Calling all TNs
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arlene and shari
I never knew to ask for lido or emla before tracer injections, and i had no idea what to expect, but the shots were quick.
yes, - take laxatives if taking pain pills! very important!!
small pillows for under arms were a big help, and also, someone gave me a hairdresser type plastic cape for washing my hair in the sink (before showers were ok). Dr said no leaning back for washes, as in a salon, so could only lean forward, and my husband and my daughter were my hair washers here at home.
everyone here probably has suggestions to help, I am sure!
we will get you through this!!
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Shari, I've been thinking about you a lot lately. Hang in there and stay strong.
Arlene - Even though I couldn't wait to get rid of my breasts, I was very nervous for the surgery, recovery and pain. It was so much easier than I expected and what I imagined. I'll be thinking of you and sending you prayers for a smooth surgery and quick recovery.
Luvmydobies - in you pocket for tomorrow! And yes, try to stay away from Google. I'm the biggest hypocrite on earth telling you that though. I usually can't help myself either. Let us know how it goes. Hopefully the roads aren't too bad.
Got some results today. My spine MRI is clear! I have two hemangiomas in my t-spine (benign tumors), but I knew about those already since they showed up on my breast MRI last year. They couldn't give me the femur results since it was from a different ordering doctor. That's the good news. Not so good news...I have a lump in my mastectomy scar. It showed up right after my exchange surgery, so I figured it was swelling or the way I was stitched up. My BS felt it today and wants to get an ultrasound. I was able to get in first thing in the morning. And given the ongoing bone pain she also ordered a bone scan. I was surprised since she knew I was waiting on the MRI results. So 1 down, 3 to go. I'm beyond relieved at today's results, but my nerves are shot at this point!
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Ally, I'm so happy your MRI is clear - that is worth holding onto! I'm sorry that you are going through the waiting for further tests but it sounds like you have a very thorough BS who is on top of things. Thinking positively for ultrasound tomorrow. When will you have the bone scan? I hope tests are quick and unremarkable, I will be thinking of you and holding your hand! Hugs, Shari
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Ally at least you did get some good news. I'll be in your pocket as well tomorrow! Hang in there! That's all we can do, right? I do wish I had some Ativan.
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Ally, - I am so happy about your good first report! The others are on the way!
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Shari - thanks so much. bone scan is Thursday morning. I'm really hoping to have all the results by the weekend. And hugs right back at ya!
Luvmydobies - thanks. Yep, that's all we can do. Thank goodness we have each other to lean on too! Can you call your PCP, onc, someone for an Ativan script? I would think they'd at least give you a few to get you through the next few days.
AnotherNYCGirl - thank you! I was just going over your signature and see that you recently had to have a TE placed again. I hope you don't mind me asking, but did you have an issue with your implant or was it a revision? I hope you're recovering well and can exchange it out soon.
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ally, added to prayer and pocket list!!!!
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Ally, I didn't even think to ask for some yesterday. I go to therapy every week but it only helps so much. I've had some weird reactions to different meds (antidepressants) the therapist Prescribed so my husband is very against me taking anything. I don't want antidepressants either because like I said I'm one of the few who have had bad reactions. I didn't react badly to Ativan though,but my therapist doesn't want me to get Ativan because after getting C Diff I hit my bottom and had to be on Ativan and Klonopin plus Remeron. I had a very rough time tapering off all of them. I would never abuse Ativan because I would only use it for times like this but she still doesn't feel comfortable prescribing it. But if I have to get further testing after tomorrow I may ask my PCP for a low dose.
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Thinking of you Ally.
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Hi Ally, - I had to have implant removed due to healing problems on the side that had radiation treatment years ago. The PS thought he could repair the spot that he was concerned about, but in the OR he realized that he had to take the implant out. I am not sure what he plans to do now. Seeing him tomorrow.
Hugs and BE WELL wishes to you, and all here!
