Calling all TNs
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Well, we just came from Onc's office. She doesn't seem overly concerned. Thinks it's an infection. Ultrasound, mammogram and PET to follow over next two days for "peace of mind", since it's time for yearly ones anyway. We are relieved but will be more relieved when test results confirm it's nothing.
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Great update, Al! (What did dr say she should do for infection?)
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AnotherNYCG ... Antibiotics
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ALhusband - I hope the antibiotics do the trick for your wife. Good luck on the scans coming up.
I went in for another biopsy today. Because TN is unusual for ILC my oncologist wanted to retest my tumor to confirm status before I start chemo on Friday. Is this common? Have any of you had the pathology redone to confirm TNBC?
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AL, - Fingers crossed here for the antibiotics to be the answer!
Agatha, - my onc did not say anything about ILC trip neg being so rare, and I doubt that I had pathology redone.
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Al praying antibiotics help. Keep us updated on the results. Sending lots of hugs!
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Well...still awaiting results on ultrasound and PET scan. But I can say the problem appears to have completely resolved. Keeping fingers crossed for no surprises on tests.
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I had my initial biopsies done locally in my small city. When I decided I was going to go to Seattle for treatment, they requested the slides and looked at them for themselves, and took more biopsies.
Glad your wife is doing better AL.
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hello
DiV happy for all clear scan, Al please updated on the scan results praying they are clear as well. Peggy so sorry for your grandaon, can't even imagine the feeling. Mom is coming back at the end of October to get her check up done. The oncologist once again confirmed there will be no lab work, no tests or scan, only physical check up.
Knowing that mom is stage 3C it concerns me very much. I wish i can have a garantee cancer is not back. So worried for her.
My mom had biopsy done in Italy, when she came here for treatment they wanted to do another one to confirm the Triple Negative. I believe it is only a precaution from the doctors and we didnt mind. We wanted to make sure we know what we are dealing with.
Wish everyone a happy Thanksgiving and fun Holloween
Love to all
Cristina
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Speaking of re-doing biopsies.... I got the results of the new one that was done at Sloan Kettering where I'm being treated. I'm still triple negative but it's ductal, not lobular. It won't change the treatment plan, but there's a better chance that the chemo will be effective on IDC than it would have been with ILC. I was really hoping that the new biopsy would find hormone receptors, but I'll happily settle for improved chemo efficacy.
Hope everyone is well!
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Peggy, I am late to post but have been away from home and hadn't read posts. I cannot even begin to imagine how you must feel to have your grandson fighting this battle. My prayers are with you and Jack.
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Figured I would pop in and say hi to everyone🙂Haven't been on here in a long while I was diagnosed with TN breast cancer when I was 25I am now 30 and still doing well would like to thank everyone for all their inspiration when going through that though time in my life.
Thanks Everyone
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TasiaB - so happy for you!! And thanks for sharing - it really does mean a lot to us to hear such great news
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Yes, TasiaB. Thank you so much for giving us encouragement. It really does mean a lot to hear from people who are years out.
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TasiaB...thank you so much for posting. It's great to hear when someone is years out from a TN diagnosis. We all want to post the same. Keep going strong and healthy.
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How do you determine your years out from diagnosis? From diagnosis - date of surgery - end of treatment?
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Peggysull - I am currently in India and have just read you ur post about Jack - so very sorry to hear about this. I will most definitely pray for him and your whole family. Sending warm healing thoughts to you!
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Cathytoo - most things I've read seem to agree upon date of diagnosis as the place to start the clock
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Cathytoo- I have heard from at least one reputable source that the clock starts at end of treatment- i.e. two years from end of treatment date puts us TNBC patients into less risk of recurrence category. But, my MO says 3 years from diagnosis date is the first goal and then another 2 years after that to put us into essentially, "little to no risk of recurrence".
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Batesburg...counting from end of treatment makes the most sense to me. But, opinions are mixed. i was diagnosed October 14, 2015 which makes it two years for me. But, my treatment ended July 21, 2016. No matter how we count...does that black cloud over our heads ever get brighter? My MO NEVER will talk about time periods or statistics!
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Cathytoo, I don't think the cloud leaves for years. My first dx was over 25 years ago. I remember feeling better about 3 years out. As it had hormone receptors, it could have recurred at any time. This time as a TN, I felt hopeless at first. Now approaching 2 years from dx, I'm feeling better. My surgeon said 2 years then 3 is a milestone. He said after that, 5 i have the same risk as the general population
. I now truly understand my friends that are TN, who are 7 and 9 years out. Day by day. We lost our other friend in the TN circle. She was 8 years from her dx, and had a brain aneurysm. She was dead in an hour. Her family is reeling, after years of being worried about her TN returning (she was a stage 3b) she had this totally unrelated aneurysm.
Additionally, i've had coworkers, acquantances who had hormone receptor tumors recur. I've yet to have a TN friend or acquaintance after all these years recur. Interesting eh? who really knows with this disease.
She has given me a gift with her death. To continually enjoying each day. Not just say it, but do it.
