Calling all TNs

mccrimmon324

Survivor2Be - I couldn't agree with you more, my problem is my intense anxiety.  The moment my onc starts talking about anything related to my BC, I panic and have little meltdowns.  My onc doesn't hold back, if there is info he feels I must know he will tell me but info like my chance of recurrence rate, I don't need to know that info.  I'm doing everything I can now, if I knew the number my anxiety would probably kill me.  I will not go to any doctor appt now without first taking a xanax.  I'm sure they are all very happy about that too

mccrimmon324

My boys just wanted to show their christmas spirit. 

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Anonymous

Hmmm.... I didn't mean to imply that I had "forgotten" about BC (as if that's possible). I have *compartmentalized* BC.

That is to say that my fears no longer control me; I control my fears. In fact, coming in here is what sets off the remaining fear I have.... especially when I read about those who have recurrences with similar Dx to me, or those who recur well beyond the magic 3 year period we all strive to achieve. That just scares the crap out of me, but there is one critical difference in my demeanor now vs. 2 years ago:

I *choose* to come here for reasons previously stated, I don't *have* to come here out of any fear-based motive. So, that gives me control over my fear, and that works for me.

MonikaV

 Hi Girls, my goodness it has been over a month since I last wrote. Just to let you know that everything is still okay. I am working,going to school and volunteering with the new BCpatients at San Antonio Hospital. I enjoy meeting them and trying to give them some hope. I want to wish you all Happy Holidays and that the New Year continue to bring better news for all of us. Thank you my TN sisters for always posting and comforting and encouraging each other. Here is a big ((((((HUG)))))) from California.

Anonymous

PS- so, FWIW, how do I control that fear when I come in here? I remind myself that cancer is a crapshoot, that's how. I firmly believe that the reasons people survive or don't survive is due to genetic differences not yet understood by medical science and, that being the case, it is totally out of my hands.

Then I go have a drink and a piece of chocolate.

CharB22

mccrimmon324 - I also take a Xanax before each doctor visit. LOL. I was just diagnosed yesterday with the dreaded triple negative, so I'm trying to learn as much as possible without scaring myself silly. I have a copy of my pathology report and my parent's have a very good friend that is a pathologist. I'm going to have him explain it to me at some point (after I pop a Xanax!!). 

I had a lumpectomy before I knew I was triple neg. I haven't gotten the BRCA tests done yet either. I almost wonder if I've done this backwards. Should I have gotten the BRCA test first and then opted for the double mastectomy instead of lumpectomy? I'm meeting with oncologist on 1/4 who is also the genetic liason to the cancer center. I want these puppies off if I test positive. Can I do that after chemo? Or was it good to get that little bugger removed so it wouldn't spread? It was only 1.2 cm and no node involvement, which I think is a super big postive. I keep 2nd guessing myself and it's making me crazier than I already am!!!

mccrimmon324

Char - I didn't know about my TN status until after surgery either.  In fact I was so rushed thru everything, no one offered a choice of lumpectomy or MX.  I switched oncologists after surgery and my current onc will be doing th BRCA test on me.  If I come back positive I will be having a MX and yes you can do it after chemo but you'll have to wait until it gets out of your system.  My onc said it's actually more important to have your uterus and ovaries removed as your move likely to develop that type of cancer too.  I guess the one thing I have certainly learned is STAY OFF THE INTERNET, both my husband and I made ourselves sick reading about TN.  I mainly stay on this site only now.  These ladies were quick to point out that most of the internet findings are outdated and TN usually responds very well to chemo.

ksmatthews

I agree with mccrimmon32, Stay off the internet!!

What is a BRCA test?  How do I know if my dr's checked me for this?

TifJ

ks- the BRCA test is a blood test that determines if you have an inherited gene that causes breast cancer and possible ovarian. There is BRCA 1 and 2- so far these are the only two that have been identified. Most TNs (but not all) who turn out BRCA positive are BRCA 1. This is something you might want to ask your onc about. If one is positive it is usually recommended to have a double mx and remove both the uterus and ovaries. I had it done and was negative on BRCA 1 and BRCA 2 came back with a "variant of unknown significance" which basically means there is something different on that gene, but it is not known if it contrbutes to breast cancer.

