Calling all TNs
Comments
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Another triple neg here ... found lump myself at at 48. And for those of you wanting the good news: I celebrated my 3rd year without recurrence in September !!! Oh chit - that means I just admitted I'm 51 now - haha. Had double mastectomy, positive nodes, chemo and radiation. Yup, did the whole meal deal. For those of you currently in treatment - althought in many ways it feels like just yesterday, there are indeed now days when I don't think about it. Imagine that !! I never thought it might happen but as I reflect - there are days when I don't have one, not even one thought about cancer. Lingering issues - LE that fortunately is fairly well controlled, and the forever and ever taking of a cummadin pill because I managed to acquire two blood clots. And yes, what is it about the hair thing - geez. Once we lose our hair, the person looking at us in the mirror is a cancer patient and we cannot hide that. That's my observation anyways.
Follow-up is all over the map it appears. I have a physical once a year ... that's it. Oh sure, if there is something bothering me - door is open, but I have no scheduled scans, no MRIs, nothing like that. I used to feel that I was dropped into a black hole - saying, good-bye and good luck. What the heck? You wanted to know about my every bodily function every day and now it's just good bye? That was a tough one mentally. But now as I reflect - I am thankful. I no longer live until the next "test" or until the next all clear. I get up, I go, I continue on. I do not have the dates in mind.
Okay ... I've rambled on enough. Hang in there ladies ... some days suck to the max but if I'm honest - some did before I had my diagnosis - haha. Keep up the fight - you're not in it alone.
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I am asked often if I am cured and/or cancer free, to which I reply yes and if I'm asked how I am doing I say fine. There are those that are more curious than others and will persist with questions and I answer the best I can or if I'm not in the mood I find that by asking the other person questions, how are you, the kids, job, etc helps. Most of the time they "get it" and quit asking. TN is very misunderstood by many including doctors not in the oncology field. I really don't even try to explain the whole TN thing unless the person I'm talking to keeps asking and wants to know why I'm not on Tamoxofin, Armidex or something along those lines. Prior to BC I knew nothing, hell I thought there was one type of breast cancer and had no idea that there were so many types, treatments, that there was grading of the tumor in addition to staging and then the whole ER/PR HER2 positive negative thing...... With that said, I don't know how I would have reacted to a coworker, friend or family member in my situation, but think it would have been with compassion, help and I'm sure a few fumbled unintended mistakes.
I know this may sound weird, but I've also come across people who seem to want to be friends with the BC girl......like it gives them some greater insight or makes this special. I find this to be really odd, but then again I guess it's that same personality of one upmanship. Oh well....that was my little rant.
vickilynn - I've never had fresh wild turkey, only the frozen kind. It must taste so much better.....
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I am cracking up with all of "turkey talk". The day before Thanksgiving I had 14 parade through my yard. (That was a mighty bold thing to do! Good thing I had been to the store already!) I've never tasted wild turkey but because they eat acorns I've heard the meat is "different" tasting. It is common for me to see deer in my back yard too. (I don't eat them, either.)
One night while I was really wiped out from chemo I heard a thud against our front door. Immediately I called to my husband to go to the window and start yelling. (He thought I had just lost my mind!) It was a black bear after the birdfeeders! ...Country living!
I know that a bc diagnosis feels like the worst thing a women can ever hear. My daughter and I share an interesting story. I think the worst day of my life was the day that my daughter received her first round of chemo for TN and I could not be with her. I was a total emotional wreck. And her worst day was 2 years later when I received my first round of chemo for HER2/nue and she could not be with me. Emotionally she felt everything she went through when she had her first chemo.
If there was ever a young woman you would have crossed off the list as being a potential candidate for bc, it would have been my daughter. She's a runner, never smoked, wine with dinner on occasion, "Mediterranean diet"...if lifestyle was all that mattered, she should have been exempt from bc. The one area I question is: "what about stress?" Her's was off the charts! And then 2 years later (after non-stop stress with a pile of issues and Tracy was battling TN) I was diagnosed.
Blessings...
