Calling all TNs
Comments
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Good luck, Hopebry! It’s hard making all these decisions and juggling little ones. My twins were 6 when I was diagnosed and they are 8 now. They have been the driving force in most of my decisions. I’ve also gotten some good ideas for empowering them and tons of support from fellow BC survivors. PM me if i cnhelp!
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CONGRATS, CATHYTOO!!!!!
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HopeBry
I found my lump about a month before my mammogram. I can't explain really, but I knew without a doubt it was breast cancer. This was later confirmed with biopsy. My lump was 2.2cm. I was misdiagnosed as estrogen positive due to my 1%, so I had my surgery prior to chemo. I was upset once I found out I actually had TN, but all I could do was move forward. But I will say some parts of me were glad the cancer was out. I had clear margins and 2 nodes/sentinel were tested and were negative. I also had no vascular invasion. I did 4 dose dense AC and 4 DD taxol. That was it. I had a right sided mastectomy so no radiation. I actually wanted radiation but my MO didn't agree I needed it. I sure hope she was right! So now I'm 3 months out and trying my best To put this behind me. This is my story. Hope it's helps in some way! Good luck.
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Just stopping in to celebrate 6 yrs from daignosis (10/30/12). Lots of scares since then but each year gets better. Stay strong, be inquisitive, dig in and partner with your medical team (don't take orders), be reasonable (and rational), make memories (better prioritize whats important), accept what's happened (you'll never know why) and carry yourself with grace (always think of your legacy). xo
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Thank you jenjenl...words and perspective to live by!
Congrats on 6 yes, and many, many more to come! ☺️
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@cccmc2 - thanks for your story, it was helpful. Did you get reconstruction or you kept as is with the scars?
Im still leaning towards the dbl MX as a precaution and definitely want evenly reconstructed breast without the use of the flap techniques. I dont want any other parts of my body cut to create a boob.
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Good afternoon . I come on once every so often. I finished my 12 taxols, and Wednesday will receive my 2nd of 4 rounds of a/c. I am tnbc. I just have been feeling very overwhelmed about everything. I started feeling positive now closer I get to ending chemo I feel panicked. I keep reading about tnbc and I fear all this chemo isn't working, I just needed a little pick me up today. I have like 4 eyelashes left on one eye and know whatever has grown back on my head will fall out again. I am tired of people saying it is only hair also. Anyway if anyone experienced all this negativity and panic please share how you get through it.
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Volley, I was where you are once and it helped to know that once treatment was over my MO was still seeing me every 3 months and that I would still be getting scans. If something comes up it will probably be caught. During this time I also learned a lot about my body. Trust that you know yourself, and when something is not right. I made that mistake and believed my doctors when they said the lumps I felt were from scar tissue because ‘you’ve had so much chemo’ I also found I was way more upset and emotional when I was done with treatment than during. It’s ok to feel overwhelmed...it a crazy thing to go through so don’t be hard on yourself is my advice. I hated having random hairs! I had one long long lower lash that wouldn’t fall out. I was so self conscious of it I wished the hair falling out would be all or nothing! It was easier to manage once I did lose my hair though as I did not have energy to wash it and style it and I didn’t wake up with tons of hair on my face, in my mouth and all over me from falling out in my sleep. It sucks since hair, for me, made me feel feminine and was part of how I identified with myself. I hope the rest of your treatments go well and who knows I’ve heard some people’s hair grows back fuller and healthier than before!
Mine turned curly
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I don't think I've ever posted on this TN thread before, though I've been reading it. Volleyballmom2008, for what it's worth, I was very much in the same place emotionally. There came a point where I realized nothing "sensible" other than exercising was going to ease my anxiety (like concentrating on work or meditating or doing relaxation exercises or journaling, etc.). I resorted to binge watching stuff on TV or Netflix or Prime and occasionally taking Valium, especially to help me sleep. I hear you on the hair. I found it beyond absurd to realize that emotionally, I was more disturbed by my hair loss than the life and death situation I was in. My last chemo was at the end of August, and my hair is growing in fairly thick by oh so slowly. My eyebrows are more or less back as are my eyelashes, though they're not long enough or strong enough for mascara.
