Calling all TNs
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has anyone heard from Ally? I feel like it's been forever since she posted.
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Welcome Nicole! I just had Taxol #9 yesterday, so 3 more to go. I haven’t had surgery yet but I started with an 8cm tumor so my team feels that mastectomy is my only option. I think many people on here have had lumpectomies with TNBC. Good luck moving along in your journey!
Also welcome, Kmajor. I’m just a couple weeks ahead of you, too. I seem to be having lots of ups & downs lately. I’m usually pretty even keeled so it’s caught us off guard but i think it’s just the way dealing with something like bc is. I hope things keep going pretty smoothly!
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HI, everyone. Tomorrow is AC#3 for me, then on to 4 x Taxol. It won't be for couple of months, but I need to start making decisions on my surgery. I could really use your input. I have a pretty large tumor of mixed IDC/ILC. The genetic testing came back negative for any of the known "risk" mutations.
How did your TNBC status effect your decision about surgery?
Did you feel like you needed to do a BMX?
Did TNBC effect your decision about reconstruction in any way?
Thanks so much. I really appreciate this board so much. Thanks for your sharing and honesty.
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- Hi Agatha when I was diagnosed my first wish was to go for BMX as I thought that would reduce recurrence risk but my breast surgeon recommended lumpectomy (with a reduction and lift on the other side). She told me that the risk of recurrence is not necessarily reduced by having BMX and in fact there are some studies which indicated that recurrence risk is actually increased after BMX for some specific groups of people (I don't remember what the details were but think age might be one of the factors). She emphasised that the sample sizes are small in these studies and that there was no strong evidence one way or the other which would be relevant to my particular surgery. So I recommend talking to your surgeon oncologist and anyone else with expert knowledge when you are making your decision as the assumption that BMX reduces your risk may not necessarily be correct in all cases. NB My genetic testing was negative for all the known markers which may also have an impact. Also please note I don't have any expert knowledge, I'm just sharing what I was told about my own situation. Good luck with your treatment and decision on surgery. Also I recommend looking at before and after photos when you are thinking about this and deciding. XX
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thanks everyone!
I’m also so comforted by how may others have gone through this and the strength they have.
I met with my oncologist yesterday and I will be starting AC x 4 in 2 weeks time followed by taxol x 12. Just a few more tests to get down first e.g MRI to make sure I don’t have any other deposits anywhere, as I have very dense breasts and they believe my tumour grew only within a couple of months. Gene testing and then lastly to have my port put in.
Busy few weeks ahead then a long but hopefully quick 6 months. Once all my genetic testing comes back I will then find out if they recommend mastectomy or radiation.
Xx
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Good luck AgathaNYC! I haven't had surgery yet but my surgery consult is in about a week and a half. I started with an 8 cm tumor, so immediately my BS said lumpectomy was off the table. I then needed a biopsy & MRI on my other breast and even though the biopsy was negative there were some slightly concerning findings on the MRI. If I didn't have cancer, I would just watch them but since I had a clear mammogram 6 months before my very large tumor showed up, I'm hesitant to watch and wait on anything. Also my sister had BC 3 years ago so I feel there is something in our genes, even tho genetic testing didn't turn up anything. Those are my most compelling reasons for wanting a bmx. Of course, the TN diagnosis scares me too! Pretty much from day one, I've been ready to say good bye to both breasts. I'm leaning towards reconstruction, but our thoughts are still be sorted on that part of the plan. I hope you come up with a plan that you feel good about.
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Thanks, Flynn and ScottBird. I appreciate your sharing your stories.
I got some good news today. My MO told me that my tumor is responding to the chemo well and has shrunk by more than half. I truly hope that means any far-flung TN cancer cells traveling through my body are dying, too. She said if there was this much shrinking after 2 AC's it should get much, much smaller by the time the other AC's and Taxol is done.
My tumor seemed to be over 7cm when I started. Like Flynn, at my first surgery consult the BS told me a lumpectomy was off the table. I'm assuming there is a lot of dead cancer cell stuff in there that will have to come out so I still need a mastectomy. I don't see her again until Dec.1 when I go in for my first Taxol (I had an appt today that was cancelled.) We'll have a lot to talk about.
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Good morning---I sometimes find myself worrying about if my cancer is spreading even though I'm doing chemo now. I hate worrying. What scans and test did you all have prior to starting chemo? Y'all have a great day
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Hi, kmajor - I think it's pretty normal to worry about that. Every twinge or new little freckle or mole gives my a jolt of anxiety now.
Before I started chemo I had diagnostic mammogram, diagnostic ultrasound // cancer diagnosed after core biopsy// full blood panel for tumor markers, MRI, PET scan, genetic testing, a second diagnostic mammogram, second ultrasound, second core biopsy. Wow, sounds like a lot once I write it all down.
Have you already had surgery or are you doing the chemo pre-surgery? One good thing about doing chemo first is that you can feel if the tumor is shrinking, signaling that the chemo is doing its job.
