Calling all TNs
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sugar,
I did read where there are some thoughts on that, but I have forgotten what the consensus was. Sorry. Maybe someone else can find the article.
Grade three cell = easier to kill with chemo due to chemo often working best against fast growing/aggressive cell types. Or so they say...
Most TNBC is Grade 3, and no, that doesn't keep me awake. It just sucks more than a DCIS or Grade 1 ER/PR+ IMO thanks to all the scary crap they like to write about TNBC. F*ck it; we are all Survivors in one form or another.
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I had DCIS the first time and it was ER/PR- & the second time it was IDC and DCIS - Triple Negative. When I had DCIS last year, I was concerned about no hormone receptors. Looks like I was more concerned that my doctors. Well, I've moved onto a new onco and just fired my BS.
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Titan - of course you can ask! The avatar hair is 6 months PFC with lots of artificial color. I used to be a redhead and my post chemo hair was pretty nothing/grey. When it finally got long enough to do something I went a little wild. It is nothing like my real hair but I decided to have some fun. I have had lots of compliments -but family have kept diplomatically quiet!
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I fired my last oncologist and last week fired my BS. I stuck it out with the BS through the mastectomy where she assured my family she removed EVERYTHING. Then recurrence, and she took that lump out assuring me and my family that she got it all with enough to get a clear margin. She called last week and wants to go in again to take out more tissue because she only got a 2mm margin instead of the 3 mm she likes. I told her to go piss up a rope. Literally.
If A/C x4, Taxol x 12 and a month of rads won't kill it, nothing will. And what exactly is she hoping to find? LOL I mean, if she got 2 mm margins, is she just gonna take out another 1 mm of random fat cause the tumor is gone and I have no breasts anymore?
Can we say Quack boys and girls???
My new oncologist is a wonderful man and I trust him completely. He's being very aggressive but also very cautious considering all the different kinds of chemo I've taken.
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Well, looks like round 3 of chemo is put off. Went to the surgion on Tuesday and have another stitch absess which is infected. On another round of antibiotics and they siad no chemo if you have an infection. So now waiting until the 18th for my next treatment (this will be 4 weeks between treatments). I am on Dense Dose AC... They dont seem overly concerned about it but did ask me if I would go in next Thursday for the treatment and I refused. I am leaving on vacation next saturday and there is no way in hell that I am going to feel like crap for 1/2 of my vacation. I really need it and to be able to relax and enjoy the time on the beach with my 5 year old. I have had three surgeries so far this year, thyroidectomy, lumpectomy, mastectomy and reconstruction along with 2 rounds of chemo. I need a break.
Hope you all are doing well.
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Hi ladies, it's been a few days since I've been on...
Pamela, I have been wondering why my nails were growing like crazy! makes sense, thanks for the info.
Chinablue, I did have the BRCA testing and I came back negative. BS ordered it because of my age (37), TN and no family history (very few females to go by).
Retrievermom - Just because you don't have a daughter doesn't mean you shouldn't qualify for BRCA testing. They didn't know I had a daughter when they ordered it for me. You should ask!!
Heidi - Sorry about the seizure meds but I hope you feel well and are able to enjoy your trip. The pic of your horses is beautiful!!!
Jen C - Enjoy your vacation too, you deserve it!
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Well, its finally offical. I am a true TN. My head is still spinning from all my conflicting results but I guess its finally settled.I've been on this thread before not knowing if I am TN. Here's my story:
Found my lump 2 weeks after my first regular physical in eight years (primary did a breast exam and felt nothing). Have been having yearly mamos since I was 25 yrs old - maternal aunt died of BC. Went for yearly mamo 3 weeks later, pointed out the lump. They did a sono, sent me straight to surgeon for a biopsy. Biopsy done at my medical group. Result was IDC with 50% ER+, 3%PR+ and HER2-. Went to Sloan to meet with surgeon. Had lumpectomy done by her. Pathology after lumpectomy said TN. Sloan was confused so they got slides to retest my original biopsy. That came back 20%ER+, 30%PR+ and HER2-. OK - then Sloan sent lumpectomy tissue for Oncotype test. Got those results last night - back to TN. What the hell???
This has been insane - now you see it , now you don't! Oncologist is going with the TN pathology since both done on lumpectomy came back that way and it is more reliable. I have an appt with him next week to discuss treatment. He says he may suggest CMF chemo, which is less aggressive(?), because there is some new study saying it may benefit TN just as well as the more aggressive ACT course. Has anyone heard about this? Anyone done CMF? Thats the next stop on the boards for me. Didn't make it to work today. Still trying to process it all. Am petrified of the chemo - feel like once I start I will never be the same physically. Any words of encouragement?
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workmother...I certainly can't tell you that chemo was fun but it really wasn't that bad...I was totally petrified for the first one but once I got through that (and lived)...it just became one of those things that you don't want to do at all but that you HAVE to do....
