Calling all TNs

hello

I have been reading this blog for a while now. My Mom was diagnosed with TNBC in November 2016. She lives in Italy and I live in United States so I decided to bring her here for treatments. Long story short she had 4 round of CT (MUGA scan showed 40% so no A) than surgery one week ago. After chimo MUGA showed 67% so after surgery another 4 rounds of A. Anyone had something like this? Had A by itself after surgery?

Today we got the pathology report that showed close margins (don't know how close yet until we see the doc on Thursday) and 10 out of 24 lymph nodes involved. Will she need to have another surgery? Will she qualify for Xeloda with close margin?

I am devastated and trying to stay positive for mom. She keeps reading statistics about survival numbers and thinks she has like 33%. Everywhere I read it shows better chances. Tumor size still unknown somewhere between 3 and 5. Italian mammography showed 3 and Oncology here said around 5. What are her chances?

Thank you all for keeping a positivery attitude and giving others hope

Cristina

Thank you Trish, Mom, DiV (gentle hugs) Cathy my dear, gmmiph, Cassy, 6ftover, another my sweet friend, My pocket was full of love and support, heard some giggles in there too! My surgeon was able to close the pesky wound, plus he smoothed out some rough puckering from too much skin when the implant was removed. So I am hopeful for a good result. Hard to be optimistic when it was was failure the first time out, but hey gotta think positively, right? It is always a plus to try to do so. Thanks guys, your support gives me strength

Thank you Tulips for joining in my pocket. And thank you for the great response to Dova

Hi Cristina,

Yes, that must have been a big shock to learn more lymph nodes were affected. And it's going to feel like a long wait until Thursday. One thing I might suggest to pass the time--meditation. I'm not completely into things like that, but I found it really helpful during my most stressful times waiting for diagnosis information. If neither of you has meditation experience, there are wonderful apps that walk you through it (Headspace is one), or in the iTunes store there are guided meditations, especially ones for healing, that are so relaxing and take away a lot of stress. I really recommend that while you wait for more information.

So you have some good questions ready for Thursday. It is a good question to see if Adriamycin is most effective in combination with Cytoxan or if it's equally effective as a standalone drug. I am not aware that there are lifetime limits on Cytoxan like there are for Adriamycin, so maybe she could do AC if the combination is more powerful? (I may be having more Cytoxan soon as part of a clinical trial with a vaccine to help prevent recurrence, so I'm pretty sure my 4 doses that I had with ACT did not max out what I'm allowed to have). I would also want to know if they recommend radiation at this point, and if they'll recommend even further treatment (Xeloda or other). You might also ask if there are clinical trials that make sense at this point. Good luck.

Meadow so happy to hear your wound has been taken care of and that the puckering was fixed. I too will be without a breast. I'm going to just get a prosthesis and be happy that I'm alive cause my real breast almost killed me. Still in your pocket and pray for a speedy recovery.

Everyone on this site is so kind and supportive. It's just so amazing to me how complete strangers I've never met show so much kindness. It truly makes you all feel like extended family to me. To all starting the process stay calm and positive. I try to stay happy and upbeat and forget about cancer. I think that helped me alot with my surgery. My doctors couldn't believe how quickly I recovered and was able to be released from the hospital so early. All of you have been and are such a great support system to me. It has helped me greatly.

I met one lady on here who lives 30 minutes from me and we have become good friends and have met in person. We communicate daily. She said I was a great support for her during her diagnosis. If anyone would like to be friends on Facebook send me a personal message and I'll give you my facebook name.

Another NYCG You have been through alot yourself and also stay upbeat. Do you live in New York City? If you do maybe we can meet sometime cause my niece is a PA in Manhattan. I visit her when I can. She came home to be with me during my surgery and just left tuesday.

Any news on Annie?

Love, hugs and prayers to all.

DiV, you are an amazing woman! That word is over used in English Language now unfortunately. I wish I could put your screen name in the Oxford Dictionary as an example of what it really, truly means. Not surprised your Doctors used it to describe you. They don't hand out compliments like that arbitrarily either. Thank you for continuing to post and inspire all of us. I will PM you for a Facebook link, it will be nice to keep each other company through this journey. I was happy to read that you made a new friend to see in person and visit with. We all need that while going through this. I too have made some new friends I see in person and speak with by phone. It is a nice SE of all of this!! And it also nice to get off BC topic for awhile and learn about each other. One new friend is joining me in yoga class this week, something to look forward to.

Wishing all the TN Warriors a great week ahead, I just put #AC DD away yesterday and with the help of steroids and Zofran feeling pretty good today. Will try to get as much done in the next few days before the inevitable slump period.

Meadow...sorry we disturbed you‼️ The giggling in your pocket was just us having a little fun.😇 But, your pocket is getting VERY crowded. If there is a next time, I think you need to bring this pocket along with you.