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HI Kmajor. I had the usual mammogram, ultrasound & biopsy to diagnose then a chest CT & bone scan before treatment. I have had several MRI’s because my first treatment was a drug trial which was closely monitored. I also had one after AC and will get one shortly as I near the end of taxol. It has been comforting to keep tabs on my tumor. Like AgathaNYC, I’ve felt my tumor shrinking since I’m doing neoadjuvant. I would talk to your MO about your fears and get his/her perspective. I have found my MO to be very reassuring.
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Nicole, my wife is BRCA2. If you get tested, and are positive for BRCA1 or 2, basically the mastectomy decision is made. Although I'm not a doctor, I'm pretty sure they recommend mastectomy for BRCA positive patients.
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Flynn, my mammogram didn’t show my tumor, even though you could see the skin puckering, I had pain, and you could feel the lump. I had two areas to be excised, so originally my Surgeon said she wouldn’t be able to do a lumpectomy, but she knew I had my heart set on that. After MRI and more biopsies, she said she could make a lumpectomy work. I did need a re-excision, but that was no big deal.
I’m still dealing with lymphedema of the Breast, but glad I didn’t have to deal with reconstruction.
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LoveMyVisla, that's really interesting. When I started treatment there was a big variance between the size of my tumor as measured by u/s and MRI. It seems like our medical technology is so advanced but then sometimes i realize that it's not as exact as I think. It's kind of disconcerting. Appointments with BS & PS over the next two weeks will prove to be very interesting. My MIL has had bc twice and she struggles with lymphedema, it can be very challenging. I hope that works out
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hi my name is jennifer , I'm 43. I had a follow up ultrasound down in April which came back clear then October 13 had my yearly mammogram and they found I had cancer , this Friday November 10 I will have lumpectomy, then chemo then radiation
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Hi, Jennifer. I'm sorry you are going through this but I'm glad you've joined the thread. I got my diagnosis of TN on 9/15. I'm doing chemo first. then surgery (my lump is pretty big.)
All the best for your lumpectomy on Friday. We'll be with you in spirit!
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hi jennifer, welcome to the TN thread!
I was diagnosed last Aug 11 and currently going through neo adjuvant chemo, like Agatha.
you've come across really supportive people in this forum. We are in this together.
-Kat
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Hi Jennifer,
Welcome to the thread. Please feel free to ask us questions. We are happy to support you were we can.
))Hugs
G
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Welcome, Jennifer. Good luck with your surgery tomorrow. I hope it goes smoothly and that you have a speedy recovery.
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Hi Everyone....I haven't posted in a while. Have some good news and a question. First, just wanted to tell you all that I've just celebrated my second cancerversary. Feeling good and not thinking of breast cancer every minute of the day. My question concerns chemo before or after surgery. Mine was after. My breast surgeon DID NOT refer me to an oncologist until after she did a lumpectomy. Last night I heard a very different story from one of my neighbors. Her surgeon immediately referred her to a surgeon after a biopsy confirmed that she was TN. After the protocol of ACT, her tumor shrunk to nothing. Surgery was then done to "clean out" anything left. So, here I am thinking that I might not have received the best protocol. Would be interested in hearing about your treatment. Chemo before or after. HAPPY THANKSGIVING TO ALL‼️
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I have fallen behind on reading and posting, but want to welcome all the newbies and say hello to everyone!
Cathy, - Congrats on your anniversary! I, too, had biopsy and bmx before chemo. Like you, I wonder why chemo was not given first. My chemo was delayed due to an infection after surgery, which makes me think that it would have been wiser to do chemo first! I dont recall if the TN was determined at time of biopsy or after bmx. Oh well, - we have to hope the drs made the right choice and move on!
Any news from Ali re the baby? Cocker? others?
STAY WELL everyone!!
Hugs from NYC!
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More hugs from NYC ;-)
I saw a breast surgeon and oncologist on the same day a few days after I got my diagnosis from a core biopsy. I didn't know at that time it was TN; my surgeon told me at my 1st consult. She said she'd defer to the oncologist as to whether we'd do chemo or surgery first. My oncologist decided to start me with chemo, she said especially since TNBC responds well to chemo in her experience. (But first I did the battery of MRI, PET, 2nd biopsy, and genetic testing.)
My tumor was large, over 7cm. That was definitely a factor in the decision to go neoadj. However, the oncologist explained that the best way to see if a chemo regimen was working on my particular cancer was to do it while the tumor was still in and could be monitored. If it didn't shrink she'd either switch up the drugs or send me to the surgeon to get it out.
I was getting obsessively scared of all the cancer cells that may be swimming around my body, having traveled away from my tumor. I liked the idea of killing them early with a way to measure chemo's effectiveness. After 2 sessions of AC the tumor shrank by more than half. Oncologist is encouraged. I'm about to go for AC #4 today and I can feel it's smaller still.
I will be seeing my surgeon on Dec. 1st. I don't know if I have more surgical options now that my tumor is smaller. I want to get everything out, but hope I can have a lumpectomy instead of the full mastectomy that was my only option at time of diagnosis. I have to wait to see what she says.
