Calling all TNs

Anonymous

Here's what I'm hoping for all of you in the New Year:

May you eat what you want, drink what you like, and exercise as you wish without fear or guilt.

I realize that to a degree the fear one holds onto is due, in part, to our individual differences in nature and BC stage. I also believe that those who stay in these forums do so out of some need for knowledge, camaraderie and reassurance.

BUT, I also realize that it is possible to move on with one's life and move past all the uncertainty. I no longer fear every little cough, ache or pain. I no longer think twice about what I eat or drink. I no longer feel the need to exercise, exercise, exercise at a gym (you guys know I'm active by nature anyway).

So, what I'm saying is (and I hope I don't offend anyone)... I feel it is truly possible to get beyond all this BC crap, and the ones that do are the ones that no longer post in here. I know, because I've done it!

I'm here because I want to be, not because I have to be. I'm here to offer my silly distractions.

Speaking of:

Anonymous

Oh yeah... I have an onc appt. Wednesday.... I have to keep reminding myself not to *forget* it!

Wow...

mccrimmon324

Thank you Heidi. 

I know eventually we can move past it, right now I still don't have a head of hair I'm 100% comfortable leaving the house with.  My boob is still peeling from radiation and my scars are still very obvious. 

I still need to be here and to know that I'm not alone.  Still trying to find my "new" normal and reading posts like yours helps me to see the light at the end of the tunnel. 

Anonymous

mccrimmon- I feel like it was only yesterday that I was at your stage in tx. More proof that time flies and life moves on... a good thing! In fact, I was 2.3 cm, Grade 3, IIa and 0/2 nodes...fairly similar.

Fighter_34

I'll contend with moderation as well. Not a big drinker anyways, but when I am out w/ the girls I am known to have 2 or 3 drinks and this is an annual event though. I sincerely don't think having one or two drinks occasionally would increase your risks by that much????

We have a family friend that DRINKS and she is a little looney but no cancer. Who really knows???

Suze35- isn't it wonderful to have a great support system. That's what family is for. I don't know what I would do without their encouraging words. I am feeling better these days and I am really looking into giving back. I may start radomly dropping in on some group discussion with people going through the battle.

MBJ-I hope that shoulder gets better.

Those that are doing this once again you are in my prayers. Take care of yourself and continue to be your best adovcate.

I have a question our hormone ++ sisters that have gone through chemo, radiation, and anti-hormone drugs and still reoccur. How does this happen or there is no way to stop how cancer actually behaves. Sorry I sound like a newbie. I don't read up on hormone ++ as much. 

Everyone ready for the holidays???? Does anyone watch HGTV?? I am totally in love Dina and Donna shows. I just love their decorating styles.

LuvRVing

Fighter_34 - there really is no way to know who will have a recurrence and who won't, including hormone positive ladies.  My good friend has had BC three times, she was ER+ on all of them.  First time she did a lumpectomy and rads, second time she did a BMX and chemo and the third time (after more than 10 years) she had a MX.  She is the picture of health, exercises six times a week including yoga, and practices moderation in every way.  There are no guarantees, chemo is not insurance and there is still so little known about what REALLY causes BC. 

Hope60

Heidi - Your post gave me so much hope that I can and will move past this some day.  I wish I were at that point now, but I'm not.....yet.  I have my "routine"  6 month mammo scheduled tomorrow, and I'm a nervous wreck. When does that stop?

ksmatthews

Char sorry you are here, my dx was sim. to yours and after 6 TAC, and a lumpectomy I am ned.  So stay positive.

heide thanks for the input and the cute pic! 

kathyrnn

Thank you both Heidi and Luvrving. I want to do what I should to prevent relapse, but after listening to everyone on here the last few months, i realize that it's a crapshoot! I just don't want to spend so much time doing the things I SHOULD do, that I miss doing the things I WANT to do.

BernieEllen

Hi to everyone, i have so much trouble keeping up with everyone so please don't be offended if i don't mention all your names.

In the last two years i have had two cousins and three friends die suddenly - all under the age of 45.  Heart attacks/brain haemorrhage's.  Three of those never drank or smoked .  I will continue to enjoy my life - because who knows.

