Calling all TNs
Comments
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Ah DIV, lovely to hear that you are doing well and driving again. I don't know whether my post will work, my keyboard has gone a bit funny. Love to all you TN sisters.0 -
Great to see your update, DIV!
LoveMyVizsla, thanks for the lymphedema info. I hope the research proves fruitful.
Lyn
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this is a strikethrough error and it is likely on your keyboard you are right. I don't know what kind of device you are using to help you reverse it
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I find it so comforting to "meet" my warrior sisters in this battle against triple negative. I have been reading your posts and they teach me, make me feel that I am not alone, and they inspire me.
A little bit about me...I found my tumor late last September and was in neo-adjuvant chemotherapy by the end of October. I was diagnosed with grade 3 with a 100% replicity rate. During the 2 months of phase 1 I was nauseous 24/7 and ran many fevers. About a month in on phase 2 my nauseousness decreased (but never went away) and I struggled with exhaustion - finally stopping chemo. I was left with anemia, low blood counts, and neuropathy. Within 2 weeks of stopping chemo I found another tumor had grown so I had a double mastectomy on April 6th. My sentinel nodes were clear. I have healed very well and have complete movement of my arms, but I have a buildup of lymphatic fluid in my chest, pretty severe nerve sensations, and significant bands of scar tissue. (All my life I have been an overachiever in producing scar tissue.) I just started PT. It seems I am always in pain; I feel like I have the tightest bra in the world on with the worst sunburn underneath. Hopefully this will subside soon. My doctor is working on getting me into a clinical trial but even if I don't get in I will begin chemotherapy again in a few weeks.
That's my journey so far. My friends and family call me an inspiration as they see me as so strong and I use humor a lot. (I burned my bras the night before my mastectomy - I'm a 65 year old former hippie. I just thought it was funny to do again and I needed to cheer up some friends so I texted them the picture to get some laughs. It seems my friends were more upset about me losing my breasts than I was.) The truth is, as I am sure you all know, that I have my down times - usually when I am extremely nauseous or when I wake up at 3:00 or 4:00 in the morning. No one understands this fight even when I try to describe it to others. Many think they understand because they have a friend or a coworker who went through this or they once had a biopsy or a scare when they thought they felt something in their breast. No, they don't have a clue, but I know you all do.
Wishing you a blessed night and a tomorrow full of hope and positive energy.
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Warrior2016...let me the first to welcome you to our group of wonderfully caring and supportive sister "warriors". I have a question for you...how did they determine your tumor was 100% replicity rate. I never heard this phrase before
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Warrior, yes, welcome! I love your description of yourself...words like overachiever, humor, hippie! So glad you have a good outlook, good support system. These are so important!
Cathy, I will wait to hear Warrior's explanation of the 100% replicity rate, but I might guess she is referring to the Ki67 protein in her cells, there is a test that shows how may cells are ready to reproduce, and this protein is present in cell reproduction.
Good day to us all
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Thank you for the welcomes Cathytoo and Meadow! I guess what Meadow is referring to (the Ki67 protein) is correct. At the time of my biopsy 100% of my cells sampled were in the process of division. Once again, I am an overachiever!
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Welcome Warrior! I like your description of yourself! I, too, am a 65 year old former hippie (yikes! 65??
In my head and heart I am not more than 1/2 that age!)Div and Meadow, - good to see you here!
I have to scroll back and catch up on more posts, - but I hope everyone is feeling well and had a good Mother's Day weekend!
Hugs to all
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Hi, Warrior2016, I'm sorry that you're here and that you've had such a tough time of it. It can be challenging to always have to present a brave face so it will be good to have a place to come when you're feeling strong, but also when you're down or fearful. Love the bra burning!
Regarding the tight chest, did you get tissue expanders or is the sensation from the mastectomy surgery alone?
Lyn
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Meadow & Warrior...nothing on any of my pathology reports mentions Ki67. Is it common to test for this if you are TN. I once asked my oncologist and he made light of it. But, then he makes light of everything‼️‼️
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I had that test done too, Cathy. Mine was 20%, I think.
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If I recall correctly, my Ki67 was 90% at biopsy and 60% at my lumpectomy. The oncologist put a favorable spin on the alarming results by noting that rapidly dividing cells are more vulnerable to chemo.
