supplements and most of the good ones are on here. Wobenzyme is good for inflamation and since the medical community is now saying most diseases start with inflamation in the body, I recommend taking this. I take 5 tablets 3 x daily with 1 tablet 3 x of 1000 mg Vit C.
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Lynn: I love that part, too! It is the best movie ever, truly. Thanks for the complement, it is work though!!!
mommafluff: Sorry you have to be here, but you will find great support. Ask your dr's to show you pictures of others who have had lumpectomies and what you should expect as an outcome after surgery. Some women have so much tissue taken out they are left with two completely different sized breasts, others, not such a big deal. It's either chemo & rads or chemo and MX for those without node involvement. Best of luck to you and gentle hugs.
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thanks, Lynn!
I think I have a pretty good outlook on this whole cancer thing. At first I couldn't bear the thought of losing my hair, but now I will do anything to make sure that all my cancer is zapped!
I was trying to figure out BMX, MX, BS, PS, TE...BC=Breast Cancer? If I see any others, I'll just ask.
I was at a Cancer Resource Center and the person I spoke with told me not to look on the internet...I'd still be sore if I hadn't and I wouldn't have found this wonderful place!
I couldn't figure out why I was so sore by the incision where they took the lymph nodes. I found the answer on the internet...the surgeon uses spreaders to hold open the incision and this can pull muscles and do some damage to nerves in that area...my new best friend is an ice pack! The soreness is slowly going away.
just rambling...
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thanks, MBJ (your hair is so cute!)
I've already had the surgery and I really can't tell any difference except when I lie on my back I can feel the indentation. I told my surgeon that when he got in there, he had my permission to "take out anything that wasn't supposed to be there!"
What is chemo and MX? After the sentinel node biopsy there was no sign of cancer in my lymph nodes...
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Regarding abbreviations. The only ones I can think of that you're talking about are maybe those used in the forum. So I'll try to give as many as I can think of.
mx = mastectomy
bmx= bilateral mastectomy (both breasts taken)
bs= breast surgeon
ps= plastic surgeon
NED= no evidence of disease (as cancer free as we can get after having cancer!)
rx= prescription
dx= diagnosis
cbc= complete blood count
tx= therapy or treatment
adj= adjuvant therapy (chemo after surgery)
bc= breast cancer
BRCA or BRACCA= genetic predisposition to cancer passed from mom or dad
ca= cancer
CAT or CT scan= type of scan used for assessment with or without contrast
pCR= pathologic complete response, determined when you have a complete response to neoadjuvant therapy (chemo given prior to surgery)
ACS= american cancer society
TC= taxotere and cytoxan (or maybe taxol/cytoxan)
AC= adriamycin and cytoxan
dcis= ductal carcinoma in situ (non invasive cancer)
ER/PR= estrogen/progesterone receptors
idc= invasive ductal carcinoma
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mommafluff61: That's great that you have a good outlook. You're stage 1, which is very good. It is hard to lose your hair, but it grows back quickly, mine did. One of my nurses told me not to look at the internet, but that's the first thing I did.
cc4npg: Great job with the abbreviations. Sorry you had to be in the hospital. How are you feeling? How is the tachycardia? I have had that for years off and on, and I take beta blockers to control it. It can be pretty scary.
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Whew, this Carbo/Taxol combo is kicking my butt! But totally worth it!
I am going to adopt Ruth's attitude
- and try with every day to find a positive. The best part of my day today is it is my 13th anniversary with my DH, we are stronger than ever. A wonderful thing to celebrate!I'm not caught up on all the convos...but Princess Bride - total WIN. Love that movie to death.
It is interesting seeing the conversation about surgery first vs. chemo and how several of you had the gut reaction to "get it out." I actually had the gut reaction to "start chemo asap." I'm not sure why? but that was my first instinct. I think they definitely need to do studies on TNs specifically to see. When I asked about the potential for spread during chemo, my doctor felt that as long as there was some response to the chemo, that would "probably" prevent it. But who can say for sure?
On a very POSITIVE note about my neo-adjuvant, I am having a fantastic response to the new Carbo/Taxol regimen. In just two full weeks, the tumor I can feel is almost gone, breaking apart. With 10 more weeks to go, I am taking that as a good sign that it is possible I'll reach pCR. Yay!
Tif - One of my tumors was 3% ER, and my doctor wants to discuss the pros and cons of Tamoxifan. It is interesting how treatment plans differ, sigh. I may try it and see what the SEs are, but we won't really discuss it until after surgery.
Hope everyone else is doing well, and having a great run-up to the holidays!! We are decorating the tree tonight (we procrastinate), so that will be great fun. Peace!
