Calling all TNs
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LisaJ Woooooo!!!
LoveMyVizsla thanks for the welcome!
AgathaNYC I hope it goes great for you! Have a super weekend!
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Hi, I just wanted to introduce myself. When I first joined the forum, I found it extremely slow and posting was unbelievably frustrating. Suddenly the last week or two, I'm not having any technical issues, so hopefully this will continue!
Anyhow, I was diagnosed with TNBC on Valentine's Day. I had an 8 cm tumor and was very scared. We signed me up for an investigative study through Eyespy 2 and then standard chemo. I've done 12 weeks of parp inhibitor, 8 weeks of AC and I've done 7/12 weekly Taxol w/Carboplatin every 3 weeks. Until this week, my biggest issue has been blood counts delaying treatment. I had some minor neuropathy until Sat it got much worse. At yesterday's infusion, I started icing and my MO lowered my carbo dose. Also started Gabopentin. Im hopefulthat dose reduction & icing will contain my issues. I've had a good clinical response. Haven't felt tumor in months but MRI still showed tumor after AC so we're not sure what expect. The MRI did show two masses, so we think it may have started as two tumors pressing together. Seeing the surgeon in Nov and will get another mammo & MRI. I'm told MRI could be picking up necrotic tissue so I need to wait until pathology, down the road.
I have 7 yo twins and they have been troopers but it's been hard on them and my husband.
Look forward to learning more about you ladies. Lyn
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I'm trying to figure out how our doctors determine stage. Based on what I'm reading I would be Stage II, however, my doctor said stage 1. I think I'm constantly confused. lol!
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Thanks for bringing staging up karenwrite, I wondered that as well. If you become NED does the whole staging start all over again? Also, what about when your 5 year clock starts. My wife had been ER/PR+ HER2- for almost 5years now. She was NED for about 8 months of that (AL's & tamoxifen failed). Her estrogen Pos BC turned triple negative last March so she's on a different treatment regime (Xeloda and it's working). Does my wife's 5 year clock start all over again because she's now triple negative? Breast cancer studies always show 5 year survival for estrogen positive and triple negative separately.
Just asking
MikeW
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Karen - I'm confused by your staging also - your tumor size would put you at stage lla . My BS originally told me the wrong stage (llb) but corrected to (1b) In either case, still considered early stage and outlook is good
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VL22... I'm going to confuse you even more. My RO just told me that staging has been revised. She said I was now Stage 1 because I had no node involvement. Who knows??
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HI Lyn! I'm new here as well. Welcome! Sorry about the side effects, I hope they settle for you.
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Hi, had an MRI after AC and one of my tumors shrank but the other didnt. Dr is disappointed I havent had PCR and added Carboplatin to my weekly Taxol. Did anyone who is out from treatment get a PCR? I don’t think they are super common but my MO has me in a funk now because I haven’t gotten one. I’m happy to have Carboplatin added to my regimen, but I think it does make it a bit harder.
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Hi Ubeee! Nice to meet you.What treatment are you doing?
Rdeesides, I’m still in treatment, so I don’t know if I’m going to get PCR but my MO felt adding carbo would give me my best shot.
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Yeah, I'm unsure of what she felt it was in Stage 1, and I have a question send in to the office, but haven't heard back. I might have to call the patient navigator and see if she has an answer.
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VL22,
That was the only thing I could conclude. Even though it was invasive, it didn't get to the nodes. I'm guessing that is why?
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I simply want to lend my support in the frustration with shifting, morphing diagnoses. First I had ILC, then it was IDC, now it is primary IDC with patches of ILC mixed in. I know I won't get a full picture until I have the mastectomy and they can check the entire tumor, but still it's messing with my head.
My oncologist more or less told me it didn't really matter what type it was, that it was Invasive Cancer and not get hung up on the subgroup. I explained that it helped me to have a name for it. So in my head I had a specified adversary. Made it less nebulous and terrifying. I'm hoping she got that I need to put a label on it for my own peace of mind.
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For all of you who are just starting this journey, I want to say there is a light at the end of the tunnel. I am proud to say I just walked the "Survivor's Walk" with my wife for the 4th year at the local Breast Cancer 5K. Yes your life is changed...but there is hope and it DOES get better!
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Hello,
NOT getting a pCR is NOT a death sentence! I am sure there are many who did not achieve a pCR are still living long and well- and, there are also people who don't even know if they got a pCR because they had adjuvent vs. neoadjuvent chemo!
I was down for a while about not achieving a pCR and my MO said to move forward as if I'm going to be cancer free in my life. I have not looked at the research thoroughly and frankly don't want to- doesn't pertain to ME!!
Janet
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Thank You Janet! I needed confirmation from someone. I know you are right but I’m just having a down day and the moral support is helpful.
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Alhusband - such great news! So happy you and your wife are doing well! Thanks for sharing.
