Calling all TNs

Anonymous

"I don't think I'm alone in saying that when one of us is having a scare, it affects the rest of us."

Ain't that the truth...

Teka

Hi! cc4npg,

I had a lumpectomy with negative nodes, and radiation treatments to mop up any remaining cancer cells in breast.   Seems like so many BC patients get different BC treatments.

NavyMom

Great news, Laurajane!!!!.  Doing the Happy NED Dance for you!!!

Navy

beccad

I will be having my 2nd PET scan tomorrow.  My 1st one was in October prior to chemo.  Finished chemo 2/8 & my Onc. wants another one.  My surgery is scheduled for 3/7.  Having left MX with TE & right reduction, or that is the plan for now.  I will be off work for 4 weeks minimum, acording to the PS.  Then when all is healed on to Rads, and then reconstruction.  Along with all of this to think about I just want to have my hair back!  Is that about the most stupid thing that a person could want when she is about to have major surgery?  Oh, on top of that my boss STILL has not hired a temporary Nuc Tech., and he has known my DX since Oct.  I have got to the point that it is not my problem, and not worrying about what happens at work while I am gone.

Ok, enough for my ranting.

Beccad 

tnbcRuth

Laurajane-  WONDERFUL NEWS !!!!!!!!!!!!!!!!!!!!!

Lovelyface

Laurajane, Girl, you made my Day!!!!!!!!  Thank you so much for the good news, much Hugs to you and your son!  Celebrate, you will be okay!!!!!!

Lovelyface

TifJ - thanks for telling me about the percentages they use in determining TN.  My first receptor tests showed 2% positive for PR, the second receptior tests showed 5%.  There was so much misunderstandings in dealing with the lab, as I had to explain to them over and over that I wanted a different tissue tested, not the same tissue which was tested by the first hospital.  Finally, I think they tested a separate tissue and determined the 5%, although I think they could have done a better job or that my Onc. should have made a clearer request.  Anyway, I am really not sure that being TN is better or worse than being triple positive.  You know TN is not all that bad, once you get past the first 3 years of nightmare, the fear of recurrence. I heard that HER+ is highly aggressive.  Am I really stupid to think this way?

cc4npg

SusanHG:  Lumpectomy and Mastectomy have the same rates of survival.. neither is different so it's really a personal choice, and it's a hard choice.  As for the chemo or no chemo... I bet you are getting some conflicts there.  I also had a 3 mm tumor which was completely removed at stereotactic biopsy, and the only thing that remained at mx was DCIS under 1 cm.  I got two opinions on chemo and both said it would benefit me being triple negative and being that I was 43 at the time.  The "line" used to be drawn at 5 mm.  Anything under 5 mm was considered a gray area and no chemo was offered.  But I think oncologists are realizing that triple negative people need chemo, no matter what the size.  I just finished 4 rounds of TC and although it wasn't exactly a walk in the park, it was doable and I'm glad I did it because I know I've done everything I could.  My decision was made when someone asked me, "If you have a recurrence later on, will knowing you didn't get the chemo be something you look back on and wish you had done?"  Our first dx is the best time we ever have to completely knock this beast out of us.  I am pleased with my decision to do the chemo.  I'd make the same decision again.

TifJ:  I did not develop a cough, but I have read a few others that did have that.  I did, however, have a LOT more gunk in my nose/throat.  I think it's starting to go away now at not quite 4 weeks pfc.

MBJ

jlynnblain:  Making this decision can be the hardest one of your life!  After reading all of the pain and problems on these boards with women who have had radiation and then needed reconstructive surgery, the expanders seem like a breeze to me.  Yes, it was an uncomfortable 5 months, but my dr's did a beautiful job and you can hardly tell I had an MX on one side.  This has been my experience.  For me, radiation sounded much worse then chemo, but again, that was my experience.  I think when it comes to these types of choices it's very individual--there are many women here who have had a lumpectomy and radiation and are very happy with their choice.  I always say, listen to what your gut is saying.  Mastectomy sounds just awful in comparison to a lumpectomy, but you can end up sometimes with more damage if you have more then one surgery, excpecially if you have small breasts.  Best of luck with whatever you decide to do--we will all be here for you no matter what you decide to do.  Maybe go and check out some other threads that deal specifically with reconstruction. This is what I did and it was very helpful (though I didn't have alot of choices) and it helped me with my decision.  I also went to three PS's to get their opinions.  There aren't any fast decisions with cancer, there are only the right decisions for your individual case.  Everyone else has also given you excellent advice and an accurate picture of what to expect.