I feel very lucky to have gotten a PCR and clear nodes, and I hope the same for you. However, I know it's no guarantee, so the worries will probably continue indefinitely. The panic has faded, though, thankfully.
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Volleyballmom, Parrynd, sillyoldrabbit,
Thanks for sharing these feelings so I can be prepared. It sounds like something I would go through. I am impatiently waiting to get started on the treatments. Tomorrow I have a biopsy for a place found in a vertebrae. Hopefully the results come back negative and we go the course as planned with chemo starting 11/28.
I cherish everyone's post as it makes me feel among the strongest women!
Happy Thanksgiving to everyone!
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The truth is that no one “gets it” unless she’s gone through it. It is just such an overwhelming experience - emotionally, physically and mentally. Some days you’ll feel you’re in control and maybe have a grasp of things and then the next day you’re a weeping mess.
I marvel at the strength , respect and compassion on these threads - we are never alone.
sillyoldrabbit - we followed the same coping manual! I exercised, binge watched and took some drugs to sleep!
I did also journal, but mostly just to rage. My plan is to burn it on a camp fire at some point in the future.
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Volleyballmom, and all who have responded, I firmly believe that when faced with a beast like TNBC, freaking out is the most natural and normal thing in the world. I mean, who wouldn't? Unfortunately, it is not very helpful, so, when I had a chance to participate in a "stress management skills group" for cancer patients organized by a psychologist at the hospital system where I get my treatment, I jumped at it. That has been helpful. Over the course of six weeks, we talked about a number of topics, including taking care of yourself; recognizing and challenging unhelpful thought patterns; focusing on what you can control; and taking an inventory of your sources of social support and learning to identify the people who are most likely to be willing and able to help you with emotional or practical needs as they arise. The most useful lesson was: this is a stressful situation, so you WILL have stress. Be ready for it. Another one that I found helpful: doing something you enjoy is a perfectly valid stress management tool. At least when used in moderation. So if you find yourself thinking bad thoughts on some dark night, and meditation, deep breathing, and stomping all over those bad thoughts aren't cutting it, and binge-watching TV while eating pepperoni pizza makes you feel better, then binge-watching while eating pizza is an OK thing to do. Of course, you may not be a fan of pepperoni or whatever is on TV in the wee hours. In that event, use the "stress busters" that work best for you.
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I also found doing normal things I did before diagnosis helped me find a new normal and feel like the whole world wasn’t crashing around me.
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Parrynd1,
That's what worked for me as well. Great advice!
Vickki
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hi all.
So I’ve been out of treatment about 3 months. I have a stressful day here and there but I’ve really been doing pretty well- staying out of my head. That is until last Friday my dr called and said my labs were great except my vitamin d was really low. She promised she wasn’t hiding any bad news from me and said I need to start on a supplement and we will redraw labs in 3 months. So the past few days my knees have been really achy and I’m scared. Maybe I shouldn’t be. Can this still be an effect from chemo or the low vitamin d? Thanks for any info!
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cccmc2 - bone pain is definitely a symptom of low vitamin D. And you can definitely still have joint/muscle pains from chemo - I was in a lot of pain for at least 3 months after chemo.
Also, the knees would be a very unusual spot to have bone Mets, if that is your fear.
Hope you feel better soon - it is so hard not to get in your head and worry.
Hugs.
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VL22,
Thank you for easing my mind a little
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I also had very low level of vitamin D when I was diagnosed. My MO has me taking 2,000 IU of vitamin D3 daily. There has been some research that good levels of vitamin D help prevent some cancers. Bone pain in a symptom of low vitamin D as VL22 mentions. I tell everyone to get their viatmin D level tested.
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elindy,
Thank you :-)
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interesting to know about vit d and bone pain. I had joint pain for months and still do sometimes the day after I’m especially active or workout really hard.
