What is this???

Kite

Just had a a double mastectomy 2 weeks ago. At first the path report said I was positive or er and pr and HER2, now it says it is actually NEG for er and pr and the jury is still out on the HER2. The doc said for whatever reason the HER2 is not on the final report at this time. He says he is leaning towards that I do have TripNeg. So, tell me, what the hell is this?! If it's treatable why is everyone who knows anything about BC say "that sucks" or "I am sorry" Is it gonna come back? I don't have any more boobs so does it show up other places? I don't know when I meet with the oncologist because I am still waiting for them to contact me through the mail. Also, I meet with the radation people in Jan. My nodes were clear, margins clear, and tumor under 2mm. But since the tumor was under 2 barely and the marigin was 2mm they are saying I fall in a grey area and should really think about declining radation. I DO NOT want radation. I am terrified of the side effects. If my cancer was futher along, and tumors where bigger, well, then I'd be more on board with the idea but I really don't want it if I don't absoultly need it. I am so confused, frustrated, and just want someone to tell me what to do. (Not really but that's hwo I feel right now)

Kite

Tumor under 2 CM not MM... sorry typo......

shannyshields

Hi Kite!

I know this is scary and confusing...it sucks...but I just want you to know that my family and I just celebrated my 2yr cancerversary in Sept and it does get easier! Be careful how much info you read on all of it...including triple negative, but its also important to be informed.  Right now, you are scared and scrambling to get ahold of yourself and eventually, that will slow down.  As for radiation, I chose to do it.  I have almost the same as you, but 1 positive lymphnode(which made me stage 2a).  I am one of those people that was intent on doing EVERYTHING that I could in terms of treatment.  I am not quite sure what about radiation you are so afraid of, but I promise you, its not that bad! Once I finished chemo and went on to radiation, it was cake! Of course, i did have some side effects, and we are all different on how we respond to treatment, but I found a little bit of tiredness and weakness was worth it for me to do radiation.  I also loved my radiation techs, so it became a reason to chat with my new friends every day! Whatever you decide will be whats best for you, but I really don't think you need to be so fearful of radiation.  Good luck! xo

PlantLover

Hi Kite ... I'm your polar opposite ... triple positive.  Maybe one of reason people may be reacting the way they are is that with triple negative, you don't have hormonal treatments or another drug called Herceptin, used for HER2 folks, in your arsenal of weapons.  That doesn't mean it's not treatable!  It's also good that you found it so early. 

I'm so sorry though ... 31 is soooo young! (I saw your other thread) Get ready to kick some cancer butt!

I'm sure there will be some triple negative ladies along to give you more info.  

TifJ

Kite- I am triple negative. Please get your final path report before freaking out. Triple negative is harder to treat as there no hormonal drugs or Herceptin (for HER2+) to treat it. Triple negatives respond very well to chemo. Our chances of recurrence go down dramatically after 3 years while ER+ recurrences tend to go down slowly after 5 years. Still, I believe cancer is a crapshoot and everyone is different. There is no guarantee with any kind of cancer that it will not come back. If you turn out to be a true triple negative I imagine chemo will be suggested. If you've had a mastectomy and no nodes are positive you shouldn't need radiation. If you are ER+, then the plan may be different. Talk to your doctor and make sure you have all the information on your path report!!

mrsnjband

Kite,

You might want to consult with MD Anderson or another major cancer center.  They usually pull out all the stops when treating triple negative.  My primary was IBC, but I am triple neg as well.  If they can kill all the cancer with rads & chemo in order to prevent any  stray cells from spreading somewhere else. I am not an expert on TN but it tends to recur sooner rather than later.  So the first 2-3 years are the hightest chanced of recurrance.  Thankfully I am 4 years since my diagnosis with no recurrances. 

There is a thread here call: Calling all TNS.  I'm sure there are lots of experts there. NJ

TifJ

BTW- I am in Missouri too. About 40 miles south of Kansas City.

Kite

Thanks ladies for responding, I am not totally freaking out just a little confused. It's so much info and there are so many decisions. One thing I have heard about rads is it can burn your lungs. Someone I know had that happen and they got sick and couldn't recover due to the rads they had in previous years. I also know of a man who's intestins were burned so badly he had a cols bag.. I know these are extreme cases but they do make me a bit nervous. Hopefully the rads docs will clear some stuff up. I am just curious if there is anyone out there that chose not to do it or had trouble deciding.

