Calling all TNs

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  • mkn86
    mkn86 Member Posts: 250
    edited August 2017

    31 years old, single, diagnosed aug 11 with Stage 3A while on long term assignment for work.

    Still a bit lost and waiting to fly home for consultation with local oncologist and their recommended treatment plan.

    I still can't grasp exactly how aggressive TNBC is...trying to fight the urge to think that the tumor is growing each day. just trying to make it until the flight (aug 31) so i can see family (brothers and parents and deal with the treatment head-on.

  • ALHusband
    ALHusband Member Posts: 344
    edited August 2017

    Stre the port insertion is a "relatively" minor outpatient procedure. Yes, I guess technically it's surgery. But don't lose sleep because nobody has mentioned it yet. I'm sure that that will be explained to you as part of your treatment plan. I'm sure docs want to get all of the results from all of the tests before finalizing a plan. I know it doesn't seem like it now, but you'll see, everything will fall into place and you'll have some peace once a plan is in place and underway.

    mkn86...TNBC is a tad more aggressive than some other BC's...but it's VERY TREATABLE and responds quite well to treatment. Keep the faith. There are MANY 5 and 10 year (and more) survivors on this thread. If it seems like there should be more it's because they've gotten on with their lives and are surviving and thriving so they don't always visit the thread as often. You're going to be OK. Stay strong. Keep the faith.

  • mkn86
    mkn86 Member Posts: 250
    edited August 2017

    thank you ALHusband for the encouragement. :)

    The second I read somewhere that TNBC responds well to chemo, it felt that was all I needed to know in order to go through treatment. On some days a little bit of impatience surfaces.. "let's do this! let's shrink this tumor" :)

    It's also great to be able to talk to people about this who are going through the same things


  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited August 2017

    stre , I was awake for my port insertion, it was pretty easy. I don't react well to anesthesia (nausea) so I had them use a patch behind my ear, scopolamine. Works like a charm!

  • VLH
    VLH Member Posts: 1,258
    edited August 2017

    Rdeesides, I had a genetic test (Foundation One) because my biopsy showed HER2+ while my lumpectomy tumor pathology showed triple negative. Unfortunately, it didn't classify my tumor as far as the categories mentioned in the article you shared. I don't have the BRCA gene, but none of the mutations I have appear to have any trials ongoing. Hopefully, treatment and my body's ability to fight the cancer will prove sufficient to prevent mets or a recurrence.

    Lyn

  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Rebekah, that was an interesting read, Maybe ask your doctor about it? I may even ask mine at my next chemo session.

    Welcome to the newbies, so sorry you are here. this forum has been great for support *hugs*

  • TifJ
    TifJ Member Posts: 1,568
    edited August 2017

    Hi Ladies! I don't post much anymore, but like to stop in every now and then especially when my "cancerversary" comes around. Tomorrow will be my 7 years from diagnosis. It does get better ladies - no, the fear never goes away, but it does lessen and you will begin to live life more like you did before. Best wishes to all the newly diagnosed- you won't find a better group of ladies and men to help you through the nightmare. A big hello to all the wonderful ladies I went through this with!

    Re: Cocker (Annie)- I am in a private Facebook group with Annie. She has had a rough go with treatment, but is hanging in. She commented as recently as 8-25. I will let her know you are all thinking of her and encourage her to post if she is up to it!

  • Cathytoo
    Cathytoo Member Posts: 667
    edited August 2017

    TifJ...thank you so much for posting and BIG CONGRATULATIONS on your 7 year cancerversary. Do you count from day of diagnosis or last day of treatment? October 15th will be two years since I found that little lump while showering. You are right about the fear lessening, but breast cancer is my first though when I wake every morning. It's just sooo hard to make this journey. I wish you many, many more years of continued good health.

  • TifJ
    TifJ Member Posts: 1,568
    edited August 2017

    Cathytoo - Thank you! I count from my diagnosis date as my oncologist did. It is not first on my mind anymore, however, it is there everyday when I get in the shower and see one reconstructed breast that will never match the other. Don't give up hope, you won't always feel this way. I look forward to my family's future and don't think "If I'm there to see it" like I used too. Don't get me wrong, I do think about it. The main thing cancer has taken from me is my peace of mind, but it doesn't rule my life anymore. Congrats to you on your upcoming 2 years! 

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited August 2017

    TifJ, - Thank you for your update ! Wishing you continued good health and good times!

  • mkn86
    mkn86 Member Posts: 250
    edited August 2017

    congratulations TiFJ! That's great news! :) you are an inspiration

  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2017

    Congrats to you TIFJ, glad to hear you are livin' life. And thanks for the info on Annie. I do wish she could post. I really miss her sense of humor.
  • ewu
    ewu Member Posts: 48
    edited August 2017

    Hi everyone, I was just diagnosed with bc last week and this morning my MO told me its TN, KI67 80%. I am 34 and am really really scared. I am not really familiar with TN. I just know it's kind of a worse type. Thanks everyone who post good message in this thread, I am reading very one of your posts now try to get some positive energy.

