Calling all TNs

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  • MomMom
    MomMom Member Posts: 523
    edited February 2015


    Dear Ally, Luv, Shari, Arlene and anyone else going through testing and worry right now.  You are all in my prayers. 

    I think your issues have all of us feeling our breasts (LX & MX scars) and questionning ourselves (does this feel the same/different??) and second guessing ourselves.  Ugh.  We are right to be diligent, but no wonder the results of a recent study that indicated we TN'ers worry more than any other group of bc survivors.  May this new vaccine soon to come to clinical trial be the beginning of a viable treatment for us - no matter how long it takes.

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2015

    Ally, the radiologists assessment sounds encouraging! Hang in there and we'll be in your pocket tomorrow. XO!

    Just got home from my ultrasound. I held my pee, thank goodness! The Tech told me the radiologist didn't think anything was worrisome but did see a small cyst on my right ovary. Doctor will have results today but she's usually not in on Wednesday OR Friday. They will most likely be closed tomorrow because we're supposed to get 8-12 inches of snow tonight! So I don't know if the other doctor where mine is will call me or not. So I really don't know what to think right now. I want benign results for sure but we still won't know what's causing my pain.

    I'm worried about my mom too. For about a year she will sometimes get choked on solid food and vomit. She hates going to the doctor but Tuesday she was in a lot of pain under her ribs where her bra strap hitson the right and spiked a fever so she went in today and doc told her it's either gallbladder or pancreas. The did an ultrasound and said they didn't see any stones in her gallbladder. He gave her antibiotics and pain killers. I'm worried sick and upset she didn't go sooner about her gagging issue! She has to get a scope after her other inflammation and infection settles down.

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  • PeggySull
    PeggySull Member Posts: 686
    edited February 2015

    Simplelife4,

    Were you tested for androgens? I only had the E, P, and Her-2 tested and I was negative for all three.

    Thanks for the link!

    Hugs to all awaiting surgery or going through chemo and radiation.

    Peggy

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2015

    Ally, Hang in there.

    Simple, I am so sorry about the power. And now, Alvin the Chipmunk has moved in. good grief.

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  • Tobycc
    Tobycc Member Posts: 789
    edited February 2015

    Okay: got the call from MO to schedule a full PET scan. I have not asked, as I have been freaked out thinking about it.

    I figure it is normal protocol--- I have second to last treatment Friday before rads.

    Everyone else have one? I was told no carbs/ sugar day before which is not a big deal.

    Kath

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  • Allydp
    Allydp Member Posts: 520
    edited February 2015

    Luvmydobies - glad the US went well. It's great to hear the radiologist wasn't concerned, but I hope you get official results soon. I would call and explain what the scan is trying to rule out and ask if there's anyone else that can give you results. That's what I did for my femur today since the doctor was out sick. And I'm so sorry to hear about your mom. I hope they can get to the bottom of things quickly and it's nothing serious.

    Toby - I had a PET back when I was diagnosed, but only because my breast MRI showed masses on my sternum and spine which were originally thought to be mets. To avoid invasive bone biopsies, they did a PET first. Thankfully they didn't "light up," so they were deemed benign. Are you having symptoms or is your MO just being thorough? I would have loved a PET scan after treatment just to make sure it was gone. I've never heard of the no carb/sugar thing beforehand, but glad they're covering the bases to avoid false positives.

    Another quick update - I got the femur results. No cancer, but she said I have significant nerve issues. She couldn't say what exactly, as she was only allowed to tell me the cancer part. I have a follow up next week to go over the report. I actually don't mind hearing the nerve stuff. It would explain some of my pain. I hope the good news keeps coming!


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  • eileenpg
    eileenpg Member Posts: 467
    edited February 2015

    Kay= Come back to Fl. Super nice here now. Good luck with the chipmunk.

    Just an FYI. You all may know this. I went for my post cancer check up with my original MD's in Maryland. Everything well super.Another A+. Had a 3D mammo. They read it right while you are there and then you talk to the radiologist and she shows you your results. Anyway,she suggest (now this was for me) but,may for others too. My MO only wants me to get a 3 D mammo once a year. She suggest a mammo once a year and then in between a MRI. She told me if you have dense breast this is the best way to determine if anything is going on.So,that is what I am going to do. Also, my low white blood count will take a LONG TIME to recovery. Says my biggest problem is now being able to fight off the normal flora in my body. Go to the hospital if I have a temp over 100. Can go to movies,pools,etc. I get my blood drawn weekly now and get a nuepogen shot.

