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TKTK View Drop Down
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Joined: Sep 14 2018
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    Posted: Sep 14 2018 at 10:45pm
Triple Negative, ki67 = 72%
3 smaller nodules lumped together forming a 5cm mass on my left side
Age 41, mother of two kids, both breastfed at least 6 months
No family history; have not yet done genetic testing

Found out 8/27 that I have cancer (received a call when I was at jury duty!)
Starting dense dose AC+T treatment next Thursday 9/20. 
Port install on Monday and PET scan Wednesday.

Received diagnosis at a private breast specialist practice and started having conversations about surgery with a breast surgeon there and she even went ahead and had me meet a plastic surgeon too even before referring me to a Medical Oncologist because my final path results were still pending (the results that would indicate I have TNBC). After having choosing a medical oncologist at Emory Winship, I have since decided to go with a Surgical Oncologist at Emory too. The switch itself got stressful with multiple record transfers, lost CDs and finally being asked to redo all ultrasound, MRIs and a node biopsy etc. 

That said, now that the full transition has been made, I'm appreciating how thorough my new surgical oncologist is.. she was the one adamant that I get new imaging done including a biopsy of the nodes that looked clear, and also insisted that the PET scan happen before the first chemo when my Medical Oncologist suggested getting chemo a day earlier than the PET scan shouldn't be a problem, because he knew how eager I was to start treatment asap. I'm guessing she's had experience with TNBC. I just looked her up.. yes she is experienced! She was on the scientific committee of a recent TNBC conference!!

The tiny incisions the biopsy and clip placement made are limiting my arm movements and I'm constantly icing it. I'm dreading how painful surgery is going to be!
(Unfortunately previous dr mentioned she would be placing a marker clip during my first biopsy of the lump and gave me the whole explanation of what it is, but she must have forgotten to place a marker, so I had to get it "redone"! I was so confused to hear that they couldn't find the marker)

That was kind of long... but this is my story so far...
So glad I found a forum of other TNBC patients like myself. Finding that I quickly get turned off when folks talk about all these other BC survivors they know. I need to know if they were TNBC too.

Thank you in advance


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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2018 at 7:18pm
Welcome TK, I'm so sorry for your diagnosis but glad you found us here. As you go thru this experience you can bring your questions, fears and feelings here - it's a safe place where everyone knows what you are going thru.
I was 45 when I was first diagnosed, with 2 kids as well. Having your kids have to see you go through this is the hardest thing! It breaks a mother's heart to be helpless to protect them from the realities of the cancer and all the awful treatments. I am most grateful that my relationship with my kids only got stronger from it. They amaze me! I've seen a lot of parents go through this cancer journey now. The number one thing I've seen that makes a difference is being honest with them, talking to them about what's happening in an honest (and age appropriate) way lessons their fears. Trying to hide the realities of it leaves them more fearful I think. Y'all will get thru it!
Biopsys are freaking traumatic! And often painful. My first biopsy was an awfu!, painful ordeal. And he missed!! He did not get a sample of the lump, which caused a cascade of issues for me. Getting a second opinion, and moving to the doctors you are impressed with is an amazing start for you. So far it sounds like you are making excellent choices for yourself which will serve you well as you go through this process. And getting a PET scan before you begin treatment is absolutely the right decision. Since you're doing chemo first a thorough, recent scan now is vital. They should do a mammo & ultrasound to check the effectiveness of the chemo after a few treatments, so the scans are important for comparison.
The PET is a full body scan, looking for "abnormalities" . Remember that no 2 bodies are the same, and you have LIVED in that body for 41 years - life leaves marks :) It is very common for "things" to show up that they have to do further tests on to be safe. It is a scary!! But the vast majority of the time it's nothing. The first time I had "things" show up on my lung, a back rib and my ovary. Lung x-ray, bone scan and ovary ultra sound booked. They showed the lung was a scar from pneumonia, rib was a healed crack I never knew I had (probably a car wreck 20 years before) and the ovary thing was a normal fluid filled cyst. Nerve wracking! I had a (very rare) recurrence of TNBC, this time it was my thyroid and a sinus that lit up. Blood test and ultrasound on the thyroid, an appointment with an ENT who stuck an annoying scope up my nose -and it was all just normal inflammation that happens. All that to say, don't panic whatever your results are!
The AC+T chemo you're doing is the norm for TNBC. It cured my cancer when I did it, and so many ladies I've met here since 2009. My ports both times were a Godsend. I never had any pain from start to finish with both of them. It's a weird thing having a lil foreign object under your skin, but the ease for blood draws and for receiving meds and IVs was awesome for me. Way less painful than biopsys!
Another bit of advice: accept help when it's offered, if it will actually help you or your family. People generally want to help! They don't know what to say, they feel badly for you and feel helpless as well. Bringing you meals, driving your kids, keeping your kids to give you breaks, grocery shopping for you - it makes them feel better and makes your life easier - win/win! Leave the guilt at the door...you do have cancer after all, lol. My son loved having his friends and their parents show up to chat with him and bring food. Make sure you have thank you cards and stamps, you'll definitely need them. Know where the closest 24 hour pharmacy is just in case. Get a notebook or a spiral, jot down non-emergency questions for your doctor appointments. You see your medical oncologist everytime you go in for chemo, my question list was invaluable.
Please come back and let us know how it's going! And ask us anything. I've found someone in this community has gone thru most anything you can think of involving TNBC treatment and life as a cancer survivor. And again, it makes people feel good to help!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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TKTK View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TKTK Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2018 at 10:14pm
Thank you so much for sharing all these precious insights you've gathered through your experience.

Especially your comments around sharing with the kids really resonate with me (I have a 10 year old boy and an 8 year old girl) Because I don't know what to expect (since I hear that everybody's body reacts differently), I just don't know what it is that I need to prepare them for... 

You've just inspired me with another research topic to start searching through... This is typically how my days have been... A few days ago, research had been focused on chemo, surgery and rads, and yesterday it was TNBC, and now I want to go start reading on how best to share with kids...

Thankful for all who went before us that have shared so generously their experiences for us to learn from.


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