Calling all TNs
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Debra...CONGRATULATIONS‼️‼️👍👍❤️❤️
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Aterry, the video about revised staging was interesting although, like many with TNBC, I'll likely end up as a worse stage than under the 7th edition. Has anyone found a chart where one can calculate the revised stage as has been available under the old TNM format? I understand the genomic aspect isn't applicable to us with hormone receptor negative status; however, I couldn't figure out specifically how the receptor status and tumor grade affect the final staging figure. I started wading through some online research, but became discouraged by sites requiring log-ins or subscriptions or only providing abstracts that don't allow me to "plug in" my specifics. Thanks!
Lyn
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Congratulations Debra!!!!! So happy for you. Thank you for checking in to celebrate this with us. Xoxo
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https://cancerstaging.org/CSE/Physician/Documents/AJCC_PPT -Breast Webinar 11-8-17.pdfJust go to the 30 page presentation, no need to enter email address. The charts to calculate stage are at the end of the presentation. I can't remember how I got to the entire chapter-ugh-but I know it was frustrating. The Breast Chapter is 97 pages.
Yup, it changed me from 1A to 1B, I'll confirm with my docs at my next appt. TN is to blame. It doesn't really change anything, just a number. Being here is what matters! I'm sorry I don't have the exact site, just know I had to read 90+ pages before I got to this chart, above. Seems most Stage 1As drop to 1B if you're TN. I'm not sure about the other stages, but we all knew from dx that TN has a bad rep. It bummed me out for a day or two, then I decided to flip it the bird
Hugs to All
Arlene.
https
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YAY, DEBRA!!!
My docs tell me my 3 years is a good drop in recurrence/mets and 5 years is great, so 6 years is AWESOME! Congrats!!
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Dear BC Sisters,
Happy to report my 4th year cancerversary from DX! Yay!! So grateful for good health, good doctors, good family & friends.
Be well all of you, and don't stress too much about food. As long as you eat a fairly healthy diet (less meat, lots of fruits & veggies), a little sugar is good for the soul. I myself would not consider it a full day unless I ended it with some vanilla or chocolate Breyers hormone free whole fat ice cream-:)!
Studies have actually proven that exercise is definitely a bc preventative against initial DX or recurrence. Ladies, embrace the gym or the treadmill in your basement, or go for a walk. It was a lifeline for me before DX, during every day of treatment, and every day since.
XOXOX
Paula
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Greenae Arlene, thanks for the link to the pdf of the new staging charts. Also THANKS for the notion of flipping TNBC the bird. I'm trying to walk the narrow path between becoming as informed as possible about TNBC and calmly accepting it's my situation and not comparing it to others'.
MomMom - Happy 4th Anniversary! You must be so happy.
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YAYYYY Debra and MomMom ! That's terrific!
Looking forward to reading more posts like yours!!
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Hi All,I'm sorry to just jump in. I'm new to this thread and trying not to freak out but has anyone w TN have breast recon and right after notice tiny bumps near incision sites? I don't want to think its reoccurrence but can't call Dr til Monday. My exchange was Oct 27. I did have couple of tiny bumps that went away (dissolvable stitches?)thank you for any comments.
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I had to laugh at flipping the bird to the new staging too. If I’m reading it correctly, it’s not good news for me.
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Hi all,
As I start this post I'm not sure if have any specifics questions or that there is any particular information that I specifically hope to gain by posting... I think I really just feel the need to share my current situation with those that will understand better than almost anyone else.
I am 32 years old and found out that I have breast cancer on Jan 2nd and the next day, during an appointment with an oncologist, I found out that it is triple negative. I am waiting to get a PET scan done so that they can see if there are traces anywhere else... I'm guessing that after those results are reviewed that they'll be able to say what stage I'm at? There is some family history on my mom's side of the family for breast cancer and that combined with my age and the triple negative lead the oncologist to get a gene test done for me.