Titan

Lovelyface...of course you are not stupid...none of us are stupid...

It is just getting to that 3 year mark that is so scary!  I will be 2 years on 3/20...party time! I was thinking that was good until now I have to freak out until it is 3 years!  

I will only tell you guys...can't tell my family..but my daughter is getting married Oct 1...I know that this is weird but I keep counting down the months...thinking that if this junk come back...will I be able to be at her wedding?  It is so scary sometimes! 

MBJ

Laurajane:  I was going to write a post here telling you that your first dream was probably accurate and the others were just the fears projecting because of your son!   Well, you just gave me the best news I have heard all day!!!!!!   We are all doing the happy dance for you!!!  How was New York?  Did you have just an amazing time?  Can't wait to hear all about it, after you celebrate, of course. WAAAHHHHHOOOOOOOOOOOOO!!!!!!!!!!!!

Heidi:  When one of us suffers, we all suffer and when one of us receives good news, we are celebrating too!  Hope is a beautiful thing!

MBJ

Titan:  I do the countdown with so many things!  I would really like to move forward with my life and not live in fear all of the time.

cc4npg

I'm afraid we're always going to have some size of a rain cloud trying to follow us for the rest of our lives.  It's hard to shake the terror we feel at dx.  We do our best to get past all of it, but it still tends to linger in the back of our minds.  Our lives have changed because of what we've been through.  It's an exciting time though Titan, so enjoy it the best you can!  Your baby is getting married!!   I'm sure you'll be busy planning and hopefully that will take your mind off of some of this stuff for a while.  I'd like to just see my daughters mature and find someone that they might eventually marry!  I'd love to be a grandma, but NOT at this time because of their lack of maturity.  But still, when the time is right, it will be exciting.

lrr4993

"I would really like to move forward with my life and not live in fear all of the time."

That about sums it up right there.  I have just finished treatment and am wondering when I will get to that point.  Right now it seems I am no where close to it.  In fact, I seem more scared than ever.  I do fine when I am busy and am not thinking about it.  But it often hits me hard and out of the blue when I am alone . . . in the car, at night, etc.  I hate to say this, but this board does not help at times with all the bad news.  Which is why it is so great to hear a story like laurajanes.  I will be soooo glad when that 5 year/negligible risk of recurrence mark is past . . . I suspect that is when I will finally start to believe everything will be okay.   

Titan

Oh..and Laura Jane...WONDERFUL WONDERFUL NEWS FOR YOU!  I read your news when I was at work and I just started giggling!   Your news made my day...and good for you to call instead of waiting....I'm glad you did! 

OMG..Angelisa..me a grandma???  Not sure I'm ready for that yet but I will deal with it when the time comes...it's freaking me out to be the Mother of the Bride!   And even better to be the Bitchy Mother in Law..ha ha...I do think sometimes that my future SIL is a little afraid of me....poor kid..I realise that he has probably been told to look at his future wife's mom to see what his bride will be like in the future..I hope it doesn't scare him off..

Titan

I just can't shut up tonight!  but I did hear on the news..that there is now a test on your bone marrow to see if any cancer cells may be there...I think they said that is where the cells go first..anyway, they said it is absolutely painless..if there are some there they will do more aggressive chemo to hopefuly stop the cells from going to to your organs..talk to your oncs about it..I'm going to..I'm sure it is everywhere around the country...they are doing it at University Hospital in Cleveland.

jenn3

LJ - Words cannot express how happy I am for you!!!!!  I completely understand the crazy dreams. I think we block out these evil thoughts so much during our waking hours, that when we're sleeping they're able to push to the front of the line and scare the $#!^ out of us.  (((hugs))). How was your trip?

For those of of you considering surgery, you've gotten lots of good advice.  In the end, I think it's a personal decision, one that somehow or another comes to you at the moment you need the answer.  Good luck with your decisions.

Lynn18

Jenn3:  You are right about the dreams.  I've had some really strange ones.

Titan:  That test sounds hopeful . . . I will ask my dr. about it also.

The thing I like about this board is that none of us have to go through this alone. . .