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Hello,
Happened across your post and decided to chime as well. I was dx Jan. 2009 and at this moment can't remember specifics
I started with surgery in Feb. Chemo in March and Radiation in July. My chemo was ACT (taxol) and the radiation burned part of my lung so they reposistioned the beam for the rest of the tx. The scary part for me has been the follow-up ... I'm still learning who's supposed to be doing what and I'm not always happy with the answers I'm given. I've been told I'm somewhat of a 'princess', but my response to them is always 'if it was you, you'd be doing the same thing.' BTW, there are quite a few TNs on this site, but the thread has been inactive for awhile. I kept checking back, but noone was posting anything, so I began looking answers on other threads. I've found other threads to be helpful, but really feel better when I can chat with, share with and relate to other TNs.
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Titan- have you noticed the number of hits this thread gets? Wow, we are a chatty bunch!
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Luv2sing- this thread is so successful that I think it has made the other obsolete!
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Nah..haven't noticed..just trying to keep up with everyone is keeping me busy!
I like the turkey talk...we had 5 in our lawn today! My DH is fascinated with wild life..he was a city boy before he married me and moved out to the country! I had to stop for 4 deer to run across the road last week..plus my son almost hit one the other night coming home...which scared the heck out of me..
As far as the "cure" question goes..no one even asks me anything anymore! Alot of times I forget too! It maybe be denial but I like it there!
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Speaking of turkey talk...it seems like everyone has seen a wild turkey but me and possibly MBJ...lol. I guess I need to get out of the big city more!
MBJ - your pies look delicious.
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Hi Everyone. I'm brand new here, just got my dx on 11/19 and still don't know much. I do know I'm ER and PR negative, not sure yet about HER2, wasn't on my original biopsy report. My tumor is grade 3 and about 3.9cm.. I met with my surgeon on Tuesday, she examined me and did not like the look of a lymph node on ultrasound so took a sample, should have that result in a few days. Not sure yet if starting with chemo first or surgery first. My first appt with the medical oncologist is not until 12/14. I am frustrated that a month will have gone by with no treatment..
I knew nothing about the ER/PR negative diagnosis and was led to believe that it was a good thing by those giving me the biopsy results.. so a sentiment I found in scanning thru this thread seems correct to me- people don't know what it means to be TN.
I'm just starting to realize the depth of this situation.. I had myself believing that I'd go thru a couple months of treatment and a surgery and then life would get back to normal. I guess I was naive and uneducated, I'll need to find a new normal.
I have 2 little boys, age 3 and 5 - so I need to find my motivation to be strong and do everything I can to fight this in the most positive ways.
I will probably lurk around here until I know more about what I've got.. then I'll likely be asking lots of questions. I was pointed here by a friend that is disease free for about 2 yrs now, but she was a triple positive (if that's an appropriate term) So her journey was quite different than mine will be.
I'm glad she told me about this place, look forward to getting to know you all.
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I received a PM from Lisa (Paldingmom) she says hi to everyone. The brain radiation hurts her eyes and makes the computer difficult for her. Wishing her the best as we all are and look forward to her posts when she is up to it.
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I've got a lot of catching up to do on posts myself. Just thinking good thoughts about all of you. Hope your weekend was great.
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99Sporty- welcome to the club no one wants to join! I was like you--- thought I'd have a quick surgery then on with my life. It took me a few weeks to realize the "depth" of the situation too.
It can get pretty "deep" (might even feel like you are drowning sometimes), so hang on to your hat and grab your life preserver. However, when you are feeling particularly frightened and uncertain of your future just remember to take a deep breath, exhale, repeat--- then tell yourself "one day at a time."
I'm several "days" down the road and things are going well. You can do this.
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99Sporty - welcome and I'm sorry you had to find your way here. Lurking is good, as it lets you learn and feel out where you're most comfortable. When you're ready we're all here to help you with questions, the mad rant, venting or sleepless night posts..... (((hugs))).
Last night I asked my DD to straighten my Shirley Temple curly hair. Wow!!! It is longer than what I thought. It goes down to the base of my neck almost touching the top of my back, my bangs for lack of a better word go down to the tops of my ears. Funny thing is it looks like it's been cut with many, many layers. After I kind of "fixed" it, my DD said I looked like my "old" self and I had to agree.
