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txhart View Drop Down
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    Posted: Aug 02 2008 at 6:48am
Hello ladies,
I am a bit intimidated by the knowledge that you have all aquired. I was blindsided by this diagnosis last week and this week has been full of tests and an overload of information. I, like some of you, was unaware of what TNBC even meant. I'm still a little confused. And it seems like it was mentioned kind of in passing. I was told that it was somewhat rare, but not much else. I am so lucky to have found this forum early on, as I feel that you will be a great part of my 'adventure'. At this time (and I feel really stupid saying this) I'm not even exactly sure which drug I'll be receiving. I pulled out all the papers I was given and I'm reading four different ones, besides the clinical trial drug. UGH. One thing I've learned here is that I need to be more assertive and ask a lot of questions. Thank you for that! I'm looking forward to knowing you ladies better in the next year during treatment.
Linda
 
ps... is anyone else going thru treatment at MD Anderson in Houston? just curious.
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sibu View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2008 at 4:37pm
Hi Linda, It's a sucky thing to have to become an expert on, but soon you'll be throwing around sexy terms like "dx, rx, rads, and onc" with the best of us! Sounds like you learned the most important lesson already---question authority! Lots of love and light your way, Donna


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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2008 at 4:37pm
Dear Linda,
 
I understand how intimidating this whole thing can be.  It's not unusual to feel overwhelmed by all of this.  I'm glad that you came here and are learning some things.
 
One thing that really worked for me at my first diagnosis was bringing a tape recorder with me to my doctor's appointments.  I also had a friend/relative with me, figuring the more ears, the better I'll remember all that was said.  I always came up with questions, of course after I'd left the office, but that was OK for a number of reasons -- 1) it gave me more time to formulate my questions and actually HEAR the answers; 2) I became more than just a name or file to my medical team.  They knew me as Caryn and that helped when they had to 'bend the rules' or make accommodations for me.
 
BTW, you are going to one of the foremost cancer treatment hospitals in the Western Hemisphere. 
 
All the best,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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txhart View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 7:41am
Thanks Caryn,
This is all so new to me. oh my gosh, yeah talk about overwhelming. I get my port put in tomorrow morning. I haven't really cried since the diagnosis until last night. It's a little surreal and I keep thinking one of the doctors is going to walk out and say, "I don't know what they're seeing, but I don't see cancer!". yeah, really silly of me, I know. I feel like I've been sucker-punched.
ok, so for what to expect.... I've been reading everyone's posts so I'm totally expecting the side effects, etc.   One thing I haven't really noticed though, is do you continue to work?
I am a special education teacher at an alternative school (students have been placed there for behavioral purposes). I talked to the prinicpal the other day and she is totally understanding, but I just don't know what to expect.  I'm also in graduate school and in my last semester. ugh. I'm expecting that I may have to put that off another year, even though I feel like I've been in school for EVER. 
I'm confident in those at MD Anderson, and probably to a fault of trusting so much that I haven't asked questions! I am going to do that from now on.  At this point I only know that I'm stage 2 with 2 lymph nodes affected. 
thanks again,
Linda
ps. I'm learning the abbreviations here, but what is NED?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 7:56am
Ah, NED is the Holy Grail for folks like me who are Stage 4.  It stands for "no evident disease" and it's akin to remission.  There are many who are 'dancing with NED' and hope to be for a long long time.   We use it less with first time diagnoses because there is a good chance of your being CURED, which is even better than NED.
 
As far as working goes, it's an individual choice based on the side effects that you have.  I continued to work in a stressful marketing job at my first diagnosis.  I had chemo once every 3 weeks and would have it on a Thursday with the side effects not really hitting me until Saturday morning (until the last few rounds where the cumulative effect of the chemo had the side effects start sooner and last longer -- I was out of work Fridays and Mondays too).  You'll have to see how you feel during treatment.
 
All the best,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 3:23pm
Hi Linda,
 
I understand it is a very scary time but things will settle a bit when you find out exactly what they have in mind.
 
I hope getting your port put in tomorrow goes smoothly for you.  Also hope that you have a good support system at home, friends, family, that will be a big help for you.
 