Laurajane:  Sweet dreams tonight,

Suze35

Thank you guys, it really helps to vent here. I don't feel so alone. I actually went to a neat bar with DH and friends and had a few glasses of wine. It felt good to enjoy myself without thinking too much. My onc called me tonight to talk me down, she's so great.



My MRI is Wednesday, so I'll keep you posted.



I'm sorry for not catching up - but I want to welcome everyone who is new (sadly) and thank everyone for their thoughts.

cc4npg

Suze35:  Your surgery is quickly approaching too. You will get many answers from that, and I am so praying everything goes just fine!  It sounds like you have a really caring onc.  You come vent any time!  You are definitely NOT alone.

I have an onc appt tomorrow and will also ask about the bone marrow test!  This is very interesting news.  

Lynn18

Suze35:  I'm glad you had a good time with your DH.  I was wondering if your headaches could be related to chemopause?  I know my hormones have been all over the place and I think that can cause headaches.  Having the MRI will put your mind at ease.  We are all here for you!

Sugar77

Laurajane - I read your good news on my Blackberry earlier and had a big smile on my face!! I took a cooking course tonight or it'd have posted my congrats earlier!

Welcome to the new ladies on the thread. 

Titan - you won't be a monster-in-law by any stretch...and you'd probably be one of the coolest grandmas in town when they decide to have children. My sister was a grandmother in her late thirties.

I've also had the scary dreams myself...they are no fun.  I also had a couple of bad nights when I tried Melatonin with very scary vivid dreams.  That stuff just doesn't jive with my system.

I'm off to bed now as I hear there's supposed to be a snow storm tomorrow and I'll need to leave earlier for work. 

lindaa

congrats laurajane.  very happy for you and glad the 3rd chemo was the charm.  You give me hope that i can do this too.

Linda

jlynnbain1031

thanks to all of you for everything. i am at one point wanting the surgery and the next not sure. grrrr. so frustrating. another question for anyone who knows. does having the mastectomy lower the percentage of it coming back at all. i know some of you said it doesn't really lower the % with lumpectomy vs. mastectomy but i am not sure.  i feel like i have a good chance being that i am a stage 2b. need to change that in my profile status. also, when they do the tissue expanders, do they keep filling them even if i would happen to need radiation anyway. i would hate to have nothing there at all until radiation was over. i guess i just don't understand the whole expanders thing. i know it stretches your skin and you keep going back til they are were you want them but other than that, i have no clue. lol ! i will definitley check out the boards on this. i am a 38c and can't imagine not having boobs. guess they are just a part of me and although in the beginning, i was like, who cares about the hair or even losing my boobs one day. but now i am getting a little emotional about losing them. all i know is life is more important than boobs. i have a 23 yr old daughter, a 10 year old son and a 6 year old daughter and they are my life. i also am a grandma at 39. i was 37 almost 38 when he was born. lol ! i was a young mom at 16 yrs old. these kids are my life and i just can't imagine not watching them grow. i am just having one of those nights i guess. i love coming here for support from all of you who know what its like. titan....see, i was a young grandma and you will enjoy it as much as i do. go buckeyes.i know from your posts your a a big ohio state fan. i am too. i absolutley love football and i am having withdrawels about football season being over. of cours i am also a huge pittsburgh steeler fan too. yes, i know, they lost but we will be back. lol ! talk to you all soon. i have lots of cleaning to do in the morning. have a great day tomorrow you all and a wonderful weekend. i plan on taking the kids to dinner tomorrow with my DH and maybe a movie. really want to see the adam sandler/jennifer aniston movie. goodnight

cc4npg

Jody: The only thing mx does it get rid of almost all breast tissue, and thus whatever is IN that tissue is gone.  Some people who have mx discover at pathology that they had other things in the breast tissue, while others don't.  I had bilateral, and there was nothing else discovered except for the things we already knew about.  But, for me, it lowered my personal risk because of the BRCA status.  I can still have a local recurrence in whatever tissue was left, or in the incision, although I personally feel very good that it's not going happen.  As for rads and fills... it really depends on your PS.  Many do nothing while rads is going on... and don't recommend TE's for that matter either.  I hope women who have had rads jump in here, because I didn't have any.

