Calling all TNs
Comments
-
Thanks so much, everyone, for celebrating my pCR with me! When I tell people in real life, they aren't as excited since they don't really get it…through no fault of their own of course. I'm almost 2 weeks out from my BMX with TE's and feeling really good. All 6 drains are out and I've had my first fill. Neither of those procedures were fun, but I powered through. Now I'm back to trying to decide whether or not to do rads. I'm node negative, but my LVI was indeterminate, so my rad onc was previously recommending rads. Now that I've had a pCR, he said he's "shying away from it" based on it not being worth all the side effects and risks at this point. He's sending me for a second opinion, but the decision is ultimately mine. I have to decide soon and it's to the point where I'm not sleeping at night trying to figure this out. On one hand, I want to fight this beast with everything possible, and be as aggressive as possible. But on the other, I don't want to put myself at risk for a slew of serious side effects such as later cancers in life and serious reconstruction complications if I don't have to. Oh how I wish I had a crystal ball! Don't we all!
Maggie - wishing you all the best with your revision!
Dizzy - my MO is of the same mindset about finding mets. She says the prognosis is the same whether they find it before or after symptoms. I get that. But maybe I'll live 10 years if I find it early compared to 2 if I find it late. I want that possibility, so I find the whole no scan thing infuriating.
Gram - congrats on also getting a pCR, and for a clear path on the other breast!! I hope you're recovering well from your surgery. Sending you gentle hugs.
Nettie - I could have written your post. I'm in more pain now after just finishing chemo than I ever was during. My joints ache every single day. My back aches to the point where I now sit on a heating pad every night. My body is so, SO stiff. I have sciatica pain down both legs some days. Rib pain in one distinct spot … and this was all BEFORE my BMX with TE's last Monday lol. My MO won't run any scans either. Her response is always, "keep an eye on it" which feels like such a blow off to me. And yes, I also feel like a crazy lady. With every pain, the mets thoughts pop in. Most of the time I can quickly dismiss them, but sometimes I can't and work myself into a tizzy. I'm still learning how to deal with these fears. For me, it is THE absolute hardest part of having cancer. Fighting it was a peace of cake compared to living with the fear of it coming back. Once I'm healed from surgery, I'm going to start seeing a counselor. For me, I think I have to find peace and accept the fact that there is a real possibility of being dx with a fatal disease. I can't just ignore the fact. My mind doesn't work that way. So hopefully a counselor will help me find a way to come to terms.
Sending love and hugs.
Alicia
0 -
Allydp, So glad you are recovering so well. I am just so happy for you. I get the pause about rads....for me I had no choice, IBC is too aggressive to not throw the kitchen sink at it. The recon concerns are valid, I wonder if you could talk to your radiologist about your concerns and get a treatment plan that does not just crisp you up. I had the whole 33 tx with 6 boosts, and I am having some encapsulation on the affected implant. I am older than you sweet pea, I am 53. The perfect boob is not really necessary for me, although I do miss my super cute little rack I had before! But your youthful self should have the best reconstruction possible I agree. The other side of that coin says getting you the best chance to be heathy long term is priorty number one. So I have talked myself into a circle and I am sure I am no help at all. Listen to your team, listen to your gut, pray for guidance. Hugs and hugs to you
0 -
0 -
Nettie - we have a similar timeline and I too still have very strange aches and pains. One day I'll have a headache, the next day I won't but will have terrible pain in my hip. I think our body really takes beating and then layer the mental fear, that's just a bad combo. I try to stick with the everythings ok until i know somethings not ok.
0 -
I had my annual well visit last month with my new pcp. she was wonderful and scheduled a bone density test to baseline, its in october. I got my blood work results back and was surprised to see my wbw so low. on their chart they want it between 4-10 and i was a 3.1. I went for a 30 day retest yesterday and just pray it came up. Is this an indicator of what we all fear?
0 -
Jenjenl,
I feel this fear also, most recently with a heart problem that I thought might be connected to the chemo I received. It turned out the radiologist made a mistake in his calculations and I was fine. I was given a number too the first time around and freaked. Got a second opinion where the miscalculation was discovered.
Be sure to ask what your numbers mean. It may be early bone density loss, which may have nothing to do with cancer. From my 40's to my 60th birthday I lost an inch in height. I was told to do more weight bearing exercise and to increase calcium and magnesium. I hope that your number on retest I shows the first scan was mistaken or, if not, that you may just need some supplemental exercise/nutrients. Fingers crossed.