KSteve

Char - I had chemo first and then BMX surgery, and I didn't have to wait that long in between.  My last chemo was on 12/30/10 and my BMX was on 1/8/11.  So you have lots of options available to you.  I'll be thinking of you as you begin treatments and I hope it goes by as fast for you as it did for me.  Just take it one day at a time!  You can do it.

All - I'm scheduled for a PET this Thursday due to raised ALP level in my blood from last week's 6 month followup with my ONC.  I can honestly say that this is the first time since my original diagnosis that my anxiety level is through the roof.  I'm a positive thinker all of the time, but I just can't get the "what if" out of my mind.  I should have my results back on Friday, which will be great if the news is what I'm praying for.  I have had nothing but good news since I started treatments 15+ months ago.  So I wasn't expecting that call back on Friday to say my blood work was off.  Has anyone else had elevated ALP levels (normal is 50-136 and mine is 152) and had it NOT be issues with liver or bones?

Thanks for all of the past and future support.  Love this place!

Kathy

Hope60

Hi TN Ladies - although I don't post here much I hope someone will help me today. Just came from a "routine " 6 month mammo where I was told I have suspicious results and need a biopsy.  They see microcalcifications clustering near my scar and they don't know if its DCIS or something called fat necrosis..,whatever that is.  I just finished all my treatment last March and was just starting to get my head out of cancer land.  I don't think I can deal with all this again so soon. I am one step away from losing it right now....so scared! Thanks for any feedback.

KSteve

Hope60 - I am in the same boat right now.  I think the idea of any "suspicious" results is very scary.  I totally get your fear.  We just have to get through the next few days and find out what we're dealing with.  Do you know when your biopsy is going to be?  Hopefully we'll both get good results back.  That would be the best Christmas present!

Kathy

Hope60

Hi Kathy - Thanks so much for writing back to me.  I see you are in scary/waiting mode, too but not quite sure what your situation is exactly.  I was totally not prepared for this.  I don't have a date scheduled yet for the biopsy, they said they would call me in the next day or 2.  This place is so overbooked for procedures, I had to wait 2 weeks for a biopsy last time around.   And with the holidays coming, it can only be worse.  I'm going to call my BS tomorrow to see if he can help set something up soon, or send me to another radiology place. So it could be a while.  Not how I imagined ringing in the new year. When will you know your results?  I wish you a good report....yes, the best christmas present ever!!

CharB22

mccrimmon324 and Kathy -- my PCP said the same thing over and over. Stay off the Internet!! I've tried. I'm research-addicted (not just with this but with practically everything). So it's tough. One thing I noticed though in scanning through the signatures in this thread, is that everyone that's TN is Grade 3. Coincidence or the norm??

Thank you Kathy for the sharing your experience. I'm glad to know that MX can be done after chemo.

I'm sorry for those of you that are waiting on test results. I think that's soooo scary, but I'm sending positive thoughts your way.

Hope60

Kathy - I just read your earlier post & see that you're waiting on results from blood work.  Just wanted to let you know that I had elevated liver enzymes at one point -- not sure exactly which ones though.   In any case, it turned out to be nothing.  Eventually they went back to normal.  Wishing the same thing for you!

KSteve

Hope - my issue started last week when I went for my routine 6 month follow up with my onc. Exam went fine and wasn't expecting to get a phone call the next day to say one part of my blood work was elevated. Because of this, he wants me to have a petscan, which is scheduled for Thursday. Should have results on Friday. Like you, not how I was planning to celebrate the holidays with this extra stress. But I guess this will be our new normal. Anytime things come back not quite right and need more tests, it's going to be stressful. This is my first time since the original dx. Just praying we both get good results! And, by the way, if they don't call you by lunch time tomorrow, I'd start calling them about scheduling your biopsy!

Kathy

Titan

Hope...what do the calcs look like?  I'll make my story very brief but I had calcs in my other breast found on a mammo 2 weeks after I was done with chemo...there were 4 in a row..one was rod shaped..I was totally absolutely freaking...I had a biopsy and they were benign..they were vascular microcalcifications...   Calcifications are usually (like 90%) benign...and I know you are freaking and have every reason to be..the good thing though...if there is a good thing..if they are cancerous calcs..my BS said that rads. would be the only thing needed...I was already planning a masectomy...

