Calling all TNs

ALHusband

OK. As a male and a husband, I feel left out when it comes to the secret "lingo" you ladies use on here. I MUST know what the heck a DH is? I suspect, from the context in which it is usually used, that it refers to us husbands. Dumb Husband? Dear Husband? Dirty Hands? Dastardly Hog? Dull Hatchet? Damned Heartbreaker? What is it ladies? Fess up!

TifJ

DH is Dear Husband! You are too funny Alhusband! Although sometimes some of the others you came up with fit my husband!!

mags20487

Obxk...smiling from your news..



Alhusband...rofl



Mags

InspiredbyDolce

Karen, that's wonderful news! Fingers crossed that all the rest of the criteria you will meet and be able to get into this trial!

Also, ladies, I want to make sure you all know to be aggressive with getting appointments when you feel something is questionable or concering to you, such as finding a lump.  When the doctors' offices schedule you for 2 weeks out for a look at a possible recurrence, you might consider saying to them "this can be potentially serious, I had a particularly aggressive type of bc, and I need an immediate appointment."  Even though the majority of these will not be cancerous, because of the nature of TNBC, you don't want to wait around for two weeks just to be seen, as that is only the first step. What if it needed more observation, than those extra appointments must be scheduled, and then what if the slim chance it is something and you have to go into surgery?  By then, this could become a larger issue because of all the days in between waiting on appointments.

So this suggestion isn't because I think it will be something wrong.  I really think the majority of these turn out not to be a recurrence, but in the very unlikely event it was something, time is of the essence. I feel that there is something the offices can do to accomdate you.  You might have to negotiate, beg and plea, but it's really to your benefit.

I've been able to get doctor's to come in ahead of their start day to see me, once I told the receptionist "I can be his very first appointment", or "I can wait in the lobby to be worked in during the day."  Once they hear this, they will really try to squeenze you in.  I just feel that some of these long waits which some of you have had to be a part of, are super long.

I remember, when I was first diagnosed, my BS originally said "he can get me into surgery in a couple of weeks" and he wasn't concerned. Biopsy also did not show this as TNBC either.  I immediately said that wouldn't do for me, and his scheduler was able to move things around and get me into surgery within 5 days plus coordinated with a PS.  I had to hustle on my end to get my prereqs done for the surgery, but still ... that could have potentially kept things from being a different story.  My Onc said that sometimes just 1 week or 2 weeks makes a big difference in the diagnosis that someone will have.  So he was also on board with getting me into surgery fast.

Please, if any of you are seeking appointments for something about a possible recurrence, have this be the one time that you turn into a pushy patient. 

OBXK

Thanks friends.



Debra - great advice.

Kayak2

http://community.breastcancer.org/forum/131/topic/773727

AL Husband, if you go to the above link, it takes you to the Discussion Board Abbreviation Key for this site.

Titan

I was diagnosed on a wed..had surgery on Friday....my surgeon's nurse told me that my surgeon NEVER schedules surgery on friday..but he did..for me..and yes he knew I was tn....course i waited way to long to have my lump checked out...like 6weeks....

naan1004

Hello all, haven't been on for a while, but I need my sisters right now. I just had a PET/CT scan done yesterday and a few hours later I got a call from my breast surgeon who gave me some devastating news. I might have lung cancer with possible cancer elsewhere including my bones or I could have pneumonia, if I could choose, I'd like the 2nd choice please.

I had a very stressful situation during radiation and most recently in July, yes last month. Been taking better care of myself I thought, but I think the stress didn't help. Will tell u about that later too long. I lost a lot of weight, been exercising and eating better, I thought, but I really think stress is a big factor for me for both breast cancer and this one. Still crossing my fingers. Have to get a chest x-ray, possible biopsy to know for sure, so please pray for me my sisters! I don't need this right now and I don't want my young daughters 10&7yrs old to go through this again! So angry, can't believe this is happening to me again. Needed to rant and rave, thanks for listening!

sweetpickle

Julie- Hoping it is not cancer and that you feel better soon. Have you thougt about doing some deep breathing exercises when you are stressed? That has helped me a bunch.

DorMac

Naan1004 - Anyone who hasn't gone through FC would be shocked to read this but: Here's hoping it's pneumonia! (if it has to be anything) Will keep my fingers crossed that you get the all clear on the FC diagnosis. Once is more than enough. Feel free to rant and rave as much as you need to but try not to stress over it too much, if you can. Good luck!

Doreen

OBXK

Julia - I am so sorry your results were not more conclusive, leaving you in waiting hell. I hope you get your answers soon. Inhale, release, repeat. Enjoy the weekend with your young ladies.

Bake a cake!

naan1004

Bad news just became worse, I'm hospitalized right now. It is lung cancer with mets to my brain and other places. I just had blood test done in June 2013 at MO, guess they weren't right. My new MO sent me to ER to get a head MRI, which confirmed mets. Guess it really sucks to be me right now. Ladies u must demand PET/CT scans fight for your right to never go through this again! If u have any changes that don't add up, mine were a cough for over a month, which antibiotics didn't cure, new lumps not in breasts, 1. Left neck, 2. Left shoulder, 3. On back of head, mind u I had right breast cancer, not even same side!

natL12

naan  I'm so sorry to hear your news. You will be in my thoughts as you go through this. Thank you for taking the time to give us your good advice. It's too easy to go along with whatever the doc says, and assume he or she knows best. They don't always, as you pointed out.  Nat

DorMac

Julie,

So very, very sorry to hear your news. You will be in our thoughts and prayers as you deal with this. Don't know what else to say right now except Good Luck.