Lyn
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My Ki67 was 95% at diagnosis in my triple negative side, but chemo brought it down to 37% at the time of my BMX. My breast surgeon told me that if you don't get PCR from your chemo, (which I didn't) then reducing your Ki67 by a good amount is the next best thing. I would have rather had both!
Trish
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Cathy, my Ki67 number has never shown in any of my paperwork, but I did find it in my original paperwork folder that I was given at diagnosis. I came across this folder while purging a bookshelf. I had stuck it there during the whirlwind of diagnosis time, when none of it made any sense anyway. That is the only time I saw it in print. Mine was 95. You my have to go back in your chart or paperwork to find this number, and press for it with your Onc if you really want to know. We have, you have, kicked cancer to the curb, and just remember that. But it is good to know our situations, and how far we have come.
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Hi everyone. I was diagnosed with triple negative March 15th and started chemo March 28th. I am half way through chemo. I get treatment every 3 weeks; Taxotere-Adriamycin-Cytoxan.
I am trying to decide on lumpectomy (sounds horrible because of radiation – every day for 6 weeks?), mastectomy on left breast (only place with cancer) or double mastectomy. I keep thinking I want the double because I don't want to go through this again but of course am terrified about cancer coming back anyway since there is no friggin reason explaining why I have it in the first place.
I am afraid to know too much (don't want to freak out) and don't understand all the acronyms people use on this site.
Can anyone help with questions I should ask to help with my decision? Oncologist thinks lumpectomy, plastic surgeon thinks mastectomy with lift on the right and reconstruction on the left, other surgeon (I see him in July right before my chemo ends). They are all men so having a hard time.
I just wish I could have new boobs and be past all the pain :-)
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Meadow...I'm not sure I want to know the Ki67 number. Just curiosity. Does it really make any difference? I wish I could be more positive that I kicked that damn cancer to the curb and run over it with a bus‼️ It's on my mind a lot every day, even though I'm living life happily and at in a more loving way. I have to say that cancer has made me a more tolerant, forgiving and grateful soul. But, I am fearful of it creeping up from under that bus. You know those horror movies where the monster is still alive‼️ I hope you are feeling GREAT.
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BEX1966....PM me and I can give you some supportive help and answers.
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Welcome Bex, sorry you had need to join us. There is a button up there👆🏻on the left, it's navy blue and says Help with Abbreviations. My team asked what my preference was and I said lumpectomy. Then they saw how big it was and where it was and the surgeon was thinking mastectomy. I had just gotten used to the idea of a mastectomy when she said she thought she could make a lumpectomy work. I ended up needing a re-excision, but am happy I didn't let her talk me into a mastectomy. You have to do what is right for you. I still have pain, but I imagine it would be worse if I had a double mastectomy and reconstruction. Do your homework, ask questions here and of your team.
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Bex- I struggled with the decision of lumpectomy vs. mastectomy, too, but you may need to just put that decision off for awhile. I was just about deciding on the lumpectomy when my second tumor appeared and then the doctor recommended a mastectomy. My right breast was healthy but I chose a double mastectomy mostly because I have a friend who has a prosthetic on one side and she said her life has been miserable - exercise classes and swimming are uncomfortable for her because she feels so lopsided. I think the question you should be pondering is how you feel about your breasts. Do you think you can emotionally live without them? Explore your feelings and then let time and the results of your chemo finalize your decision.
Lyn, (VLH), I did not have reconstruction. I decided to go flat - I am 65 years old and did not want to spend anymore time with surgeries or procedures. I want to be free to enjoy life. NYCG, my boobs did things like dancing merrily at the May Day protests in Washington, D.C. - most of the time I was topless. Eventually I grew up and became a responsible professional, had children, and nursed them. So, my boobs had a great life and it was their time to go. I don't miss them because to me they represented cancer.
Cathytoo, I am so with you with the errant cell. I visualize one little cell riding through my bloodstream (like on a water slide) yelling "WooHoo, where should I land?" I've got to keep laughing.
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Warrior - love the boob stories! I have had problems a lot of my life with pain in my breasts. I have had cysts removed on the right (non cancer breast) 10+ years ago and they came back. Those were taken care of during my most recent biopsy but I feel like they will keep coming back.