    I notice someone did surgery first followed by chemo, and others do chemo first. Does anyone know usually which one should be done first? I am trying to find a best plan and start treatment asap.

  • VLH
    VLH Member Posts: 1,258
    edited August 2017

    Thanks for the encouraging note, TifJ!

    Ewu, your MO and breast cancer surgeon should be offering you a recommendation based on the size of your tumor as well as the information you've already shared. An advantage of doing chemo first (called neoadjuvant) is that you can see if the tumor responds well to the chosen drugs. In addition, shrinking the tumor first may make a lumpectomy easier if that is an option for you.

    We understand how overwhelming it is. Know that this forum will prove a great help.


    Lyn

  • MakeupLover
    MakeupLover Member Posts: 64
    edited August 2017

    Congrats TifJ, you give us all hope!!

  • Swedish_Girl
    Swedish_Girl Member Posts: 13
    edited August 2017

    Ewu, I had a very similar diagnosis, 2.1 cm in the right breast and got the recommendation to do a lumpectomy with oncoplastic technique asap and then chemo (ec + docetaxel) + rads. I'm doing rads now. For me it was a relief to know the cancer was gone after the lumpectomy. I also had sentinel node biopsy during the lumpectomy which came back negative. I think they recommend chemo first here in Sweden if the tumour is larger or if there are positive nodes (lumps that are palpable or seen on ultrasound).

    I'm very happy with the cosmetic result from the lumpectomy so far, I have a scar on my boob, but otherwise it looks normal in shape and size. I couldn't hope for any more than that.

  • georgie61
    georgie61 Member Posts: 95
    edited September 2017

    Hi there everyone. I hadn't checked in for awhile, and of course when I do I'm always sorry to see young newbies joining the "club". I remember how scared I was in those early days. I was diagnosed 2 1/2 years ago and it seems like all of the news was bad. Breast cancer - Triple Negative - Aggressive - Lymph Nodes positive - I remember I felt like I had one foot in the grave.

    Well, I just had a yearly check up and got a clean bill of health. YEAH!! Also, I wanted to tell all of the people that are newly diagnosed how well TN can react to chemo. I did neoadjuvant chemo ( before surgery) and it was palpably smaller after the first chemo treatment - and the golf ball sized lump that was there before was seemingly gone after the second treatment. My MO actually said it was the fastest "shrinkage" she'd seen - which prompted all sorts of "Seinfeld" references to the shrinkage.

    Needless to say, I continued going after it aggressively. I did all my chemo, did a double mastectomy ( my choice) and radiation. After surgery they told me I was a PCR ( Pathologic Complete Response)

    Every once in a while I can get negative feeling and imagine it recurring, etc...but we just got back from a 9 day trip to England and I don't think I even thought about it once. For the most part, it really is life as usual. Maybe even more grateful for birthdays ( 2 weeks ago) and getting older- I just turned 56.

    My best advice would be to make sure you completely trust your doctors and just do what they say. I got excellent care and always felt they had my best interests at heart. Also, let people help you if offered. I was shown so much love, and it brought me closer to family and friends.

    Anyway, enough rambling from me. I wish the very best and if anyone who is newly diagnosed and scared wants to PM me to ask specific questions I will do whatever I can to answer them. Love, Marcy ( my name Georgie61 -is from my great grandma Georgia who was SOOOO strong - I wanted to channel her strength in the early days!)

  • mike3121
    mike3121 Member Posts: 410
    edited September 2017

    PCR ( Pathologic Complete Response) are rare, only 5% I understand. Glad for your good fortune. My wife's ER+ turned triple negative. She's on Xeloda and her last PET/CT scan showed the smaller lesions gone and the remaining ones with reduced SUV. The SE's from Xeloda can be a bear at times. Hands and Feet, sensitivity to light etc.

    Mike W.

  • Teka
    Teka Member Posts: 10,052
    edited December 2017

    TifJ,

    Thank You for the Cocker update!

    I remember as a Newbie the Oldies uplifting words kept me from going down the rabbit hole.

    Today, my yearly MO visit went okay.

    May everyone have a fun Labor Day weekend............last call for Summer!

    A neighbor posted the following bale of old hay pic on Facebook.

    image

  • Meadow
    Meadow Member Posts: 2,007
    edited September 2017

    Getting caught up on everyone tonight, I am seeing some newbies (Welcome!) and some who have not posted in awhile, good to see everyone. As Al said, some of us are absent for awhile as we get busy, it is a good thing, really. I wanted to chime in about TNBC being receptive to chemo...mine was, after one treatment my tissues responded very strongly, and my oncologist was very excited. So take great encouragement in knowing this, and do not fear the TNBC diagnosis.

    My son is getting married in 3 weeks, and we are getting really excited for a big fun barn wedding. I want to lose 10 pounds by then...so I am going to really try to stop eating so many carbs! I love chip and dip, pizza, toasted english muffins...I could go on and on...oh forgot to mention sausage and cheese biscuits...