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My D was 29 ... taking 5000 IU/day it is now 66. My naturopathic MD wants it to be above 80
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santa- I really believe that it can also be the after effects of chemo. My joint and muscle pains were just so horrible for months after my chemo ended. No problems during, but about a week after my final taxol I was just in pain
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Just found out I am Braca Negative. Yay! Im still stuck on the Lumpectomy or Mastectomy decision for a TN. Do most TNs opt for MX when negative for braca gene anyway? Has any TN had a reoccurrence with lumpectomy?
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HopeBry - there is no right answer, which is what makes it so difficult. I had a lumpectomy and I feel 100% confident with my decision, especially after a friend of mine had a mastectomy and within a year had a recurrence. But I have a friend who felt a mastectomy was the only way for her and that was 7 years ago - no recurrence.
Get all the facts you can and make an educated decision that you can live with - easier said than done! I just could not imagine giving up my breast if all my doctors recommended a lumpectomy.
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I'm TN, also BRCA negative, and I plan to get a lumpectomy... My understanding is survival is the same as long as you get whole breast radiation after lumpectomy.
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HopeBry, all of my docs (PCP, MO, and BS) independent of each other recommended a lumpectomy, basically saying what santabarbarian mentioned about the outcome being virtually identical. My PCP also mentioned the higher complication rate with an MX. It's also a long, uncomfortable process if you go for reconstruction. However, with a lumpectomy, it's just about certain you'll need radiation afterwards. With an MX, you might not. I've also read that doctors in different parts of the country vary in their philosophy, with MX's preferred in the south and midwest and lumpectomies elsewhere. Go figure. I pretty much sailed through the recovery period after my lumpectomy, with full range of motion and very little pain. Within 3 days, I felt pretty normal and ready to move on. I know I was lucky, though, and not everyone has it that easy. I hope you are able to reach a decision you are peace with.
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I'm curious if anyone out there had neoadjuvant chemo, then surgery. Did anyone have to have chemo again AFTER surgery? What would be the reasons for that? I'm just about done chemo (YAY!). I am going to have a BMX soon (date to be determined). Not sure what the plan is after that...
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Im going to have chemo oral pill Xeloda after surgery and radiation. Reasoning, the tumor was Partial responded to chemo and still greater than 1cm. Need to reduce my risk of reoccurance..
Happy Thanksgiving .
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KWilli
I asked my doc what he would suggest I do, if I do not have a pCR. If that is the case, there are two follow up chemos he mentioned. One is Capecetabine. There was a second one I forgot the name of. I believe Capecetabine is 6 mos, and it's a pill and what he would favor.
I am planning that if there is still any live cancer when I have surgery, I want to get it re-tested in case it has morphed and has any actionable targets we don't yet know about.
My original tumor testing showed high AR+, so that might mean Enzaludamide, which he could give me off label. Little else came back as actionable. I am actually glad I tested it up front (had to pay), because knowing there were not a lot of follow up options has made me more hard core in cleaning up my diet and pursuing all sensible integrative options. From my testing, all I have so far is "equivocal" EFGR expression (a few agents target EFGR, but my EFGR is not high). There are some other specific things I was not tested for. I am wondering about ER-beta, and whether some estradiol might help me? I am wondering about PL-D1.
Any other ideas to be tested for, from the group??? What has helped you??
The one and only risk factor I have for BC is DES exposure, in utero. DES is an endocrine disruptor. Hence I am sure something endocrinological is going on that prompted my cancer. Some hormone signaling mishaps that played into the development of my tumor. Little is known yet about DES and TNBC but they are now figuring out that it's a 2 times higher rate of post-menopausal breast cancer, in DES daughters.... again menopause = hormones... So, I am wondering if there might be a 'lost hormone' aspect to what caused my tumor, that estradiol supplementation might help? Something I am looking into.
Possibly helpful for TNBC and I am looking at... copper chelation.
Anyway-- thinking along the same lines, and having one eye towards what I might need to do after surgery... but still hoping for pCR!
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Hello everyone,
I just wanted to wish all you American ladies on this thread a Happy Thanksgiving.
Best wishes.
Sylvia xxxx
13 years and 5 months since diagnosis
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