Best wishes,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 4:49pm
Linda,
 
Lori is a second grade teacher. She had chemo on Friday, and was off the folowing Monday and Tuesday. First chemo she was only off on Monday...big mistake. I know that is a crappy way to spend your weekend, but it was every 3 weeks for Lori. You will  just have to see after your first chemo.
 
As far as the graduate school, that is just one more added stress in your life.
 
You are right, you must ask questions, all the time. I assume you didn't find the post where I gave you the "abbreviations"LOL
 
 
 
 
Hugs,
Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote myjourney Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 7:08pm
Hey you! I am so glad that we've connected!! My first three weeks, I spent every waking hour reading about BC. I worked, but when I wasn't, I read. What I have learned about TN, and correct me ladies if I am wrong is the following:
The do not know what it feeds on. They know that it is a nasty aggressive kind, and they know that it responds very well to chemo. Our recurrence rate is 15%, so 1 in 6 in the first three years. Which is higher than all the other BC's, but once we get out to 5 years, our rate drops much lower than the rest of them. TN's are also common in younger women, african american, and hispanic women. That is all that I know. Not much. That sucks. I cannot wait till the day, maybe tomorrow, that they will know what our cancer feeds on. That will be a good day.

Oh! And the questions! I had a yellow note pad, and with all the reading I did I had probably close to a 100 questions for my Onc. I would call him each day, and he would call me back every night and answer all of my questions. He is an incredibly dedicated loving fatherly type. I have a binder with each and every specialist I have ever seen and their notes. I have ever single thing that has ever been put in me. I know everything that everyone else knows. If I move or 10 years later it comes back, I have all my info and pics.

And to answer your earlier question. I got genetic testing because my onc was 95% sure mine was genetic. Most young women that are TN are genetic. If I had been genetic positive, my treatment would have been much more severe. The survival/recurrence stats are TOTALLY different.   I think it is something everyone should get done. It could save your life. My insurance wasn't going to pay for it, they said when I called them. My genetic counselor submitted it to them, and they ended up paying for 85% of it!! Because I am so young. Mine wasn't. Maybe it was the maple bars!!



Edited by myjourney - Aug 03 2008 at 7:15pm
33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 9:40pm
Linda,  I did work thru treatment. I am a hairdresser, so on my feet all day and with the public. I had chemo on Monday morning, went to do my banking [ self employed] afterwards, then on to accupuncture and home to somewhat crash. I would be ready for work on Wednesday. By my 4th tx, I took Wed. off and didn't come in to work until Thurs. Fortunately my onc was encouraging. As was 1 customer, who had worked with a fellow that had had chemo and continued to work. I still thank her for her encouragement and positive attitude. Everyone else didn't think it could be done.  I am glad I maintained my schedule. It was normal and routine at an upside down time of life.
 
I do realize everyone responds differently to chemo. I was fortunate that I was able to physically & mentally continue most of my life routine.
 
I also just had a customer that went thru 4tx AC, then 4 tx of T working full time. She would take the Friday she had chemo off work and be back on the job Monday.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 4:51am
Hi Heather, just wondering...my onc. told me the recurrence rate was 40% when taking my particulars into account (age, size of tumor, etc.) even after double mast., chemo and rads. Maybe b/c mine was genetic and there were nodes involved? I hadn't heard the 15% before. He also said that after 3 years, cancer risk dropped to 'the same rate as the general population.' 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote myjourney Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2008 at 5:14am
You know what, Sibu? You are right. I am sorry for being misleading, and thinking only of myself! Its hard for me to not do that right now. Those were my stats because of the no-node involvement, and size of my tumor, and of coarse it not being genetic.
And really, all of our numbers are none of those that they through out. Our numbers are either 0 or 100%. That reality helps me out a lot. Either I won't ever get it again, or I 100% will and that helps me to eliminate all the worry about all the other numbers.
33 year old
1.8 cm tumor/Node Neg
Lumpectomy 7/1/08
BRCA 1 & 2 Negative
AC DONE!! 9/17/08 Four of 'em
Taxotere done! 11 of 12 ~1/31/08
33 radiation
My blog:
heathersjourneytohealth.blogspot.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 9:30am

Hello, Linda,

keep strong right now, this is the time for yourself and lots of reading. You want to prepared when they asks you to make decisions. Better be prepared more than less! You should have few weeks between treatments and surgeries, just logg on and read.  There are plenty of informations right here!

