Calling all TNs
Comments
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That's a great point. If you end up with a BRCA+ diagnosis, I'm sure they will be more likely to approve the BMX. I think even before then, your surgeon might be able to submit supporting documentation for the BMX, which would be this: known family history of bc and your diagnosis under the age of 45. Those should be 2 strong arguments to help get this approved.
Wishing you the best!
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Hi girls-
So...... Just came from my follow up......it was in 3 of 13 nodes.....surgeon is dictating a letter for tricare.... Will be asking oncologist to do the same....from what I understand this will most likely make me stage IIIb, right?0 -
Hi everyone .. Just did my first round of chemo march 21st.. Just wondering if any triple negatives have been on FEC treatment for chemo?
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Karietkq...not sure about stage..depends on size of tumor as well...was it in two spots same breast? You and I have nearly same diagnosis...3 nodes too! My insurance has sometimes been a pain (making me get chemo and rads at a hospital) but when it came to the bmx I had no issues. Makes me mad that they feel that they candictate our surgery options..grrrrrrr! Go to the top if you have or maybe your surgeon can go to bat for you if this is your choice...again the brca test comes into play. Sometimes we must be our own advocates. It get easier once the treatment plan is in hand..sounds weird but it is like you have the battle plan and warrior mode kicks in...be strong my sister
Maggie0 -
Hi TasiaB , I am triple negative and had my 4th out of 6 treatment last wed. I finished the FEC part and had my first docetaxol. I was pretty lucky with SE while on FEC,only had a bit of nausea, but I was very diligent in making sure I took my nausea meds at the first sign. If there is anything I can answer, let me know, Shari
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Maggie-
Yes..... One was 3 x 3 x 2 the other was 1.5 x 1.5 x 1.5 ..... So maybe it will still be stage 2??? That seems (in my head) so much better than than stage 3.....0 -
I know what you mean. Donot get too focused on numbers....remember there are survivors in very stage! I choose to be one. Mine is metaplastic too...I learned to stay away from google....stats are terrible. This site andwww.tnbcfoundation.org are great sources for information that is accurate....plus we can rally each other along the way
Maggie0 -
Hi ladies,
I have lurked on these boards for months now, but this is only my second post.
I am 32 years old and was diagnosed this past Oct. at the age of 31, and while 6 months pregnant. :-(
My husband actually found my lump. It seemed to come out from nowhere, as many if you have said as well.
I had an ultrasound on a thurs. then the next day a mammogram and biopsy. By mon. My OB called to tell me it was cancer.
At the time of my biopsy they noticed that I had an enlarged lymph node which they chose not to biopsy because there was fluid in the mass in my breast when biopsied. They now say the fluid was due to the fact that I was pregnant and my breasts were getting ready to lactate.
I made an appointment with a surgeon, who did biopsy the node which came back as positive for cancer.
I had surgery on Nov. 12th while still pregnant. I had skin expanders put into place.
My pathogy report came back showing my tumor was 5 cm in size. 8 nodes were removed, none showed cancer. Apparently all the cancer cells were removed at the time of my biopsy from the one node that did show cancer.
My margins did not come back clear on all sides because my tumor was pressed up agains the muscle, but my surgeon said he was certain he got it all (fingers crossed).
I was induced and gave birth to a perfect baby girl on New Year's Eve.
Had surgery for my port on Jan. 3rd, started chemo on Jan. 7th. I had 4 rounds of DD A/C followed by 4 rounds of DD taxol. I have one more taxol treatment to go before I start 6 weeks of radiation.
Around Christmas time I did notice another swollen lymph node which scared me, however the chemo has shrank it to the point that no one can feel it anymore.
Also during a routine ultrasound on my heart last week they found a fluid filled "something" on my liver. This makes me EXTREMELY nervous, however I'm hoping the fact that its fluid filled means that it is just a cyst and not the spread of my disease. I had a CT Scan on Wed. Still waiting for the results, but trying hard to stay positive.
Jennifer0 -
I'm 49 years old and was just diagnosed last week. I Have Invasive Lobular with tripple negative. Lump is around 2 cm. I can't seem to find anyone else on the boards that have both Lobular and tripple negative.