    What is your weakness food wise?


  • ewu
    ewu Member Posts: 48
    edited September 2017

    VLH, thank you for your information and encourage. My tumor hurts, I don't know if it's the same for anyone else, and that's one of the reasons I'd prefer surgery first. My surgeon and MO both think it doesn't matter which one to perform first so they told me it's my call. I am trying to see other people's experience and make a decision asap.

    Swedish_Girl, I agree with you. With the tumor gone, I'll definitely feel better, at least mentally. Right now the tumor reminds me constantly it's there. You are almost done with your treatment. Good job!

  • mkn86
    mkn86 Member Posts: 250
    edited September 2017

    hi everyone, is there a way to know if the cells have broken into the skin? I hope this isn't a stupid question.

    i am still about to look for doctors this week (finally made it home!) but i noticed the skin over the area of the tumor is becoming more red every day. :(

  • VLH
    VLH Member Posts: 1,258
    edited September 2017

    Great news, Georgie61. The vacation sounds super.

    Ewu, my tumor was painless so that wasn't an issue for me..

    I'm finally starting radiation next week. I'm 15 months out from my diagnosis so hope I'm not risking side effects for nothing. My tumor was on the left so I'm driving farther to access an RO who is a breast specialist and offers prone positioning. Node negative, I'll be able to have 16 sessions after a "rehearsal" appointment. I've had delays and complications every step of the way so hope this will go smoothly.

    Lyn

  • NavyMom
    NavyMom Member Posts: 1,099
    edited September 2017

    ewu: I didn't even know I had a tumor....then a routine mammogram and it blew up! I don't really know what happened but I had swelling, pain and a discoloration(reddish brown) until I had an excisional biopsy (lumpectomy) approx 4 weeks after original mammo.. Don't be afraid to explain your pain and redness when you call to get an appointment. Squeeky wheel gets the grease.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2017

    Ah Meadow. Favorite food? Fresh Bread, crisp bread oh and more bread. Potatoes all ways, fried, steamed with herbs, mashed, baked. Carbs and more Carbs.

  • adagio
    adagio Member Posts: 982
    edited September 2017

    ewu - my very first sign of cancer was pain in my breast (although no doctor or myself realized this at the time) - this was felt 8 months before any lump became evident. It was a big relief to have the tumour removed - after that - no pain, thank God.

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited September 2017

    Meadow, - Have fun with the wedding prep, and of course, at the wedding, too!! Enjoy and take lots of pics!!

    Hope all here are having a good Labor Day weekend! A little cool and rainy here in NYC, - but will be sunny tomorrow!

  • Sam0623
    Sam0623 Member Posts: 110
    edited September 2017

    Hi ladies (and gents)- I posted this on another thread, but realized maybe I should have posted here as more people come to this one. I just had my BMX on Friday, and found out one of the 4 sentinal nodes she took out tested positive for cancer. This was a surprise for 2 reasons- I have always been considered clinically node negative, and I had neoadjuvant chemotherapy so I thought worst case scenario they would find fibrosis from old dead cancer cells (because my tumor appeared to respond pretty well to chemo ). I'm curious for those of you with positive nodes, how many of you had positive nodes after chemotherapy? Did they always think you had positive nodes, or were you surprised at surgery? To be safe, I had a fully axillary dissection done, so I will find out next week if there was more than 2 nodes. If the node had fibrosis it in, would it still be considered positive? I feel so defeated after this news 😓 In one way I'm greatful she took more than 1 or 2, because I see some of you were only tested for 1 or 2 which would have given me a false negative, but I can't help but feel totally doomed.

  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited September 2017

    Sam0632, I too didn't have what they call a pathologically complete response to my neoadjuvant chemo. I didn't find out until after surgery either. As for the nodes, my BS thought some looked larger at first diagnosis ut chemo must have taken care of them as she took out 7 and none showed cancerous. I remember feeling blindsided about the residual cancer too tho.

    You may want to read up on Xeloda. It's a 6-8 month treatment that may lessen your TNBC nonPCR recurrence rate. There is a discussion board for those of us taking it at Xeloda and TNBC. I'm sorry you have to deal with all this,but there is always hope.

    https://www.breastcancer.org/research-news/xeloda-...


  • Shopgal2
    Shopgal2 Member Posts: 649
    edited September 2017

    happy sept ladies. I am just checking in and updating. I had my surgery to remove my uterine cancer wed. Everything went well. They did an abdominal hysterectomy and were able to remove everything including my omentum and sample lymph nodes. I should get final pathology by next fri at the latest. My 1month post op is 9/26 and my team will plan my treatment. Chemo is a definite; notsure if radiation is during or after.

    I will say the surgery was a long 4 hrs and the recovery in the hospital went smooth. I came home sat afternoon and am trying to rest, regain my energy, and minimize the pain. I'm just dealing with the post surgery constipation made worse by having abdominal surgery. Let's just say the vertical incision is a bitch.

    Meadow I'm so happy to hear wedding news.

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