Calling all TNs
Comments
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Thanks Lilyrose.................and don't worry about being behind..............I stay behind and feel bad for missing stuff but for me sometimes it is to overwhelming.
Best of luck to you.
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Thanks LilyRose. Stupidboob you're in my prayers. Keep us posted please! Big HUG!! XOXO! Hopefully it's just asthma or something like that.
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Ally saw on your other thread about the rib pain, all clear. So now just enjoy life! the good life
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Thank you Luvmydobies................:)0 -
Hi All-
I was diagnosed with tnbc at the end of May with a 1.2 cm mass on the inner quadrant of my left breast, deep in close to the chest wall. I have since had a bmx and am almost done with ddAC+T- one last T to go. And of course I'm super excited and freaking out that I won't be in active treatment all at the same time.
My question is this- my surgeon said she got good clean margins with the bmx, knowing I was worried about how close the mass was to the chest wall. My onc says radiation is not indicated because I had a bmx and was node negative.....but I still worry because the mass was close to the chest wall, I just don't know how close or far or what the margin measurement was and it's not on my pathology.
Have any of you been in a similar situation? Has anyone gotten rads with a bmx and neg nodes? If so, why?
I know I'm getting into crazy pants mode out of anxiety but just want to know I am being as proactive as possible. I'm 43 and have a 4 year old and 20 month old at home and want to make sure I am doing all I can.
Thanks for any advice you might have.
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VerukaNY welcome to the group. I don't normally chime in on things if I can't be positive but I wanted to share my story with you and then let you decide if you need a second opinion. Sounds like our cancer was a lot alike and while I did have 3 nodes involved and you did not, I still felt it warrant me sharing. My doctor got 2" clear margins, took out 15 lymph nodes and said that chemo should clear it up and while it could come back with anyone they never thought they would see it come back in me. Well almost 2 years later it came back, up the lymph nodes on the chest wall and between my major and minor pectoral muscle so I had to have chemo again and radiation this time. I am not telling you this to scare you, but so you can be well aware that it can happen so you can push for radiation if you want it. I hope and pray you are a lucky one and it NEVER returns. I hope you take this as the care I mean it as and not the scare it can be. I would NEVER scare anyone on purpose.
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Hi VerukaNY- I had almost the exact same diagnoses and surgery as you. Because I had a BMX there is no need for radiation. Had I selected a lumpectomy in my left breast only (where the cancer was actually located inner quadrant close to the chest wall) I would also need radiation. I decided to be real aggressive and remove both breast to which the Surgeon removed all breast tissue clear up to my clavicle. It was explained to me by the ONC that there is nothing to radiate. All breast tissue (except nips) is gone. And yes, I had to ask and get reassurance a few times before I was completely secure.If you're still uncomfortable about the info you are receiving, how about a second opinion? I don't think there would be any harm in doing so just to be better informed. Good luck to you and great question.
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Sadie....I'm hoping all is clear on your pet scan next week. (((hugs)))
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thank you Stupidboob and Redheeledwomen. Definitely food for thought. I guess I will talk to my surgeon and onc again, and maybe get an opinion from a radiation onc. I'd hate to expose myself unnecessarily, but I feel like I have to do everything possible. Course that also means hauling my butt out to get some real exercise!
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I guess I'm late to this party!
33, did my first ironman tri in June 2014, diagnosed with stage II-III IDC July 2014... Apparently I did an ironman with cancer.
right side 4 cm tumor, node -ve (still not 100% known), neo- adjuvant chemo, had 4 rounds of AC with a partial response (25% ish... Docs wanted more), just started Carbo/taxol - 12 x t, 4 x C. Tumor is sitting against my pec with some invasion - trying to get it to move off there before surgery. So far doesn't seem much change with the second set of chemo.
I'm pretty terrified! Was doing mentally well until the MRI was disappointing... Looks like I'm saying byebye to my Pec!
Anyone got much experience with chemo not responding? I'm taking it as a very bad sign... Originally was just worried about getting back to triathlon, now I'm just worried about surviving
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Dear Turbo81, Welcome to the BCO community. While we are very sorry that your cancer diagnosis brought you here we are glad that you reached out. This is a caring and informed group of others who can lend support and experience to help ease your path.while you are waiting to hear from others you may want to check out some information on our site. Triple Negative Breast Cancer Keep us posted. We are sending warm and caring thoughts your way. The Mods
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I think the eating and exercise is the hardest part. I actually weigh the most i ever have...stupid hysterectomy!
Next week I have a bone density scan not sure what to expect.
