Calling all TNs
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I finished FEC a few days before my 34th birthday, December 9th. I'm now getting ready for surgery this next Wednesday. It was scheduled for earlier this month but had to be rescheduled due to a high fever. I am having a single mastectomy of the left breast with tissue expander. I am starting to feel anxious but that is expected I guess. I'll also have radiation a few weeks after surgery. Not only am I feeling some anxiety about the surgery, I am starting the think a lot about recurrence. Does the worry ever end? I guess I'm just in another stage of the BC journey!
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aag: Come join us on the Exchange City thread and Breast Implant Sizing 101--lots of great advice about your upcoming surgery. It will ease your fear and worry! I also have some great info about fat grafting and implants when having radiation. PM me if you are interested in reading it.
Isabelle: So sorry your friend is now having to go through this. Too many women, if you ask me.
PPOR: Sorry you have to go through this but you have come to a great place of support and friendship here! I had 6 x TC and the first is the worse. ditto the advice re meds for nausea. The dr's want you to be as comfortable as possible while undergoing chemo.
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Teka: water and plenty of it.....
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Yikes! Just finished cleaning & polishing every bit of English china, sterling silver, Limoges, cut glass, Waterford crystal and curio cabinets in the house (and everything in them). Huge job! What the heck got into me? Am I *that* bored with winter? Is this what people do when they feel better? Now *that's* scary!
Need to find another book to read. Help!
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Just got pathology report and am very afraid, have read online that only 40% of TN responds to chemo and that it is a very aggressive cancer that lacks research and has a high rate of recurrence
Diagnosis: IDC, 2.5cm, Stage II, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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loving mother- stop scaring yourself! Don't mean to sound blunt but what you are reading is not true! TNBC in early stage responds very well to chemo in most cases *because* it is such an aggressive cancer: the chemo hits it hard (think 20 mph wreck vs. 80 mph wreck). Also, don't tell our Stage 4 gals that 9 month BS; some intend to be around for a lot longer than that.
Gotta run, but others will be in here soon to give you much more eloquent, softly worded and sound advice.In the meantime, keep your chin up because we WILL make you feel better about this! You just need a bit more convincing (and that takes time).
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loving mother don't feel hopeless! TN breast cancers respond very well to chemo! I did chemo before surgery and it totally wipped out all cancer in my lymph nodes and shrunk the tumor from 6cm to 4.5 cm multifocal (meaning not solid- just spots here and there). The treatment plans are usually very aggressive. And oncologists often use unconventional regimes tailored to individuals. Every cancer is different. The few published studies isn't enough to count on to draw out any conclusions. Stay positive!0
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Love it HeidiToo! Keep posting and informing us girlie!
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Thanks for the support ladies, am glad you are here to help
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Chemo worked wondrously for me. My one neo-adjuvant chemo shrunk my rapidly growing tumor from 2.5cm to <1mm...the pathologist could not find anything to analyze other than dead tumor tissue. I had no node involvement and maybe the chemo wiped it out! The results could not have been better! Don't know where you read that. Stick to reputable publications, also not much in print over 2 years ago is really relevant.0
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Nice going tnbcRuth! I love these type of stories...
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I really love those types of stories too, starting to feel hopeful again
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Has anyone heard from Laurajane recently. I miss her and am hoping all is OK.
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Swanny - I was thinking and wondering I about Laurajane today, too.