I'm waiting for genetic test to come back but have to make a decision about a lumpectomy or double masectomy. Leaning toward the double but my husband keeps pointing out that my Life expectancy is the same either way. I'm so scared. I don't know what to do. So much info, but not enough info if you know what I mean.
I'm am already so tired. I don't know how I'm going to make it through any of this.
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Sunnyskys...welcome. First just take a deep breath. We are here to help offer support and encouragement as well as advi e from those who have trudged this rd before you. This is certainly a big de ision that ultimately YOU must make. I cnose thebmx because I am an A type personality and knew that I had to for my own peace of mind. Careful of google and use only trusted sites like this one and tnbcfoundation.org. My hubby was a boob man. But when diagnosed he asked the surgeon flat out "what would you recommend if it were your wife?" The answer was bmx....do what feels right to you. Hugs as you begin this ride of your life
Maggie0 -
A big welcome to all the new gals. My heart feels heavy to see so many new names here in just the past week or two. I am coming up on 4 years out.....And there are others here that are that far from DX, too. Just want you newbies to know that there is light at the end of this nightmare. You will be stronger than you ever thought you could be. And when the days get rough you can always come to this little thread and find a friendly person to talk things over with. We get it. and we care about all of you.
Sunny: Your husband is correct...the stats say that lumpectomy has the same survival rate as Mastectomy. BUT---Please listen to your own heart. If you want a lumpectomy, do it. If you want a mastectomy, do it. Whatever you choose, it must be for YOU. Your husband/family will not be able to fully understand how this feels. So go with what feels right for YOU.
Hugs to everyone tonight.
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Maggie-
Too strange about our similarities! The small one was not IDC it is carcinoma with mataplasia with mixed type.....cartilaginous/ osseous and spindle cell mataplasia0 -
Jenn230... I'm glad you posted here again as you will find lots of support and advice. My heart goes out to you as you have treatment with a brand new baby. Hang in there and my prayers are with you for a clean scan!!
Sunny... welcome to our sight. I had a BMX...could have had a lumpectomy but because I'm BRCA positive and my mom and sister had BC, that is why I chose the double mx. Everyone is right, it has to be YOUR decision. You will make it through this. I'm not going to sugar coat it, it is hard but you can do this.
When I was first dx, I was so overwhelmed that I didn't hear what anyone said. Thankfully, my husband stepped up and went to all my appointments with me. Then, when my treatment plan was put in place, I became a warrior and fought all the way through chemo. I only missed work on chemo days. It's been tough but I feel I have conquered something huge in my life and feel stronger for it. You will get there as well.
Write in a journal every day. It really helped me as I went through chemo writing down how I felt, what I ate, what meds I took, etc. best of luck to you0 -
phgraham, Happy Belated Birthday or as happy as we can make it with the cards weve been dealt. I'm sorry that you are going to have to go through chemo again
, what will they give you this time and for how long? I'm pretty new to this so forgive me if I ask some dumb questions. I had 1/2 my treatment yesterday (happy bday to me lol), my ALT was up to high again so I didn't get taxol but received the research drug. Thats 3 missed taxols so far. Take Care and I admire your cheerful attitude. Gave me a smile before I doze off0 -
I echo what NavyMom said. I'm saddened to see so many new people on the boards this week. It always breaks my heart to hear of those that find the lump during pregnancy or while breastfeeding. I can't imagine having the feeling of such a wonderful event of a new baby, combined with the new knowledge of a bc diagnosis. You all are so strong, and you will definitely find all the love and support on this site. Thinking of you all, rest easy and know that your medical team will get you through with the best of care.
Many prayers and hugs!
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Maggie's comment was interesting, in that it completely recaps how I felt. I too am Type A personality and immediately chose a BMX. I didn't even ponder. I learned of the bc diagnosis on a Tuesday, met my Surgeon that Thursday, and then on Wednesday I had the BMX.