We will be here for you while you go through chemo....and then when you come out on the "other side" and you will....you may have gained a few lbs. lost your hair (and it will come back)...and a few other se's from chemo but you will be glad it is OVER and that you did all you could to kill those nasty cancer cells....
Hang in there...push them to get you started asap...then you will get done quicker..and can move on...
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Guess its a good thing I've lost 15 lbs since this started. Spent the first 3 weeks hardly eating, felt like everything I ate was poison. Then I totally changed my diet from a junk food junkie to an organic, no red meat, more fruits & vegies gal. That really shed the pounds. I wonder how many TNs had a junk food diet like me before diagnosis? Better keep the clothes that are too big now huh?
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Wow, workmother, I'm impressed. Help me! I find myself eating much better now, and have totally given up soft drinks, but still reach for a sweet now and then. I can give up red meat no prob, tho.
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I guess it's all what you have cravings for while doing chemo. After diagnosis but b-4 chemo I would walk around with a bag of spinach and eat it like chips. I was trying to get really healthy before chemo....then the onc says to eat anything you want during chemo and I took that literally...I loved KFC..extra crispy with mashed potatoes.
We recently got some KFC and well, it didn't taste like it used too and all the grease made me feel like I had the flu....
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I ate like a pregnant race horse and packed on 30 pounds during chemo. I ate all the comfort food and ice cream I could get my grubby paws on. And KFC...I loved the bowls. Now I can't even look at them!
Linda
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I ate Kraft Dinner every day for lunch the week of chemo, each and every round. I actually bought a case of it because I craved it so much. Weeks two and three, I'd eat healthy again. Funny...I haven't had it since chemo ended and don't miss it a bit. Reminded me of my college days.
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I ate... normally? With emphasis on low fat. Actually lost weight while doing so. Guess I missed the food cravings, though I did want extra tomatoes.
Hubby cooked everything with fruit/veggies/organic meats... still does. After 35 years I guess he's a keeper.
Now, if only I could get past this damn seizure issue that has my head spinning all over again with stress and all its implications. Have to do a 24 hour EEG. Everybody say "no Mets" but still wants to go super vigilant with additional tests and medications.
I am so bummed about all this. Just more issues to deal with in an already changing life.
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I find this a strage revelation. I worked very hard to keep weight on during chemo. I would go down to about 20 lbs under my normal weight and fight to get another 10 back on before the next chemo. I ate higher fat foods, i.e. an avocado at 2 am, and spent a lot of time trying to keep from wasting away. Everyone I see around these boards gained weight.
Since chemo finished, I have had no problems puttingon and keeping on the weight. Too much in fact. I weigh 35 lbs more now than I did during chemo.
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SmithLme:
Unfortunately, there is an age limit to BRCA testing if you want it paid for by insurance. Mine only tests anyone over 55 if there is a history of cancer in the immediate families. Since none of my relatives on either side of my family had cancer at all, and my being 62 at diagnose, Blue Cross would not pay and I cannot afford the $3,500 it costs out of pocket.
Linda
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Linda,
There shouldn't be an age issue with BRCA testing. My oldest daughter is 23 and wants to be tested soon. My niece was 36 when she was tested and she lives in Arkansas. We know where the gene is so my family doesn't have to have the full sequencing test. Since I was the first to be tested, my insurance paid for it. Insurance companies need to get up to speed with these tests. If I would have had this test when I was first diagnosed with BC, my choices would have been much different.
Linda
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Sugar, Someone here on breastcancer.org said that her oncologist told her that if a tumor sits too long in the lab that the receptors can break off, for example, if your surgery was Friday and then the tumor sat until Monday. In my case, I was hormone positive for the biopsy and cold negative for the post-surgery pathology report. It's a mystery. My PET Scan on Saturday came back negative, clear, normal. I had a scan because I have a fluid-filled cyst in my masectomy site that the fluid came back negative for cancer on the slides, but the person behind the microscope thought they saw breast cancer cells. Next, the cyst will be excised and biopsied just in case there are any cancer cells lurking. It'll likely be next week. I am so happy not to have any mets going on - big phew! Now, just hope this cyst is also all clear. I'm on Wellbutrin now. I'm just not very good at being a cancer patient. I'm really not cut out for it. My hair is coming in a horrible ashen blonde-grey. My natural hair color is in my avatar taken right before I started chemo. It was something I really felt good about and prided myself on never having touched dye in my life. But I think I'm going to have to touch dye, because this will just not do. I finished chemo mid-March. Does the hair get any better as time goes along? I hate it. I always had long hair, as a few of you did as well. Does the color ever go back to the original natural color?
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OMG, how funny! I craved KFC and mac'n'cheese during chemo. I never eat either. Now, I can never even look at either again. Just seeing the initials KFC turns my stomach. I gained at least 25 lbs. on chemo. I've lost 13 lbs so far.
