Calling all TNs
Comments
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Hi Santabarian. I am at Columbia Presbyterian for my rads also in Nyc. Had my simulation waiting for callback with start date. I just want this over with.
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Amen, sister.
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Kber, my oncologist orders the CA 27-29 test at each of my follow-up visits. It's not a definitive test on its own and an elevated level would probably trigger another test later to see if the higher number was a fluke. A second elevated reading might warrant additional testing.
LuvMyDobes, thanks for checking in with encouraging news.
Lyn
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My CA antigen tests were never elevated, so it isn’t a definitive means of testing.
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Yes, me too... both of mine were quite low, even with a honking grade 3 tumor and a honking lymph node.
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Wow, i just got my blood testing info and they want me to do CEA and CA.. i dont understand why look for markers after chemo/surgery/ rads?? Is this normal?
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I think some MOs do this for monitoring purposes, even though the accuracy leaves a lot to be desired. My MO told me he uses them for monitoring but does not put a huge amount of stock in them... though for some patients they can be helpful.
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urdrago71, my oncologist performs the CA test at each visit, but made it clear that the test is NOT definitive. A single elevated result may well be a fluke, but she noted that two in a row after a history of low numbers might warrant further testing.
On a related note, if my exam and lab results look good next month, I get "promoted" from oncology visits every four months to every six months.
Lyn
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VLH, well Im praying u get a break between doc. appt. I wish I cld as well.
Santabar, i hadnt had any monitoring before so I will let them do whatever with more testing.. til I get sick of it!!😉
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LoveMyVizsla, Valstim52, AnotherNYCGirl....
Hey Guys....good to see you on the site and good NOT to see you often on here. I’m a little past three years since surgery ( that’s how my MO counts). I have no lingering side effects from chemo or radiation. We’re all traveling along the same time period, and it’s SO GREAT that we’re still doing well. Wishing you (and all our BC sisters) exactly what I wish for myself....many more healthy years living a full life. Keep in touch through PM, if you would like. Would love to hear from you. ❤️❤️
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Rebeka, May I ask why you had a TE and then later DIEP? Is that usual for the DIEP? Also, did your PS discourage TE and implant since you had radiation? I'm thinking to have breast reduction on non cancerous breast and leaving mastectomy side flat. So confusing. Thanks for any insight
Sorry, I see now calling all TN
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Great news on escaping long-term side effects from treatment, Cathytoo!
Lyn
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My MO’s have never ordered CA tests for me.
Cathytoo, congrats on being 3 years out and great news on no long term side effects!
VLH, good luck at your appt- I hope you get bumped out to every 6 months.
I think it’s been discussed before but I find it so puzzling that so much is made of risk of recurrence within 3 or 5 years and yet there’s so little consistency in how to measure those years. It seems so unscientific to me! Things like staging have become so precise.0 -
Hi,
I hope all here are having a good day (week, month, year, etc!)
Val, - I wish you relief from your arthritis!
Cathy, - thank you for thinking of me. I am so happy to read that you are happy and traveling and enjoying life!
To those in treatment, - I wish you an easy and speedy time of it!
I'm catching up on posts and although I try to remember who I want to say what to, my chemo brain (or maybe just being in my 60's?) doesnt help me keep track! ugh (In my 60's is still hard for me to believe! yikes!)
BE WELL my friends!
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Sharing as it looks like a new approach for TN's.
Edited to add this one too.
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thank you for posting!
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My pleasure! It's good to see that studies are being done on triple negative cancers. Hopefully something fruitful comes from it.
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HI, I'm new to the forum and have been diagnosed with TNBC. I'very done 4 rounds of epirubicin/cyclophosphamid and 5 rounds out of 12 of paclitaxel. I've noticed that the tumor seems to grow, soften, and then get smaller. Has anyone else experienced this?
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Hi everyone. I’m new to the forum and this is my first post! I have a question about AC+ T chemo vs TC chemo. I’m 49 years old and was diagnosed about a month ago with IDC - 7mm Triple negative tumor. Two weeks ago had a Lumpectomy with clean margins and 4 nodes biopsied were negative for cancer. I’m being given the choice of AC+ T or TC chemo followed with radiation. Trying to weigh all the pros and cons. Anyone else been in this position
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Hi Kat1479!
Sorry you have to come here, but this is definitely a place to ask questions and get good information.
