Calling all TNs

Kymn

In the grand scheme of things I guess this is really all we can do

Lovelyface

Wow Kymn, this is so beautiful.  I had never seen this one before.  Thanks so much, I am gonna print it out and hang it in my cubicle at work.

NavyMom

Thanks, Kymm.  That was a good one.

Navy

FrancesC

Kymn this is IT! A summary of what we can do! Love this, so aptly put.

Titan

Thanks Kymn! 

Don't worry about being positive..there are studies out there that say it doesn't help physically.

Bottom line is..you gotta do what you gotta do..everyone is different...people told me how positive I was and I really just wanted to slap them......for me..working and trying to maintain the "old" lifestyle was wanted I needed...I think.

I never did have that scream at the top of lungs, crying episode...maybe I should have...maybe someday it will all break loose.

Oh..and the hair..2 inches really is pretty good for 7 months PFC...2 inches is really pretty long..at least you can do something with it..spike it.....straight iron it...gel it up...

Titan

With all the excitement around here and with my kids I totally forgot I had an onc appt. next week!  Usually I'm freaking out about a month or two before!...I was going to ask for a Vit D test and I totally forgot to do that also. 

My son doesn't have a brace..worse case scenario he may have to have his finger glued to his stomach..(like Napoleon)..I hope that doesn't happen...what a PIA if that does happen.. poor kid..

Titan

Stupidboob..taxol...it's not that bad..you can do it...the scary thing for me was that I knew what AC se's were..and going on to something different was freaky.....different se's..but you may not have any at all...once you have that first one done you will probably be ok...

mccrimmon324

Titan, what's the purpose of gluing your sons finger to his stomach?  That sounds awful for him.  Hopefully if it needs to be done it won't be for long.

laurajane

I thought if I could try and put it out of my head and move on it could stay in the past. But the sneaky, sly, evil, lurking F. C. is back with a vengeance and it really sucks. I enjoyed having my port out for the last two months and I celebrated that it was all behind me. Ha! I think this is worse than when I was first diagnosed. I did all that I was told all the chemos, rads surgery and yesterday I was to finally meet with my plastic surgeon to talk about getting my new boob instead I find out its baaaack! This really really sucks. I missed all of you but I thought I had moved on and didn't want the constant reminder. Fool is me.

Stupidboob

Laurajane I am so sorry to hear this....................comfort hugs.

When I read stories like this it makes me wonder if it is even worth trying................

How many of you have had yours return?   How long after chemo, surgery, radiation?

Stupidboob

Laurajane just curious did you do lumpectomy or mastectomy?  

Lovelyface

Oh dear Laurajane, I am so very sorry to hear that the F.C. is back.  Is it a new primary in the same breast or where is it?  What scan has revealed its presence again?  I really have nothing to say except I just want to hug you so badly.  Sending you my love and praying that you get all the strength that there is to face this devil once more.  Fight it, my friend, keep on fighting with all the strength that you have.

Fighter_34

Laurajane: I am just as devasted as you are!!! Please request a full body scan. Do you have a tx plan yet? What were your tumor markers? How did you know? That's the scary part you don't know even if it is happening. How can you be proactive if you don't know what to watch.

Stupidboob: don't go there. this awful disease doesn't have rules, but most of us do recover with relapses and all. you will be fine.

Suze35

Laurajane - I was thinking about you yesterday, I wanted to email but I decided that in your shoes, I would want to be moving on.  I am so very sorry to hear about your recurrence, I'm in tears .  Please stay with us so we can hopefully offer even a small amount of support and comfort.  Thinking of you.

Stupidboob - please know it is worth the fight.  Statistically, you really do have a good chance of beating this.  In the end, I want to be able to say I did EVERYTHING I could to fight, win or lose. 

Luah

Laurajane: Oh that just sucks!! I've missed your posts, but this is not the way we want to stay in touch. Is it another primary, local or distant recurrence? Really hoping you can get a treatment plan together soon and fight this with the incredible spirit you showed before. Still, this disease is really f...ing unfair. ((((((hugs)))))  

Teka

Laurajane,

March 24th was your last post, and sorely missed on this thread.   I feel broken-hearted.   