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laurajane: Thanks for the update on Lisa. She's in my thoughts.0
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Hello all! I too am new here, had a lumpectomy 10/22 for 1.2 cm, no nodes,clear margin, path report showed no blood flow thorugh tumor, bone scan clear, chemo to start 12/2 , 4X T/C every three weeks. Two oncs said no proof of ACT working any better than T/C with clear nodes, Her2-.Can be so confusing sometimes! Its so hard thinking about having chemo when I feel so great, lumpectomy was breeze, back to work in 2 days..no pain...Just so hard getting "cancer" off your brain. This site is great!! so glad to have found it. I feel armed with tips for chemo, and love haivng a place to be where everyone knows how I really feel!
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LJ - thanks for letting us know how Lisa is doing. Please send her my ((hugs)) and let her know we're thinking about her.
msjag - I am so sorry you had to find your way here, but welcome.
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Hey everyone..and welcome to our newbies!
Oh yes..imagine my shock after my surgery (and yes there had been talk of chemo/rads).but.. I thought that I was done... that there would be a lump/rads and that would be it...it was like..it could come back? There could be cells floating around? Oh well...know better now.
Jenn3..glad you look like your "old self"...I think sometimes that the "old self" is gone..now I'm just old...
msjab..so chemo awaits you huh....make sure you join up with a starting chemo group and read the previous months group...it will help you so much get through chemo...I'm still hanging with my starting Chemo April 09 group and just love them...
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Welcome new TN sisters!
Lisa (Paldingmom) you are in my daily thoughts
I get my CT results on Tuesday.....I am sure it's all good, but still can't keep my mind from going ......well you know where METS omg! Just scanxiety I guess.
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Welcome newbies! I had to get caught up on almost a week's worth of conversation! Did you all hear that there's a shortage of Adriamycin? I met this woman at a local wig shop that just started dose dense AC and they had to switch her to a "sister" drug of Adriamycin after her first infusion. Crazy, huh???
I started rads last week. So far I'm doing okay. I hope I don't have any bad SE's, esp with my implants. I know what you all mean about explaining to people about cancer and TNBC. I didn't know a lot about BC before my sister got it. Unfortunately, I've learned more than I ever wanted to know!!! A lot of people ask me about my prognosis like, "Is the chemo working?" - I feel like a broken record when I tell them that I'm doing the chemo and rads to hopefully keep it from coming back!!!
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Amy (Sporty) - I hear you. It took about a month to really getting the ball rolling with me, too and all I could think of was that the delays might kill me. I also had a 'suspicious' lymph node that they biopsied at the same time they did the tumor, and that was freaking me out, too. Thankfully the node came back negative.
I had a wonderful Thanksgiving dinner with the family on Saturday. On the way back home, though, the 'service engine soon' light came on. I can't afford a big car repair!! All I could think was that I wouldn't be able to get it fixed Sunday, and my rads appointment is early enough this morning that I need to go there first. And my insurance has been difficult with me over what they will and won't cover. And funds are low because my disability insurance is only 60% of my base pay. And I had received 3 three letters from my insurance and radiology last week that I couldn't get up my nerve to open, worried how much they wanted this time. So when I got back home after Thanksgiving dinner, I finally got up the nerve to open them. They were all refund checks! Totaling nearly $600! Wow! That's going to help with my car repair! Apparently, radiology and my docs appealed something that the insurance had initially denied. And they won! The docs got the reimbursement they wanted, and the insurance mailed back a refund of what they had charged me.
And it happened on Thanksgiving!! I'm very thankful.
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It was 5 years ago this Thanksgiving that my daughter (TNBC) was on the verge of being hospitalized after ANOTHER serious reaction to Cytoxan (she continually fell in the minority). She was in tears at the thought of missing Thanksgiving and not being with aunts, uncles and cousins. It was her first Thanksgiving to be with family after living in Spain for 7 years.
It was our first Thanksgiving since my dad's passing (he was 91). And my mom was in the hospital with congestive heart failure. ...All that could be done was pray, and pray I did!