    My MO suggest 2000 units vit D3,calcium 600 units 2 x day. He would put me on Metformin if I want to go on it. Only other suggestion is keep a sense of humor. Drink in moderation,exercise and DO NOT let worrying take over your life. Said he would see me in 6 months.

    Keeping everyone in my thoughts about upcoming tests and surgeries. I hate this has become part of our lives.

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  • slv58
    slv58 Member Posts: 1,216
    edited February 2015

    Arlene, I hope you are doing well, I'm thinking of you and sending positive hugs. Try and relax and do some deep breathing-you can remind me when it's my turn ;-)

    I hope you sleep well and your dreams are filled with a beautiful cancer free body! Know we are all with you giving support and love.

    Shari

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2015

    Ally Thanks for the good news Thank you God forthe good news

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  • greenae
    greenae Member Posts: 540
    edited February 2015

    Thank you, Shari

    Getting ready for bed now. Feeling calm. Tomorrow night I will be resting and Cancer-Free! Praying for No Nodes!

    Thanks so much for all your kind words and advice. We Got This!

    love, arlene

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  • Gramof2boys
    Gramof2boys Member Posts: 194
    edited February 2015

    Good luck, greenae! Will be thinking of everyone who is waiting and having tests and surgery this week! Been there, done that!!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2015

    Ally glad you got some good news!

    Arlene thinking of you today. You'll be fine!

    Toby let us know when your PET will be.

    Eileen sorry about the blood counts. Keep us posted!

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited February 2015

    Phew....  I have to say, reading these posts makes me want to scream for you all!!!  Swear, scream, jump around and punch something!  You all are so upbeat and positive - I know we have to be, but some days this disease SUCKS!  I hate, hate, hate it!  I hate the waiting game for results, I hate watching loves ones worry, I hate it so much!!! AUGH!!!!   Sorry, I just had to vent and get that off my chest.  Don't mean to be a debbie-downer, it just seems so unfair!

    Arlene - warm thoughts for you today!  I have to say, my MX was the best day of my life.  Crazy - I know, but to know that it was out of me was such a relief.  I pray that you have as caring a staff as I did, and that you have a quick recovery. 

    Ally - you are in my thoughts more than I can explain.  I pray for you, for all of this to be the best outcome, and for you to be able to live a full, loving life.  (I know you are, but I pray that all this cancer mess would just go away for you... that you can be a "typical" 30-something - whatever that means, hahaha)

    Toby - I had a PET before my treatment.  I was node positive so they were just making sure I didn't light up anywhere else.  I wish I would have had it after my chemo, just for piece of mind that I am all clear. 

    Here is a question for you all:  I work with a very young lady who's mom and aunt both have BC.  Her mom is TN.  Turns out it is BRCA positive.  She is going to test for the BRCA mutation.  What advice would you give her?  I have told her that knowing if she has the mutation is power and then she will know how to monitor her health.  But do any of you have any other advice?  I know there is a better spot for this question, but, I like this site best :)  You ladies have a way of giving the best advice ;)

    To all waiting results, waiting for testing, in treatment... you are in my thoughts and prayers

     

     

     


     

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  • BanR
    BanR Member Posts: 289
    edited February 2015

    hello...

    am back ( again )!! after days of chasing the weird problems which had come up...dizziness, palpitations, breathlessness etc the diagnosis finally arrives. Its not vertigo. Rather its a cardiac problem which has coincidently come up after chemo. Doc says he will not blame the anthracycline drug adriamycin. Some women do develop cardiac problems post this but then thats years after and not just 1 year after chemo. So thats it...at least it got diagnosed correctly this time. In the meanwhile they are training the body to produce progestrone on its own. From tomorrow ..running behind another issue begins..both breasts suddenly getting painful! So, lots of hospital visits happened the last 2 months!

    happy to read all your messages as usual..

    cocker..happy to hear that your follow up went on fine.

    simple..glad to know that you do visit milwaukee once a year. will be wonderful to meet ....after having talked for days n days here!!

    best wishes and love to everybody..

    thanks for sharing your notes and stories and pictures of those gorgeous dogs!!





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  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2015

    BanR, that's good news that it's not cancer. I hope the cardiac issues aren't too serious.

