Calling all TNs

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited October 2018

    I can report that my breast tumor disappeared before my lymph node tumor did. Now they both appear to be gone but I believe that sometimes the secondary site is harder to get rid of. I read that this is so. Sometimes the cells are morphed, or there are more stem cells.

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited November 2018

    I don't post much, nor do I read a lot...……..so please if you want to talk (anyone here) e-mail me so that I will see it.   I am sorry that I cannot be here but my mind won't rest when I am.    Please reach out to me though if you need to talk.

    I just wanted to say that I am still cancer free at 7 years after  the 1st diagnosis and 5 years after the 2nd.   Thank God.  

    JUST WANTED TO OFFER SOME HOPE FOR THOSE THAT ARE SCARED AND FIGHTING HARD!!!


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  • KSteve
    KSteve Member Posts: 486
    edited November 2018

    I'll jump on Stupidboob's bandwagon too! I am here and doing great 8 years later. So grateful for my life. We just celebrated my daughter's wedding in September and my husband and I are planning to retire in 3 years (at 57) with lots of traveling plans before and after retirement (and hopefully grandkids at some point :). Can't wait for the next chapters of our lives! For those in active treatment now, I know it can feel like you don't want to plan too far in the future. But you will get passed that. Hugs to all!

    Kathy

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Thank you for sharing and Congrats Stupidboob and Kathy..

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  • Susan05
    Susan05 Member Posts: 20
    edited November 2018

    Thanks for sharing Stupidboob and Kathy. I'm just now starting this journey and scared spitless. (my mother died of breast cancer in 2003) It's really great to hear from people who have beat this beast and are still thriving.

    Hugs

    Susan

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited November 2018

    Hello Susan,

    I just wanted to say that I read your post and wanted to tell you not to be afraid. You can get through this journey like the rest of us have done. I can understand how frightened you must be with your mother having died of breast cancer in 2003. I was diagnosed in 2005 with triple negative breast cancer, IDC, and I am now 13 years and 4 months since diagnosis and am living a normal life. You can do this.

    Love.

    Sylvia xxxx

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  • Joy777
    Joy777 Member Posts: 15
    edited November 2018

    Just wanted to say hi at 2 years after the treatment.

    For me it was important back in the days to see people who didn’t disappear from here. I remember seeing someone’s last post/log in moths ago and thinking “something happened, for sure”

    So... hi! :)

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    beautiful, encouraging news!!

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Glad you stopped back in Joy777. Have a wonderful Holiday season!

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  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited November 2018

    Flynn - I had lost 20 pounds before Xeloda . . . and have gained 15 back. My oncologist suggested i take my nausea med from the earlier IV chemos twice a day as I was eating for comfort for my tummy (breads, crackers, simple carbs). I know better, but I craved them with Xeloda. I am at least holding now, and maybe losing a few pounds. If nausea/queasiness/icky tummy are problems for you, you might consider asking for a nausea prescription. Mine is Ondansetron.

    VL22 - I am amazed you can still run! My mother had rheumatoid arthritis which, thankfully, I do not. But my lower back and knees have become so painful post-IV chemo. After being sure my lower back was not TNBC, I have had two epidurals for pain and have found enough relief to begin exercising again. My knees are tremendously week, and when I'm off chemo (mine is a long path), I plan to give attention to them. I've had so many steroid shots I don't think I want to go that route again. BTW, I was still on the smallest dose of Minivelle (estradiol patches) when I was diagnosed. My hysterectomy at 40 put me into instant menopause, and I had to educate myself about "natural" hormones (vs Premarin, etc.) I'm 64, but both my gynecologist and my psychiatrist felt that remaining on this small dose of estrogen was OK since I had significantly reduced estrogen in my system beginning at 40. That was, of course, before TNBC. I weaned myself off the patches in three weeks.

    While I do take curcumin, I have learned through trial and error that I am gluten- and dairy-intolerant. Eliminating those from my diet resulted - in 5 months, not overnight - in considerable less pain/inflammation in my joints as well as ridding me plaque psoriasis that I'd had for 30+ years. And until I discovered all the delicious gluten-substitutes (breads, pasta, cookies), I also lost those 20 pounds.

    We CAN do this ladies. If, like me, you feel at least a decade older than you are, perhaps we can take consolation in simply being here. I'm not saying that quality of life does not matter - I'm just glad to be here.

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  • Flynn
    Flynn Member Posts: 307
    edited November 2018

    Thanks for the positive updates & good to hear from you Paula!!

    I’m moving on to Xeloda cycle 3. So far, so good. At this point, I’m trying to keep active and I’m deferring making significant progress on weight & joint issues until off meds. Getting ready to head out of town on a much needed mom’s weekend away with some very good friends.

