Calling all TNs
Comments
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radical - thanks for sharing the poem - it is so beautiful! You are an inspiration and I can learn from you to fully embrace and LIVE life!
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radical, so beautiful. You will teach others with your beautiful words. You are a special person and your friend Naomi is lucky to have you and you are lucky to have each other
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Radical, that is a beautiful and inspirational poem. As Lisa said, your friend Naomi is very lucky to have you in her life.
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Radical - Such a beautiful and inspiring poem! Your friend is fortunate to have you in her life. FierceBlueBird would love this as well.
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Hi,
I got my Dx today. I am still waiting for my HER results, but my onc surgeon said that he expects that I have the "triple negative". So, I'm doing some homework. It's kind of freaking me out.
Just wanted to say hi.
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Welcome LLizz! Sorry you find yourself here, but you will find lots of support here. Try not to freak yourself out. Make sure your dr explains your pathology report to you. And get a copy to keep. Let us know how you are doing.
Hugs, lilyrose
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LLizz,
Welcome! Don't be too freaked! There are advantages to triple negative as well! You'd have a pretty clear-cut treatment regime and no worries about hormone replacement therapies!
In the mean time, try to do your research here on bc.org. Between the forums for real life experience and the journal articles here, you'll find truth and support instead of a whole bunch of scary half information!
Jen
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LLiz, welcome!!! You have found a wonderful place for information and support.
couple of pointers for you:
Bring someone with you to appointments and have them take notes
Get copies of ALL of your reports/results and keep everything in a binder/folder
Do NOT do random searches on-line regarding Triple negative BC. Stay on BCO or the Triple negative site. Most of the things you read on-line about TN are outdated and inaccurate and will only scare the crap out of you.
Always be your own advocate....You need to be comfortable and confident in your medical team. Ask questions, get answers and be assertive when it comes to getting what you need/want need from them.
Come back heer often so we can help.
I am a 5 year survivor and feeling GOOD!
I am sure others will be along to offer support and answer any questions you may have.
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Hi LLiz, I agree with the ladies above...studies show that Triple Neg BC is very responsive to chemo. Mine was, and that is why we take the darn stuff is to get rid of all the cancer. I am coming up on my one year anniversary date, and I am happy to say I am disease free. Don't stress, you can beat this.
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Hi Liz - Just left you a note on another thread telling you to come find us here, so I can see now that you already found us! I won't repeat what I said in the other thread, but just know we're here for you. This is an incredibly supportive group of women who will help you every step of the way. Don't hesistate to ask questions or just vent. You can do this!Kathy
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Llizz, Welcome to this thread, and please don't be freaked out. I remember the feeling well, as triple negative was not on my radar - had no clue what it meant - never even heard the term before. However, there are some positives as has been pointed out, and the treatment is doable. Just completed 5 months of chemo and had my radiation simulation yesterday - will have my first actual rad treatment exactly two weeks from final chemo. With information and once you have a treatment plan in place, you will feel empowered. Right now, as my breast surgeon said, when you're hit with the news, you are in free fall. That feeling will stop when you have a plan of attack. These are very supportive ladies.
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Simple - thinking of you and sending positivity your way as you have your biopsy.Bunnygirl - Sending big hugs and prayers your way. Please keep us posted on how you are doing.
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Liz - Joining the others above wishing you well as you start treatment. I'm a 3 1/2 year survivor and I'm doing just fine. You'll get there, too. Jan
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Llizz, just wanted to join the group in welcoming you. At first, everything is so overwhelming. It was like one punch after another for me. I finally asked my doctor to test me for something we knew I didn't have, mad cow disease, rabies, anything just to have one medical test come back the way I hoped! First the dreaded words, you have cancer. Then, it has spread to you lymph nodes. Oh and by the way, it is triple negative. But the punches did stop, and my head stopped spinning. Genetic testing showed I have the mutation, so I opted for a bilateral mastectomy with tissue expanders. I went thru 6 rounds of chemo which were not pleasant, but I managed to make it thru. I will complete 34 rounds of radiation on Monday (28 whole breast, 6 boosts to the incision and tumor area). In September I will have my total laporscopic hysterectomy with bilaterial salpingo oopherectomy and hopefully before the year is out, I will have my new foobs! I started this processes thinking it would be a 6 month ordeal. WRONG! Saturday will be 9 months since my diagnosis and still getting on with it all. I think that I saw on the other board that you are very, very young. In addition to everything everyone has already said, if you do not have children, and you want to have children, you may want to add those questions to the list for the doctors. This site has been a god send, as well as a place to scare the sh*t out of yourself. Stay away from the scary stuff, it will only make your mind race and worry about stuff that hasn't happened. (Stage IV, Mets, recurrance, etc...) Take it as it comes. Be gentle to yourself. Let me repeat that - BE GENTLE TO YOURSELF! Nothing else in the whole world is more important right now except for giving you a little TLC right now. Be selfish, take care of you. I hope you check in periodically and give updates to your recovery. Sending you positive energy and keeping you in my prayers!
Best wishes,Janet
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My first post to this thread: I was just diagnosed in Feb at age 55 with triple negative. I had never heard of triple negative. I remember leaving the MO office after that first visit with my DH - I said "this is really happening" and just started crying. Since then I've had the genetic testing and am BRCA2+. I've finished neoadjuvant chemo (12 weekly taxol/carboplatinum followed by 4 dose dense AC). Next up is surgery. I've been told rads is not expected but will depend on the SLN results. As I've seen on this journey so far, each wave can and usually does carry new information, so I'm learning to just take a phase at a time. So glad chemo is over and now getting ready for the surgery phase.