Stupidboob

Thanks Fighter and Suze...............you know just being new to all of this I want to learn, then I go on overload.......then I back off and start again and it is just all so overwhelming.   Being that my only experience with cancer is loved one lost.........with a few that have beat it, but those people are SO UPBEAT it is sickening...........I just don't have that upbeat attitude and I know it does not help.   

By the way been meaning to ask what things food wise your doctors have told you to stay away from?

Suze35

Stupidboob - the "be positive" attitude that others like to suggest to you sucks and does nothing to help you.  There is no good in faking a positive attitude.  However, I believe there is a difference between that and being hopeful.  I get down and in a funk, but that doesn't take away my true hope.  They are different.  Does that make sense?  I read somewhere (can't remember, chemo brain) that studies have shown a "positive attitude" makes no difference, but "hope" does.  So its okay to be down, and feeling lost.  You can do all that, and still have hope.

My doctor is BIG on diet and exercise.  She bugs me about exercise everytime I see her.  She encourages me to do the WINS diet - very low fat (under 20%), and to limit bad carbs, dairy, and meat protein.  I make sure to eat 4 oz of blueberries almost every day, and drink 2-3 cups of good quality green tea each day.  She also said red wine in moderation (3 glasses/week) is okay, alcohol and TNs don't seem to have nearly the connection as ER+ cancers.  Supplement wise, I take Vitamin D3 at 5000/day with resveratrol, tumeric, and mushroom capsules.

cc4npg

Hey guys.. just popping in to say "HI".  Hope you all are surviving the summer heat.  It's been HOT here in Ohio.. consistently hot for several days in a row and I don't recall a summer this hot in my lifetime. 

I've been extremely busy, but you all are always in my thoughts and prayers.  It's difficult at best to go a day without thinking about cancer, especially when you're BRCA+.  My onc isn't happy with me.  I have acreage and have to mow it and it's been hot/sunny.  Even using SPF 40, I still have a nice tan.  Onc told me I need to wear LONG SLEEVES when I'm outside because of increased risk of melanoma with BRCA!  Ok, so I'm having hot flashes from ooph and you want me to do what??  I cannot do that.  Meanwhile, my daughter went to The James in Columbus because she's BRCA+ and 20 yrs old.  She told me "Mom, they told me I need to have my ovaries out as soon as I make the decision, and asked me if I had decided when I wanted to have mastectomies!"  I guess they really push for decisions with BRCA people, but she is ONLY 20 and hasn't had kids yet.  She wants kids, but doesn't even have a boyfriend yet.  Talk about pressure!  They refused her an MRI (which I still will push hard for) until she's 25.  They still don't seem to understand that with BRCA, EARLY detection means you have to start vigorous testing extremely EARLY.  I see so many young women here in their early 20's facing breast cancer.  So, ok, AFTER you have been dx with breast cancer and are BRCA, they do tons of follow up and want you to wear long sleeves when in the sun, and BEFORE you're dx with it (at age 20), they want you to consider mx and ooph but they won't do an MRI before you're 25 and no mention of sunblock??  Isn't that a bit contradictory?  Anyway, enough venting... I'm just aggravated today and you guys are the ONLY ones who understand.

I have a completely unrelated question.  Is there anyone here who lives in the St. Louis area? I posted a thread elsewhere, but long story short, I found a dvd recorder that I wanted to see about getting (craigslist) but I'm in Ohio.  I don't even know if it's still available, but figured I'd ask and if I found somebody then I could find out.  

Kymn

Laurajane...........I dont really know you I was just starting out with treatment when it was time for you to take a break from here but I have tears in my eyes I am so sorry,of course this is everyones fear especially us TN's please do come here often and let all the caring women do their small part in helping you through your next battle with this F$#@%$ Beast.

Anonymous

LJ- I'm speechless and so sorry. I knew you had moved on, as your facebook depicted and I was so happy for you. I've moved on too, but still take my computer "fix" each day and like to stay in touch. In your case, with what you have been through, I knew BC.org was not allowing you to really do that, with all its constant reminders.

I  hope you will keep us apprised of your health, as you all know how many of us have followed your situation. Take care, and post as you are able.