Dova...welcome to our wonderful group. As you already have discovered, we are all here for each other. I don't have much to add to what others have told you about medical aspects. However, I strongly second the advice to stay away from Google. When I was first diagnosed, I was totally addicted to the point that if I woke up during the night, I would Google. It's hard to stay away because you think that eventually you will find a bit of positive information. Truth is that even though we share a common health issue...we are all different. I know a woman who had a 6cm tumor with many affected lymph nodes. EIGHT YEARS AGO she was told not to expect to live longer than a year‼️

I wish I could meet all of you in person!

DiV, - Yes, I am in NYC. It would be terrific if we could meet one day! Maybe we could get some others here to join us, too!!

Cathy, - great pocket!

Have a feel good day everyone!!

Oh, I'm so sorry, Browneyed Girl!

We can all clearly remember being in your shoes and just hearing this information. It is so scary, but it gets so much better once you have a plan in place. Your team is moving very quickly to see you, so hopefully you will have a plan very soon.

One thing I wish I did right at the beginning was get my hands on a couple of great, reliable books, which give an overview of everything. One of those books is Dr. Susan Love's famous Breast Book, and the other is Patricia Prijatel's Surviving Triple Negative Breast Cancer. Instead, I hit the internet first, which still provided me with great information, but in a more scattered way. Anyway, just a thought.

I had so many questions at the outset, I don't think I can give you a short list of key questions! But I was happy that my doctor suggested a breast MRI at the outset. You might also want to ask if there are any good/appropriate clinical trials for you to participate in if they suggest straightforward Standard of Care chemo (nothing wrong with SOC, but trials may be appealing so you should know if you are eligible for any good ones). You may want to discuss the pros/cons of neoadjuvant vs. adjuvant chemo (neoadjuvant is when you have the chemo first before surgery; adjuvant is surgery first followed by chemo). Also the pros/cons of mastectomy vs. lumpectomy with radiation. (FYI, this is a complex topic, and survival statistics turn out extremely similar if you choose either type of surgery. There are some situations that require mastectomy (BRCA+, multi-focal tumors, very large tumor size relative to size of breast which would lead to poor cosmetic result with a lumpectomy, location right below the nipple, etc). But for those who have a choice, the survival is very similar and the most recent studies even show a slight advantage for lumpectomy/radiation, which surprises many women. But the results are similar enough that it makes sense to take your own personal preferences into account (things like: how will you tolerate the need for ongoing mammograms if you have a lumpectomy, how would you feel about the loss of sensation that comes with mastectomy, how will you feel about the surgical risks associated with the bigger mastectomy surgery, etc). In the end this is a very personal decision, and women end up very happy with both types of decision.

Anyway, mostly I want to assure you that the vast majority of women with TNBC survive, and while it is scary, you will get through the treatment and put it in the rearview mirror. I will also say that there is.a huge range of responses to chemo, with some people having a very difficult time and some sailing through with flying colors, but it seems to me that most are surprised that it is way more tolerable than anticipated. For myself, I never vomited once, and was able to keep up a great exercise routine and do basically everything normal, except I went to bed early and a few minor complaints. I had a 2.3 cm tumor, and was diagnosed at age 45. I am about to pass 2 years since diagnosis, and I feel great.

Good luck, and ask a lot of questions!

Tulips

Thank you so much for the response. I'm trying to put together a list of questions to figure out what's best for me. I'm a nurse so I think I'm trying to tackle this with good information first instead of being overly emotional and that initial feeling when I heard the diagnosis of soul-crushing despair. My first thought was for my husband and children. The only thing I could say to my husband was that I was so sorry. I think if I can just make out a priority list and good info on evidence based practice then i can get ahold of my emotions. Right now its just a roller coaster. Thank you for the book suggestions. I'mgoing to get them now on Amazon.

Hello to everyone, veterans and new folks. Browneyed girl, it is overwhelming at first but as you learn more you'll feel more confident. I would recommend getting at least 2 opinions in terms of course of treatment. And I second the suggestion about looking to see whether there is a clinical trial you could participate in. There is a lot of research being done on TNBC so there may be a trial near you. I'm in a trial in NYC.

A question for this group. I met a woman this week who has TNBC, stage I, and said she's been getting an adjuvant treatment called MFC. She couldn't remember the specific chemical names. Does anyone know what that combination is?

aterry...

"The chemotherapy regimen called CMF, was routinely used to treat women with breast cancer from the 1970s through the 1990s - and many of these now breast cancer survivors are still alive today. CMF involves a combination of the drugs cyclophosphamide, methotrexate, and 5-fluorouracil.

Thanks, CathyToo and Kayak2. I'll look that up. She's being treated at Sloan.