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Honestly I feel like crap. Saw onc today and white count is 13.5 so she's not worried. She's going to lower my dose of chemo and give neulasta the day after. Funny thing, I didn't have a fever while I was there. I left and went to another appointment, started feeling like my fever was coming back, and it did... 101 with ear thermometer. I don't like ear thermometers. When I got home, I took it orally and it was 100. I have no clue where this fever is coming from. I mentioned to the onc that my upper left back was hurting some when I take a deep breath and when I do a half turn from the waist up. Because I can duplicate the pain with twisting, I lean more toward a musculoskeletal thing... maybe costocondritis... but I'm no doc. I believe if it were something internal to do with lungs only, it wouldn't hurt when I move my shoulder back. But I don't feel good. I haven't finished shopping and supposed to bake with my girls this weekend... haven't gotten supplies. You guys just keep me in your thoughts and prayers, as I do you, that everything will somehow come together before Christmas. My son has yet to see Santa. He's 3. Oh, and joy upon joy... my hair is coming out by handfulls! Guess I've been naughty this year.. LOL.. just kidding. My fiance' and I are taking the comical approach to that. It's gonna happen anyway so might as well laugh. He can't wait for me to have a skullet! And today he said at least when I'm bald we can really cleanse the pores on the scalp. He referred to me doing henna for the last 2 years or so, and how he feels it must be clogging things. Henna is a plant, looks like you're putting mud on your hair, and hard to get out.
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cc4npg - I'm sorry you are feeling so lousy! This is such a rough time of year to have to be going through this - we all want to do what we can for our children, yet it is so difficult to do that. But I agree, sometimes you just have to laugh at the stupid stuff. I'm losing my eyebrows and all I could do was laugh - just one more thing, right? I hope you feel better soon.
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Hello everyone. So I'm flip flopping one last time.. met with the surgeon again today and she is recommending neoadjuvant so that's what we're doing. I have an appointment on 12/29 to get the port in,meanwhile need to get a heart test that sounds like muggle(?) - see the onc again and go to chemo school.. hoping to start near the 1st of the year.
So now I'm going to try to get my diet and exercise under control and established before chemo starts in hopes of keeping at it as much as possible thru treatment. Unfortunately I am obese and have struggled with it my entire adult life. I'm an ex-jock - really want to be that strong athletic woman again and hoping if there is any silver lining to this whole mess its that I finally get the motivation to find that jock in me again.
mommafluff that is some speedy service! I was expecting something like that at first but it sure has not gone that way.
MBJ I might be picking your brain- and anyone else that doesn't mind - on nutrition and supplements etc.
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Wow! Thanks for the abbreviations explanation!
How did your dr. know that you had TN before they took it out your lump (surgery)?
I had the core needle biopsy 1st but did not have the tn diagnosis until they got the pathology report back. Should I have known that it was tn from the core biopsy? It wasn't on the path report...
Amy - sounds like we are in it to win it! Maybe we'll both be "skinny and healthy" when this is all over! I've already lost 5 lbs. from the "hidden stresses!"
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where should I go to get an explanation of the path report...any good websites that you've used?
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mommafluff66 - my doctor used the biopsy samples. I had three samples removed from each tumor (2), and my 4 nodes were tested also. On the one tumor, all three samples were truly TN, and on the other, one of the three samples was 3% er and HER++. We had the FISH run for the HER, and that came out negtive. Based on that, my doctor was comfortable saying I was TN. But I know every patient is different - and the way your's was handled was what he felt was right for you.
I'll join in on the getting skinny! I'm gaining chemo weight, yuck, and am looking forward to starting back on my exercise/diet program. It is the one thing we can control, and I'm itching to get started. Just wish my body had the same plan right now, lol.
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mommafluff - most TNS get chemo but not all get rads unless its not DCIS. welcome to our wonderful thread!
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MBJ - thank you, thank you, thank you, so very much for such wonderful information. I totally agree with everything you have written. It helps me a whole lot in my decision making.
God Bless
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Lynn18, My hair actually came in grey/white and after looking at Emma Watson's picture on Marie Claire, I tryed to dye it her color.
Heidi, I keep hoping for the curls, but none so far.
Lovelyface, I hope you can find a surgeon you can trust and lean on for advice. We need to be at peace as much as possible.
I did have a lumpectomy, and now I have just 10 more rads to go. Today they told me I would finish all treatment on December 30th, and to my surprise, I burst into tears. It was just the overwhelming emotion of this whole journey from diagnosis through chemo and radiation. I'm afraid I startled the radiation technicians.
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mommafluff, heres a link that helped me read my pathology report. I found it helpful!
www.networkofstrength.org/information/diagnosis/pathreport.php
Hope this helps!
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There is a thread on here somewhere called "abbrevations for newbies" If you do a search you can probably find it.it's probably in the just diagnosed thread. It's a good thing to refer to.
I want to get skinny too!
Suze..glad that chemo is kicking your cancer! I dunno..on the chemo pre surgery or after surgery...yes..I wanted it out right away...but if I had chemo b-4 surgery and could see it DYING..well..I would have loved that too!
