Calling all TNs
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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
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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.
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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!
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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.
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@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!
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@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!
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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
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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
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Thank you SA8, Bunny, and Slv, so much!
Welcome J3nny
Hang in there everyone
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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!
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Thank you so much Another
Yes welcome LoveLifeBR
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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?
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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.
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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!
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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...
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I wasn't given a choice either. Surgery first, then chemo, no radiation.
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hey Carolina- please post and share what info you can from your consult with dr. Carey. Am interested to know what she thinks.
Adarkad- you were not given a choice and had to do neoadjuvant with a <1cm tumor? Where were you treated? I was told neoadjuvant was reserved for 2cm + last year when diagnosed.
So interesting how protocols differ depending on where you are treated and from what I can tell, geographic region of the us!
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VerukaNY: Hi there! I haven't yet had surgery, only a myriad of horrid biopsies. The biopsied area in my left breast that turned out to be malignant was itself <1cm, but the surrounding area, containing high-risk, "suspicious" tissue is/was actually around 3 cm. Because that area's not been surgically removed, my onco doc based her decision on the mass in its entirety. There's also lymph node involvement. I've got high-risk masses in my other breast, as well, and a strong family history of recurrent, pre-menopausal triple-negative breast cancer. I'm being treated at Yale-New Haven's Smilow Cancer Hospital; the team told me that they're throwing the "gold standard" at me because of the TN and the family history. I'm also in the midst of more comprehensive genetic testing (beyond BRCA1 and BRCA2)...
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Good Luck to you. I know exactly how you feel. Hang in there!
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@adarkadaptedi: Good Luck to you. I'm glad they are throwing the gold standard at you. Stay strong!!
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lovelifeBR: Thank you! I'm working on it! This all just suuuuuuuuuuuucks...
Round 4 (last round, woo-hoo!) of the "big guns" next Tuesday, then a two-week break, then the next chemo installment, i.e., weekly Taxol (plus probably carboplatin) for 12 weeks. Yaaaaaaaaaay.
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@adarkadapte: We are meeting with the oncologist next week and I am ready to get on with the POA. It will be a long journey, but totally worth it in the end. My anxiety level is a little high right now to say the least!
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Hi, all. I don't think I've delurked on this thread yet. Thank you all for the very helpful info!
I'm TN and have been doing neoadjuvant chemo. 4 dose dense AC then 12 weekly Taxol. Had my 11th taxol yesterday. One more left!!!
My tumor responded hugely to the AC. Shrank significantly after the first treatment and continued to shrink over the next treatments. May have continued to shrink with the Taxol, but I don't know as now it just feels like a "thickening," rather than a well-defined lump. Had ultrasound after 2nd AC, surgeon confirmed shrinkage, and we confirmed plan for lumpectomy in mid-September. BUT, my MO had casually mentioned genetic testing after BC treatment to see if I should have ovaries removed. It occurred to me a few weeks ago that maybe I shouldn't wait on that testing, as if I'm positive maybe I should have a prophylactic BMX??? So, I talked to the MO, and he ordered it. But my insurance co. says I have to have genetic counseling before they will run the test. I'm sure this will all unfold and I will eventually get the test and more eventually the results. But, times a wasting . . . . Why didn't the MO or BS order the test earlier?????
Yes, this suuuuuuuuuuks!
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Bluedog my wife's MO (AND the second opinion MO at a top cancer center) both recommended immediate genetic testing. I'm not sure I've ever heard of one wanting to wait on that. I'd be interested in hearing his/her reasoning since some treatment decisions may take the results into account. Agreed it's not something you need to jump in an ambulance and rush someplace to do...but I can't imagine an MO wanting to wait any considerable length of time.
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Carolina-i was given the choice and felt like I didn't choose wisely. I chose surgery first and ended up with complications that postponed my Chemo by 3 months. Since I had no issues of any kind before it never dawned on me that I would have complications.
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adark, ahhhh the good old gold standard!
when I was first prescribed my chemo I was only going to get dose dense AC and dose dense taxol. Then my MO presented my case to a cancer board and it was unanimous. I'm too young for this crud (I'm 34) so gold standard it is! 4 AC, 12 taxols with 4 carboplatins thrown in for good measure. So far so good with treatment. I just finished taxol #6 and have already had 2 carbos. My blood counts hate me but I'm glad I'm going this route knowing that we're doing everything we can.
Good luck with the next round
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ALHusband, thanks for responding. I'll share what the MO says.
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StefLove: Thank you! Good luck in your journey, as well!
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Luvmydobies= I have been away for a while. Super busy selling my house and moving my son. Anyway, I travel every 6 months to see my MD's in another state which I use to live in. So,you don;t need to give them up.
Welcome to all new comers on the board. Sorry you are here but,it is a wealth of great information and support.
Alhusband=Again I say "I LOVE YOU" Hope you are enjoying your red couch.
In 2 weeks my one year mammo. Had one at 6 months now another six months have passed. Keeping my fingers crossed all looks good. I feel great!!!
FYI= I lost 22 pounds that I gained during chemo. Took 3 months.
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I'll be with you through your mammo, as everyone was with me. Thank goodness mine was all clear. I have another follow up in 6 more months. I really relied on the prayers and wishes from here as I was waiting on the results. I literally felt as though I would puke I was so nervous.
told the radiologist that the anxiety prior to this was enough to have me considering bmx!
happy Sunday to all. I'm busy prepping my meals, and bags of veggies for juicing for the week. xoxo
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