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Cathytoo and Valstim....you are both making so much sense!
Live each day at the fullest possible. Easier said than done, but, I am a work in progress.
To be honest, the biggest roadblock for me is that I did NOT get a pCR with neoadjuvant chemo. My MO says it is NOT a death sentence to have not achieved a pCR......I just need more examples of long term survivors who didn't get a pCR! My mind dances with that fact all the time....especially at 3am. My MO says I had enough chemo to kill any of those stray cells that were brewing from afar......
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Does anyone want to meet me at the Johns Hopkins survivorship retreat on Nov. 4 and 5? It is near Baltimore.
Here's the info:
http://www.hopkinsmedicine.org/breast_center/news_events/retreats/retreat_fall_survivors.html
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Valstim52...I have always related to your posts here. I am not consumed with fear (as I had imagined I would be) but I am consumed with making the most of the time I have here on earth. TN (or any cancer) is a wake up call. With breast cancer, if you're lucky, you have healthy years to live your life better than you did before. AND...hopefully we will never have to deal with a recurrence. But, as with your friend, we are not here forever.
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Batesburg...fortunately or not, I have not had to think about a pCR. I'm not sure I was handled properly by my breast surgeon. She didn't ever focus on the fact that I was TN. In fact, she never told me‼️ After doing a core biopsy she just scheduled surgery. If I had been told I was TN, I might have sought a second opinion. In my case...tumor out, chemo after and then radiation. I believe that we each have our own area of worry. I chose NOT to do ACT. Opted for six infusions of TC. Right or wrong? Who knows? Sometimes I think it's all out of our hands. Last week I attended a talk given by a well known breast surgeon here in Philadelphia. She was quite honest and candid during the Q & A period. Most of her answers were "We just don't know!" After all the studies and statistics, that's probably the case when it comes to breast cancer...TN especially. But, as you wrote...as long as we are here...make the most of every day. Good advice for everyone
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I had surgery first, two months after my initial diagnosis. Theoretically, they cut out all of the cancer, so maybe that’s why my MO says that the clock starts at the first surgery. At least for me. I did have a re-excision.
My sister in law’s sister just got diagnosed stage 3 BC. My SIL is out of the country, so she is relying on me to fill in the gaps in information for her. It is bringing back a lot of memories for me, but if it helps then I will do it.
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Official results came back from Wifey's PET scan and ultrasound. NO ABNORMALITIES FOUND. God is great! Thanks for the kind words and support ladies!
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hi peggy, prayers are strength for jack!
Good news ALHusband!
Just wondering, any TNs who did neo adjuvant Chemo with Epirubicin and Cyclophosphamide where doses were given every 21 days? How did the tumor react to it? Thank you guys. I understand that every person responds differently but i just want to know what is was like for others.
doing neo adjuvant is taxing on the mind. i can see and feel the tumor there. been finding distractions where i can (tv, books, movies, etc) my MO is observing tumor's response and might switch to weekly taxol and carboplatin before i even complete my EC doses (i've finished 2 doses out of 4) because of a red patch on my skin that should have disappeared after first dose but didn't. And also this small hard area around part of the tumorthat showed up after the first dose. so MO is also monitoring those until next week before making that final decision of switching medications. my MO said itMs not expected but in some cases cancer cells can grow during chemo. scares me more than anything.
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Hello ladies. Just checking in after being absent from the boards while I recovered from my hysterectomy for uterine cancer. I feel like I have missed so much. Welcome to the newbies and to those going thru treatment gentle hugs.
As for me I will be starting chemo again for stage 3 uterine cancer on 10/20. It’s hard to believe that I have to do treatment again after finishing for tn last March. I get re-ported thurs and will be doing carbo and taxol every 3 weeks for 6 cycles. Then scans to check if I need pelvic radiation after.
I am also moving and downsizing from my house to an apartment on the 25th. The development I am moving to is brand new and just opened to renters in May. I am hoping that a new clean environment helps with my health and is less stress than taking care of an old house.
I am so not looking forward to losing my hair again. I kept it short and I don’t know what to do about getting a wig again or just using hats like I did previously. Anyone who had a reoccurrence or secondary cancer do different that they did the first time and have any advice for me? I hat a wig last time that was my old hair(shoulder length and blonde) and hated it. I just felt fake. But now I am reconsidering possibly getting a short wavy, wig that looks like my hair now. I will be in treatment until 2/2 for chemo.
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Hi, mkn86. I'm doing neoadj AC right now, then the plan is that I will move on to Taxol/Carbo before surgery.
I totally get what you mean about doing chemo while knowing the tumor is still there. Sometimes I just want it cut out of my body now - be gone! But then I remind myself that monitoring the tumor is a way for my oncologist to know if the chemo is working on my particular cancer cells. The possible far-flung TNBC cells that scare me more than my actual tumor. Also, my oncologist told me if she doesn't feel the tumor responding to neoadj chemo, then they stop and do surgery. I am trying very hard to learn patience.
Hang in there. We're all with you.
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