Calling all TNs
Comments
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interesting thing about my "positive node" was that it was a sentinel node but was initially clear. It turned up "positive" after immunostaining. The immunostain showed isolated tumour cells or "rare single cells and one tiny group of few cohesive cells in subcapsular sinus".
I asked my surgeon about the immunohistochemistry and he said it is a fairly new test. A few years ago the node would have been identified as negative as IHC wasn't developed yet! My Nottingham scale is T2 N0(I+) M?
So feeling hopefully about that!
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Can anyone tell me if they have had "odd" pains After treatment?
I'm paranoid and trying not to go to the ugly place.
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Islandmama,
I'm starting AC every other week June 17. I was told my hair will fall out on about day 17 without a doubt.
I know nothing about testing (especially New testing). My snb came up neg for all nodes tested but my oncologist prescribed chemo based on the fact that tnbc "is a tricky devil and tends to pop up elsewhere." I'm wondering if the new test you had is the key to discovering how it "pops up" elsewhere????
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thanks radical!
I have no idea either about the testing! I'm still in a fog and I am 10 days post op! It's all happening so fast but not fast enough.
Did you get a PICC or port?
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Just gorgeous
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Nettie1964- I will be 4 years out in August and still have "odd" pains. I have had lower back and left hip pain (leading to a bone scan and x-rays) that turned out to be caused by degenerative disc issues in my lower spine ( I am 48). My ribs don't hurt when I push on them, but if someone pokes or tickles me it really hurts. My MO said this is normal- chemo really messes our bodies up. I always used to feel younger than my age, but now I feel physically older, but still young in my mind and heart!
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TifJ, thanks. I'm just so tired of all the new pains. But knowing when or what to report. It's nice to hear that others have had stuff that was normal. I know everyone I'd different And I kknow the two week rule.
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Islandmama,
No port! Right now I'm excited about that but I'll have to let you know after I get stuck a few times!
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keep me posted radical!
My surgeon says I need central access so I think I need one or the other.
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Hi Islandmama2, welcome but sorry you have to join our sisterhood. I see you are from BC, I'm in Ont. and I believe most of us Canadians get FEC-D treatment. I believe it is very similar, just wanted to pre warn you so that you won't be surprised at your apt. I had FEC D and it is very doable. I lost my hair closer to week 3, but decided to have a good friend buzz it off after my first chemo as I wanted to be the one to take my hair -not C! This was my first bit of control I gained back after a diagnosis left me feeling vulnerable. You are going through the hardest part right now and you will feel so much more empowered after you get your treatment plan. I had a picc line which I was so thankful for as I've always had bad veins for blood draws. You get very use to it and makes chemo no big deal! If you have any questions this is the best place to be, among your new sisters who really understand what you are going through-these ladies have helped me in so many ways, they are a great bunch! Look up the Canadian forum as well-another great group of supportive women. Thinking positive thoughts for you!
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Thank you Shari!
I think I am going to go for a port. My surgeon gave me the choice and I would prefer the hidden port to be honest. I know managing a PICC is easy but a port is even easier! I'm a nurse and have accessed them before.
I would love to chat with you about side effects etcetera. Send me a pm if you would chat with me
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Hi Islandmama2,
I'm in Calgary, and I had AC (four cycles) and Taxol (12 weekly treatments). I requested a port and I'm glad I did as I still had a couple of cycles in the arm before my port was fitted, and my veins are terrible to access now! Can't use left arm due to LE.
AC would have been ok, except I developed DVT/PE. I think that's a rare complication, and was the summation of a number of factors. The weekly taxol I tolerated quite well for the first 7-8 treatments, then started to fatigue and had diarrhea so had Tx 10 (I think) postponed for a week. My nails were crappy, and I had a bloody nose, but nothing too dire. Minor neuropathy which cleared up. No bone pain, and my blood counts stayed good throughout, so never needed neulasta.
My hair started falling out in earnest about day 17 of my first cycle, so I shaved it, but to be honest, it never really all went! Especially the top, which I had to keep shaving!
Hope all goes well for you. It is doable, and I'm back working fulltime now, (physio), singing with my Sweet Adelines chorus, and just joined a survivors dragon boat team!
Life is good!
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wow Morenna good for you!
When did you go back to work?
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island mama, i just finished taxal and my hair is starting to grow back. my fingers and toes are sore and my arms and legs often ached while i was tacking taxol.
i used a port for chemotherapy my veins are not great and i would hate to have had to try and find a vein. hope this helps.
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A friend of mine on Facebook who is a 5 year TNBC survivor just posted that, "Only 20% of TNBC makes it out to 5 years." This can't be right can it? My onc and BS both said I have a 70something% survival rate...not 20%. Can anyone clarify what she might be referring to? Sorry to bring up the whole stats thing, but this is really bothering me. Thanks.