    Sending good thoughts to all of you, wherever you are in this process!

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2018

    Greetings to Joy777. Thanks for stopping in. I've been on a break from the boards as well.

    Sending gentle hugs to all.

    Val

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  • SCVA
    SCVA Member Posts: 11
    edited November 2018

    just stopping in to provide encouragement...Stage 3c at diagnosis and now four years later still doing well...it a long road and side effects like neuropathy stink but you can survive this diagnosis and disease.

    God bless ladies

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    Yay SCVA!! That is wonderful to hear!

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    SCVA, congrats thankful to hear your doing well. Have a wonderful Holiday Season..

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  • VLH
    VLH Member Posts: 1,258
    edited November 2018

    I'm sorry abut the neuropathy, SCVA, but it's very encouraging to know that you're doing well. Thank you for sharing the update.

    Lyn

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  • SA8PG
    SA8PG Member Posts: 371
    edited November 2018

    SCVA yay on 4 years!!! Thank you for posting.

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  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited November 2018

    Thank you, SCVA, from a Stage IIIa still in treatment! Your encouragement means so much!

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    had my first 3 moths post treatment survivorship appointment today. Wasn’t really sure what to expect. Overall it went well. Just a recap of my diagnosis and prognosis as well as signs to not ignore etc... it was nice to be there and not feel like crap, I will say that. I thought I was feeling pretty good other than some early afternoon fatigue I often feel. My dr said most people don’t report feeling “normal” until 2-3 years post treatment sometimes. Guess I have a ways to go! Anyway, just checking in. I hope everyone’s is doing ok!

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  • Vslush
    Vslush Member Posts: 183
    edited November 2018

    Thank You to all who come back to post updates... It's so encouraging and comforting!

    Cccmc2: Congrats on finishing treatment! I didn't realize it had been three months already. As the year goes on, you'll start feeling more and more like "yourself", and not so much like a "patient". A year pfc I feel pretty close to pre-diagnosis.

    Vickki

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Cccmc2, Congrats about 3 months out.. what are the things you should not ignore?

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    undrago71,

    Without looking at my packet they gave me, what I remember is don’t ignore any type of chest pain or nausea, a constant cough with shortness of breath, and bone pain in a specific spot that won’t get better no matter what you’ve tried. And of course any new breast/chest area lumps and bumps. Most of these things I knew already.

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited November 2018

    Also a headache that doesn’t go away even if it’s so slight you might get used to it. I know it might sound obvious, but better safe than sorry.Congrats on 3 months :)

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited November 2018

    TODAY, THREE YEARS AGO...THIS VERY MINUTE I WAS IN SURGERY TO REMOVE A 2.5 MALIGNANT TN TUMOR. I was sure my life was over, that I had received a death sentence.

    TODAY IN A FEW HOURS, I'M MEETING A FRIEND FOR AN ANIVERSARY LUNCH‼️

    TO ALL OF YOU JUST BEGINING A VERY SCARY JOURNEY....I want to tell you there is hope, there are good days ahead.

    image

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    Cathytoo,


    HOORAY!!! Congrats!!!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    Way to go, Cathytoo!

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  • JennieKeaton
    JennieKeaton Member Posts: 80
    edited November 2018

    Had DCIS in 2012 (age 42. Left breast. Lumpectomy, radiation, Tamoxifen.

    DX Stage 1 triple negative, 8 mm in right breast through routine mammogram in September (age 47). No lump felt, even after we knew it was there.

    Double mastectomy with lat flap immediate reconstruction on 10.24.18. Negative nodes. Starting chemo on 11.27.18.

    No family history, BRCA negative.

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  • VL22
    VL22 Member Posts: 851
    edited November 2018

    cccmc2 - so glad to hear you’re feeling well! It can definitely take time - I’m 9 months out from treatment and would say I’m doing very well, but not 100%.

    Cathytoo - Congrats on teaching such an important milestone!! I’m so happy you got to celebrate with a friend!

    Jennie - were here for you. It’s such a hard diagnosis, especially at the start. Hugs to you.

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    WOOHOOO Congrats 3 years and many more, Cathytoo!

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  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    I am new to the forum. Just diagnosed in late Oct 2018. Found the lump myself by watching breast cancer awareness month commercials. Decided to check myself and I found a lump in left breast. I wanted to know from the TN survivors, did you receive chemo before surgery? Did you choose a lumpectomy and later had a reoccurence even being Braca negative? I am leaning toward a mastectomy. Did you need radiationafter a Mastectomy choice? My lump is 2.1cm grade 3, no lymph node action and Im 41 yrs old. No cancer history in my family. Just wanted to know what the choices were as far as lumpectomy vs mastectomy and the reasoning for that choice. Thank you

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