I was tn from the biopsy... 0% er/pr..1-2% her..the FISH test determined not enough to have herceptin.
Momma..sounds like you will get your treatment plan.usually 6 weeks between lump and chemo....they want your body to heal between...it's a nice break..time to get your body ready for chemo..they want you as healthy as possible..
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There is a thread on here somewhere called "abbrevations for newbies" If you do a search you can probably find it.it's probably in the just diagnosed thread. It's a good thing to refer to.
I want to get skinny too!
Suze..glad that chemo is kicking your cancer! I dunno..on the chemo pre surgery or after surgery...yes..I wanted it out right away...but if I had chemo b-4 surgery and could see it DYING..well..I would have loved that too!
I was tn from the biopsy... 0% er/pr..1-2% her..the FISH test determined not enough to have herceptin.
Momma..sounds like you will get your treatment plan.usually 6 weeks between lump and chemo....they want your body to heal between...it's a nice break..time to get your body ready for chemo..they want you as healthy as possible..
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MBJ - I too have been reading up on inflammation. I am starting to really believe that is at the root of my cancer. It all makes sense. I have always eaten a highly inflammatory diet, and after dealing with several very stressful situations in the last few years, I was even worse about my food choices.
I am now trying to stick to an anti-inflammatory diet. I hope this will keep any recurrance at bay, as well as help with allegeries, colds, and other stuff I have had going on that seems likely to be an inflammation issue. If nothing else, I should age beautifully! If you read the perricone anti-aging diet, it is basically the antiinflammatory diet.
If you google "nutrition" and "self" it should pull up a great website that gives you tons of nutritional data on foods, including what seems to be very important for anticancer - glycemic index and inflammation index. It is shocking to see the inflammation score for some of the crap food I have always eaten.
ETA: here is the site http://nutritiondata.self.com/
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Healthy Weight Loss: The absolute healthiest, best way to lose weight is to do the Perricone 21 day challenge. It is a high protein, healthy Omega 3, high antioxidant diet that is not like a diet unless you exist on pasta, sugar, potatoes, and bread because you can't eat these things. the good news? You eat every couple of hours, you eat a variety, you can still have dairy products, and you never are hungry. You don't lose muscle with this diet, only fat, and....if you follow it, you will easily lose pounds. I lost 30 on it, well, I had some help with chemo. I never gained the weight back though I no longer do it. If you are obese, he has a healthy shake to help you with the cravings and to provide the nutrients without the calories. Great for cancer, too!
Lovelyface: That makes me so happy that I have helped you! That is all that I want to do is be of assistance. Thank you as you have made my day!!!
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99Sporty: See post above but to add to it--I craved protein on this diet, so it's a good one to be on during chemo as you are going to want lots, and lots of protein. Chemo aslo kills muscle tone, so this diet will help you retain some. good luck and you will find much support on here!
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mommafluff: They either do chemo before or after the MX to insure there aren't any remaining cancer cells floating around and to prevent recurrence. If you had a lumpectomy, they would do radiation and if you had lymph node involvement and an MX they would also add radiation.
Lovelyface: I forgot to answer a question you had: 0/2 nodes means that they took 2 of my sentinel nodes but they were cancer free.
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momma--probly you found your answers by now, but----
i found good answers and explanationsand therfor comfort
from clips on Utube (nobody told me anything about drainage what or why orhow) the natonal cancer institute http://www.cancer.gov/dictionary
mayo clinic www.mayoclinic.com/health/breast-cancer
http://www.cancercenter.com/glossary/growth-factors.cfm
mastectomy info and graphics http://www.emedicinehealth.com/mastectomy/article_em.htm
BRAC or genetic issues http://www.genetichealth.com/BROV_Gen_Dis_in_Ashk_Jews.shtml
practioners, medical centers and our own bodies are clearly so varitous. i had a lot of high dose radiation for some other cancers and said my prefernce was no more radiation (of course they agreed with me) my brca (ng for a gene mutation mostly in ashkenasic jews) test came back negative which yey thay or i probly would havd been amputated sown to floor (joke). so, in my case the answer is tamoxifen for 5 years, 6 mo check ups w/oncologist and mt thorasic surgeon. other women who have reconstructive surgery travel some different airways.
i was fortunate in another way. i had a mammo on a tues, a wk ater a core biopsy a week later surgery. didnt have to stress ore ponder. i have seen that some women have had to wait weeks and months. i think i would jumped in fronyt of a moving train by then!
good luck (& hopefully not tmi)
~ nancy carol
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oh yeah! a post caveat:
hopefully you can read my letters----2 of my cancer surgeries were in my brain. a consequence of that is B A D brain/eye communication. I HAVE NONE my typing is plain ol'goofy hope its not too rough for y'all
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To All My Friends on this Board!
Today was my last radiation treatment. I am DONE!
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Happy for you Swanny!!!!!!!!
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Yeah Swanny! Go in good health girl!
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