Hugs,
Peggy
0 -
Ali,
I don't know a lot about radiation, but I do know once you do it, you can never do it in that area again. If there is no more cancer, what exactly will they be radiating? Your entire chest?
I'm not sure which way I would go in your shoes... but if my doc said he was leaning away from it, I'd consider saving it for the future as a just in case!
0 -
Jen, With your wbc so low you must be careful to not be exposed to illness when you can help it. With little ones that can be hard or impossible. Hopefully your docs can give you some answers soon.
0 -
Hi ladies! Just wanted to stop in and give hugs where needed! Hang in there and remember there is light at the end of this crappy tunnel called active cancer treatment. Today is my 4 year cancerversary! There have been so many days when I thought I would never make it this far-convinced I would never see my children grow up. While I am by no means out of the woods, nor will I ever be, I do have some hope now that maybe I will be around for awhile. I still get freaked out with unusual aches and pains, but as we all know that is just a part of life now. Thanks to all of you for the great support and information these last 4 years!! I think I am going to take the kids out and get a big fat Peanut Buster Parfait from Dairy Queen!! That's about the fanciest dessert I can get in this little town!!0 -
Congrats TifJ!!! How wonderful!! I today is my 1year cancerversary!!!
0 -
Congrats Gram!!! Hoping all is well with you!!
0 -
Congratulations Tif and Gram. Best wishes to keep going for many more years
Does anyone think people on the "outside" understand why we celebrate?
I was finally given a 6 month appointment for MO. It will be my first one after years of 3 months or less.
Titan, where are you?
Hi to everybody, Jan
0 -
Jan- my husband doesn't even get it. I mentioned to him this morning that today was my 4 year anniversary and all he said was "oh, yeah"? I think he just tries to act like I'm cured and that we will never have to deal with it again. Maybe we will, maybe we won't. I don't even try to talk to about my fears or concerns anymore with him. It's not that he doesn't care, he just doesn't understand what it means to me. Thank goodness all of you get it!!0 -
Tif - Your DH sounds like mine. Frustrating to not be able to share fully with the one you love.
Cancer: Where getting older is a time to really celebrate.
0 -
Tif andGram, so happy for you both. Celebrating with you.
0 -
I hope everyone is having a great Labor Day........:)
I have an odd question for you all. I was diagnosed 3 years ago the first time and a year ago the second time. Some days I am feel like I could care less about anything and then the rest of the time.......If I want something done, I want it NOW, because I fear I won't have "later". Anyone else feel this way, and does it get better?Also, I have to have a uterine biopsy done and I understand it hurts like hell? Anyone have one? Any advice?
0 -
Hello everyone! I'm just checking in. I almost never come to the boards anymore, but I feel it's so very important to check in with everyone so you know that many of us who aren't here are out living our lives. Today marks 4 years. I'm so anxious to check in next year! I'm doing well, and burning the candle at both ends like I always have. I've noticed some things I don't like as a result of all I went through. I'm sure it's a combination of things... chemo, bilat ooph, instant menopause, and whatever normal aging I would have had anyway. Things that bother me are: I'm at -2.1 for osteoporosis (-2.2 is considered osteoporosis); My close vision is pretty much gone (and of course I'm in denial and so far refuse wearing glasses unless I'm digging out a splinter or threading a needle); I can't type as well as I used to (I used to type 70 wpm with almost zero errors... now I find I sometimes mix up letters.. not often, but some); I have difficulty trying to think of a word or phrase to use especially when describing something (that about drives me nuts too, since I will usually sit staring off into space until I think of the blasted word!). I wish all of you the best.... you're in my thoughts and prayers!
0 -
Thank you Angelisa! I am happy for you!
0 -
Angelisa congrats and I almost mirror your thoughts
0 -
Stupidboob,
I concur with your thoughts. I go back and forth between feeling like an old sage who is wise and patient with life and a much more self-centered me who feels like I need what I want now just in case there is no tomorrow.
On my worst days, you might consider me reckless! I'll find myself driving 90-100mph on the highway or staying out at a bar (I rarely drink) way too late and doing foolish things. I'm not sure if it's because I just don't care anymore or if it's because I feel invincible, but it's the closest I come to feeling like I'm 20 years old again with no worries. I'm sure it's unhealthy...but it still happens every now and again. I'll wake up the following day and be back to age 36 going on 70.
