Calling all TNs

Teresa,

One more thing (I just re-read your post).  I totally agree that you should start chemo immediately.  You can still get expansions during the chemo.  I had my expansions during chemo, and my plastic surgeon timed it so that I would not be uncomfortable from the chemo to have them.  He went slow and did my expansions about every 2 weeks.

Your nipple can be reconstructed, with relative ease according to my plastic surgeon.  He does it right there in his office.  However, I had such excellent results and was so pleased, that I didn't even get my nipple done.  I just look like a mannequin now.  )

Everything you posted sounds so positive - and chemo is very doable these days.  Hang in there, and you'll be able to get your implant surgery finalized as soon as chemo is wrapped up.  

Wishing you all the best!

Thank you so much for the information!! What is bothering my hubby and I is that my oncologist explained none of this to me. She was just very set on talking me into chemo and I wasn't even arguing with her. After reading these boards for the last few days I was really set on knowing the score that the onco came up with and I think I offended her when I asked her right away what the score was. She wanted to talk about the different kinds of chemo and hormone therapies. I just wanted to know the number. She never explained, or even said, that the score and test didn't apply to me because of the negative findings. I think she was hoping that the high number would scare me enough that I would just jump into the chemo, at least that's what it felt like to me. Even after showing us the estrogen negative findings she continued to use the graphs, charts and percentages on the onco to persuade me to do chemo. I didn't notice the bold, black boxes until I got home and had a chance to really read through the report and realized that none of it applied to me. She is not inspiring my confidence right now, that's for sure. I am rethinking the second opinion thing, though. I don't know if I want to take the time and cost to go somewhere else, at this point. However, when I see her towards the end of next week we're going to have to have a talk about honesty. If she wants me to be honest with her it's gonna have to work both ways.  

Thank you again so much for your time and answers! I truly do appreciate everyone's time and thoughts. I wish every one of you the best of luck and hope that you all are doing as well as we can do with this intruder amongst us.

teresa008,

I am so sorry for the confusion. This stuff is hard enough without having to question the results of the pathology. I am TN and actually glad that I had to have chemo. I want everything done to kill any little cells that think they are hiding successfully. You have to get the answers from your MO as they are the one trained to interpret the results. IMO the first thing is that you have to find out the pathology of what you are dealing with before you can decide what the path of treatment is.

Hang tough, Sheryl

Teresa...I notice you are from Vancouver, WA...So Am I.  Im wondering if we have the same oncloogist.  Sometimes I feel like I have to be the one to find out all the information and then ask questions.  She doesn't seem to be very forthcoming on treatments that I could have been  trying. Everything I learn is from here.  I never had the Oncotype test as I was diagnosed with TN right out of the shoot.  I was so numb at the time that I just went with what they said. But I have to tell you that it worked as the chemo just gobbled it all up. Best of luck to you!

So much to catch up on since I was last here. This was my lifeline during active treatment and I want to thank Titan for starting this thread and everyone who has been here along the way. I was diagnosed May 26th, 2011 so I am almost 2 years out and I am thrilled. Still scary moments and times waiting for test results can be crazy but life is returning to normal.

Does anyone know what the recommendation for follow up by the radiation oncologist is?

Mine left and said to me it was up to me whether I wanted to come back and see someone annually....well duh...I don't know what to think.

Any thoughts?

The mention of Suze 35 remined me of all the lovely ladies here that I miss. Suze and I had lunch a few times and my was she a spitfire.

Hey Ladies,

Do you all know you can ask a question to the team of doctors at John Hopkins Breast Center? I've done it 3 times, and they are very good and extremely fast on responses.

Here is the link.  You can select what type of question from the choices, i.e:  Pathology/Treamtent/etc.

http://www.hopkinsbreastcenter.org/services/ask_expert/

painting - i haven't seen the RO since finishing rads! Not sure why I would have seen him.

LOL that is awesome, thanks for posting :-)

Love it Cocker!

Oh Melissa, that is so nice!  And I also want to say that as well.  I don't know if I posted a message on my 1-year healthy victory on January 4th, but it's the way I feel as well.  So many of you cheering me on. Thank you as well everyone.  

Melissa and Inspired - so glad you are celebrating your one year anniversaries.



Hopex3 -- Keep looking forward and don't let fear, rob you of your joy. It will lessen with time.



Annie - good one!



Today, the sun came out! We have had a lot of rain. Hope it's sunny, where you are.

Melissa and Inspired...remember that you also made it through this yr because of YOU...you are strong women and you did it!!  Congrats to you both...

Got the call from NOLA today for my financial responsibility for my retry surgery on Tuesday and it is a whopping $219.00  I am so excited!! and Scared and nervous and........this time the flap recon is going to work because it HAS to. My rightie is lonely without leftie 

Maggie

Hi ladies, wow skip a couple weeks and miss a lot!  I hope everyone is hanging in there - sending hugs to those who need it!

Hi Ellen,

Hang in there!   What were your lymphedema symptoms?  Did they appear recently?  Wishing you all the best and congrats on the upcoming May celebration!  )

Hello - my turn to chime in and thank Titan for starting this thread, and thank all of you wonderful gals for your support, prayers, and much needed humor!

I had my 1-year post-chemo (actually today is 13mos) check with my MO yesterday. Everything's looking good!!! He only does a chest xray and general labs - doesn't order other scans or tests unless symptoms warrant them. That's okay with me. I'm feeling good!

The onc docs use dx date as the starting point for recurrence/survival stats. I personally like to use my surgery date. Anyhow, I am 1.5 years out, and if 3 years is the peak for TNBC recurrence...I'm half-way through!!! My doc told me that he's seeing most recurrences within 3 years. I asked him if he was seeing a lot of TNs - he was, and had just started another TN-gal on chemo the day before. Where is this nasty beast coming from??? 

With all that we gals at my treatment center have been through - surgery, chemo, rads - we talk about our hair! All of us. Even the nurses.  My male onc just smiled and shook his head. Too funny, but I think it is part of the process of becoming "normal" again. It sure is nice having hair again, but we all agreed that bald was easier! BC is so 24/7. Comparing our new 'dos was alot more fun, for sure.

So, now it's checks with MO and RO every 4 mos, an annual mammogram for lonely non-BC girl, and of course, VIGILANCE on my part. I am having my "dog ear" - that side poof  - removed by my BS with scar revision in two weeks. He left the extra tissue there in case I wanted recon. I don't, but that dang thing has got to go...it keeps popping out of my bra! 

Has anyone gotten back the feeling in their underarm after axillary dissection? Mine's still numb, but the back of my arm is coming back slowly. It's still weird to only have to shave half of that armpit! And it's nice to be able to laugh about these trivial problems, now.

I hope all those currently going through treatment will have minimal SEs, that all the newbies will find comfort and confidence from the wonderful ladies of BCO, and that we "oldies" will jump back into life with joy and fearlessness.

Take Care ~ Shar

Titan ~ from one 'dinosauer' (36+ for us!) to another, belated anniversary wishes!

Navy Mom ~ Hang in there, Mom. My Mom went through the same worries when I enlisted in the Navy, many moons ago (Vietnam Era Vet). Women didn't serve on ships then, but I was stationed a long way away from home and family. My future hubby was on a ship, and he told me that they kept him so busy that he didn't have much time to ponder homesickness...work-eat-sleep. Your son is probably finding the same, but know in your heart that he is thinking about you. Gotta love those sailor-boys!

Hope60, old PM-buddy, how are you?