    Ally, I'm also glad that so far all the tests have come back negative for cancer. It will be interesting to learn about the nerve damage. Please let us know what you find out. You are right, it would explain the issues you have been having.

    Arlene, hoping all goes well. Be gentle with yourself as you recover from surgery. Pain pills will be your friend. gentle hugs.

    Peggy, I did not get tested for androgens. I don't think that is routine at this point.

    Toby, different doctors have different protocols at the end of treatment. I hope the PET scan comes back "unremarkable" and is a source of comfort to you as you move forward. Wishing you the very best.

    Eileen, sounds like you had a very informative check up with your MO. I do wish I had stayed in Florida for another month.....this has been a bad February...almost as bad as last year when I was recovering from chemo and had my surgery. Good thing that Feb. is a short month.

    We are on day six without power at our house. Fortunately, the timeshare where we are staying is nice. We were also able to get rid of Alvin (the chipmunk) yesterday so that's one less problem to deal with right now.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited February 2015

    Ally, - waiting for more good news from you! ( What will they do for your nerve pain?)

    Arlene, - thinking of you today and looking for update! Hope you are done and starting your recoup!!

    Simple, - hope your power is restored soon!

    Ban, - hope you are feeling better!

    Sending BE WELL wishes to ALL!

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  • slv58
    slv58 Member Posts: 1,216
    edited February 2015

    boy, it's getting hard to keep up with everyone! Arlene thinking of you all day today. I hope surgery went well and you are nicely doped up on meds! Sleep well hon, we are thinking of you

    BanR, hoping that your cardiac problem is easily resolved.

    Eileenpg, glad you had a great checkup! That 3D mammo sounds cool. Your lucky you get results right away! Keep it up and celebrate!

    Ally, I hope your nerve pain is easily resolved. I was left with a lot of bone pain and get prednisone shots. Apparently it is oestioarthritis so I don't know if chemo made it appear sooner- I'm 'only' 56 ;-)

    Luv, I hope you get good results from US I also hope your Mom is ok, hugs to both.

    Toby, I have heard of a lot of mo's who like to check with a PET scan, I think it's normal for some treatment centered.

    My 3 apts. we're moved up to this mon. Apparently my team went over all my results and it appears there is skin and muscle invasion. If my BS can't get good margins, then I'll have rads again. No word on chemo. I'm not really sure what this all means, but it doesn't sound good- unless it is normal to get invasion in those areas when it recurs at scar? I'll get more answers mon.

    I hope I havnt missed anyone- with all this on my mind I find my concentration isn't very good.


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  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2015

    Shari, I'm sorry to hear about the skin and muscle invasion. I have heard of people getting rads more than once....it's not common, but it does happen. I'm glad your appointments have been moved up....less waiting time. ((hugs))

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited February 2015

    Shari and Luv, - I realize that I left you (and others) out of my previous post, - nevertheless you are in my thoughts and i send all best wishes to you, too!


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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2015

    No worries anotherNYCgirl!

    I haven't heard any results today because of the weather. Power was out all morning and my doctor's office was closed. Lots of trees down. Snow is pretty but what a mess! I'm more worried about my mom right now though. PLEASE PLEASE pray for her. Her name is Carolyn Jones.

    BanR, sorry about your cardiac issue but I'm glad it's not Cancer!

    Arlene you've been on my mind all day! Hope you're resting right now.

    Shari, Thanks for the hugs. Right backatcha! I'm sorry about the skin and muscle invasion. I hate it for you! You're in my thoughts and prayers. At least you should have a plan by Monday. Hang in there

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  • Allydp
    Allydp Member Posts: 520
    edited February 2015

    Shari - I hate that you have to play this waiting game after hearing the news about the skin and muscle. I wish they could just fit you in today and give you the details and a plan. When I was considering rads, I asked one of the rad oncs about radiating an area twice. He said it can definitely be done, that it's a case by case decision. So if your rad onc says no, perhaps you could seek another opinion - just so you'll have another tool in your arsenal. You are in my constant thoughts. Keep updating so we know how you're doing.

    Arlene - hope yesterday went well. Keep up on those pain pills and let us know how you're doing when you can. Sending you gentle hugs.

    Curly - that is actually how I truly feel deep down inside, but I have to put on a brave face and stay positive or I'll lose it. So thank you for expressing those feelings! I'll live vicariously through you for a minute lol.

