Calling all TNs

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    You are so right. I have to apply what I've usually done in life to this point to myself. I was to start back to work this month, but it's delayed due to my mild stroke. Though it's part time, I personally know that time will help. I just always bounce back and wonder, how much time will I have. See, there I go again.

    It's when I settle down, and do some 'me' time, I do reflect more on the future than I used to. I have to sink into a different mind pattern. Just not so easy this time.

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited September 2016

    Val I just want to give you a huge hug. You will find your path and it will be carefree at times. Life is about living thru all the bumps in the road. It makes us who we are and shapes us. I am having a hard time since my mom passed 2 weeks ago. I am wishing for a year without anything bad happening. In 2014 I had a knee surgery and a month after I was caring for my mom who had a small stroke that resulted in my putting her and my dad in assisted living. The same month my mom had her stroke I had my mamo that originally said to repeat in 6mo that turned out to be cancer last May. Then a crappy year of surgeries, chemo and I finally thought this year that after rads I could put the bad ness away. Then mom died suddenly. It just makes me sad. I know that it's just life and it will get better. It just takes time. Take it one day at a time, one foot in front of the other. Enjoy each day and the people in your day.

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  • Batesburg
    Batesburg Member Posts: 199
    edited September 2016

    Hello All,

    I am having a difficult time getting past aches and pains and not thinking it is cancer growing in my body!!! I did NOT get a PCR for my little tumor in my breast and the spread to two of my lymph nodes (took about 21 lymph nodes and had 30 rounds of radiation after my BMX).

    Anyone else doing well even though you didn't get a PCR???? I keep thinking not getting a PCR is a death sentence. HELP!!!

    Janet

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    thanks so much everyone and especially shopgal2. I hope and pray for peace of mind.

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  • KQHill
    KQHill Member Posts: 50
    edited September 2016

    Hi, all! I've been absent from the Mother Board since joining a very supportive Facebook group of chemo sisters who started at the same time I did. However there's only one other girl who's TN and we're just so.... odd.

    AC is done, I just completed 8/12 Taxol, and now surgery options are my constant companion. Lumpectomy? Double mastectomy? If BMX, reconstruction or flat? If recon, nipple-sparing or not?

    Breast surgeon is very conservative and says lumpectomy is fine. I've always said BMX is the way to go if it ever came to it. I hate the thought of rads (and the 45 min drive each way on a good day for 6 weeks) but the "easy" lumpectomy sounds nice.

    BUT... what if the cancer comes back? If I did the lumpectomy would I be upset I "didn't do all I could've done" or if I have the BMX and it comes back, will I feel betrayed I did "everything I could" and it still wasn't enough?

    Around and around and around I go.

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  • hanley50
    hanley50 Member Posts: 146
    edited September 2016

    Janet (Batesburg)- First of all, hello! I see you were DX in June of 2015. I'm still in treatment so I have no words of wisdom for what happens "after." I wish I did. I can tell you that I had neoadjuvant chemo followed by UMX and I did not acheive PCR. I am currently in RADS.

    Just from reading these boards, I have come to find that there are a lot of TNBC women that did not have PCR and have gone on to live many happy years. Hang on to that hope and keep following up with your doctors. I know...easier said than done! Keep on posting!

    Maryann


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  • hanley50
    hanley50 Member Posts: 146
    edited September 2016

    Kimberly (KQHill) - Hello! It is nice to meet you! No words of wisdom, just my experience (my really crappy experience!)

    The choice between Lumpectomy, UMX or BMX is very personal. I wanted BMX and was authorized by insurance and scheduled for surgery 06/16/16. Then my A-hole employer terminated me on 05/20/16 (my FMLA had run its course.) This then terminated my (and my families) health insurance effective 05/31/16.

    Fast forward to 06/01/16...we scrambled and figured out how to get coverage ASAP under my husbands HMO (I had a PPO at half the cost) and get all of the referrals in place (I really hate HMOs!) I got a call from my BS office a few days later...HMO does not want to cover BMX due to being BRCA negative! They will only cover UMX. Foolishly I went ahead with UMX (no one advicated for me, not even myself) and I did not acheive PCR (not even close!)

    What I learned the hard way...you can start with a lumpectomy and then move on to UMX or BMX. You can't go backwords. As I sit here with one boob and no hair, I wish I had started with lumpectomy! Lumpectomy was never even a consideration for me personally until after I had UMX and it was too late. Should of, would of, could of.

    Even with UMX or BMX it is not a gaurantee that you will not need RADS. I am living proof of that. What happens if you don't achive PCR after neoadjuvant chemo....RADS!

    Keep researching and find the best option for you!

    Maryann


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  • hanley50
    hanley50 Member Posts: 146
    edited September 2016

    Val and everyone else! This SUCKS and I hope someday we will all be able to move on with peace in our hearts!

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  • Batesburg
    Batesburg Member Posts: 199
    edited September 2016

    Hi Maryann, so nice of you to respond as you did!!! I realize that many may not know of their PCR status given not too long ago many had surgery first and then chemo! But, any more stories of known non-PCR survivors would be wonderful!!

    I know every one is different but so good to hear how everyone is doing going forward!

    Yes, live in hope and live fully today. Its truly all we've got. We, as TN survivors, get that more than most, I suspect!!!

    Cheers to making TODAY fantastic!

    Best to you on finishing up your RADS (I had 30 sessions- quite exhausting in their own way) and getting on with the JOYS in life!!!

    Janet

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    BTW Maryann I love your new profile pic. It's you. We have different looks for what is going on in our lives... I plan to update my pic as well.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited September 2016

    I had DCIS and IDC. Surgery, then chemo. Then a re-excision which got the rest of the DCIS. So does chemo not work on DCIS or am I considered to not have a pcr?