Every case is different but I am comfortable with my choice to do chemo before surgery. There are some women who don't like keeping their tumor inside them for months. I don't think there's one right answer for every situation.
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Cathytoo, based on my core needle biopsy, I was originally diagnosed as HER2+ and neo-adjuvant chemotherapy was recommended. I'd just dealt with six months of agonizing pain from an inflamed sacroiliac joint and herniated disc that the doctors and I all thought was a problem with my hip replacement. I simply wasn't in a place that I could face six months of TCHP, then surgery, then six more months of Herceptin so I went against medical advice and proceeded to surgery. The solid tumor pathology showed me to be triple negative.
Had I done neoadjuvant, I would have known whether the tumor shrunk, but I would have been exposed to the risks of two drugs that may have provided no benefit. (I'll always wonder if the solid tumor pathology really was the most representative slice.) I had a Foundation One genomic study that showed I have genetic alterations consistent with secondary tumors and resistance to chemotherapy and radiotherapy so I often second guess what I should have done differently. We typically pursue chemotherapy because it improves our odds of survival; however, I seem to come down on the wrong side of statistics every time so sometimes wish I'd just had a bilateral mastectomy and moved on with my life. Ironically, one reason I chose lumpectomy was due to fears about tissue expander infections yet I ended up with an infection from draining a seroma that required two weeks of daily IV antibiotics.
I'm surprised you weren't offered neoadjuvant treatment, but the "woulda, coulda, shoulda" stuff can make us crazy. I'm trying to focus on having survived thus far, but the physical, emotional and financial toll sucks.
Lyn
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Congrats Cathy on 2 years and great to hear that you are moving on from thinking about cancer. I had neoadjuvant chemo and like Agatha I think it was because the tumour was big that this was recommended. I’ve no idea how these things are decided but what’s in the past can stay there as far as I’m concerned, we can only look forward. Don’t worry about what ifs, just live life.
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Congrats Cathy! My TN tumor was found by accident during my lumpectomy hiding behind another tumor, so my chemo was after. I developed an infection that delayed chemo and my head was spinning, especially when I started reading about others receiving chemo first. However, I am at a top notch cancer center and was told by MO and BS that even if they had known the TN tumor was there, they would have proceeded the same way in my case. I met another woman whose tumo was your size and she also received chemo after surgery.
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Hi CathyToo! congratulations on your second year!
that's great news.neo adjuvant was recommended to me because of the tumor size (it was 5cm at first checkup and likely grew before i started with my first dose). doctors wanted to shrink the tumor first before any surgery. completed 3 of 4 doses of EC but my MO and i thought there was barely any shrinkage until the US that showed there was fluid in my breast (complex cyst). MO decided to monitor the fluid instead of aspirating it and also switched my meds. currently on dose 2 of 12 of weekly Taxol + Carbo and my MO is happy with the progress. me, i just keep my fingers crossed until i complete my chemo and see what my options are once surgery is discussed
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Congrats Cathy. We are basically on the same timeline as far as diagnosis. My TN status was determined from my initial biopsies. Had additional biopsies, then surgery before chemo and rads.
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does everyone get pet scans??? And when ?? Like ok my path report from lumpectomy came back no lymph nodes showed any cancer. BUT my BSremoved only 2. Sooooo how do I know my cancer didn't spread somewhere else? I need to know that for sure it is not anywhere else😑. I meet my mo on dec 19 and I'm sure I'll be starting chemo the very next week or 2after??? Should I try and see her sooner ugh I just don't want to find cancer again anywhere
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hi Cathy. Congrats on 2 years! As for me I had my biopsy first which revealed tn. I saw a breast surgeon and another for a second opinion who said genetic testing first then that would determine what type of surgery. My tumor was small under 1cm and most removed by the original biopsy. I think had it been larger I would have had chemo first.
Hope everyone has a good week and happy thanksgiving.
As for me I just had my second taxol/carbo for my uterine cancer. I buzzed my head 2 weeks ago and I think my hair is growing again. I am working this second time around going thru chemo again and am ok so far. I only took off for my surgery in sept.
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It's wonderful to see that seven year figure, Teka. Thanks for sharing the good news. I hope that Cathytoo and all of us here can share similar good news in the future!
Motherofall6, the two nodes your surgeon removed were specifically selected as those where cancer would likely land. Removing a large number of nodes increases the chances you would develop serious lymphedema and isn't typically done unless something worrisome showed up during your initial ultrasound. My MO did a CT scan of my chest and abdomen before I started chemo. Some doctors instead do a PET scan as their baseline.
Once treatment is completed, my doctor said they don't order scans if there aren't any symptoms since statistics suggest those routine scans don't improve survivability. I hope that your chemo treatment goes smoothly!
Lyn
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Shopgal, it stinks that you're facing cancer again.
I'm glad that chemo is going alright so far and hope that continues to be true. Lyn
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