Calling all TNs

lovelifeBR

@kal52: I also did the genetic testing for the BRAC1 and BRAC2 gene mutations. It seemed like it took forever to get the results, but my results came back as negative. I just had a lumpectomy for TNBC and was told by my doctor that recurrence rates are pretty much the same whether you have a mastectomy or lumpectomy. I have pretty small breasts, but the surgeon was able to get clear margins. I also had two lymph nodes removed which were also clear. I meet with the doctor on Wednesday to determine chemo and radiation plans. It's a hard decision to make. Good Luck with whatever you decide. I know it's going to be a battle, but one that I am going to win!

Bunnybumps

Hi everyone, I'm not new to BCO and have been active on some other threads, but someone suggested I check this one out, so here I am! I'm 44, dx at 44, Stage IIa. I had a BMX with immediate reconstruction, DIEP flap (left) and DIEP flap + muscle-sparing free TRAM (right). I'm currently 3 weeks post-op today, and other than still having 1 really annoying, stubborn drain, my recovery has been pretty good. My neurologist has been on top of pain control and I'm doing my PT exercises to stretch my shoulders, especially the left. They removed 19 nodes, but only 2 were positive. My port placement is scheduled for 8/26 and chemo is scheduled to start on 8/31 - 4 AC dose dense every 2 weeks and 4 Taxol dose dense every 2 weeks. I also started counseling in a BC support program at a local university as soon as I was diagnosed. I knew I'd never get to the surgery if I didn't.

In addition to this lovely BC experience, I have several chronic illnesses: fibromyalgia, peripheral neuropathy, IBS, psoriasis, and some autoimmune issues. I also have 6 meningiomas (benign, stable). These, my age, TN status and 2 precancerous polyps sent me to genetic testing. My family comes from a small community in Poland/Lithuania/Bello-Russe that had a lot of intermarriage there and here in the U.S., and my parents were 6th cousins - not that close, but.... My sister, ever the humorist, said, "Well, with your medical history and our family history, I bet every single one of those genes is going to be inconclusive." Thanks, lol! Hopefully I'll have those results just before I start chemo. My MO is, as he delicately put it, "quite concerned" about the possible side effects considering my already beleaguered medical conditions. But we won't know until we know, right? So I'm planning to prepare for the worst and hope for the best.

A little about me aside from BC: I come from a close-knit family, very supportive. I'm married 17 years to my DH, who is from Ireland and is and has been amazing through all this and beyond. We have no kids and we live on Long Island. We are owned by one cranky, head-butting, screeching, 15-year-old, skinny, perpetually shedding cat named Olivia. I work part-time for a pharmaceutical wholesaler, help my husband in his electrical contracting business, and I have my own graphic design business specializing in papercraft, greeting cards and small gifts (all on hold at the moment). I love to cook, read, golf (well, can't as much in the last few years) and travel and do so as often as possible. I suck at gardening, even though I love doing it, and anyone who prays should do so for the poor orchids some well-meaning visitors brought.

ALHusband

kal52 I think the BRCA test results are necessary for you to make an informed decision. If you turn up being BRCA1 or BRCA2 positive...the diecision is pretty much already made for you as I believe pretty much any Oncologist would strongly recommend bilateral mastectomy. My wife had already had a lumpectomy when her genetic testing results came back that she was BRCA2 positive. The unanimous recommendation from all of her doctors was bilateral mastectomy, so back to the operating room she went.

anotherNYCGirl

Hi Bunny! welcome to the group! You will be glad that you found us! This is a wonderful place!

Great that your surgery is behind you, and you sound like you are doing well!

As for the AC/T, it is ok, but if you find otherwise, perhaps your onc can divide the A & C, as mine did. I had one full dose, but then had just the C, and then just the A (3 more of each) and then the dd T. Although it took longer , it was more tolerable for me!

Keep healing and keep posting!

Peabrain

hello, Bunny. You and I have a very similar diagnosis for BC and I turned up BRCA1 positive, although I have skipped the autoimmune train. I and several other triple negs lurking here will get 4 AC and 12 weekly Taxotere/Carboplatin doses (the order seems to depend on the oncologist).Check with your doctor on the Carboplatin. It seems to be the most recent chemo regimen for triple negative tumors and shows some good promise in stopping recurrence.

Scrunch Olivia from me.

wendeeB

Thanks ms cocker. I need someone in my pocket. my tummy is a wreck. my mammo is tomorrow at 0800. Ugh. I try to give myself the same advice I'd give someone in my shoes, but it's not working. All prayers, well wishes, and all clear vibes welcome. Thanks y'all, as always.