Batesburg - it's so funny what we worry about and that we will always worry! My TN tumor was discovered during surgery, so I had no chance for chemo until after. I didn't even know neoadjuvent chemo existed until I read about it here! So in my head for weeks I fretted about it, wishing I could really know if the chemo is working. But then I realized I'd be freaking out if I didn't have pCR. Most days I do a good job of just living and not letting the "what ifs " and unknowns drag me down
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Great news, ALHusband!
Lyn
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Thank you for posting that, ALHusband. I needed to hear about your wife's success today. It really does help to hear.
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hang in there Agatha. it's shitty to not be able to put a name to what you have and i can see that it's important to you to know exactly what's going on with your body. but the other important thing is despite that, the doctors still know what to do.
rdeesides, i'm sorry to hear about your frustration with your AC treatment. i'm still on my 3rd dose of 4 with my EC, and my tumor shifts from time to time. it softens, then firms up, shrinks a bit, etc. but hang in there. There's no definite way until the doctors get in there during surgery,
i guess the rough part about neo adjuvant is having to deal with knowing how our tumors are reacting. it's rough to know my tumor is still there and never knowing for sure if it's getting worse or better. but i do hope it's getting smaller. and it sucks to have to deal with that mentally but we're here! and also we're in the same boat.
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mkn86 - Yesit kind of sucks not knowing what the tumor is doing. I feel it tingling or kind of ache sometimes and I hope this means it’s shrinking. You are right, we will only truly know at surgery. I will try not to waste time worrying, but it is hard
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hi rdeesides, sorry that you’re going through this. Have you had a lumpectomy? How do you know the chemo isn’t working on one of the tumours? The reason I ask is I had 2 tumours in my left breast. Ultrasounds during treatment found that the tumours we’re shrinking, but they we’re both still significant before surgery. When I had my double mastectomy, I discovered I’d had a PCR. It was just scar tissue. I hope this is an option for you
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rdeesides, i feel that shooting pain too. and it also causes me discomfort. every time i cringe i just mumble to myself: cancer cells dying.
it's still rough. sometimes when those moments show up, even though they're short and fleeting, sometimes i still tear up. i'd hug you if i could
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ALhusband- that's great news! Thanks for the positive note.
Janet- also thanks to you for your thoughts. Glad things are going well!
Cassylou- wow that's great! My last mri showed a much larger tumor area than my MO ( or I) can feel. I keep wondering what's going on in there but I really do just have to wait & see.
It is hard not knowing if I'll get PCR. Asothers have pointed out to me, many more people survive than get PCR so it’s not the final say on how things will go. Feeling like you're in limbo is just hard especially when you have side effects and really want to feel like you're doing the right thing.
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Hi Flynn! Sorry for the delay in responding! I had 4 x AC and next week is 6/12 weekly Taxol.
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hi everyone.
I have just had my diagnosis of TNBC stage 2a grade 3 Ki-67 80% confirmed post surgery last week. I found the lump 4 weeks ago and after a failed core biopsy due to fibrotic tissue showing inconsistencies we elected to go straight to surgery. In the 3 weeks from biopsy to surgery the tumour doubled in size on ultrasound and was confirmed by histology,so I am very happy to have it out of my body!
I am 34yo and mother to 2 little girls so very much plan on having genetic testing for BRCA1/2 and other sub sets l. Just wondering how many of you have returned BRCA positive testing after diagnoses?
My surgeon doesn’t think I need a mastectomy as I had clear margins and clear nodes unless unless I feel that is what I want, but my main concern is reoccurrence even though everything at this stage is “clear” so many decisions.
I have my first oncologist appt tomorrow so will find out about chemo tomorrow.
Sending positive healthy vibes to everyone x
Nicole
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Hi Nicole! TN is a scary road, but glad your moving along fast. I only had a lumpectomy and my cancer team supported this choice 100%.
Good luck with your chemo consult and your positive attitude will help. This journey can get bumpy and the mood swings can be shocking, but this is a great place to find support.
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Hello everyone,
I was diagnosed in July 2017 with tnbc stage 2B at 40 years old and just turned 41 in October. I finished my AC treatments every 2 weeks and am now on my 12 weekly taxol I will be receiving #6 next Tues. Then BS says lumpectomy and RO says radiation 5 days a week for 5 to 6 weeks. Its scarey but I have a wonderful support system
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Hi kmajor - sorry you're here. I also finished AC and do Taxol #5 tomorrow. I had my lumpectomy on the front end. It seems like so many of us in our 40's are being diagnosed and so many with TN. It is so scarey and every day it is the first thing I think of when I open my eyes. But we have to keep living. I just hope we can all get to a time when we don't think about BC every day
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Hi VL22 - I'm sorry you're here also. I was so happy to finish AC I felt like we had gotten something out of the way and finished. I did fairly well on AC side effects were manageable. Taxol has been good so far I just get some bone pain mainly in my back. I pretty much sleep through my whole treatment the benedryl knocks me out. I hope taxol is being kind to you. Like you bc is on my mind as soon as I wake up and it can be exhausting. I try my best to stay positive always.
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Nicole, I'm BRCA1. Questions? Let me know.
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