The ultrasound that I had done put the size of the lump at a little over 2cm x 5cm. A second review of the scans showed an enlarged lymph node that I will have biopsied on Tuesday. On Monday I have an appointment with a [general] surgeon to see if he thinks that the lump can be removed first or if chemo should be first to shrink it. After a little research I'm also thinking that I should travel a bit out of town so that I can see a surgeon that specializes in breast surgery...
Generally speaking, I think that I'm doing pretty alright with the diagnosis so far. At this point I think I'm just anxiously impatient to get more specific information on the breast cancer that I have so that the path forward will become more clear.
Well, I think that's all of the rambling that I've got in me for tonight...
Thanks!
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Hi Meow,
I have weird looking bumps along my incision line that both my MO and my SO say it is simply the way my skin "healed" - they said there is a distinct way the skin looks when it is cancerous....and mine did not look like that. Additionally, one of my NPs said that the changes are SO LOW for it to be CA that all combined- nothing to worry about. My thoughts are its simply the way your skin is healing from the onslaught of tugging, pulling, suturing, etc.
I know its hard not to worry and I was worried, too, but it is most likely scar tissue "righting" itself. I was told to put Vit E on my scar and moisturize to help it settle down.
Janet
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Cort, we’ve all been where you are unfortunately. You have breast cancer, which is a blow and then you find out it’s TN and you feel extra cursed. You can get real low really fast.
I agree that it might be a good idea to seek out a surgeon who is a breast specialist. Remember that this is a marathon and you will be in treatment for awhile- you want to have the best team supporting you and a team you trust.
Good luck - you seem to have a good mindset going forward.
Keep us pisted
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Cort, I agree. Get the best doctors that you can. I live in a small city, and while the oncologist here consults with the big city doctors, I knew that some things he told me were incorrect. So I drove to the big city for my treatments. No regrets. Even for daily radiation. Best wishes for you.
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Cort,
I am sorry you have to be here, and you’re in the midst of the scariest part. Once your plan is in place you will feel better. Ditto LMV and VL22. Please go to Breast specialists and a Cancer Center. I wouldn’t even see the general surgeon my gyn referred me to see. Your Team will make All the difference in the world. I, too, traveled into the city to receive the best care and team. And I still thank them every time I see them. We are all here for you. This site is so supportive. Come here with any thoughts and questions. Hugs for you. It will be a tough year ahead, but we are here for you.
Hugs
Arlene.
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VLH, I'd also like to see a chart. I'll be at my treatment center tomorrow for a mammogram and I'll ask. I also suspect that my staging will be worse under 8 than 7. I don't think that would have affected my treatment plan though.
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Thanks for posting the chart, Arlene. I'm still wading through the material.
I agree that going to breast specialists at a major cancer center is very important. Cort and others, please take long breaths and take the time to get second opinions (and a third if you need to). I switched surgeons after getting information from the Dubin Breast Center in NYC that contradicted what the first surgeon told me.
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WHAT CHART??? CAN’T FIND IT. PLEASE POST AGAIN.
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Cathytoo
See below for the link. Scroll through the slides and you will find the charts. You need to know your TNM, then read across to find your stage, after including TN status. I changed from 1A to 1B on both the clinical staging and the pathological staging.Thus the bird flip from me to the new staging.
https://cancerstaging.org/CSE/Physician/Documents/AJCC_PPT%20-Breast%20Webinar%2011-8-17.pdf
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New to this section:
Diagnosed 12/22: IDC, High Grade, 1.3 cm, right breast.
So far auxiliary nodes appear clear on MRI. 2nd spot in same breast getting core biopsy tomorrow. Awaiting Genetics testing results. Met with surgeon and Oncologist on 1/4. Confirmed 1/4 that I am Triple Negative so must have chemo. Currently, option still stands to get a Lumpectomy and chemo and Radiation.
Oncologist Advised could do Neoadjuvant chemo with A, C & T drugs. Advantage to pre-op is that we can tell if chemo shrunk tumor and is working. Disadvantage is the A drug comes with additional health risks to the heart and possible additional cancer of leukemia. If lymph nodes are still clear at time of surgery, would not have needed the A drug. If do chemo after surgery, then for sure C & T and only A if in lymph.
