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    Posted: Feb 09 2020 at 4:37pm
Newly diagnosed TNBC on Jan 30th.  No matter how prepared I thought I was to hear the words.  "You have breast cancer"  Damn was I wrong.  I am fortunate to be in a state with one of the best cancer facilities... although I am still terrified.  They believe it has been caught early as tumor is 5mm  Clinical Stage 1Ta/bN0M0  but won't know until surgery.. Breast cancer does not run in either side of family.  Genetic testing should be back next week.   Most articles are negative and I can't bear to google anymore.  Thankfully I found this forum and have read many positive outcomes.  I know a couple people who had TNBC and have just passed the 5 year mark.  I'm slated for lumpectomy first, then chemo (hopefully can cool cap it) and then radiation.   I have my contrast imaging tomorrow morning to make sure surgery is still first and not chemo first....But either way, I just want this out of me...  anyway......just wanted to get involved with people who have and are going through this. Praying for everyone.  
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2020 at 7:21pm
I'm very sorry for your recent diagnosis. I can very much relate as I was recently diagnosed in Oct. My tumor was 7 mm, stage 1, no lympth node involvement, clear margins at lympectomy. The good news is yours and mine both were caught early! Do not drive yourself crazy googling. I did the same and while I believe knowledge is power and it's helpful to learn all you can, you need to understand you have a situation where you have a good prognosis because it was caught early. My oncologist keeps reassuring me of this as I did the same and completely freaked myself out after I was first diagnosed and read all these negative posts about tnbc. Not trying to discount the fact that it is a more aggressive form of breast cancer than the other types. But you caught it early and your in a good place  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2020 at 10:51pm
Thank you...my breast surgeon mentioned i was in a good place but that was before we found out i was TN.   I plan on doing whatever they say... I'm of course nervous about chemo...horror stories as well... would like to here more about your treatment and how you are handling all of it and any tips...  Im sorry you are going through this as well.. and Yes...it was caught early.  I keep focusing on that word.  I think I say it 20 times a day...  Hang in there as well..

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2020 at 1:28am
I understand how you feel. I never heard of tnbc until my diagnosis. I vaguely remember hearing about a more serious type of breast cancer  that younger, african-american, hispanic and/or BRCA gene mutation positive women are more likely to get - ironically, none of which apply to me. Googling the internet can put the fear in anyone. However, stage, grade, lympth node status all matter. And tnbc responds very well to chemo. My understanding is 5 mm is considered that "grey area" where chemo my not even be recommended. You'll know more once you've had more imaging and the lympectomy. I just completed my last of 4 rounds of chemo. I tolerated it much better than I anticipated. No nausea - didn't even have to take meds for it - just some occasional acid reflux the first few days. My appetite was very good - in fact, a little too good. I gained some weight during treatment - about 10 pounds. Some of it possiblly due to steroids/meds. But not exercising as much, stress eating, etc. played a part. Definitely focusing on getting back on track with eating right and my daily walking. Maintaining a healthy weight is important to help prevent reccurrence. Was told not to worry too much about it during treatment. Weight gain is common. But eat healthy as much as possible and with some effort I can get those extra ten pounds off after treatment is complete. I compare the chemo to getting the flu - but not as severe. A week after chemo I feel crudy, fatigued, a general malaise and stay in a lot and rest. By week 2 I'm starting to feel better, venture out more, start taking short walks, able to do some housework and errands. By week 3 I feel much better - like myself again. It honestly wasn't as bad as I thought. Yes, the hair loss part was probably the hardest thing. But cold capping is always an option! It really has worked for some women. I tried it the first treatment but it didn't prevent my hair loss. However, I went the  "do it yourself" route and ordered cold cranial caps off of Amazon and watched videos on YouTube on how to do cold capping. I may have been more successful had I rented a cold capping system but I couldn't afford it. Still I don't regret trying. I would've regretted had I not tried. At this point I have a couple of really cute realistic wigs that were covered by my insurance and I'm looking into hair extensions this summer. There's options out there. Other than the hair loss the worse part has been my recent hot flashes. Chemo put me into menopause. But I'm 50 and was peri-menopausal before treatment so I somewhat expected it. The menopause may or may not be permanent. I'm okay if it is. After suffering with heavy menstrual cycles for years I welcome it. Hopes some of this helps. You're going to have to go through some "stuff" but it's not as bad as what the internet would have you believe. It's caught early, it's treatable. ♥️🤗 🙏