Teka

*Good Afternoon*

shorfi

Teka...how absolutely adorable!!!!

Ladies take care and I will check back in a couple of days. I am due in the OR tomorrow at 6am. Keep me in your pockets.

6feetover

Teka: LOLOL! Ka-yewt!

shorfi: Good luck! *Hugs*

placid44

Peggy,

Yes, as someone else mentioned, Lisa Carey is one of the top TNBC specialists in the country

Luvmydobies

Shorfi we will be in your pocket tomorrow and praying everything goes well. Check in and update when you can!!

Meadow

Sending a hug to you ((LUV))

Mike! I smiled when you said that. I think you have a whole different persona now!

Hello sweet Cocker

Welcome Bunny!

So, my heart is so heavy. We had to put down our old man horse today, Tonka. He was so very special, so gentle and wonderful. He was about 30, and had cancer of all things. We and the vet helped him crossover, surrounded by love. I am worn out, and sad. Thanks for listening

SA8PG

Ah Meadow I'm so sorry. Horses are such great animals. My son loves them. His nightly prayer is that he will own his own horse one day. Sending your family a lot of hugs & love tonight. 😔

J3nny4

Hello

I am very new to posting. This is my second post. Just checking in for roll call. I have TNBC. Nice to meet you all! Let's commiserate

Jenn

Teka

Welcome!

Curlyq1974

Hellllooooo ladies! Wow, lots going on. New members, pending test results, surgeries... UGH! To the newbies, sorry you had to join us. I am praying for each of you for peace of mind as you go thru treatments, tests and surgeries. It is one heck of a ride, but you are in the company of some AWESOME people.

To those pending test results and having surgeries, I pray for quick and positive results, the steady hand of the surgeon and speedy recoveries.

As I have been celebrating life, the end of treatment and regaining my strength and fitness level, my husband and I signed up for the Warrior dash. Now, you have to know, we are both former Marines and have done the Warrior dash multiple times. This was a special one though as it was the first one since my diagnosis that I could actually participate and I was PSYCHED!!! Bring it on - lol...

All was going well until about the 2.5 mile mark when we came upon an obstacle called the Warrior Wall. Now the Warrior wall is about a 20 foot wall that is straight up and down. You climb up it using a rope, transition to going down, and it is a ladder to get you back down. I went up like a champ. Got to the top, transitioned, said to my husband, see you on the other side... and then missed the next wrung of the ladder.... down, down, down I came... and FAST! Landed on my right foot with all my force and weight... and that is where I stayed. No tears, but I was hurt. And I now have a Lisfranc fracture... tomorrow I will have surgery to repair it. Below are some xray pics I borrowed off a site that explains the injury. Left side shows the fracture, right side shows the new hardware I will be sporting to fix the fracture..

What luck LOL!!! I have to tell you, I still have a smile on my face and can't stop laughing about it! Broken bones are nothing compared to TNBC! I guess God just really wants me to slow my roll and enjoy life. AND that my 41 year old body, is not the same as my teenage body that could bounce and keep going!!! LOL

Oh and my hubby, who loaded me on the golf cart to get me off the course and then went on to complete the race, made sure to get my finisher medal. I love him!! Such a goof. He said I am still a "Warrior" no matter what His nursing skills regarding a self inflicted injury versus cancer are significantly different as well. I call him Nurse Grumpy!!! What a great guy though to put up with me and my craziness!

To everyone here, I pray everyday for you all. That God may be merciful and compassionate to us all. Sending hugs and love to all who need it.

lovelifeBR

I am new to TNCB as well. I am 55 years old and was diagnosed on 7/08/2015. My family has no history of cancer. I did the genetic testing for BRAC1/2 and it came back negative. I had a lumpectomy on 8/04/2015 with clear margins and two clear lymph nodes. My tumor was 1.1 cm. My doctor's appointment is today regarding my treatment plan. I am losing sleep over this diagnosis knowing that I have to go thru chemotherapy and all. I know it's different for everyone, but prayers are appreciated. Good Luck to all of you!

lovelifeBR

@Peabrain:

How is your chemotherapy going? I meet with my doctor today to discuss my road to recovery. I am ready to get on with it all and get back on the road to recovery.

lovelifeBR

@curlyq1974: Good for you, but sorry to hear about your foot! Ouch! I know you will probably try one again once your foot heals. I'm with you as far as exercising. I hope I can keep up with at least some of it while going through chemo and all!