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Allydp, this doesn't sound correct to me. Of course I'm sure a lot of it depends on grade, size, node involvement, response to chemo. I was very fortunate to have gotten PCR, with no node involvement ( however only had US-no scans) and my MO has said I have a 70% chance of no recurrence! I'm running with that and try not to read any other stats. I figure my MO knows me, my cancer and tx and is best to advise me for my situation. Don't let this worry you, there are a lot of unknowns
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Allydp, I found this here on Breastcancer.org: "Five-year survival rates also tend to be lower for triple-negative breast cancer. A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer." so you are correct, 77% survival rate. Thank goodness because this really scared the **** out of me!!!
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Thanks so much, ladies. I didn't think she was correct. I messaged her and asked where she got that stat from. We share the same MO, so I can't imagine it was from her doctor...since I was told the 70 something. Ugh. I hate coming across these stats. As hard as I try, they send me into worry land. I am vowing to never post stats like that, just in case someone like me is reading!
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my surgeon told me that my 5 year survival was 80-86% compared to others with BC at 93%...
Maybe she heard that 20% don't survive the 5 years?
And just like my surgeon said, he doesn't have an 80-86% chance for 5 years so hard to look at it that way. That's how I'm choosing to look at it anyways
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She just messaged me back and said she "read it somewhere." I truly think she's mistaken. I've just never heard that stat before, and we have all been told much higher than that. I'm going to stick to what the doctors think.
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In 2009 my MO told me I had a 70% chance of making it to 5yrs. I am hoping that ladies that are dx in 2014 have it better than that.
Ally....your facebook friend should be ashamed of herself....That type of wrong and negative information is NOT supportive and can be downright hurtful. It just did not need to be said to you, especially with out knowing where the info even came from. Sorry that it scared you.
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NavyMom, thank you. I am a very non-confrontational person, to a fault, but when I messaged her to ask her where she got that info from, I added a quick blurb about how scary that stat was to read, as well as how I believed it to be grossly inaccurate. What's worse is she leads a local FORCE group. She should be even more ashamed to put that kind of negative/wrong info out there as a representative of risks. She responded to me and apologized, which I appreciate, but I could've done without that jolt of anxiety today.
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Yes, and the 77 percent sounds like it is all stages combined. As a stage 2b with a partial response to chemo, my MO put my five year survival at 85 percent. And if I make it to five years, I'm probably ok because TNBC recurs earlier than hormone-positive.
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Maybe your friend she is confusing it with another stat I have read: TNBC accounts for 5-15 percent of breast cancer diagnoses, but 25 percent of deaths, by "volume" of women, if you know what I mean.
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Ladies, boy what I wouldn't give for some of your percentages. Mine is only 50/50. Oh well I guess thats life and nobody really knows.Allydp I'm glad you managed to get that sorted with your friend and yes it scares the shit out of you to read all that crap and cause unwanted and unwarranted anxiety. We can do without all the negative stats and percentages on recurrence. We have enough to deal with as it is and it's very scary on those 'what if' days.
Had my breast surgeon appointment today. Everything still seems ok and he didn't appear worried at all until he said I'll see you in four months if not before, which gave me a jolt cause I thought I bloody hope not. God I hate these appointments coming around.
Morwenna I was lucky enough to work full time throughout my treatment. I was set up at home and luckily my bad days were really at the weekend and also on Mondays so somehow I managed even though I had to drag myself to the computer some days. Still I got through it luckily as we do and also have to.
Have a great day ladies. Do something you really enjoy.
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Cocker,
Your stats are the same as mine after I had to stop the chemo. 50/50. I just keep on. No one guarantees us tomorrow so I just doing the best I can every day. My arthritis is a challenge as some days hard (painful) to walk. I see my MO every 6 months unless a problem but get labs done every 3 months & fax them to her (all at her request). My primary does the labs faxes to me & I fax to her. I just take my supplements, B-12 & D-3. I stay off baby aspirin 1 week before labs. My primary is fantastic as he will do any lab I ask if we talk about it & he sees my concern. I still going to yoga some days better than other but still good.
Hang in ladies. There are days now that I forget all about "C"!
Take care to all,
Marsha
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I am a bit of a math geek... the only official 20 percent I know related to tnbc is that about 20 percent of breast cancers are triple negative...also out of the triple negative bc ladies, only about 20 percent of them do not have a BRCA mutation...
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Not trying to make light of anyone's feelings and fears as we all have them, this was just a little reminder for me that I thought I would share! Hope it doesn't offend anyone!
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Nettie - love the picture and the caption - and it is so true!!!
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Nettie... I just wish it was easier to do!
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