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Hi All
Thank you for the kind thoughts and advice...I wish I could share my bottle of ativan with all of you! LOL. I will take some tomorrow. I have been so busy trying to get things ready at home, that I haven't had any time to worry today. Weird sense of calm...but so much better than anxiety. Ally and Luv...keep getting good results, I am in your pockets...Shari, we will get this garbage out of us soon. Another nycgirl...and all of you have so helped me with my worries. God Bless this site...I would not have made it mentally thru these past 8 weeks without you. I wish we could all go to the Keys together...I want some heat and sun...it's freezing here for too long already!
My surgery is at 1p on thursday...gearing up and trying to keep my head on straight.
love to all of you
arlene
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Greenea,luvmydobies,and Ally=Good luck. I'm with you,
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AnotherNYCG good luck with your PS apt. I hope he has a quick painless plan for you, it sounds like you've been through enough! Hugs girlfriend
Shari
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Eileen, echoes here keeping all of you facing surgery, tests in my huge overall pockets
Love
Kath
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Hi All,
Sorry I haven't been on here much lately. Hubby and I have both been down with the flu and now the power is out at our house for the past four days due to an ice storm. The ice storm was massive and there are still about a third of the people in our county without power. We are expecting a week of very cold temperatures so last night, we checked into a really nice time share right around the corner from where we live. As we were gathering our things (in the dark) to take over to the time share, I saw an animal dart across the floor in our master bedroom. Turns out a chipmunk had somehow gotten into our house! I think that was the last straw for my husband! After I get done posting this, I need to do some internet research to figure out how to get rid of the chipmunk.
Here's some good news for us TNBC gals....turns out if we are only slighly androgen positive (1%) then we can benefit from anti-androgen therapy. Study shoes that even breast cancer with a few androgen receptors benefit from anti-androgen therapy
Ally, I am so sorry you are having to deal with so many tests. The bone scan is a really easy one. I've had it twice. I know you are on pins and needles with each one. Wishing you "unremarkable" results on every one.
Shari, I am sad you are having to deal with the beast again. Arlene, you have been through the ringer already just getting your diagnosis. I hope from this point on that things go smoothy. Thinking of both of you as you go through your surgeries.
Well...off to go research chipmunks!
Kay
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Thanks eileen!! Last night was rough. Was hurting right when I went to bed. Then the nerves really kicked in. So I don't feel the best this morning. Hoping it's just nerves and anxiety! I have been more gassy the past few weeks and stomach has been a bit more noisy. My bowel movements have been fine for a few weeks except that I had loose stool once yesterday. Then I think about the off and on burning urination but no infection. My mind is going to Ovarian mets/Cancer. I've read that it causes bloating, bowel issues and even urinary and now I'm having this pain. Then, I really wish I would've pushed for a CT when I was in the ER in December. My white count was slightly elevated but they didn't even mention Diverticulitis or any other infection. Maybe that's because I wasn't running a fever. I only had pain which was less than it has been the past few days and I vomited four or five times. They said viruses and stress can raise white count and gave me some Zofran and I felt better, so I didn't push for the scan. UGH!!! Anyway, thanks for everything! Trying to calm down!
Ally, thinking of you as well this morning!! HUGS!!
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NYCGirl - I'm so sorry about the complications you're having. Hope your appointment with your PS went well today and you got some answers and a game plan.
Thanks again everyone for standing by me. I had the ultrasound this morning. Turns out there's two areas of concern. They ended up taking a biopsy of both sites right then and there. They took a core out of the lump in my scar, but there's another lump between my sternum and implant that they drained fluid from on top of a core. The fluid has me really worried. The radiologist who performed the biopsies was the same doctor who did my biopsies at diagnosis and she remembered me. In fact, I really bonded with one of the techs during my diagnosis visits and I've kept in touch with her over the past year. She was also there this morning, which was nice. The radiologist thinks these are going to come back as just surgical changes, but given my history she wants to be thorough. She promised me results Friday, so I'm glad I don't have to wait through the weekend. I'm still waiting on the femur MRI results. The ordering doctor is out sick today...of course...so I probably won't hear until tomorrow. Bone scan in the morning.
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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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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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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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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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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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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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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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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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Ally Thanks for the good news Thank you God forthe good news
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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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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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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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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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