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Turbo81 - I'm so sorry you are dealing with this but know that these boards are a great place to share. Like you, I also had only partial response with neo-adjuvant chemo. I had IDC and DCIS, in 2 different quadrants of the same breast. In my case the IDC decreased about 50% and the DCIS responded even less from chemo. My tumors were closer to the skin or nipple areas and so I can't add anything about your concerns about the pec muscles. Not sure if you've already had your consult with your Breast Surgeon but I encourage you to raise your concerns in the consult appt(s) with the BS and/or also get a 2nd opinion from a different BS. During the last 6 weeks of my chemo I got a 2nd opinion from a different BS and ended up changing surgery teams (I felt so much more comfortable with the new BS and her recommendations).
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thank you simplelife40 -
jenjenl it sure is.................this is where I am failing BIG TIME!!! I just can't seem to eat right or make myself exercise. I have major stomach issues and eating right sometimes just does not/can not happen or I am in major pain. I hope all will be well on your bone density test.........it will be fine and that is one test that we can all breeze through (silver lining at least)0 -
Turbo81 can't offer much help but I can offer support and send you a big comfort hug..........[[[Turbo81]]]
Mine returned between my major and minor pectoral and I had to do the chemo again and radiation. I know your fear because the surgeon did not want to operate on mine because I might lose the use of my arm. My thoughts and prayers are with you.0 -
Sadie, are your stomach issues caused by meds or something else? The reason why I ask is that I had digestive problems for years that I hadn't addressed. After I got done with bc treatments, I finally broke down and saw a GI doc. It turned out I had both Crohn's disease and gluten intolerance. Now that I'm on meds for the Crohn's and have cut out all gluten (as well as dairy), I am world'
s better. I hated having to go to yet another doctor, but it really paid off for me. I went from years of abdominal pain to almost normal.
Turbo, don't give up on the chemo. The taxol carbo combination may really turn things around. How far along are you with the taxol/carbo? I didn't have carbo (it wasn't as routine last year when I had my chemo), but that stuff is really strong and many TNBC ladies have had awesome results with it. I had taxol first and then AC. It wasn't until the very tail end of my chemo that my tumor finally got to the point where we could no longer feel it. I ended up with only minor residual bc in two nodes and nothing in the breast by the time of my surgery. It sounds like you have just started the taxol/carbo combo so you have several months to go for chemo to work it's "magic." This is all scary stuff, but it's still possible for the chemo to do it's thing.
Hubby and I are on our way out to Vegas to meet up the some gals I met on-line through the Sept. 2013 chemo thread here on bc.org. Tonight we are in Taos, NM. I can't believe how beautiful it is here. The aspens are turning for fall. Breathtaking! I just feel so, so grateful to be having a chance to take this trip. I am just loving every minute of it.
Hugs,
Kay
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Turbo81,
I'm sorry you find yourself here with us. I just got through posting on my June chemo board about how bc.org has been better than any shrink and cheaper too! There is not a person here who doesn't get it. I can always find someone who points me in the right direction.
I had cancer in both breasts. Though my tumors were small, one sat in the muscle. There was not a lot of muscle taken to get clear margins but my bs warned me that it would be more sore than the other breast. Well...it turned out the one with the missing muscle healed easier than the other! I still have tissue expanded in so I don't press a lot of weight, but I don't notice the missing muscle...but again, it wasn't a lot!
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Welcome Turbo Sorry you had to join this sweet club, but now that you are here you will find support.
Kay I am so glad you are going to Vegas, please send me details of all the fun!
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Turbo. Sometimes one drug works when another doesn't. It's good you had neoadjuvent chemo so they can see your response. Even poor results give a clue about what needs to be done next. You are going to beat this! Give this next batch a little time to do it's thing. This time next year we will compare our Tri results!! You got this.
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Doctor on the news just said women should avoid sunscreen that contains a chemical called "oxybenzone" as it may cause breast cancer. He says obviously sunscreen is important, but you should use sunscreens that don't have "oxybenzone" in them. This chemical, he says, is a "hormone imitator" that acts like estrogen, which is why it could contribute to breast cancer. He also says people should avoid skin care and other products with any ingredient that ends in -----paraben (i.e methylparaben, ethylparaben, propylparaben and butylparaben). According to him, these "parabens" are also "hormone imitators". My feeling on this "stuff" is who knows if they do or don't cause cancer or anything else...but if there's evidence that it might...then why use it? There you have it ladies, my humble, lay person's "public service announcement" based on what I just heard from a doctor on TV.