TifJ- What you said makes sense. I know I'll have chemo, my port is being put in the 12th. And if you look at just the facts...no nodes, under 2cm, margins clear, full masectomy it should fall under no rads.. guess we will see what doc says. I live in Springfield! In fact I am going to KC for the Chiefs game Sat. It's my bday present, since my bday is TODAY! LOL

mrsband- I have considered contacting MD Anderson if this starts getting all complicated, I am sort of confused how one report says I was hormone positive and then the next says I am not. Doesn't make much sense. 

TifJ

Kite- Happy Birthday!!! Hope you have a great day at the game!

I would ask you dr. about the rads. I had a uni-mx with immediate tissue expander placement. I was told radiation was not necessary as the breast tissue was gone and no nodes were involved. However, was the tumor close to the chest wall? It doesn't make sense to me, but then again I am not a Dr.!!

Kite

Yes, one of the tumors was at "9 o'clock" and was sitting on my sternum. It's the one I felt, I had 2 more but one ended up being not cancer and the other was right at 1cm or under.

I cannot wait for this game! I am a HUGE fan and we are taking my 4 yr old. He got a Chiefs uniform with helmet for Christmas. He has been wearing it all morning running around the house like he is playing the game. Even said his sister needs a cheerleader uniform so she can cheer for him. 8) 

It looks like we may have the same cancer. I plan on calling my surgeon on Tues and seeing if there is any word on my HER2. I do remember glancing over at the report and it saying "ER 0% and PR 0%" So I guess that means there is none at all. 

Carla9112

Hi Kite - I am triple negative too and completely freaked out when I tried to learn more about it on the internet.  Lesson learned - don't believe everything you read.  A lot of progress has been made with this type of breast cancer and chemo/radiation works really well.  I am just about to finish up my chemo and then on to radiation.  I really didn't want to do either since my cancer had not spread to any lymph nodes.  I figured after the double mastectomy it should all be gone.  My wonderful oncologist, however, told me that to be on the safe side for any stray cancer cell that might be lingering in my body I should do both chemo/radiation.  The radiation is more for the chest wall - just to make sure there aren't any strays in there.  I trust him and want to do everything I can to keep this stuff from ever coming back.  Take care and know that you have a lot of triple negative sisters here that are traveling down the same road.  We'll help each other get through it!!

TifJ

Kite- it does sound like the rads is a good idea since it was close to your chest wall.

I used to go to the Chiefs games quite a bit until I got married- he is not interested in sports! My son (9) would like to have a Matt Cassel jersey though! Let's hope they pull off another win!!

Kite

I guess we will know on Jan 10th. I have a booklet on radiation from the American Cancer Society. Figured I'd read that.

GO CHIEFS!

yellowdoglady

I was not so lucky. I lost 4 of 14 lymph nodes, and was told I would have less than a 30% chance of living and being well at five years. At three years out, I am well because I chose chemotherapy and radiation, and lots of both. It's your choice, but know that you have a choice.

pennylane

Kite, Don't be afraid of rads...I had it done prone (on stomach) to avoid lung damage...and am 6-years out with no problems. PLease look into having it done this way.....Really wanted to connect with you and Tifj re Chiefs...I am New Yorker and huge Chiefs fan, as our nephew is Ricky Stanzi their rookie qb,   and we know he is going to do great things ...just wish they would give him a chance already!!!...anyway: Go Chiefs!!!

TifJ

Penny- other than the win over the Packers, the Chiefs have pretty much stunk all year. Maybe if they give Ricky a try we can win for a change! Maybe next year he'll get his chance and show what he can do!! How exciting to have him in your family!! Go Chiefs!!

yellowdoglady

Kite, sweetie,

Think about it. Talk about it.  I did and I am here and well three years later.  Please promise to think about it.  Imagine what you would do if you had years to be well.  And you can.  It is possible, if you get busy and work to get well my friend.

pennylane

...A little story here for My fellow Chiefs fans...Tifj and Kite...Something about Ricky...we seldom talk about it... but on the inside of his throwing arm is a large tatto of ornate lettering...It spells out "Aunt Annette"...She was one of us, a "bc sister"...She was dx a few months before me and her initial dx was awful...we lost her in 2006...she was Ricky's biggest fan and supporter and I used to pray to her when the game was on the line back when he was a Hawkeye qb...Well I seldom go off topic on these threads...but it is that time of the year for human interest stories...And again, Kite....good luck with your difficult decision....