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loving_mother: First of all, where ever you got that statistic from is not right. Chemo is best for us and our cancer responds best to it. Secondly, and more importantly, you are NOT a statistic. You are a person with a cancer unlike anyone else's and it will respond differently to treatment, as will your body. Some things about your cancer are the same as mine or others here, but some things are quite different. Your side effects will be the same way... some from chemo will be similar to others, but some quite different. Your cancer was caught early, which is good. However, there have been other tn's on here whose cancer was caught at a much larger size with nodes involved and a whole bunch of them have been around for many years! I remind myself often that my having "had" cancer doesn't mean my life will be cut short, but it means I must really watch certain aches and pains, take precautions, having testing if/when necessary, eat right and excersize. Most of those things are things we should do anyway, so it's really not too much different than anyone else. Some people's lives are cut short way too early, very suddenly, from things that are not cancer related. A good example, one that I remember every time I start feeling fear, is of my mother who was hit head on by a petroleum truck at 64... gone before she had a chance to develop cancer, heart disease, stroke, etc. Do your best to remember you're alive, not the opposite, and live each day instead of being so afraid and dread filled that you don't.0
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Loving mother, just wanted to tell you that I started chemo on Dec 22, my tumor started at 2.5, and now is the size of 2 bb's. Having Chemo first shows us if our bc is reacting to the chemo, if not then we are fortunate for our onco can change our treatment plan! For me statistics are scary, I just want to remember my fact....I hope this makes you feel better...we can do this and fight this, we can't give up....
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Shout out to Laura Jane..we miss you! How are you doing? Are you "creeping"..(that is what my kids accuse me of on face book..)?
Oh loving-mother..of course you are scared!..We all have our moments..but alot of us just push them to the back of our minds..its kinda hard to do sometimes but you've got to do it...If anything I have learned from this is that I can't withdraw from my life and the people around me...ok..once in awhile you have to vent and you can do it here! We will listen and we understand...
Triple negative can be scary..oh yeah..but remember you are doing everything you can to kick it...our overall survival rate is not that much less than the positives...
Oh..and welcome to "da club"...
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Oh and Angelisa..thanks for your post..I think you and the rest of you helped all of us on here!
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Angelisa - I couldn't agree more with Titan. When I read your post to loving_mother, it made me feel better, too. Thanks!
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Is it possible for the pathologist to determine if chemo will be effective in my case now that they have the lump since there is no more lumps I assume, like can they apply chemo to the lump they took out or anything like that?
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Thanks to all of the posters, I was really pancking earlier and am feeling more comfortable now and feeling more hopeful from all the responses
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Laurajane? Hey, yeah, where are you? Come see us, we miss you! I do hope you're feeling so wonderful that you've forgotten about us!! I'd take that!!
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Ok Loving Mom..you had your lump out first..that is Ok..I had a lumpectomy and then a few weeks later I had chemo...I think (and ladies correct me if I'm wrong)..but if your lump is a certain size then they do chemo first..to try and get it smaller for surgery...the ladies that have this done KNOW if the chemo is working or not...If you have a smaller tumor it is usually removed first then the chemo...not sure if it makes a difference or not.My onc told me that the lump is out..now to go after any cells that may have escaped (chemo).then they do radiation to the tumor bed to zap any bad cells that may have remained there after your surgery and chemo...all in all you will be treated heavily..and you need to be...all in all it took about 8 months...short period of time to hopefully have a LONG time..
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I agree completely and I am willing to do anything to ensure that it is all out so I can get back to living life normally
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babs37 - CONGRATS!!! Isn't it great to finish chemo??? I am so happy for you!
Michelle - watch out on wearing heels. I took L-Glutamine and was fine. Then, I wore heels to my sister's wedding and that's when the neuropathy started. I noticed when I wore sandals with heels, it got worse. I mentioned it to my chemo nurses and they told me, yes watch the heels (why didn't someone tell me that in the beginning?).
My neuropathy is numbness in my toes and I drop stuff a lot.
Sooo... the director at Susan G Komen emailed me today and asked if I could speak at a women's college basketball game. She wants me to tell my story. I am so excited!
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Woo hoo! I can finally post from my iPad!
Friends - I am so very sorry at the loss of your daughter. I hope your wonderful memories provide you comfort until you meet with her again.
I met with my breast surgeon yesterday, and we are planning surgery for the week of March 7th. I will be having a BMX with left node dissection (level 1 and 2). She was very pleased at my response to chemo, and reassured me about my nodes, which are still a bit swollen. She said she sees scarring and dead tissue "all the time" and when she felt them, said that is likely what it was. I have three grouped together and she told me what often happens is they "melt" into a cluster, and that's what it felt like to her. She is a 20- year specialist in breast and node surgery (that's all she does now) so I'll take that, lol.