Doreen

naan1004

I'm in the hospital cause I have a neck tumor biopsy tomorrow afternoon after which I'm finally going home. My new Onc wants me to start radiation first thing Mon, so here I go again. Finally going to find out where this damn thing started from, what cancer I have and stage, but onc says definitely mets.

mags20487

Julie..my heart is aching for you and your family...I am so sorry to hear your news. 

Mags

relocatedtarheel

Julie-I am really sorry that you received this news. I just had my mastectomies on Aug 5...and will probably start chemo in the next 4 or 5 weeks. I'm terrified of the chemo and terrified that I'll never be well again. I feel that I've just boarded a moving train and that I can't ever get off. My mom is here helping me past the surgery and is now beginning every morning with 'do you know where you'll spend eternity???'....ugh...

Luah

Julie: So sorry you are dealing with this horror. Fervently hoping the rads -- and other treatments I'm sure your onc will consider -- will stop this FC in its tracks. Big hug to you, my dear.  

Lauren15

I've been trying to keep up with the posts, although I haven't posted anything.   I am praying for all of us and so so so sorry to hear about those with recurrences.  I pray every day that it won't reappear it's ugly head, but I'm fully aware it can come back at any time.  I also pray that all the promising research going on will lend itself to help all of us. 

I'm coming to you to ask for help.  I have these nagging questions that I am hoping you can help with.

1.  I never really looked at the stats, but does anyone know the stats for recurrences?  2.  for those of you who have had recurrences, how long after your last chemo did it  occur?  3.  how did you detect it and what were your symptoms.

I have two new issues that I haven't told my MO about yet and don't know if I'm just being nutso.  I have a bloated/distended belly for about a month.  I look 7 mos pregnant - also my lower back has been killing me, and just yesterday it feels like I bruised my rib in my side/back.  It hurts when I breathe or move.

Thanks so much and G-d bless all of you!  Lauren

lizlori

Julie, thank-you for sharing with us your news.  I know courage seems to be used freely, but the fact that you gave caring advice while getting devasting news, tells me you are one hell of a strong woman.  Am sending you lots of hugs....

Relocated- it's amazing what we can get through...tomorrow I will get my very last chemo. It is hard to believe six months have gone by, it's been a damn rollar coaster, but my sisters and kids were so helpful.  I feel good physically, my hair is growing back, and I gained some weight.( I was really thin)   Now it's a matter of living life the best I can....Lori

OBXK

Julie - I am so sorry! I know you must be in shock. It just freaking sucks. We're in your pocket - I'll be handing out the Merlot and Ativan.

Wishing you a good night's rest.

OBXK

Lauren - for your own peace of mind, make an appt. with your MO.

Keep us posted.

graceforme

Julie-I just wanted to say I'm sorry you're going through this.



Lori1020-I was diagnosed a day after you were & my surgery & chemo start date are same as yours. The past six months have been quite a crazy ride. Wishing you well on your last chemo tomorrow.

Kazzie61

Julie....so very sorry to hear what you're going through (((hugs)))

Are you saying that a CT wouldn't necessarily show up brain mets? I've had a few symptoms & had a brain CT which was clear but reading your post makes me think I need an MRI or PET......



Lauren15.... My mets were diagnosed 14 months after treatment finished for my primary but I know they were there at least a few months before....

My symptoms were sore lower back, getting up or down was painful as were such things as lifting the laundry basket. I also had pain in my left rib which gradually got worse & hurt to breath. I don't mean to scare you, but I would definitely be getting your symptoms checked out. Good luck & hoping its not bad news (((hugs)))....



Karen xx

naan1004

Kazzie 61, MRI of head was what was given to me and made it clear it was there, not sure if it's the best method, but they found it using it so I would guess yes.



I found out today from my surgeon, I'm stage 4, don't know what type of cancer yet but due to mets I know the stage. Had biopsy, went well took whole thing out, was a size of a pea from my neck, felt like chicken bone cartilage, hard, white. Tomorrow, Monday morning starting radiation in brain first, then after that is under control, will hit other areas. Wish me luck and please pray for me.

julz4

I read often but rarely post anymore.



Sending out big Hugz to my namesake Julie. Not much to say but we are here for you to let loose with your emotions. What ever they may be, when ever you need!!! Julee

TifJ

Julie, so sorry you are dealing with this. I will be thinking of you and hoping all goes well with your new treatment.

Tiffany

InspiredbyDolce

Julie, I agree with Lori.  How truly sweet of you to take the time to help us all try and stay healthy while you are in the hospital and handling your new set of worries.  I'm shocked to hear your news ... when I read your post on Friday, I felt the concern that you had, but really was thinking it would be pneumonia.  It's so hard to understand.  We are all here for you.  I'm glad your treatment has already been scheduled. Sending you many prayers.  Let us know what we can do for you.  xoxo

InspiredbyDolce

Today is a particular tough day for us as a family, seeing the news that Julie has posted.  I wanted to post something here to help all of you remain hopeful, and with a proposed action plan.  I'm attaching this article in case you can incorporate any of the information into your routine.  It might help you feel in control and more hopeful, at a time when we feel helpless.

http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html

Worrywart9390

great article, thank you Debra!!