F*ck cancer.

laurajane

Thank you, all of you. I think I kind of knew. I've been feeling tired the last couple of months. My onc thought it was Se's from chemo etc. I noticed a pea size lump under my pit a couple of weeks ago and then BAM! a whole cluster in my pit last friday night where my nodes were removed. It felt like they were growing daily went to my onc yesterday and she biopsied them and they came back as cancer. She thinks its secondary to an area or other areas where the cancer has spread. i get a pet and intense CT on Friday and meet with her next tuesday to get the news and gameplan. She said she is having her office check into clinical trials for me and will let me know on Tuesday what the plan of attack should be. I know I should be motivated to do something today but I'm having a hardtime getting one foot in front of the other. My boyfriend took me to the ER  at 2AM for a panic/anxiety attack. I have Xanax to take but I hate taking it so I haven't. But I think I will today. Wow! I feel your hugs. Thank you, all of you. So sorry I have not been there to support all of you. I just really thought all of this would just go away and be a part of my past. When I would occasionally go online I would get scared that this kind of thing would happen. It just sucks. I've got to get my fight back. 

NavyMom

Oh Laurajane...Just read your post.  I am so sorry to hear your news.  I ahve no idea what elso to say.  CANCER JUST SUCKS  Come back often and let us know how you are doing.  We care about you.

Navymom

Titan

Hi Laura Jane...just echoing everyone else's remarks...this news hurts..I hate freaking cancer....!! 

We will be here for you..girl!

Titan

Hi Angelisa....yes..it is certainly hot in Ohio...I've had about enough.



Reading about your daughter and the BRAC..I dunno...my daughter and I haven't had the testing...I'm thinking maybe we should....

Lovelyface

Dear Laurajane, you are one strong woman, don't let this thing get the better of you. I would fight it and win in the end.  They have made a lot of progress in treatments.  I read somewhere that nowadays, they are treating BC like any other chronic disease.  This is not the end.

I am very tired myself these days, really very tired.  And I get all these sharp pinches in both my breasts especialy in the radiated one.  I always wonder what they are.  Could there be microinvasions, why didn't someone check me for microinvasions, I heard from other women who have been checked for those.  Would microinvasions show up on petscans or not?  I am not anxious at all, these are really genuine concerns because one thing about this horrible disease is early detection.

I heard that my agency is moving to San Francisco within the next 9 months or so.  Everyone around me is talking about this, mostly negative comments as this would add one hour and money to everyone's commute everyday.  Nobody wants to move. I am sitting here thinking, I can't even take part in their conversations, because I am just trying to figure out whether I will be alive or not, whether I will have life .....  I never thought my life would turn out this way.  I just went past the scare of petscan and the horrible neuropathy.  Aridimex greatly damaged me, so I still have quite a bit of neuropathy, but am not sure now, why this extreme tiredness.  And I know now my Onc. won't check me for anything.  We have to be so strong, so very strong.  Nobody around me at work knows what I am going through all day, what I am thinking, how I am not even for a minute thinking of the move which means nothing to me.

ksmatthews

Suze35 all my dr's and nurses have told me that a positive attitude is the BEST way to beat this!  So I am positive and strong!

Kymn

Lovelyface please try and focus on the postive I know positive people piss you off, they piss me off too but the truth is your outcome statistically is very good hun, you had no node involvment the microinvasions would have been on your pathology report had there been any. Focus on the 85% that you wont get this frickin disease back. thats what keeps me going through all this crap and all these treatments that after I am done doing all this shit chances are good I will never have to do it again.

Hugs all Kymn

Suze35

ksmatthews - I truly am glad you are able to maintain such an attitude, if you can, that is great. I hope this comes out okay - I don't mean any disrespect - I just disagree with the "positive attitude" mantra. I think a positive attitude is more a benefit to the people around us. For example, my mother copes much better when I exhibit such sentiments. But they aren't always what I'm feeling, and I refuse to beat myself up for allowing myself to be down and afraid. I can't keep that stuff bottled up. Like I said previously, I DO have hope, which I feel is just as important. But I think we can respectfully disagree, and I think maybe we are closer in what we believe than words can adequately express




Lovelyface - hang in there, this is the scariest time for you! Have you had an honest talk with your doctor about the Arimidex? How ER+ were you? I'm not sure the benefit for you outweighs the problems. Maybe go off it for a bit and see if you improve?

riley702

Ah, damn it, LJ! I'm so sorry. This massively sucks.