Kite

Penny- As in Pennylane Beatles song? Love Beatles!

As far as Stanzi, that is so cool to have him in your family. I don't understand why they didn't put him in when Palko was..well..you know..I screamed at the TV plenty hoping they'd give him a chance. We had an awesome time even though they lost. Memories I'll have forever!

My Christmas sucked. I got a planner, which I asked for, but it was a breast cancer one. I already have BC one that the cancer center gave me. I didn't want another one! It set me off and the tears came uncontrollably all day. It was my first real meltdown since this all happened. I just couldn't pretend this Christmas was very Merry. Now I have had worse so I am not complaining too much but it wasn't that great either. I got to see all the little ones in my family enjoy all their gifts and my 2 yr old was really into it too. It was fun on that perspective. 

I hope everyone else had a nice holiday! 

pennylane

Kite, the beginning of this process is most brutal....I remember being terribly humbled and I remember crying much of the day for weeks...Dealing with ones mortality is unlike anything I had prepared for and I am, and was, quite grown-up when it all began....For someone who has been reduced to living day by day...sometimes hour by hour, as we do during the daunting early days of dx and treatment....a planner is certainly a macabre gift...So be it...I see you are Stage 1...Odds are so in your favor (knock on wood)...And those prognostic numbers are something that can give you comfort...they are based on facts....You sound a lot tougher than I was 6-years ago...I never could have gone to a sporting event and had a good time like you did...Oh also, I'm thinking back...my tumor was rather close to my chest wall too...Now I remember surgeon saying she might reccommend radiation whether I chose lumpectomy or mx depending on if it was touching muscle or wall....So there is a reason for these things....And radiation is very easy for bc patient...no side effects...just a little fatigue and perhaps a little redness on the skin...an easy end to the process....again it is your decision and sounds like you are solidly on top of things!!! Pennylane is actually my cat's name...I adore her and borrowed it for these boards as it sounds kind of happy and lucky!  Best wishes to you, P

yellowdoglady

Get yourself together Kite.

Your dx is mild. 1cm. Stage I.  No nodes involved. ER-/PR-.  No measure of Her2.

You had a terrible Holiday.  So sorry.  You got off easy, so harping about how hard your life is is kind of cold.  Then you say you are not complaining too much, and you have a two year old, who might be feeling the chill off you if you don't warm up to her.  Get to her and let her know you love her.

Best of wishes to all.

       

Kite

Penny- Thanks for your responses. It is comforting to know there are others out there who can express themselves and share the feelings. I have not had any bad days till christmas. Even the surgery day didn't get me down. It just is what it is. I want you to know I appreciate your kindess and non judgement.

Yellowdoglady-  I know my diagnoses is mild, never said or implied I had it "rough." I just had a double mascetomy, I have 3 kids, 2 boys and a girl, age 2,4,6. I live on my own while my husband works out of state to support us. I am in college for the first time, I just turned 32. I have had RA for 8 years. I can have a bad day if I feel like it. I got on her to express how my holiday went. As I stated earlier I have had worse and I know I can't be happy every day. I am incrediably greatful for my early detection and that I knew my body well enough to catch this earlier. I am grateful for my children and how close our family is. I am grateful that I can have reconstrution. I am grateful that there are wigs for my head. I am grateful for a loving supportive husband who is there for me no matter what. So, please don't misunderstand that my occasional post about being confused, tired, or upset about my day has anything to do with me feeling sorry for myself. 

maltomlin

Any dx of BC is a bad one and the levels of worry are still the same.

I'm really sorry you had a meltdown over Christmas but we've all been there and done that. It's dreadful. Christmas seems to enhance the feelings.

I was dx in the summer of 2008 (and am feeling good) and my worst Christmas ever was when I was finishing chemo. Still felt as though I was on borrowed time and felt like something scraped from the bottom of a birdcage. Truly thought it would be my last Christmas.

Fast forward to now and I feel great, enjoying life and really enjoyed Christmas.