    Day 5/30 of rads tomorrow. Decided to drive 4 days this week and spend one night in Seattle. 82 miles each way. :-

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  • KQHill
    KQHill Member Posts: 50
    edited September 2016

    Maryann, I'm so hoping to be ONE AND DONE but I know better. I had weight-loss surgery 2 years ago and planned a full mommy makeover for goal weight yet now I'm fussing about drains, which I've already had before and did just fine. Only one, but still. Heck, I had my WLS in Mexico and went alone, much to my husband's distress and anguish.

    Your employer sucks eggs, by the way. That's no way to treat people.

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  • blamoms
    blamoms Member Posts: 113
    edited September 2016

    hi KQHill


    Welcome to the board. It's a great board. I had a lumpectomy in Dec. I went back and forth about it but after talking to the doctor I decided to do it. I feel happy with my decision. I did AC and Taxol finished that in June and did 4 weeks of radiation in August. The worst week for me was week 3 when my skin started to burn.

    I am hoping this is a one time thing but who knows we don't have a crystal ball. You will make the right decision go with your gut is the best advice I can tell you. Good luck

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  • ALHusband
    ALHusband Member Posts: 344
    edited September 2016

    KQHill I didn't see it mentioned whether you had a BRCA test. Please make sure you do if you haven't. Being positive for BRCA makes the decision for you. BMX is the way to go. My wife had a lumpectomy PRIOR TO BRCA testing. THEN they found out she was BRCA2 positive so they had to do the BMX.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    Welcome KQHILL, sorry you had to find us, but this is the best place to be.

    Just came back from my first 'routine' MO appointment. She said no need to see her for six months. No scans unless I have symptoms. I still have tons of therapy to go through due to my stroke, but she finally said I am NED (She says she does not use remission or cancer free, but I can if I want lol to that)

    . Based on all the scans I've had to have with the hospital stays of the last 2 months I guess it's a good thing I had them all.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited September 2016

    BIG NEWS TODAY‼️

    http://dfw.cbslocal.com/2016/09/14/unt-researchers...

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  • LifeAloft
    LifeAloft Member Posts: 150
    edited September 2016

    Thank you for sharing Cathytoo!!! Great news!!!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited September 2016

    That is awesome Cathytoo!!

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  • VLH
    VLH Member Posts: 1,258
    edited September 2016

    Thanks, Cathytoo. I wish they'd identified the drug. I found this:

    https://www.thesun.co.uk/living/1773241/drug-used-...

    The brand name of the drug is Actos.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited September 2016

    The drug name is Actos.

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  • VLH
    VLH Member Posts: 1,258
    edited September 2016

    In stereo, LoveMyVizla! I took Actos years ago. The main thing I recall is that it made my skin really greasy. I don't recall any other adverse symptoms.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    Also there is a mass lawsuit about Actos causing Bladder Cancer. As late as 4/16 it's under FDA review for causing bladder cancer.

    My MO and I discussed it at length. There are also studies about metformin that look promising. Maybe that's what it was really developed for, to kill cancer rather than help with diabetes.

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  • VLH
    VLH Member Posts: 1,258
    edited September 2016

    Bladder cancer? :-p

    I've taken Metformin since 1995 & still got breast cancer, but it may help the newly diagnosed.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited September 2016

    VLH, I too have been on metformin for a few years before dx. So I was surprised at new studies saying it can help prevent recurrence. Never know.

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  • Batesburg
    Batesburg Member Posts: 199
    edited September 2016

    Hello All,

    Happy Saturday!! Quick question....anyone else noticing that the pressure points in the palms of their hands get red easily (from holding a cup of coffee or a heavy bag with handles) that eventually go away? Perhaps I've always had this but seems so much more pronounced!!! Could it be continuing SE of chemo from 9 months ago or something else??

    Anyone else experience this???

    Thanks!

    Janet

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  • Zenful
    Zenful Member Posts: 599
    edited September 2016

    Batesburg, happy to report I am 3 1/2 years past diagnosis. I had neoadjuvent chemo followed by BMX. Chemo had shrunk the tumor, but no PCR. I chose not to do radiation because my sentinel node biopsy was clear. I try to live and think positively, hoping my body will follow my mind.

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  • KQHill
    KQHill Member Posts: 50
    edited September 2016

    Hi, all! Sorry, I should've included that I'm BRCA negative.

    Monday I'll be meeting the BS for an ultrasound and letting him know I've decided on BMX. Talking to the MO before chemo on Thursday I told him I was preparing for a fight with this info. The MO held my shoulder and said "they're your breasts, not his." I know that, but hearing him say it helps, especially because they work so closely together.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited September 2016

    Hi All,

    Hope you are feeling and doing well!

    I need some input from you. I just went to my primary care dr for checkup. He felt a thickening, or something, on my upper chest, below collar bone, and sent me for chest x ray. They took 2 pics. I hate being exposed to radiation now, but I went anyway. He also suggested I call my onc. I am awaiting a call back from onc's office to see if she can squeeze me in before my next scheduled appt on Oct 21.

    Dr should have x ray report by tomorrow.

    In the mean time, I am soooooo nervous. Wondering if any of you had/have scar tissue where port was? That is what I am HOPING this is, but back and hip aches the last couple weeks are fueling my panic right now.

    Any one have anything similar?? My port was removed almost 2 years ago.

    THANKS!

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  • SA8PG
    SA8PG Member Posts: 371
    edited September 2016

    Hi Another

    Just wanted to say I am thinking of you & sending you virtual prayers & hugs. This crazy disease sends us into spiral mode so fast. Grrrrr. Remember, we are here.

    The TNboards have been quiet. Thinking of everyone & so thankful for the stories we get to share.

    Have a great week.


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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited September 2016

    Thank you, SA8. Be well wishes and hugs back to you!

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