My diagnosis and treatment so far have been almost identical to yours, and I'm only three years older than you are. I was initially diagnosed with IDC in mid-November after mammogram, ultrasound and biopsy, had a lumpectomy 12/10 which removed a 8mm triple negative tumor, clean margins, 0/7 lymph node involvement. Without too much in the way of research on the subject, I have merely followed my medical oncologist's (MO) recommendation of four rounds of TC (taxotere and cytoxan), three weeks apart, followed by radiation. I have my third chemo treatment tomorrow. So far I have had very minimal side effects. They've loaded me up with anti-nausea meds and other "support" drugs, both infused and in pill form. I'd be happy to go into more detail if you'd like.
As for the radiation, I have not met yet with the oncologist recommended by my MO, so in the meantime I have been researching proton therapy for breast cancer. Here in Atlanta we have a brand new proton therapy center, and it's very easy to get an appointment for a consultation. That appointment is March 7. I'll let you know what I find out if you're interested.
In the meantime, from what I read in a recent study, whatever you decide, you should make it your mission to start your chemo treatments no more than 30 days after surgery for the best chances to avoid relapse. Take a look at it here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60060...
Good luck!
Anne
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Alexndriacat, I felt a lot of activity... softening and shrinking. It's very reassuring to feel the tumor melting. Is it getting steadily smaller?
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Hi santabarbarian, it is getting smaller. After a chemo dose, it seems to get slightly bigger. Then it gets softer and then smaller and hard. So, I think this means that the chemo is working? I was wondering if any one else experienced the same thing.
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Thanks for posting the link, Notdefined. It's good to keep up with new areas of interest.
Welcome Alex & Kat. I could feel my tumor decrease and it was getting softer as time went on. My MO never brought TC up as an option so I don't have any advice on that. I seem to be reading about TC being offered more often than in past so perhaps there's new info since I started 2 years ago. Best wishes to both of you!
Anne- glad chemo is going smoothly for you, hope it keeps up!
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Kat1479, I did taxotere and Carboplatin. My MD told me it is a little bit regional in terms of who prescribes what.... that AC/T is more prescribed in the eastern US.
The way I understand it is the AC/T protocol has slightly better pCR rate, maybe 1-2% better, but also has some more serious possible side effects like heart damage and (rarely) leukemia. I had told my MD I wanted to take pains to preserve my athletic and active life... (if you get through TNBC and the window of recurrence, you are likely to live out your normal life span and in my family that's ~90! So I would need my heart!).
For a basal-like TNBC, or for BRCA+ TNBC, Carboplatin is very good. I am happy I had the Taxotere/Carboplatin because I tolerated it well. I think he SEs on AC/T are harsher.... though any kind of chemo is no picnic. Be aware that a small # of people taking taxotere can have permanent hairloss. I used a home-made kind of cold caps to give my scalp some protection and my hair has come back very well.
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Alexandria, the shrinking is a good sign! Mine went from "walnut in the shell" to "pecan" to "almond" to "lentil." It shrank to the point it could not be felt at all by chemo #4. I think it is possible to shrink, then re-grow, so my MO did not get too excited until the shrinking showed itself to be sustained. (And he did not get REALLY excited until the pCR was proved.) But at about chemo #4, when I was feeling very exhausted and anemic, he said, "Ten years from now, you'll look back on this experience and it will be a little blip." -- THAT made me happy, because he's the king of conservative-double-blind-scientific proof and does not say things like that lightly!
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HI - I had a lemon sized tumor I named "Boris the Tumor". He was big and obvious and painful. I noticed a retreat after my first A/C treatment and now, after 4 A/C treatments and 4 Taxol / Carbos (out of 12) Boris s no longer palpable during a physical exam. I haven't had any other tests (MRI or PET Scan) since I started treatment and won't know how much he really shrunk or if I achieved pCR until surgery after chemo. But I am heartened by the progress so far.
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kber, that is great news!
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Thanks. Santabarbara! It makes chemo side effects more endurable when you can also feel progress on the actual cancer. I think a positive side effect of chemo before surgery is that you may be able to see it working in real time.
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santabarbarian, your story is very encouraging! Thanks for taking the time to chat about it.
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Santabarbarian, I like the sound of your MO. My experience was almost identical to yours with the tumour disappearing quickly during chemo. I don’t check in here much these days, just once in a while. I don’t think about cancer every day any more, but it doesn’t yet feel like a small blip!
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