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jenjen -- a couple weeks ago when I was having a treatment, but had not seen my MO that day, he walked through the chemo suite to get some coffee and asked how I was. I told him I was having some severe back pain and the nurse had ordered a urine test to check for UTI. He said he would check the results and see if it was negative he would send me for an X-ray. It was negative, so he sent me for the x-ray right after I got through with my treatment. Luckily it was nothing related to cancer. He said it showed scholiosis and a twist at the bottom of my spine and that I would probably need some PT after treament. I also am on meds for pretty severe Osteoporosis in In my lower back. I hope chemo has not made that worse. At any rate, so thankful I have a MO that listens and responds.
QueenKong -- my next step is rads (probably about 5 weeks or so away). When you say your are "suffering through rads" what do you mean? Are you having issues or just the aggravation of having to go every day?
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Jennifer,
I don't know what to say except OMG. I am so impressed that you can even post with what you have been through. Your strength is shining through. Congrats on your perfect little blessing. Sending prayers your way.
Hugs, Sheryl
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Sunnyskys,
Welcome aboard. This is a very frightening time for you and I remember it well. I am 3 weeks out from my final chemo and start rads next week. I made it, there were some tough days, however, it is very doable as everyone who goes through it will tell you. Please come back here often and say whatever is on your mind or in your heart. I equate these threads to journaling. I say whatever I need to say and no one judges they just support and offer prayers and blessings.
Hang tough, Sheryl
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Phyllis -- so sorry about your new diagnosis. Hang in there and keep us updated.
Welcome to all the new ladies. I echo what others have said. This site and especially this forum is great. All the info you need can be found on breastcancer.org and it is reliable info. In your profile, I think you can sign up for alerts for articles that meet your criteria.
I had #11 of 12 Taxol yesterday. I am so happy to know that in a week I will be through with chemo. I see the RO again next week to set up my radiation schedule. I've already had 2 appointments with her right after my diagnosis and she is great. She takes a lot of time with you, answers questions and draws pictures. She requested BRCA testing since I have a family history of cancer (1 sister with breast and 3 brothers with other types, father with prostate). My insurance denied it. My MO said he will push for some genetic testing after I get through all the treatments.
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Inspired...see my signature line... I worked quickly too
Katie...there is a metaplastic bc fb page if you want to join. As long as it is metaplastic you can...just have to ask its a private group. Send a request to Bena Roberts
Maggie0 -
Maggie-
I found them last night! Did you have one tumor or 2 different ones like me? You know.... Since I think we may be the same person living parallel lives.... Lol0 -
sorry Karie...it was just one haha. But that is ok its really close right to the lymph nodes! And sorry I have been calling you Katie whoops....chemo brain...that is my excuse anyway
Maggie
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Maggie-
Did they know before hand that yours was MBC? Or only after the path? We're you offered chemo first like most other TN? I was never offered the choice since I have still not seen the oncologist.... I am still glad we got it out so it wasn't hanging around growing but I read all the stuff about shrinking before hand and wonder if it would have even been recommended ..... We had no idea that the second tumor was not IDC until we got the path report yesterday0 -
I am glad I did surgery first. Not given a choice of chemo first from my surgeon. MBC moves so quickly and I am not sorry at all for my choices or path. Will be 2 yrs in Aug and that is gonna be a big celebration. Mbc status was known at biopsy 8-11-11 and did not show up on path from surgery 8-23-11(oddly it was not mentioned). Perhaps the lab did not feel the need to mention it as it was the same lab???? no idea. I found an article...do not remember from where that showed that mbc must be dealt with differently than other TN's and surgery should be the first step I will try to find the article and post a link
Maggie
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Maggie
Then, yay! Lol .... Good thing I wasn't given the option as the biopsy surgeon didn't think it was cancer at all and missed it twice (he was really old)0 -
I'm having my expander exchanged out for the new implant tomorrow. Last surgery for the expander was a disaster due to discovery that my family had head lice the day after surgery, me going insane trying to deal with it, developing two seromas that had to be drained, and having to take an extra week off work.
Got over flu from 2 weeks ago, now dealing with my car in shop for a week for new transmission and other car getting broken into and window smashed.
Please send good wishes that this time surgery goes better! I know there are people out there that have it worse, but I could go for having things slightly improved
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minxie....that is a lot of bad luck! Time for a change...hoping all goes well...the odds are for complete success
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Minxie, you'll do great this time.
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Minxie -- saying a prayer for you.
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