Calling all TNs

Sugar77

Suze - what wonderful news about your scans. Hip hip hurray!!

Tiffany - the waiting is the worst. Hopefully you'll get your good news soon!

Well, my bean bag just caught on fire in the microwave. I had to extinguish in the sink. The house smells aweful and my DH is trying to clean the black out of microwave. Ahh and I was so looking forward to relaxing with a cup of tea and my heated bean bag on my back.  Oh well

Take care ladies! 

ksmatthews

So happy for you Suze!

Lynn18

Stupidboob:  I agree with others who say this is not a "losing" battle that we are facing.  According to the Triple Negative Breast Cancer Foundation, most of us will not have a recurrence.  I can certainly understand the stress you are feeling.  I think most of us would benefit greatly from a therapist during this time.  I also found that it helped me to take some anti-anxiety medications to get me through some of the toughest times, even though normally I don't like to take anything.  This thread has helped me a lot also (thank you, Titan).

kathyrnn

Suze...congrats on the great news.

Stoopid Boob, I was scanned up the wazoo, but I think it was more a requirement of the experimental study.  Couldn't go in it if you had mets.

Lynn thanks for that site.

I have to say I'm impressed as hell by the combined knowledge of the people on this thread.  I'm a nurse and finding I don't trust in my caregivers judgement at times.

They put my first IV in my L arm (dominant arm).  I asked why.  They said, because your nodes haven't been tested yet, we don't want to use your right arm (R-sided Breast tumors) I whacked that IV all day long with my pocketbook, lol  On my first infusion day, they again went for my left arm, and I said let's revisit this R-arm thing again, and I got a little more information.  We, don't want to use the right arm, and btw, once you have surgery, we'll never going to be able to use the right arm again" WHAT??????  If you can't use the right arm after surgery, why the hell would you want to blow the veins in the L arm now. She said "good question" and called my doctor.  We WILL be using the R arm from here on out.  What in the hell where you ever thinking??????

sukie10

Kymm, Bkj66, Suzie 35. Thanks for your thoughts. I think my judgement might be a little clouded by the fact I saw a really nasty case of LE in the waiting room last week. The poor ladys arm was as big as my thigh. I also really like and trust my Onc so I weigh pretty heavy on her opinion. 4 months ago I'd have let them cut off my nose if I thought it would help but I guess I've had a little too much free time to freak myself into all the things I might have to deal with later. Maybe I'll get another opinion just to ease my mind. It does seem a little stupid to risk it.

Stupidboob,( I love your name) Most of us here really are going to be just fine. Others have said it, our risk is higher for the first couple of years and then there is a dramatic decrease. Be careful what you read. Things are getting better for us all the time. Studies from even 5 years ago are no longer acurate. There is a much better understanding of how to treat us now that we have been identified as a specific sub group. You might not have even been given chemo a few years ago because they didn't understand the benefit..now they do. Hang in there chemo can be rough but its doable. After a coulpe of treatments you'll be able to get ahead of some of those nasty SEs and it won't be so bad. Come here anytime you want, there is always someone on these boards who knows how you feel, there will be lots of times when your non-BC support group just doesn't get it, we all do.

Babs37

Suze- HAPPY! HAPPY! HAPPY!

SunnyCoconut

StupidBoob -

I have never had any scans either.  My doctor says they cause more stress and more procedures chasing false positives.  He says if I feel bad or answer his questions with the "wrong" answer then we do scans.  At first I had a very hard time dealing with that, but now I kind of understand it, or I'm getting used to it! 

During treatment (AC), I felt so gross.  I finally told myself that I am essentially being poisoned to kill the cancer.  And that helped me to deal with the funkiness that I felt.  I took all the anti-nausea meds they would give me.  I have an irrational fear of vomiting.  I also discovered I only had nausea if I allowed myself to get hungry.  I had to nibble all day and I felt so much better.  I would even wake up in the middle of the night and my partner would get a little piece of bread with peanut butter on it.  Also, take your stool softeners!!  I almost took myself to the hospital over this, honestly!  

As far as dealing with death...  I think our percentage is about 80% for 5 year survival, so why should we assume we are in the other 20%?  I want to be in the 80%!  And odds are that I am, and so are you!

Love everyone on this site!!

slcst12

Hi Ladies!
Haven't posted in a while; just trying to get my head around all that's been going on.

Finished up chemo on April 28th and am  well into Rads. Don't like the weekly x rays they give me "to verify positioning", but I should be all done by July 8th.

I'm tired and cranky and haven't been eating the best of foods (which I know is a risky move given what we know about TN BC), but I'm also trying to NOT beat myself up too much about it.

I'm anxiously awaiting new hair growth (i have some peach fuzz now) and am posting on the Hair Hair Hair thread as well.

Thank you ladies for being such awesome support!