SusanHG

cc4npg:  Thanks so much for the advice! This chemo decision is killing me.  I already have a couple wigs on hold for me at a hair replacement place (one human hair that looks like me (long and light brown with blonde highlights)  and the other a fun synthetic inverted bob).  I just need to make that decision.  I suspect that 4 rounds of TC is much less taxing than ACT?  My onco suggested I bring it up when I go to the onco at the cancer institute.  I like that it is much easier to cross 4 off the list, kind of like milestones.  I have pretty much decided on lumpectomy.  I thought I could handle the loss of my breast, but I am starting to see that I would probably be traumatized psychologically.  I talked to my neurologist last night about my MRI rsults, and she assures me that the problem in my hip is early arthritis and needs correcting.  Hopefully not another surgery.  It's called a synovial herniation pit.  I have very sever arthritis in my low back and neck, so not surprising at all.  I'm hoping that this is all the health problems that will show up!

Also, has anyone used a cold cap here?  I was thinking I would be a good candiate since my tumor is so small.

mitymuffin

Jlynnbain, I think the answer to your question "does having a masectomy vs a lumpectomy lower the chances of it coming back" is no, unless there are extenuating circumstances. Having a masectomy rather than a lumpectomy does not lower your chances of it coming back. However, there are good medical reasons for having a masectomy, such as suspicious sites in other parts of the breast, BRCA +, etc., and for some woment the masectomy takes away the worry of developing other cancers in that breast. I had a lumpectomy, and it was outpatient surgery and easy compared to a masectomy.  If there is no medical reason for having a masectomy, then a lumpectomy is easier on the body and a quicker recovery time. It is really dependent on your individual medical situation.

You might find this article interesting.  http://www.medicinenet.com/script/main/art.asp?articlekey=123694

Lovelyface

Jlynnbain - I struggled with this decision myself so badly I was going nuts.  My Onc. talks in short sentences and does not offer much explanation.  But the one thing he said was "your life does not depend on taking your breasts out".  He is highly respected and people think he is a brilliant doctor.  I had IDC and DCIS in the same breast, 3 + 1.5 cm, so they were not so small and in two places.  After surgery I had 3 cm clear margins which felt very safe.  I went to various posts and checked out what some women were experiencing with their surgeries, expanders and doctors, and since they say that surgery plus radiation is the same as mastectomy, as cancer can come back in the chest wall, even if one has a mastectomy........anyway, I decided to keep my breasts and am going through radiation.  The grass is not always greener on the other side, I felt. The radiation therapy itself is a piece of cake, it is basically nothing except like an xray.  However, I am sure the side effects must be not so nice.  Anyway, so far I am happy about my decision.  I will also take aridimex/zometa since I am slightly positive at 5% although I am regarded as a TN. I am happy that I have avoided the mastectomies and all the problems/complications that might have come with the procedures.  In my opinion your tumor is very small, you are TN, if I was in your position, I wouldn't go for a mastectomy........  just my opinion.  Anyway, when I was going through the decision making, I wished people would tell me what they would do, that's why I have had the courage to give you my opinion.  I hope this helps.

jcoutee

lovelyface-i am 8% for estrogen and 0 for pr and her2.  i asked my oncologist yesterday if i should consider taking tamoxifen after chemo and radiation and he said yes.  some people consider tn being 3-5% negative and some others would consider under 10% being negative.  i'm at the 8% mark.  i will take anything i can to help with my chances of this not coming back.  I have 2 baby girls now and was going to try for a boy after the 5 years of tamoxifen but he said even with an 8% er positive it might increase the chance slightly of it returning and i don't think i want to take that chance seeing how i already have 2 beautiful and healthy children.  I hope I helped you!

jcoutee

jlynnbain-i'm sorry if some people have already answered your questions, i am trying to comment as i read through the days i've missed.  my grandmother had BC, not tn like me but she had BC 12 years ago along with 5 of her sisters.  i had the genetic testing done and it came back negative.  i had already made my mind up while waiting for the test that i was going to have a mastectomy and hysterectomy but when the actual results came back i had decided against it because I'm only 28.  i think its definitely a personal decision but to my understanding BC can come back even after a mastectomy so if the test is negative i personally wouldn't go through the pain.  Good luck with your decision!

laurajane- i am so glad to read that your pet scan came back good.  i read a few weeks ago about your troubles and have been praying for you and all the women on this sight!  definitely sending my prayers to you!