I appreciate my breasts and I hate them. I am 50. Part of me is accepting of them (sag and all) and another part of me feels like they are my enemy. I have a lot to process I know and really on the roller coaster of emotions.
LMV - thanks for the help on the acronyms and saying what you did about "what's right for me".
Thank you all very much - I am so glad I opened up and posted because you are giving me good things to think about.
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Hi, I am new here. Wishing everyone the best and my heart goes out to all of you!
Cathytoo. My ki67 is 90%. My tumor was fast growing. Went to bed one day without it and it was large enough the next morning that I felt it when I pulled my knees up, hitting my breast.
My surgeon never commented on the ki67, my oncologist said it doesn't mean much and my genetic counselor said those tumors are usually always killed off fast by chemo. Let's hope so since I had surgery first! I had a rush biopsy after finding the lump and never got the hormone status until after excision. I only knew it was a high Grade 3 tumor. Surgeon asked me If I wanted chemo first and I said no. I just wanted the tumor out. It was at the tail end of my breast, close to the underarm.
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Bex and Whirlaway, welcome to Breastcancer.org! Sorry you had to be here but we're so happy to see that you decided to join. We hope you find this wonderful community to be a place of support and helpful information!
Warm wishes,
The Mods
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Hi everyone.
I was 42 and 1/2 when I was diagnosed in oct 2016. I'm not really new at this site since I've been reading your posts throughout my treatments. Went for routine mammography (dense breasts and some cysts - had done one before in 2013) and ultrasound but to tell you the truth I had noticed something different in my left breast but was so vague I didn't gave it attention. It was in the ultrasound the doctor found what seemed a 18 mm mass. I was so lucky she had time to proceed with the biopsy at that moment and some days later I had the diagnosis: - TN, grade 3,Ki67 53,8%. MRI showed it actually was bigger (25 mm). Genetic testing was negative.
I was horrified specially when doctors told me I had to start with chemotherapy. But most of all I trusted my doctors. They said: it is true that this is an aggressive tumor, with worst prognosis in the past, more (and more precocious) distant metastasis... but on the other hand it responded much better to chemotherapy and in the last years since they had become more aggressive in the treatment the responses became much better. They also told me this was a disease that can be cured.
So I held on to that, placed a port and started chemotherapy 28/10/2016 (AC 4 cycles - every 3 weeks, followed by Paclitaxel 12 weeks), wanting to stay positive but thinking the worst. I bought a wig and hats but ended up not using them. I used a cold cap during treatments and kept most (ok - 50% perhaps) of my hair. I had some nausea, constipation (with ondasetron) and gained weight. With taxol I got some new pains, abdominal cramps during perfusions and also painful nails, muscles and joints (still have but are getting better). At the end of chemo I repeated MRI and the tumor had shrunk so much that it looked like a complete radiological remission...
Had a lumpectomy this monday and had my results today - complete pathological response. So today is one of the happiest days of my life. I am healing well. Still have radiotherapy ahead, but today I don't care. I know there is still a long way in front of me and lots of things can go wrong. But they also can go wright!
When I was diagnosed I read and read posts trying to find messages that would give me hope and that's why I wrote this.
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Wow congratulations SCM!
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scm12, I'm sooo very happy for you! I bet a great weight has been lifted from your shoulders
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What wonderful news, SCM!
Lyn
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SCM!0 -
Just out of curiosity, if one has a complete pathological response, how does the surgeon decide how much tissue should be removed?
Unfortunately, I didn't have neoadjuvant chemo so have no idea if chemo was effective. Then again, my biopsy showed HER2+ while the solid tumor pathology showed triple negative so I would have had six months of Herceptin and Perjeta that may have caused harm with no benefit. I still wonder if there are HER2 cancer cooties setting up shop somewhere with some triple negative pals.
Lyn
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we only know that it is a complete pathological response after the surgeon has taken the lump ("quadrant"). In my case the doctor that did the biopsies in october left a metal clip in the place she had biopsied. I did the chemo and repetead MRI. Because the mass had shinkred the surgeon was afraid of not identifying correctly the tumor and i had an "harpoon" placed next to the clip bedore going to the OR. And after taking what she thought was adequate they had a first look at it while I was still in the OR to make sure the margins were clear of disease
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