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Welcome Seashore, As you have been reading there is a lot of wonderful support and information shared by so many in this community. We hope that you will continue to post and take advantage of everything that is offered here. The Mods
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To the newbies - I should mention that I had planned to go to Hawaii when DX. I put it on hold, but MO said to plan it for the next year. So I did. I went 1 year from DX and had the most refreshing time with family. Planning that trip helped me fill my very scared brain with thoughts of warm tropical breezes and toes in the sand.
Perhaps having an end-of-treatment reward would help when the going gets rough. Or things like a day at the spa when finishing one stage before going to the next.
Best wishes and hugs to all who are just getting started. Please keep in touch. Jan
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Yes Seashore, and all the newbies, welcome.
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Thank you R2S for the poem. Love it.
Simple, thinking of you and the biopsy.
((((Ally))), I know your surgery date is in Aug, thinking of you. It will be just fine.
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Welcome Seashore! You will find lots of support here. Be thinking of you on your upcoming surgery.0 -
Ok ladies, I'm panicking a little. I read on another thread that's new where someone basically said nodal status didn't matter much in terms of prognosis for TN. My Oncologist says it does. So is he just blowing smoke up my butt?!! I know BC CAN metastasize no matter what stage you are at diagnosis and no matter what type, but my hubby and I were holding onto that little bit of hope and now I'm scared. My Onc is very well known and respected and I trust him but it's like I don't know what the heck to believe anymore sometimes!
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curlyQ,
I laughed as I read your post above. You mentioned one punch after another and asking for some good news from your doctor. I just had that same conversation with the oncologist last week! My analogy was peeling back the layers of an onion, where each layer is more and more stinky.
For me, it started with round 2 of breast cancer at five and a half years from my first go-round. Geez, I thought after five years I would be safe! Then finding out after surgery that my tumor was twice as big as they had thought and was in my lymph nodes. And finally, confirmation of triple negative status (I was holding out some hope since ILC is apparently usually hormone receptor positive but not in my case). So when they sent me for a PET scan, I thought, with my luck they'll find cancer somewhere else in my body. When they told me the PET was clear, I felt like it was the first good news I'd had since everything started in May!
As I move toward chemo in the next few weeks, I am hopeful that good news will now become the norm for me and Lizz, I hope for you as well and that all surprises from here on out are good ones!
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Welcome PurpleGurll, Liz and Seashore. I'm sorry for the reasons for needing to join us, but I'm glad you found us. PurpleGurll, are they considering your a new primary or a local recurrence? I can only imagine the frustration you must be feeling to have to deal with another round of this disease.
I had my biopsy yesterday on a lump that is right at the site of my original tumor. Everyone seems to be pretty confident that it's only fat necrosis so I'm not freaking out about this. I should get my results either Monday or Tuesday. This biopsy went soooo much easier than the last one this time last year when I first got diagnosed. Nowhere near the pain or bruising. I feel almost normal today, just avoiding heavy lifting etc. I know my original tumor was very vascular and they also did a lymph node last time, so there were two incisions and a lot of buising and swelling even on the day of the biopsy. This time, I wore the tightest bra I own and didn't take it off until this morning so there was a lot of compression on the biopsy site. Between this lump not being real vascular and the compression, it made a huge difference in pain levels. I'll post here when I get my results.
Wishing everyone a good weekend.
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Luvmydobies,
As far as I know, nodal status is important for prognosis, but not for treatment. We triple negatives get the chemo no matter what! The number of nodes effected is an indicator as to how much your cancer has spread. That seems pretty important to me!
My onc explained that triple negative cancer sometimes sneaks by the node dissection...that may be why someone said it didn't matter?
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Simplelife, it came back in the same breast as my earlier lumpectomy but in a different quadrant than the original, so they consider it a new primary and not a recurrence. Yes, very disappointing to be going through this again. I had just run the Race for the Cure 5K in May and was feeling so happy that I'd passed the five year mark when I felt a lump. As I had been on annual mammograms and ultrasounds and biannual MRI's, I'm still dismayed that it managed to avoid detection by imaging.
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Welcome to all the new ladies on the boards. I have been reading a lot of positive studies. One is about an androgen receptor blocker (ar is common in triple neg). Also they are testing viruses that go after cancer cells...very promising. Hope they can cure this thing!!!!
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Radical, thanks for your reply! I know what will be will be. I just get nervous because of all the negative stories I've heard and read about TNBC! My Onc just says it's a good sign that my nodes were clear. He didn't order any scans other than base line tests, like blood work, chest X Ray, heart ultrasound and a MUGA test, but he said that based on my path report a PET scan wasn't necessary. I did have a breast MRI before surgery.
Sigh.... One day at a time. Thanks again!
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My mo said the same about scans....
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Welcome Seashore! I am down in Harrisonville! If you need anything, don't hesitate to let me know as I have a pretty flexible work schedule. Where have you been going for treatment? I went to (and continue with my follow-ups) at Kansas City Cancer Center South and my surgery was at Menorah Medical Center.0 -
Hi Ladies,
I will hear tomorrow about my HER2 status and if I am a real triple negative. I haven't spotted too many signatures that show Er-/pr- her2+ .... I've been keeping my eye out.
Anyway, I get results tomorrow and I am seeing my med onc. for the first time on Tuesday. I don't know how I am going to concentrate on work at all this week. I guess I'll just try.
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