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thank you everyone for the the responses! This is a pretty awesome community. I got a check up and was told the carbo/taxol is working and to basically stop feeling it every day to see if it changes. Meeting with my surgical team to discuss the pec muscle stuff next week also - feeling much more positive after the last couple weeks.
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Thanks ALHUSBAND and I agree with you. Parabens are in too many products.
Turbo, keep up that positive energy. It will help so much in kicking your cancer. I am glad you feel better!
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*pops head up from Whack-a-mole hole* *peers around*. *waves hi*
Hello ladies. Just popped in to tell you that even though I'm not here often, all my sisters are in my prayers. I'm often lurking here to check up on you.
My life is still chaotic as usual. *sigh*. Cocker, you be pleased to hear that I have good news...I have bad news. The good news is I finally have a roof on my house. The bad news: I've discovered after a month that despite hiring an honest, kind contractor.....it appears he may be having early memory problems (My Dad who had Alzheimer's is sitting up in heaven laughing his ass off.) I also have to call a lawyer today to look into taking action against my insurance company.
Turbo, I wanted to post to both welcome you and second what Radical said. I believe that this thread has done more to save my life (both physically and emotionally) than any medical team. My doctor's would often get peeved when I came to them with accurate, current medical information that I got on here and that they hadn't provided. (They get really embarrassed when they have to admit they don't know some current info that's out there.). I even once knew that my doctor was leaving before she told me. (Someone on here had PM'd me). Really makes them paranoid when they find out how well we are sharing information on here!!! And it keeps them on there toes.
I learned info that may give me a shot at prolonging my life from one of our dear sisters that has passed (OBXK). My new onc does have a sense of humor about how effective our community is on here. ("how the hell are are you guys getting all this new info even before we do?")
So welcome Turbo, you've come to exactly the right place. Hang in there!
I hope to be able to get a chance to check up on y'all but I have to dash. Mom just spent a week in the hospital and is now readmitted after only 4 days out. (Part of my life is spent trying to make sure the Nursing Home doesn't manage to do her in.)
I'm alive and still taking every chance to find humor in the absurdities of my life!!!!
Be well Sisters!!!!!!
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ALHusband-Good info! While I have not done very well with diet and exercise, I have eliminated all parabens from my face and body products. I like the Physicians Formula makeups, but even those you must check the labels as all their products are not paraben free!0 -
Kathy,
At first I laughed at your "whack-a-mole" analogy but then I got the urge to put a little hammer to your hammer to your habitat and I didn't think that was very nice of me....I hope you understand my urge, it was only a reflex from years of boardwalk play!
Wanted to tell all you ladies that I made a scrapbook of sorts after Agent told her story. I feel like Canuck with how many people I am running into at different stages of this game. I thought maybe I could share my pictorial journey with others as they come...kind of like we do on the picture forum. I hope to never need it, but reality tells me otherwise.
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Just a thought that's in my head today....I'm scared to let go of the fear of the cancer coming back thinking that if I do it'll take me by surprise. But if I continue to think that it's still here then I'll be ready.
Does that make any sense??
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Nettie, I actually get what you're saying. Everyone around me keeps telling me that once I'm finished with rads-I'm home free. Really??? They know that??? I just smile and nod. I KNOW this beast can come back...I just sure hope it doesn't! I am trying to take one day at a time. Some days are easier than others. When I discussed this with my MO, he said he doesn't tell people they are 'cured' he uses the term 'no evidence of disease'. So I will be hoping to hear him tell me that soon! But I have to silence that little voice in my head that brings up all the what ifs.
AL Husband, Thanks for the info. I am reading labels a LOT more carefully these days.
Welcome Turbo, Sorry you found yourself joining this club. There are lots of great people on here!
Kay, Can't wait to hear all about your trip!
I am finally feeling a lot more normal. Am now 5 weeks PFC. and starting to grow some hair. Started rads, 8 down, 26 to go. My skin just started turning pink yesterday. Neuropathy is still annoying me.
Wishing you all a peaceful evening, lilyri
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Nettie, I totally get what your saying....like if you let your guard down the cancer will find a way back in. Your not alone. I felt like that for a long time and sometimes I still have days when I get scared. But things do get better. Time is a wonderful thing and eventually you will see cancer in the the rear view mirror and life will be good again....maybe somewhat different, but good. The so called "new normal" So Hang in there.
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I found out today that my tnbc did not respond to chemo. Well, it did during chemo, but it started to regrow at some point and was about the same size when it was remove as first dx. One node was positive as well. I'm scared, what does it mean?
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