0 -
TiFJ,
Congratulations on 4 years! It is good to hear from people who are closing in on the end of the high risk 5 year period!
Hugs,
Peggy
0 -
Congrats TIFJ!!! I sure do hope and pray we will all get there. Success stories like you give us all a bit more hope, I think anyway. Big hugs!!
Stupidboob and Radical, I also have the same thoughts. Ugh! Cancer sucks!! But Rad, please slow down on the highway. Hahaha! There are other things besides cancer that can hurt or kill you. Plus we wouldn't want you to get a ticket or put in the slammer. Hahahaha!
0 -
TifJ - Congratulations! We are both on the same timeline. I was diagnosed 4 years ago on labor day weekend. What a contrast this past weekend was to four years ago. And for the first time, I didn't even think about it being my cancerversary going into the weekend. It wasn't until I was at a concert Friday night when my daughter said, "Mom, I'd much rather be at this concert with you then having the conversation we had 4 years ago!" Wow, I didn't think that would every happen. That's not to say that breast cancer isn't on my mind very often, but I was encouraged to realize that it doesn't consume me as much as it used to. Time is a great healer. Congrats to all those celebrating these milestones!
Kathy
0 -
TifJ and KSteve: Congrats on your milestones. So good to hear you're doing well.
0 -
Hi, everyone.
Question, please. I was diagnosed with Triple Negative Breast Cancer on June 16th, 2014.
I had never heard of Triple Negative Breast Cancer, so I did a lot of reading.
Something, I read about on this site really interested me, it is called: MammaPrint Test.
I would very much like to have this test. Not for helping me decide whether or not to have chemo
because I already made that decision.
I'd like to know how likely my cancer is to return. I will be having my 4th and last Taxol treatment on
Sept. 11th, then I will have 4 A/C treatments along with a double mastectomy.
And I am already worried about this cancer coming back someplace else. Ugh, as if we don't have
enough to think about :-(
Weeks ago, I asked my MO about this test and he said it is *not* for Triple Negative Breast Cancer.
I know he is the professional, but I wanted to ask all of you here, if any of you had this test?
Any information would be greatly appreciated!
0 -
Luah - Thanks and I see that you're approaching the magic 5-year mark. I know my onc says 3-years is the big celebration for TNBC but something about 5 years sure does sound awesome
I guess we'll just keep doing what we're doing!lyndawerner - I did not have the mammaprint test. Hopefully someone will come along soon to answer your questions. Congrats on just about reaching your halfway point of chemo. Just keep putting one foot in front of the other! Good luck with your upcoming surgery.
Hugs,
Kathy
0 -
Thank you, Kathy :-)
That is GREAT news about you hitting the 4 year mark! All I can say is, WOW!!
I can't wait to be able to say that.
Take care.
0 -
Hi, Stupidboob..(Love the name! I am not that clever. LOL )
I can certainly understand your feelings.
I feel like you do almost everyday and I was just diagnosed on June 16th, 2014!
Sorry, I do not know if it gets better.
But, considering what you have been through you have earned the right to feel however/whatever it is you feel.
Have a good one!
0 -
Congrats to all who have reached those important milestones. We all rejoice right along with you and look forward to our own in the future!!Ladies, I will soon be seeing my MO after rads at the end of the month, and have been emailing her regarding various post treatments to prevent recurrence. I recently asked her about Metformin, as several of you have been prescribed it by your MO's. Here's a link she sent me from the Nat'l Cancer Institute re Metformin. She says there was a discussion at ASCO as well, that indicates the data is not yet in. She thinks there may be a role for metformin but suspects it would more likely be beneficial for women who are overweight with insulin resistance. http://www.cancer.gov/cancertopics/research-updates/2013/metformin/print
0 -
MomMom,
I found it interesting that it said: "At the 2012 San Antonio Breast Cancer Symposium, for example, Italian and U.S. researchers reported that several metformin derivatives they had developed potently blocked the growth of breast cancer cells in the laboratory, including cell lines of triple-negative breast cancer, and caused the cells to die." So it is possible that the type of metformin currently available for diabetes may not be of the right formulation to help with TNBC. I am taking metformin just because there is nothing else we can take medically that MIGHT help us (like Tamoxifen, etc.).
Thanks,
Doreen
0