Luah

sukie10 - There is a fair amount of controversy within the medical community about axilla dissection versus radiation for treatment of nodes.  There are several threads on these boards and you may want to do a search. I did a lot of research myself on this back in 2009, and if I have time, I will try and look it up for you. A very recent study showed rads were equivalent to surgery in effectiveness; and another that was just released this week at ASCO showed the benefits of regional radiation (I think in addition to node surgery) in reducing risk of recurrence.

All that said, after an SNB showed 1/4 nodes positive with micromets I decided to have my axilla removed. Ten more gone, and none cancerous. Despite the emerging research, I don't really regret my decision (especially with an aggressive TN cancer), as at least I know my node status, and know that the cancer didn't progress further. And if it had, I would have gotten the mass out. No guarantees wrt to distance recurrence either way, I realize.  I'm fortunate to not have suffered from any LE (and by the way, rads can cause LE too.) 

It's a very tough decision to consider more surgery. (I was anxious to get on to chemo.) If you have doctors you trust, listen to their views, then listen to your head and your heart.  

MBJ

Suze:   WAHOOOOOOO YAY FOR YOU!!!!!!

Sukie:  My first BX (whom I fired) refused to check my lymph nodes (at City of Hope of all places!!??) and said I would get radiation but the BS I decided to go with DID check my lymph nodes and he took only two sentinel nodes, when they were clear he went no further.  This is my recommendation having had adjuvent chemo myself.  Hugs!

Stupidboob:  My first BS had a horrible "bedside manner" and kept telling me if I didn't do what he said then I would die.  If you are uncomfortable with your dr's, then get a third opinion at a different hospital.  The third was a charm for me and I know of one women who got 7 opinions before choosing her BS, though insurance typically pays for only 3.  You have to be comfortable not only with your treatment but with your dr's.  That being said, chemo IS our best option for long term survival.  I wish this were not so but you can do it!  There are no guarantees but you want to go in and give your body a fighting chance and chemo unfortunately is necessary.  Personally if I were in your shoes I would want a dr. who is willing to do a full MRI and at least a PT Scan and an US.  TN is nothing to fool around with and your dr's need to know how to treat and deal with TN.  Big hugs!

Suze35

Sugar - I made myself a rice sock, it works great and no meltdowns!  I just dumped a bunch of white rice in a long sock and tied it off.  I microwave it for 2 minutes, voila!  I have found that if I microwave it a second or third time, it holds the heat longer.  I hope you were able to get the mess cleaned up, burnt plastic smells awful I know. 

slc - congrats on finishing chemo!!  Yay!!!

MBJ - good advice on the second, third, or more opinions.  I don't regret my choice of BS because she is one of the best, but her bedside manner leaves a lot to be desired.  I was able to block that out, but not everyone can.  You have to be comfortable with your doctors, thats for sure!

I just got my extended radiation schedule, sigh.  I will now be getting zapped through July 6th, thanks to that stinking new node.  Oh well, at least the techs are fun and cute, but the 30 minute drive each way is starting to bug.

Have a letdown headache today, hate those.  Hope everyone is beating the heat today!

christina1961

Suze,

So happy for you regarding your scans!!!  YAY!!!

TiffanyF4

Well girls pathology back and I got the "all clear" I swear I wanted to skip out of the cancer center!!!!

Suze35

Tiffany - yayyyyyy!!!!! 

Anonymous

I've got another routine med onc appt tomorrow but this time he didn't order tumor markers. Fine with me, I guess.

So, a quick "feel" and I'm outta there. After all, what else is there to be done at this point? I feel like they are a waste of time, for the most part; just "going through the motions". And yet I've still got two more years to go.

Sigh.

sukie10

Tiffany and suzy 35. I love the good news this week!!

I've got a call into another Onc and another surgeon in another city for another opinion. I'm going to take the first appt. I get and go with the advice that I am given. It's the deciding vote. In the mean time I'll do my own research just to be sure. I really wish they just told me what I had to do because I'd just do it. It's not like you show up at chemo and they let you select your own drugs. If there is never a recurrance this will never matter but if there is I need to feel like I made the best decsion or I'll never get through this a second time. Chemo has worked so well that I really feel like I have a fighting chance now, I'd like to come out of this with as little damage as possible, But I do want to come out of this no matter what. 

tracie23

heiditoo, I go to appointments and think I could be an oncologist... I tell them things... it's so weird. I had TE surgery last week and the nurses were awful. I don't know what has happend to that profession but I couldn't wait to get out of there ... and everyone of them asked me why I removed both breasts REALLY ....

Sugar77

Tiffany - wonderful news!  

I had two sentinel nodes removed and they were clear so my surgeon went no further.  I also don't think I had radiation to my nodal area. My full breast was radiated though. 