I'm not triple negative, but had the chemo and rads (the rads were a walk in the park) and have come out the other side, as you will.  

I really don't know how you young mother's cope with BC as it's bad enough when you're in your 50's like me. My heart goes out to you.

All I will say is, take one day at a time, don't google too much and accept all offers of help.

Take care

Mal 

profbee

Kite, it sucks.  You do have a lot on your plate.  You're allowed to have a bad day.  Hubby was asking what to get me for Christmas...he ran out of ideas...and he said, "I thought about getting you a cool hat (I'm still bald right now), and then I thought no."  Yeah.  No was the right answer there buddy.  If I opened up a hat on Christmas morning, I would have cried too.  And yes, my prognosis is great.  I'm stage 2 and Her2+, but I've been really lucky in my treatment and I'm doing great.  But we're all allowed to have poopy days and get down by this.  There's no comparing here.  It still sucks to be stage one too.

ali68

Hi I've just found out I'm stage 3 triple neg as well. I have 8 cancer lymph nodes and a small lump on breast. Going to start chemo next week I think but having had meeting yet. I felt the same thinking my chances of keeping it away were harder. I need to speaks to doc's and see what they say. Anyway you have to fight this and stay strong.



Alison

profbee

I'm so sorry, Ali  You've found a great community here that will help you through.  When you know more, there are lots of people here who will have had similar experiences and can talk with you.  Good luck!

marie5890

Kite,

Glad you know not to let anyone invalidate your feelings or the fact of  having a bad day. You will have other bad days too.

Yellowdoglady, Im gonig to give you the benefit of charity and perhaps you, too,were having a bad day and you made Kite your target of the moment of your own feelings and thoughts.

beacon800

Kite, I so much get it about the BC planner.  I had my BMX in December (2 years back) and needed a new calendar at that time.  I pretty much RAN when I saw any BC calendar!  The last thing I wanted to haunt me.  I wanted to do as much as I could "normal" to take my mind off things. 

My situation was not the same as yours, but at the beginning they did not know what was going on and I went thru the roller coaster type thing you are doing now.  It was horrible and disorienting and provoked a lot of fear.  I get it. Hope you are feeling ok now.  You could ask your doc for some anti anxiety meds, so many patients use these and they can help.  Meanwhile, fasten your seatbelt and just keep going.

KSteve

Kite - Believe it or not, this time will fly by.  This time last year I was finishing chemo (12/30/10 was my last treatments) and getting ready for a double mastectomy.  If you would have told me a year ago that it would go fast, I would have laughed.  But it did!  Fast forward one year and I'm feeling great, had a clear petscan two days before Christmas and am making fun plans for this year.  Going to Vegas with my hubby for Valentine's Day and going to see my daughter in Italy at the end of March (she's studying abroad from spring semester).  Oh yea, and my son graduates from high school on May 25!  Enough about me, I just wanted you to know that you will get through it and come out the other side . . . and this time next year, you will be giving hopes to someone else that has recently been diagnosed.  Take it one day at a time.  And allow yourself to have those tears when you feel like it.  Those days will become fewer and farther in between as you move forward. Wishing you the best!

Kathy 

vickilou50

hi all, I am trying to find out info for myself, I just got off the phone with my surgeons office after having a left mastectomy and lymph node dissection last week.....I originally was diagnosed with stage 3c triple negative invasive ductal breast cancer in july, and completed 6 rounds of ACT the week before thanksgiving...followed by the aforementioned surgery,  now the pathology report doesn't sound that good to me, was told there was no sign of the large tumor from before chemo. (good) but there were cancer cells throughout the breast tissue, and that 13 of 13 lymph nodes were positive, I'm to be scheduled next for radiation for 5 weeks........but I am very scared, are there others out there with this same response to chemo and still living?    what do I do next?  any suggestions??  thanks to you all,  I've never posted before so I'm trying to learn to reach out?   thanks again,  Vickie

KSteve

Allison - Remember, triple negative also responds very well to chemo.  You will feel better after talking to your oncologist.  I had chemo first, then bilateral mastectomy, radiation, and exchange surgery.  I know it sounds overwhelming right now, but once you start your fight, you will begin to feel better.  Send me a PM if you have any questions.  And remember, one day at time!

Kathy