Calling all TNs
Comments
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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. -
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. -
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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Llizz and Seashore - welcome. I'm sorry you're joining us, but this is a wonderful, supportive group. Us TN's have to stick together. As others have said, try to shield yourself from outdated info. I'm a googler and had to take a long break from the internet after first being dx. I was scaring myself to death. I stayed in my own little cocoon here for quite some time. Also know that the first month is the hardest mentally, as you feel like you're in a free fall. It's all too much to grasp and comprehend. Once you have all the facts in front of you and devise a good plan, you will feel much better. Sending you both lots of hugs, good thoughts and well wishes.
Simple - thinking of you as you wait for the path report. I'm so glad to hear everyone is expecting fat necrosis.
Bunnygirl - sending you many hugs and prayers. Please check in with us when you can and let us know how you're doing.
Meadow - thanks so much! Surgery is scheduled for August 18 at noon. I'm trying not to think about it yet as I'm a nervous wreck!
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Everyone, thanks for the warm welcome!
Jan69 - great idea to use this time to plan a trip. Our 15th anniv is next yr, perfect timing! Love Hawaii (our honeymoon was there) but may think about an Alaska cruise?
Hello to fellow Missouri gals, Meadow & TifJ. My chemo was also at KU Cancer Center South and my surgery will be at KU Hospital.
LLizz - will be thinking about you today as you wait...
Allydp - After dx I was also all over internet about all the new terms and was so frightened. When chemo started I took a break and focused just on it since it would last a while. Slowly started back mostly researching reconstruction (I felt like that was the phase I had the most choice about). Now ready to start connecting with others here at bco. Wow, your journey and mine have been almost identical this year!
So glad I found all of you!
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Seashore - I know, I couldn't believe it when I read your intro on the August thread. I hate to think someone else was going through what I did, but it's great we have each other's support here. My friends and family are wonderfully supportive, but sometimes they just can't relate or fully understand. I say plan that 15 year trip! It will be a double celebration as you'll be cancer free!
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Welcome to all of our new ladies. You may not think so now but there really is light at the end of the tunnel and the time will go by in a flash.
Jan is right, focus on something or somewhere you really would like to go to or set yourselves a goal and it will give you something to fight for.
Luvmydobies the fact that your nodes are all clear is an excellent outcome for you and your Doc was right. I had cancer in four nodes but as far as I know (and keeping my fingers crossed) radiation took care of that wee problem.
Looking up information on the Internet can scare you silly for no reason and can increase your anxiety ten fold. Your Onco is the best person to refer your questions to. He knows you and he knows your cancer and he will be honest with you at all times. Because I want to live positively and happy for whatever time I have left in my life I don't want to read outdated info about recurrence or metastasis. I just cannot go there and continue to live my life without worrying.
Allydp my family and friends are very supportive as well but after a while I kept my fears and worries to myself as I didn't want them to worry or fret. Coming on here helped me a great deal. The tips I was told by the ladies on how to overcome problems with chemo and radiation were just great and helped me get through a very trying time not only that I made some beautiful friends as well.
Simple wishing great results for you. In your pocket.
Cat and Fighter haven't heard from you for a while. Hope all is going well for you.
Big hugs to those in treatment and those waiting for results and those friends having a great time living their lives. xx
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Thanks for the words Cocker! I don't read anything on the Internet anymore except for here of course. I saw the thing about the nodes on another thread, but like you said I just need to trust my Onc. You are correct about radiation taking care of the nodes.
Also I hope everyone waiting in results are hanging in there. Please keep us posted. Thinking of everyone and praying you all have a good day!
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Lisa,
Congratulations and I thank you for listing all the positive things you learned during this long and difficult journey. It encourages me to again revisit the positive things I learned during and right after completion of treatment, several of which coincided with yours!
Again, congrats!
Hugs,
Peggy
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Is ACT the typical chemo regimen for triple negative BC? I will be starting chemo within the next month. Six sessions of adriamycin, cytoxan, and taxotere is my oncologist's recommendation. I already had radiation for my first BC (lumpectomy) five years ago so I don't believe they will be able to give me radiation again, even though this would normally be the recommended approach for the lymph node involvement in my newest BC. I would like to have a comfort level that the chemo I'm going to do is at least the routine standard of care for us triple negative ladies.Thank you for thoughts on this.
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Yes, purplegirl, I believe that is the standard, but I have seen that some are now adding carboplatin. My treatment was 4 A/C and then 12 weekly taxol! The A/C was done over an 8 week period, once every other week! Luckily for me, it was very doable, I was even able to work full time! Just took a little more rest!
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