My mom was released from the hospital Thanksgiving morning, Tracy's 100.3 fever suddenly and miraculously dropped and aside from missing Dad, we were all gathered around the Thanksgiving table together....all 25 of us.
Ladies, I hope 5 years from now YOU will all be looking back and remembering with joy that you have been victorious, offer a prayer of "thanksgiving," and look forward to brighter days and fewer concerns.
Blessings...
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Wow: So many posts here it will be impossible to catch up!
For all of you newbies you have come to a place of great empathy and support!
Kittycat: A shortage of chemo drugs???? There is something seriously wrong here.
I just wanted to share this not as an alternative to standard of care but as a preventative from future BC. http://breastcancerchoices.org/iodine.html. Diet, excercise and supplementation are all good preventatives before and after treatments, but without enough Iodine in our diets, no matter how healthy we are we could succumb to this disease again. Information is POWER!!! http://jeffreydach.com/2009/11/13/iodine-against-breast-cancer-the-overwhelming-evidence-by-jeffrey-dach-md.aspx?ref=rss
This is from the author of Anti Cancer: A New Way of Life A Dr. who has survived brain cancer twice!!!:
http://www.youtube.com/watch?v=lP6uGVrCBWs&feature=related
Laurajane: Thank you for the update on Lisa. Our thoughts are all with her in her continued battle.
Sugar: I DID see Wild Turkeys--They just happened to be on someone elses farm. Wondering if they were eaten for Thanksgiving.
Wild turkeys, deer and bears??!! Oh My!!!
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Kathy: Thanks for the uplifting post! I just had my first chemo treatment today and am looking forward to being done. I've skipped ahead in my mind to one year from now, wondering how much hair I'll have, and knowing I'll be so thankful to be done.0
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cc4npg - I started chemo a year ago next week (Dec. 7th) and I have a full head of hair now and have had about four cuts since it grew back. I'm glad I did chemo.
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Me too... I couldn't face the fear of not doing it. At least I'm doing everything I can. Good to hear you got hair back really well!! They've never seen anyone whose hair didn't grow back, but I have read posts from the few who have this problem.
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Sugar--- you started and I ended on Dec. 7th (D-Day in this country-- "a day that will live in infamy")
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December 7th was a significant date for me because exactly 10 years earlier, I was in that same hospital giving birth to my daughter. She was born on Dec. 6, 1999 in the evening and I ended up having an emergency c-section and was kept in for five days. It was very emotional for me when the chemo started flowing thinking of the day she was born just down the hall and how I never imagined I'd be diagnosed 10 years later. She's turning 11 a week from today so we're busy getting ready for her kid's party this coming Saturday at a local trampoline club. She's really excited and I'm in a much better place to be making up loot bags this year. Last year I was just going through the motions trying to keep things as normal as possible for her.
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Hair?? Hair is what I missed most! And just about the time it was beginning to sprout, I had more chemo and it all fell out AGAIN. As a part of a research trial I was given chemo then surgery. Even with a 100% response to chemo and no live cancer in 15 path slides, I had more chemo---just in case.
I didn't have my first hair cut for 10 months after shaving my head. And when it was "shaped" it was the shortest "Jamie Lee" you have ever seen! Very cute...but still very short!
I've been a "prayer walker" for years. As I walked my 3 miles today, I was praying for each of you.
Blessings...
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kcrews: Count me in anytime you pray please. I've had it very rough since 2006, and this year with triple negative cancer really added a lot to an already bad year. I actually pray as I'm cleaning my house, or as I wait for my son to fall asleep.
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You ladies are just all so wonderful...the support and the fun we have on here..even with the bad stuff...we are truly sisters...
Paulding mom..I think of you every day...post here when you have a chance..and feel up to it..we miss you.
cc4png...first chemo done...that's good...you will be done b-4 you know it..really, really,really...it seems to last a long time going through it but really it will go fast...I can't believe I have been done with chemo for over a year...I remember reading posts of women who were done and I was so jealous..I wanted to be done too..to be on the other side..it really does happen!
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