For those who have been treated or in midst.....what are the treatment options you had/chose with TNBC? Pre surgery, post? A drug? Other options? I'm feeling very overwhelmed with trying to figure out the right path to take.
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Hi Jsan11 - sorry you’re here. I had surgery followed by AC+T, to be followed by radiation. I didn’t have a choice of order because my TN tumor was found during my lumpectomy for an ER+tumor . However, the cancer center I’m at seems to do adjuvant chemo with small TN tumors. Also, it also does AC+ T regardless of if chemo is before or after surgery, even if node negative.
Hang in there - it does get easier and we’re here for you
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VL22 - THank you for the reply. I noticed that your ER/PR changed from May to June. Did they re-test the Hormone receptors when they removed the tumor and it was different?
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Thanks, Arlene. My staging only declined from IIA to IIB so not as bad as I thought.
Lyn
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I assume with staging, it's the pathological that really matters. And that isn't done until surgery.
My US/MRI showed tumor 2.6 (US) and 3.1 (MRI) cm and mildly prominent nodes. But AC shrunk the tumor under 1 cm on US re-check. Don't know yet what Taxol is doing. And really don't know nodes yet until node dissection during surgery.
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Jsan11 - I was diagnosed with multi focal - two small ER+HER2- tumors in right breast. During lumpectomy, a third 1 cm tumor was found “hiding" behind one of the other tumors. This was the bad guy TN tumor
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Thanks Greenae- my stage stayed at 1b. Myhusband was perplexed as to why I would even look at, but you ladies get the need for all information. I agree with him, that it can be “unhealthy “ but it is what it is.
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I was diagnosed on Sept. 7th, so similar timeline as you. Stage 2A. I began chemo on Sept. 28 and finished AC & T last week. I am waiting for surgery now and it's January 29th. I didn't have any other scans since diagnosis. They can't feel anything anymore, so maybe that is why? I am being treated at Mass General Hospital in Boston, so I do believe in my doctors, but find that I second guess everything and give myself about 50 breast exams a day. My mind is getting the best of me. I just pray that my tumor is totally dead and no tiny cells are still alive. They do believe my lymph nodes are clear and I had multiple MRIS, CT scans, bone scans and ultrasounds, so praying they are still clear. This is hard. I'm finding it hard to focus day by day. I'm anxious for surgery....
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Jennifer522...I was diagnosed on Sept. 7th, so similar timeline as you. Stage 2A. I began chemo on Sept. 28 and finished AC & T last week. I am waiting for surgery now and it's January 29th. I didn't have any other scans since diagnosis. They can't feel anything anymore, so maybe that is why? I am being treated at Mass General Hospital in Boston, so I do believe in my doctors, but find that I second guess everything and give myself about 50 breast exams a day. My mind is getting the best of me. I just pray that my tumor is totally dead and no tiny cells are still alive. They do believe my lymph nodes are clear and I had multiple MRIS, CT scans, bone scans and ultrasounds, so praying they are still clear. This is hard. I'm finding it hard to focus day by day. I'm anxious for surgery....
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Paula, congratulations!! So happy for you!
Cort, welcome to the thread, tho sorry that you have to deal with this. Sounds like you’ve gotten good advice from other members already. Please keep up posted!
Jsan11, also welcome to you. My tumor was larger than yours and my lymph nodes were clear. I did neoadjuvant chemo. I actually did an investigative trial first, then AC, then Taxol & Carboplatin. We went with standard care plus additional treatment because I had a really big tumor. I just wanted to be as aggressive as possible and my MO felt that I was healthy enough to withstand a tough protocol. Hopefully your medical team can help you decipher the best path for you. Please let us know what you decide!
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I had my first mammo and ultra sound after completion of all treatment. (Radiation concluded in early July.) I got good results. There was no evidence of a recurrence so I'm relieved about that. The radiologist said my next imaging would be in 12 months. Is that imaging cycle what others have experienced? I'd thought they might do imaging every 6 months for the first 18 months post treatment since I've read that is the time period when recurrence is most likely.
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