Curlyq1974

@lovelifeBR: It is like you know me already! Yes, yes I will be doing another one as soon as I can... As for diagnosis, treatment and planning... it gets better once you know what you are doing as far as a treatment plan. Then you just take one step at a time... Sorry you are here. Best wishes to you!

Bunnybumps

Meadow, I'm so sorry for the loss of your Tonka. Losing animals is never easy. My husband I had to put our cat, Tully, to sleep last past February, also for cancer. I've had many cats over the last 30 years, but in all honesty, he was/is my favorite. I still miss him and have a cry every now and again. I'm glad that you were able to be with Tonka and I'm sure he felt your love as he went to sleep. xxx

slv58

Meadow, I'm so sorry about your horse. I think it takes a lot of courage and compassion to make the decision and I know Tonka appreciated your love and support. Our animals truly become our fur babies. I know my pup has stayed by my side faithfully through chemo. They just know. Tonka knew you were doing the best for him. Lots of hugs and may your heart be filled with joyous memories to help ease the pain.

Shari

Meadow

Thank you SA8, Bunny, and Slv, so much!

Welcome J3nny

Hang in there everyone

anotherNYCGirl

Meadow, I, too, am so sorry for your loss. We do get so very attached to the animals in our lives. It is so sad to lose them, - they are so much a part of our family. Tonka was lucky to have been so loved.

lovelifeBR - Welcome, - you found a good place here!

Meadow

Thank you so much Another

Yes welcome LoveLifeBR

CarolinaAmy

Meadow, I'm so sorry about Tonka. Losing a four-legged family member is heartbreaking.

I finally met with the surgeon Monday, and I felt rushed. I liked him, but he was running so late that it felt like he went through the spiel and I didn't have enough time to breathe and formulate the questions. I thought he'd be pushing lumpectomy, but he was very open about mastectomy and possible BMX. He also was willing to postpone for neoadjuvant chemo, but that depends on whether the medical oncologist is willing. Without the definitive diagnosis, some are leery of doing that due to the risk of overtreating. He didn't say, but I strongly want, a sentinel node biopsy first no matter what.

I was finally able to get the people at Duke to actually get back to me (it took ten days, which did not give me a good feeling) and have a consultation with the surgical, medical, and radiation oncologists on the 26th. Because of the information y'all posted earlier, I researched Dr. Lisa Carey at UNC and have an appointment with her and two other team members next Wednesday! (These folks got back to me that same day.) Whether or not it changes anything, I will at least feel like I thoroughly explored all options and decisions, which will give me some peace. With Dr. Carey, I know I'll have the latest thinking on TNBC as well as know about clinical trials, which my surgeon kind of blew off.

I met with the geneticist yesterday and the BRAC testing is on its way... 7-10 days for results. My MRI is tomorrow. Depending on those results, the decision between lx vs. mx is an easy one, and then it becomes what KIND of reconstruction. I was stunned when he told me that the most they could get with autologous tissues would be a B cup because "there wasn't much there to work with". (Really? The ONE time I don't have enough chub goin' on.) Given that I currently have what he referred to as 'generous breasts' (I laughed out loud), going from 34G to 34B would be a shock.

How's everyone doing with chemo? And do you have any thoughts or insights on neoadjuvant vs. post-op?

Bellanan

Thanks Titan for inviting me to this forum. I think I am the matriarch of this group. I am 71 and DX with TN 1.1 grade 3. No nodes and clean margins. Have had a bilateral mastectomy with the beginning of reconstruction. I have not heard what my protocol will be so... I am 3 years out from TP BC. What a shock when I went for a yearly mam and was called back - bummer. The information appears not to be as positive for TN as was for TP because of the drug Herceptin.

Just putting it out there if anyone has something enlightening to add.

StefLove

Carolina, so glad to hear you're getting a plan and other opinions in place! I hate feeling rushed too, one of my biggest pet peeves with doctors. Go with your gut and choose whoever you feel most comfortable with.

My chemo is chugging along. #6 Taxol tomorrow. Halfway there! *sigh* Its never ending it seems. As for neoadjuvant vs post-op, I didn't have a choice really. We did a lumpectomy right away bc we only thougtht it was DCIS when they did the biopsy. Funny how that worked out. I know a lot of other ladies on here have had a nice mix of both though!

6feetover

CarolinaAmy: Hi there! Regarding neoadjuvant vs. post-op chemo, I wasn't given a choice. When the malignant biopsy tissue came back as TN, I was immediately put on the neoadjuvant track...

Peabrain

I wasn't given a choice either. Surgery first, then chemo, no radiation.