Edited by Suebhs - Feb 10 2020 at 8:58am
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COZAZ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2020 at 10:31am
Thanks again.. You are a huge help to me with going through this.   I am off to my imaging and hoping that little bastard stayed at 5mm.  Dr. is recommending chemo.  I had a hysterectomy at 42 so hopefully that helps.  Same statistics for TNBC did not apply to me...  still waiting for BRCA test though..   Anyhow.. i'll keep you posted! Off to the hospital...  

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Feb 10 2020 at 11:42am
Prayers that everything goes well! Your tumor may actually end up being smaller after they remove it and get the most accurate measurement. So don't freak out if it's a little larger from imaging. Once it's removed they get the most accurate measurement. Please keep be updated. You got this 🙏♥️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2020 at 1:23am
So.. Lumpectomy done yesterday.  Clear margins and lymph nodes seem to be clear as well but waiting on final path report.  Was your chemo called Red Devil?  Sounds like thats what my oncologist goes with from what recovery nurse told me.  Fortunately cool capping is free at my cancer center due to a generous donation from a breast cancer survivor.  I'll know more at my chemo consult March 9th.  Lumpectomy wasn't as painful as i thought it would be other than being tender..  I had a seed localization for axillary nodes and they failed to tell me my body, especially my face would have a blue hue to it.. Freaked my mom out a bit when she came to recovery...  funny actually... trying to find some humor in this and am keeping a positive attitude.  Hope you are doing well.  

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2020 at 2:06am
Adriamycin is called Red Devil because it is bright red and notorious for bad side effects.  Everyone is different, but for me it wasn't that bad.  I had four infusions (combined with cytoxan), one every other week.  I felt yucky on and off for 4 days after each infusion, and there was always one afternoon the day after when I felt really awful and just laid in bed not even able to watch TV (no vomiting though).  Otherwise I felt pretty normal for the eight weeks and kept up with work and regular life.  I did 4 infusions of Taxol after the AC, and that was easier.  I needed a lot more sleep during the Taxol, and I got some neuropathy which eventually went away.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2020 at 8:39am
Your tumor was 5 mm, correct? And if there's no lympth node involvement I would think you're a good candidate for less aggressive treatment. I had a 7 mm tumor with no lympth node involvement and it was recommended that I do four rounds of TC. I was told doing a more aggressive chemo would only give me a 0.5 percent statistical advantage and not be worth the added risk of side effects. I've read a couple of recent studies online that have discussed the issue with treating early stage node negative tnbc and it tends to lean towards a less aggressive approach. Of course, the frustrating part is there's no crystal ball to exactly know what the future will bring and what the outcome will be. Some people hear tnbc and automatically think you've got to hit it as hard as you can. And I'm not saying anyone is wrong, just saying some studies have shown stage trumps biology and a small early stage, node negative cancer may not benefit from the most aggressive treatment. Personally, I feel there are no right or wrong decisions in these cases. It  weighing risks vs benefits and you have to do what is right for you based on the information you have and in consult with your medical care team. Just wanted to share this information I learned along my journey. Sending you prayers for healing!!

Edited by Suebhs - Feb 29 2020 at 10:30am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2020 at 8:00pm
Contrast imaging did show tumor being larger at 8mm.  Not sure what the size was when taken out..  Thanks all for your experiences.  Will help be understand more at my consult.  