I have 4 more weeks of chemo left - had to do Neupogen shots this week, ugh. I'm hoping to only have to do that once more...
Loving_mother - please know this is NOT a death sentence. I have three young ones, 9, 6, and 3, and am 41. I go through the hills and valleys as we all do, and it sucks. Truly sucks. But my oncologist tells me every week that the statistics are OLD, and even the recurrence rate she quoted for my specific stats is not accurate. I am Stage IIIa, and the old stats have me at a 30-35% chance of recurrence. And what that means is that even outdated numbers show that the majority of women survive and go on to live full lives!!! And TNs respond much better to chemo, definitely. I had a 50% response to the AC, and after 4-6 weeks on the Taxol/Carboplatin, my tumors were gone. Even if I don't get a complete pathological response, my doctor told me that in her experience, it still has improved my odds of no recurrence.
Another thing to understand is that TNs don't necessarily have a HIGHER recurrence rate from ER/PR+ - rather, it is a different pattern. Yes, if it comes back, it does so quicker and more distant. But because it is not hormone driven, after 3 years the chances drop drastically, and after 5 my doctor considers you cured. Can it still come back after that? Yes, but your chances are about the same as the normal population. ER/PR+ don't have that "luxury" as they continue to have a higher chance of recurrence for 20+ years.
Any cancer is terrible, and each is different. Even down to the individual. Make sure your doctor is one you literally trust with your life and who will give you what you need both physically and emotionally. I swore from the start I would not let my doctors fail me, and so far, they haven't. My oncologist doesn't sugar coat things, but is very encouraging and knows I need reassurance that I can beat this. She is also very open to going beyond standard treatment if it shows promise - mine agreed to adding Carboplatin to my Taxol without hesitation, and now other doctors in her group are watching my progress, and another is doing the same because of my response. She is the perfect fit for me - and I STILL got a second opinion. This is such an important decision, so trust your instincts and ask questions!
I'm sorry this is so long, I feel your fear and pain so deeply. This board can be awesome - read the survivor threads! But for now, stick to the safe zones until you are ready.
Laurajane - I lurk mostly, but am thinking of you! I hope all is well!
Fighter - you made the comment that your doctor feels we are the first TNs who will record an increase in survival rates...mine says the same exact thing. It is great to have that reinforced!
Lol, now that I can use my iPad, I'll be on a lot more often.0 -
Suze35: Well said to loving mother! Glad you're getting along with your treatment. Sounds like you're well on your way and so glad to hear your response to treatment so far! Just curious though... why are they waiting until May for surgery? You'll be done with chemo late February right? Neupogen is a drug I can't take. It caused me to have tachycardia. Neulasta does well for me with and honestly I haven't noticed bone pain. But my skin hurts to the touch for a few days afterward around the neck, shoulders and back.
My last chemo is a week from Monday! Feels weird to be almost done with it... but definitely a good kinda weird... scary but good.
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Cc4npg - my bad! I meant March 7th! I preferred neulasta myself, but I can't use it for weekly chemo, I guess it is too high a dose according to my doctor. Valentine's Day is my last chemo, something to celebrate for sure. Congrats on coming to the end...it must feel so good to know you only have one left - but I can understand scary. I apologize for not keeping up - have you had surgery yet? I'm crossing off the days...
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Suze35: Yes, I had surgery first, on 10/7/10. My tumor was 3 mm in size, so small that I actually had to have a second opinion to figure it out because the entire invasive portion had been removed during stereotactic biopsy on 9/1/10!! The only thing remaining was a small amount of DCIS, so truly whoever reviewed my mammo really caught this super early. I was a wreck before surgery, but what my mind was imagining was way worse than the actual event. Here's to you having a smooth, uneventful surgery and super quick recovery! I have one last surgery Feb 28th... my exchange and ooph. I'm BRCA2+ and so thankful I could schedule both surgeries together. Then I'm looking forward to seeing what's at the end of this tunnel! I can see a little glimpse of it: green grass, sunny blue skies, warm weather, and hey, there's even a little rainbow I think!0
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Angelisa - yes, there is a rainbow!
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