I hope this relieves your fears a little..

Titan

Kathy..hoping for totally normal results..if I were a gambling person (and I am)..I would bet that this is nothing..

Anonymous

Char- TNBC is a very aggressive form of the disease. Grade three is the most aggressive cell growth, so the two go hand in hand...in other words, yes "the norm".

ksmatthews

My dr told me that my cancer was not hereditary so maybe they did check?  

Hoping and praying the ones waiting for results get positive news. 

KSteve

Thanks, Titan ... I will let you know if you should be heading to Vegas when I get my results on Friday! And if you're right, I'll meet you there! But, seriously, thanks for the reassuring words. I appreciate it.

Kathy

BernieEllen

Hi all, I'm waiting to go for a bone scan in january.  I have an aching pain in the back of my thigh. I'm also grade three - so the worry is always there.  

mccrimmon324

Hope and Kathy - praying (and believing) you'll both get good news. 

Bernie - Is your leg feeling any better or worse?  Praying for you too, I bet it's not BC related. 

Ksmatthews - At first my Onc wasn't going to do the BRCA test on me but at a later appt when I mentioned my paternal grandmother died young of BC, he changed his tune.  I go back on the 11th for my first 3 month appt, I'll remind him then that I need it done. 

mags20487

Welcome to the group Char.  I am almost done with chemo--1 to go on Dec 29th.  Many TN's do chemo first as it resonds well the chemo and can save you the Bmx.  Also docs can tell if it is not responsive and change up the meds.  I second guessed many of my early decisions and then went to a radiation onc and he backed me up with everything I did.  Made me feel so much better.  The beginning is so full of what ifs.  It does get better once you get your plan in place and know what is going to happen next.  This site is awesome and full of great, strong women who really know their stuff.  There is also www.tnbcfoundation.org. which is only for TN's  Lots of great info there as well just for TN's.  All the latest research and clinical trials are found easily on either site.

Heidi--I too believe it is a crap shoot as you said.  At first when diagnosed I went crazy with diet changes and may myself nuts.  Then I realized that there are women here who were health food junkies that got BC so now I just enjoy what I want when I want.  Nothing overboard and my sugar intake is def less than it was but that is a good thing either way.  I made the decision that BC would NOT take over my life before my time had come.  Being still in treatment I am facing it head on with SE's but I am not a puddle in the corner. 

Maggie

BernieEllen

Hi mc, leg only hurts at night.  Probably a strain but my onc said check anyway.  Welcome to the newbies but sorry you are here.

I have spent all day cleaning up after the water heater burst in the bathroon, found the water when i got up this morning.  Cleanest the floors have been in months

Fighter_34

Praying for GOOD results for everyone. Waiting is the toughest part. And yes most of the time califications are B-9. 

mccrimmon324

Bernie,

my floors could use a heater burst!  Are you doing any different exercises or anything?  I know from my hips down ache and are so sore when I get up in the morning or any time that I've been sitting for any length of time.

Hope60

 Hi Titan, mccrimmon and fighter_34 - Thank you all for responding to my post, and for your words of encouragement. Titan, the calcs looked to me like little specks of dust, but they were clustered, which was the concern.  Also, they're in my BC breast, right near my scar.  I spoke to my BS, who I love, this morning.  The radiologist told him her first impression is that they are "fat necrosis"...ugh sounds ugly....some benign crud that builds up from radiation.  However, she can't rule out DCIS given my history.  I just cannot believe all the dose dense AC+T and rads I had wouldn't knock that stuff out, but who knows.  Waiting for a biopsy date right now.  If it's DCIS I'm probably looking at a mastectormy, since I already had radiation in that breast.  I was just starting to get my head out of cancerland and look toward the future, now here I am again.  Thank G-d for Ativan, and for you wonderful ladies!

Hope60

PS - Titan - Just wanted so say that as a long time lurker here, I've always loved your posts.  You show tremendous compassion for everyone who comes here, you always have good information, and you're funny!!! Thanks again.

mccrimmon324

Hope60 - I have a strong feeling it's fat necrosis, the radiologist know what they are looking at, they just need to be extra carefull given our situations.