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2020 at 12:40pm
Still less than a centimeter and that's good! Please let us know how it goes. Sending positive vibes that your consult goes well Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2020 at 1:06am
Some good news.... Surgeon said great actually.  Tumor was 5mm , probably showed 8mm due to inflammation on contrast imaging.  She said I was borderline needing chemo but that will be up to my oncologist. Dr. is thinking chemolite?  Can't find much on that but i'm assuming a lower dose of AC & T maybe?  Any thoughts on that. Im sure terminology is different depending where you have treatment.   I will know more on Monday with Onco.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2020 at 6:56am
That is awesome news!!! Yes, I was told if 5 mm or smaller with negative  lympth nodes then chemo may not be necessary. Possibly radiation treatment only or at least a less aggressive chemo regimen. I'm not familiar with chemolite. I'm very happy for you! That is great news! 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2020 at 7:58am
Chemolite probably means Cytoxan and Taxotere (or Taxol) x 4.  It's what I had 11 years ago and was commonly used at that time for small stage 1 tumors.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (2) Thanks(2)   Quote DonnaYardshopper Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2020 at 9:54pm
Hang in there. I am a BRAC1 gene carrier and was diagnosed in 1999 for the right breast, had a lumpectomy then 4 rounds of A/C + 36 rounds of radiation. Thought I was done and then in 2002 my left breast decided it too wanted to have BC, which was totally unrelated to the first one. Another lumpectomy, 13 rounds of Taxol done weekly and in 2003 I had a bilateral mastectomy with reconstruction (free flap). The good news is, I'm almost 21 years out from the first one and 18 years out from the second one and I'm doing fine. The hair grows back.  : 0)

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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2020 at 12:21am
Thanks ladies...  I'm sure i'll have much to share after my oncology appt.  Appreciate the continued support more than you know.  I've decided to go on Short Term Disability until I see how I handle side effects.   I have a high pressure stressful job with much backstabbing unfortunately and don't need that nor want that in my life while i battle.  This has opened my eyes on how to spend the next chapter in my life...  I know its Healthy and Happy so no better time than the present.   
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2020 at 3:25am
Cozaz,
Yup...with you on the job!  I worked with a person that was a bully and very angry...decided I could not fight cancer and her.  I took a short term leave during AC.  I was going to retire after the leave (not because of cancer, because of this woman)and my bosses offered me a new position and asked me to return. She was so angry!  So, silver lining?  Maybe!  Anywho, love my new position and after cancer...went back to work and stood up to the bully and her small group of followers.  Long story short...she retired and I have continued to make our office a bully free zone! I call it cancer courage! Ya gotta find something good out of all we go through!  Amen...Godspeed to all!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2020 at 8:02am
Totally agree ladies about putting health first! I took FMLA leave during my chemo treatment and so glad I did. I work as an elementary school teacher and our school got hit hard this year with illnesses - particularly the flu. A lot of teachers who had the shot caught it this year, and severe cases of it, too. Member of my team just diagnosed last week. Being single and the sole income provider has made the decision to take extended leave tough. But as they say, you can't put a price on health. Continue to take of yourselves Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote COZAZ Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2020 at 10:34pm
So great news!  Oncologist doesn't recommend chemo as my tumor was tiny tiny and believes chemo will do more harm than good so Sue you were correct in it being borderline.  He strongly recommends exercise and diet (i will be meeting with nutritionist) changes to prevent recurrence .  Still makes me nervous though....  

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2020 at 11:50pm
Awesome news!!!! Yes, everything I've researched and been told is that the chance of reccurrence is low when >5mm and no lympth node involvement therefore radiation only is a good option. I'm currently doing radiation and it's a cake walk compared to chemo. I would love to hear what your oncologist had to say about diet and exercise!! Now that I'm finished with chemo I'm really focusing on what I can do to prevent a reccurrence. I also met with a nutritionist that works with my oncologist. The recommendation I received was a low-fat plant based diet. Also maintaining a healthy weight and regular exercise. I would love to hear what recommendations your nutritionist gives you. Congrats again, that's wonderful news! 
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