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hi guys, I am so shocked to see the stories that are similar to mine. nov/2007 went for my yearly phyisical, doc said my breasts felt normal. feb/08 found a huge lump in the bath. turns out to be 3.5 cm bc, no family hx. sucker doubled in size in 1 month! had neoadj chemo 6 rounds of fac, no probs with chemo, really, little tired and tinny taste in my mouth,melted the tumour away, mastectomy with ax dissection, node negative, 25 rads plus boosters (I wanted the full montey). no problems in followup exams. feb/10 had shoulder pain, thought it was from reno a house we just bought in fla, may 14, flew back to ontario, got lymphedema, went for routine follow up with bs may 4, he sent me for ct scan, turns out I have mets to adrenal gland and lymph nodes. be starting chemo again soon, im researching drug trials (parp) I think it is a good bet for TNs. god, I really believed I was done with this -
still trying to process....
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I would watch cooking shows, and think, "wow, that looks good." The idea of mac n cheese was great; faced with it, I just couldn't. First chemo round, home-made guacamole was about all I could stand. In the weeks following, it was a constant search to find something, anything, that tasted good.
I'm over 55, have BC/BS as insurance, but no other bc in immediate family. Other cancers, tho. I guess I'll have to call and find out if they will cover BRCA. Of course, what matters is if my nieces can get the test, right? They are my concern. Two are in their early 30s.
Violet--I hope all the news is good news. So far, so good. Your hair in your photo is gorgeous; no wonder you want it back as it was. Mine is coming back straight, a mixture of white and something darker. I like the feel of it. It's longer than stubble.
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Got my BRCA1 and BRCA2 results back today. NEGATIVE!!! Thank you Jebus. I did not want to pass this craziness on to my girls.
So happy. Ready to sleep sweetly tonight. gosh I love hangin onto the smallest of good news in the shite storm that is breast cancer
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Just catching up with everyone. I tried to stay healthy before and during chemo, but somewhere in the middle I got this insane craving for Cheez Its - I used to hate Cheez Its - there was one week I went through something like three large boxes. Now.......I'm back to not liking them, but boy did I love them during chemo. And.......fried chicken I loved fried chicken, which I rarely eat, during chemo I had to have it weekly. Because of the taste thing I couldn't stand coffee or soft drinks, now I'm back to coffee and occassional diet cokes. Chemo does strange things to our bodies.
I didn't get BRCA tested, but my BS suggested it at the time of diagnosis. Maybe it'll come up again on a follow up. I am the first in my family to have any type of cancer, so it would seem odd that I would carry a gene, but I am curious. Silly question - is the testing covered by insurance? Or is that out of pocket?
Workmother - chemo isn't fun, but it is doable and remember, everyone has a different reaction. Some have minimal SE's and other's more severe. Stay busy, walk and rest when your body tells you to and you'll do fine. We're all here to help you anytime you need to vent, ask questions or talk - we're here.
Violet - My hair color is different now too. I had brown hair with natural red highlights and no kidding maybe 2 or 3 grey hairs - my hairdresser couldn't believe it and always looked. Now its curly, three different colors of brown with grey mixed in. I was told that it will more than likely go back to what it was or close to what it was prior to chemo, but that it takes about a year. However, there are a lot of times it stays the way it comes out. Guess we'll be hitting the dye soon. But........I don't want to complain I have hair.
Jenn
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My hair has always been straight and limp. When it came back in it was really curly. I looked forward to it having some body, but as soon as it reached past my shoulders, I had the same limp straight hair as before, I don't think I had any gray at first when it came back in. Before I had had the occasional gray strand. Now I have more then occasional, but that probably would have happened anyway. My mother thinks that if I cut it short again, it should get curly, but I don't want to chance that it won't. Anyone know if generally it would curl if it were shorter?
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Thank you Pamelajo,Titan and sugar77 for your uplifting encouragement
Monika
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To retrievermom. I also have BC/BS insurance. At first they denied my BRCA test. I sent an appeal letter and just got the response yesterday that they paid for it. 0
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I have BC/BS as well. The onc office said that if the BRCA test was going to cost me more than 350 out of pocket, they would call me. Never got a call. I have no family history of cancer, other than my own.
Wonder why so many different reasons and hurdles for this test.
Meece, my daughters each have lovely waves in their hair, until it gets longer.....then it's straight. If it's short, it flips and curls. The weight of your hair will straighten it.
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My hair is so fine though, not much weight, but perhaps more than it can handle.
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stephanief - so sorry for what you are having to deal with. We will all be thinking of you as you go another round with chemo. Keep us posted please.
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I'm one of those who lost weight during chemo. Food was just horrible - like eating cardboard every day. It was a struggle to make myself eat. I have managed to keep most of the weight off - I'm about 15# lighter than before bc, which is much healthier for me.
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