Titan

OMG...I just posted on another thread and it was deleted by the Mods..I've never had that happen b-4...guess I will stay here...guess I was out of line.

Suze35

You weren't out of line Titan, the OP was. That OP has multiple user IDs, and starts these threads to get a rise out of us. I occasionally bite, I shouldn't, but it just pisses me off that people take advantage of women who are in pain and terrified.

MBJ

Tiffany!!!  Yay for good news!!!!

Titan:  What did I miss???  Guess you can't say or you will be deleted by the Mods??!!  I am surprised that a couple of my posts weren't deleted but I cannot imagine anything you could say that would cause that to happen. 

Tracy:  My night nurse was heaven and my day nurse made me feel as if I were a pain in the a#%.  Sorry they were so awful to you.  You should file a complaint.  Really!

MBJ

sukie:  Sounds like you have a great plan in place--I think it's great to see how different hospitals/dr's do things.  I got really lucky with my third consult.  Good luck!.

Lynn18

Tiffany:  Happy to hear your good news!

Titan:  I have sort of been following that person who you are talking about . . . I don't even think it is a woman with breast cancer.  I saw their blog and it was very disturbing.  

Anonymous

Saw my onc today. He said I was doing really well but that my joint aches are probably permanent. Well, at least he acknowledged them as legit SEs. Bummer though, as I thought I'd work out of them in time.

Also did some genetic counseling, though I don't expect it to go anywhere. Apparently they ran out of funds for he TN/BRCA research that would have gotten me tested for free.

Suze35

Heidi - glad to hear your visit was uneventful. I feel like I've aged 20 years since chemo, my ankles and knees stiffen up when I sit for even a few minutes. It sucks. Will the genetic testing give you a BRCA result?

TiffanyF4

Heidi - my joints in my knees hurts so bad sometimes I have to go up and down my stairs backwards! I know that's weird but it puts less pressure on my knees. I NEVER thought I would be like this at age 36!

redgrldj

Hi Everyone.. My original diagnosis was May 2008 I was 38.. Stage 2 grade 3 .. 3 centimeters.. No lymphnodes involvement... 4 x DD ac 4 X DD T..... Nov 2010 it came back in my lungs and a spot on my spine... 6 x carbo gems...... Just finished my chemo about a month ago.. Am getting monthly IV's of Aredia for my bones... Just had my 3 year anniersary as a survivor... I go tomorrow to see what our plan of action is.. After round 3 of the Carbo/gems there was major shrinkage of the cancer.. So I am hopeful...

Anonymous

Suze, yes, it would give me a BRCA result but I don't expect it to be approved by my insurance. I didn't know the funds had run out when I went to the genetics office today. However, I now have my name on their genetic info database, so I'll be notified if anything pertinent to TNBC comes up in the future.

I was really hoping my onc would tell me the stiffness would go away after awhile. He knows how impatient I am wrt leading an active lifestyle. I feel much like you do... sitting for even a few minutes makes me stiff, though I do workout of it for the most part. Trouble is, when I get "stuck" in a position it's often through some contortion I have engaged in involving a horse or a sailboat, and it makes it a bit harder to react as quickly to an unexpected event (like a wake from another boat or a horse shying).

ssmith37

redgrldj, I'm so sorry to hear of your recurrence, but so glad to hear you're a 3 year survivor.  If you could, would you please explain the chemo you went through first.  Just had my port placed today, first appointment with oncologist on Monday, and would like to know about chemo for our little TN club!

Congrats and stay strong!

Stephanie

breckgirl007

I was diagnosed in June 2009 with Triple Negative Infiltrating Ductal Carcinoma of my Left breast during my annual Mammogram at age 46. I have a large family history of female cancers including a sister who was diagnosed around the same age years before me, so I have been having annual Mammograms since turing 37.

Triple Negative is surely a fast moving type that put me with stage 1c,grade 3, type 3 in 1 year. I had a lumpectomy and wonder if I should have just removed the whole breast so maybe I would not be in a state of constantly wondering if they got it all or of reoccurance. I  had four rounds of Adriamiaycin & Cytoxane chemotherapy and 32 rounds of Rad treatment. I also had a second lumpectomy due to positive margins following the first surgery. My last Rad treatments ended in January of 2010.

I see my Oncologist every three to six months and Mammograms every six months. The fear hits me with every mammograms as the Radiologist personally visits afterward to tell me that they see some change to my left breast but not significantly and that I should not worry it is probably benign or scarring and that I should follow up in another 6 months!  

I am happy to find this group of Triple Negative warriors and find comfort that I am not alone and that I am not crazy. Thanks to all who post here because we surely can use the support of each other and fully understand one another with the worries and also the strength of each other. I am new to this forum, but not to the cancer and have studied it and sucked up any and all information that I can find on IDC Triple Negative.