Where are you right now at? Keeping my fingers crossed so everything goes well!! Galina

Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 10:24am
Hey Heather, you just got an A in Statistics! Now is the time to think of you, yourself and nobody else but you. And the last thing you want to do is worry that you're worrying too much and therefore causing stress and making it worse! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 10:32am
hey Galina,
I got my port in yesterday and should start chemo next week. yippee!
Thanks to advice I got all my medical records yesterday and should finish reading them tonight.
They also gave me a CD with a copy of all my films on there. That should be interesting too.
I actually had a good time in surgery yesterday. silly huh? But for some reason I just loved messing with my nurse. She was complaining that she lost her keys and really I think she was keeping my mind off the present because before I knew it, my IV was IN and it didn't hurt a second. They said on the way to surgery, I said, "Hey Alicia, no intubation unless absolutely necessary, right?" haha I dont' remember saying that at all but I was definitely thinking it! I hate that thing down my throat. But it was funny later.
It's not so bad. I toldl my grandson that nana has a doorbell now. It looks just like one! ha
hugs to all,
Linda
Linda
age 48
Triple Negative Stage 2B
IDC 2.7
Diagnosed 7/24/08
12 rounds Paclitaxel
4 rounds FEC, surgery Feb 3, 6 wks of rad

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 4:04pm
Linda (since I've taken it upon myself to hand out board awards...) you must get the good attitude award...yippee for starting chemo?!?! You're awesome! And double bonus for the doorbell thing. Best of luck next week! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 5:25pm
Sibu,
Thanks for that. The way I see it, the sooner I get started, the sooner I beat it! And I could have also still been dopey from the drugs they gave me earlier! sigh. here we go!
Linda
Linda
age 48
Triple Negative Stage 2B
IDC 2.7
Diagnosed 7/24/08
12 rounds Paclitaxel
4 rounds FEC, surgery Feb 3, 6 wks of rad

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zanb Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2008 at 7:46pm
Linda,
     Mandy shared your news with me on Monday because she has known about my fight with cancer and reconstruction.  I even showed her my newly reconstructed breasts.  I too am a patient at MD Anderson.  I had 3 lumpectomies to get clean margins and then radiation therapy in 2005.  I had wanted a bilateral mastectomy all along, but my surgeon Dr. Ames is the poster boy for breast preservation.  In 2007 I was diagnosed with LCIS so my GYN suggested that I see her surgeon , Dr.  Pollack, who recommended the bilateral mastectomy.  Dr. Sean Boutros performed an I-GAP which uses butt fat and skin to create breast.  I highly recommend both Dr. Pollack and Dr. Boutros.
     Please get Mandy to give you my phone number.  I would love to talk with you to share my experience and answer your questions.
Zan 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote txhart Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2008 at 2:45am
Zan,
Imagine my surprise to see my daughter's name on the forum! Mandy is such an angel and asking a lot of questions. I'm happy for her to know you and see that people do come out of this ok. She is remaining positive with me. I heard that Dr. Ames is awesome, but he's only part time now. It was great that you got him. My surgeon is Dr. Kuerer, who also comes highly recommended. Are the other two doctors also from MDA? I have't heard of them before. At this point I'm not sure which way to go, but they are not talking about surgery until after chemo, so I have a few months yet. Thank you so much for telling Mandy your story . I'm sure that helps her with dealing with me. I have such an awesome family behind me, I mean seriously.
I haven't heard of using butt fat before. They've talked about using belly fat, (which I have decided not to do). I'll definitely get some information on it.
Thank you!
Linda
Linda
age 48
Triple Negative Stage 2B
IDC 2.7
Diagnosed 7/24/08
12 rounds Paclitaxel
4 rounds FEC, surgery Feb 3, 6 wks of rad

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2008 at 4:33am
Hello Zan and a warm welcome to you.Smile
 
That is so thoughtful of you to connect up with Linda to help her along.
We could all use someone like that.
 
I hope you are doing well now and we would also love to hear your story.  Hope you'll continue to post in the forum.  The support here is fantastic.
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2008 at 7:02am
Afternoon Zan,
 
Welcome to the site, and ditto to everything that Pam has postedThumbs%20Up
 
Hugs,
Nancy
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