    Ban - so sorry to hear about the heart issues. I'm glad they got to the bottom of things, now they need to come up with a good treatment plan!

    For those that asked about my possible nerve pain - I'm not sure how they will treat it. I haven't asked at all about treating the pain since I've been so hyper focused on finding out what the heck it is. I've had this very specific pain for 9 months now...same exact spots...so something is going on. Cancer or not cancer, this isn't some fluke. When it first started my onc gave me 100 mg Gabapentin. I took it for a couple months and it helped some. When I finished chemo, the pain wasn't an every day thing anymore, so I stopped it. I just started it again last night. Worth a shot, right? If it helps, I'll ask for a refill. It's supposed to help with hot flashes too, which would be an awesome bonus. I'm supposed to hear biopsy and bone scan results today. I'm glued to my phone and will keep you all posted. Thanks again for hanging in there with me.

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2015

    Alicia, keeping my fingers crossed for unremarkable results for you today.

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  • Allydp
    Allydp Member Posts: 520
    edited February 2015

    Curly - I forgot to mention, there is a wonderful group on FB called BRCA Sisterhood. It's for women who carry the BRCA gene. Some of us there have had cancer, but a lot of the women have found out about their gene prior to a diagnosis. Most of them choose to undergo the prophylactic surgeries, but some are also monitoring. I think your friend would be very welcome in that group. A lot of women come there and ask questions about the testing, etc. Hopefully she's negative and doesn't become a full time member though :)

    https://www.facebook.com/groups/brcasisterhood/

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  • slv58
    slv58 Member Posts: 1,216
    edited February 2015

    Ally in your pocketwaiting with you, hope you get that call soon.

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2015

    Thinking of you Ally.

    Just FYI, I have a friend who's going to be on 20/20 tonight! She was a juror on the American Sniper killer trial. She is a 20 year Triple Negative survivor!!!

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  • Allydp
    Allydp Member Posts: 520
    edited February 2015

    Just spoke with my BS. It's good news and not so good news. Good news is the mass in my mastectomy scar is benign - surgical changes she said. Not good news is they still can't tell what the deeper mass is. I guess they didn't get a good enough sample. Radiology is recommending surgical removal, but I got the sense my BS wasn't thrilled about that option. It's going to be tricky since it's so close to my implant. I'm ecstatic about the benign result so far, but I cannot believe I have to wait longer for the full all clear...and I REALLY can't believe I have to have another surgery. This will be #5 in a year. She did say, however, she thinks it's highly unlikely it's cancer, so I'm hanging on to that.

    Luvmydobies - I LOVE hearing about your friend! And how exciting she's going to be on 20/20. I'll definitely watch tonight or DVR it. Would you mind telling us how we'll know which one she is?

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited February 2015

    Ally, - I am SO thankful that your news has been GOOD, - just sorry that you are getting it in 'drips and drabs' instead of all at once! Take a deep breath. ( I doubt that your BS would give you false hope. I have found drs to be brutally honest when they need to be! )

    Luv, I will watch 20/20! As Ally asked, - how will we know who to look for? ;)

    Wishing everyone a calm, relaxing, and happy weekend!

    hugs from NYC

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2015

    Ally glad you got some good news. Hang in there though!

    My friend just said they did the interview but it's actually not airing tonight. She said there's more important news to report. Ugh! But she said they would let them know. So stay tuned and I'll let you guys know! Her name is Stacie Parks Matthews. I'll need to find out if they use their names and stuff. I'll keep you all posted.

    She was diagnosed at age 35, stage II, double mastectomy, chemo, no radiation. She hasn't really followed a strict diet or exercise regimine. But back then they just didn't know as much as they do now about TN. She's been really blessed. I was in high school when she was diagnosed and my mom kept her children for many years, and we became close.

    Also another lady that volunteers with the same rescue group as me is a 17 year TN survivor. She was stage II and had one lymph node involved. She had a single mastectomy, chemo and rads.

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2015

    Ally yes good news


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  • Msmath
    Msmath Member Posts: 77
    edited February 2015

    Allydb I have MS and Gabapentin was a lifesaver during several of my flare ups. I'm a little concerned because I have to come off my MS meds during chemo. They are concerned about taking too many immune suppressed meds. I haven't had an exacerbation in 2 years. Praying that the chemo drugs don't cause a flair up. I can handle only one illness at a time.

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