CharB22

ksmatthews - thanks for the encouragement! I'm still trying to learn the lingo -- what's TAC? I didn't see that abbreviation listed any place.

mitymuffin

For sure, we don't know....and it makes sense to enjoy each day we have!

Fighter_34

BernieEllen- I too experienced 2 deaths within the past year (a heart attack and motor vehicle accident) it happened so fast. As you said we are all here for a limited amount of time; make it count. I strive to be an old lady one day, but that's really all I can do is speak it into my future.

Thanks LuvRVing, it really puts a twist on the whole thing it really doesn't matter whether you are +/- I guess what really counts is did the Chemo or whatever treatment option you took worked.

Anonymous

TAC= Taxotere, Adriamycin, Cytoxan

mccrimmon324

Bernie and Fighter, I'm so sorry for your losses, it's difficult to deal with the loss of one person but multiple loved ones is terrible. 

CharB22 - I'm sorry you have to be here but I think you'll find this thread to be one of the most helpful. 

DH = Darling Husband I believe, at first I thought it meant Divoiced Husband.  LOL 

CharB22

Again, thank you all for this great thread. I'm having a tough time wrapping my head around this triple neg thing. I thought for sure that I was ER+, would have only radiation, and be on my merry way. Oh well. I can only say that I am grateful that this crap has not gone to my nodes -- the office mgr in my PCP's office - who I LOVE - said it was my Christmas Miracle. And, she's right.

I've decided that since I don't go to oncologist until Jan 4, I'm going to try to focus on non-cancer stuff as much as possible. Although I do need to schedule an appt for a haircut. I'm going to chop off my shoulder length hair to ease my way into the hair loss.

Anonymous

CharB22,  I agree, "Crap"  I'm very sorry that you are joining our club.  When I got my TN diagnosis, I had no clue what that meant.  I'm still learning.  Good news on the nodes!  Angry and scared?  Me too!

Phyllis

Titan

Ha ha on the "DH" stuff...I thought it was dear husband..or "dick" husband when I was pissed off at him..I guess it just goes with whatever you are feeling at the time.!  I hope I didn't offend anyone here..

Hey..Phyllis and Char..welcome to our (your) TN thread...My SIL (sister in law) has er/pr positive cancer..her onc told her it was the "best" cancer to have..yes..to my face...my family is kinda a competitive bunch...so I like to remind her that though triple negative's have a higher chance of reocurrence in the first 3 years it goes way below the positives after that ..so there...it's hard to be nice sometimes when you have breast cancer...

Geesh..we all have cancer for gosh sakes...

Titan

About the moving on thing..once you are done with treatment...it's a process..it takes time...there are so many mental and physical aspects that you have to deal with...don't expect to be your old self right away...it takes time to wrap your head around the whole experience plus trying to get your body back to normal...You have had very, very strong drugs infused into your body...plus dealing with the mentality of a cancer diagnosis.

Yeah..we do have to realize that we may not be cured until we die of something else..but who wants to wait for that...????

Hang out here...I love hanging out here...it's my connection to what happened to me almost 3 years ago...I can't just forget it..no way...but I can put "it" in box and forget about it for awhile..and you all will too...

Sugar77

Well said Titan.  I feel the same way.  I just can't forget it but I have moved on and found a way for it to fit in with my life.  I don't dwell on it but I'm glad I have this place to come and vent, lurk, or whatever fits at the time.

CatWhispurrer

I saw my BS today for a follow-up (12 days out of LX surgery).   I am dealing with a BIG hematoma which has me swollen and sore.  It went all the way over to my breast bone and up toward my collarbone as far as it could go, then starting swelling out since it ran out of space.  Has anyone else dealt with it?  It is all black & blue.  It happens all the time after surgeries to me and one time, I had to have emergency surgery to clean out the hematoma before it did damage.  My BS just said to put ice on it which doesn't seem to do much.  He said he might try to "draw out" some of it if it liquifies in a few weeks, but right now, it is rock hard.  That sounds pretty painful.  I might decline that even though it might take longer to re-absorb.   My BS is also going to have me tested for Von Willebrand disease which is a platelet disorder.   Anyway, I thought I would ask if anyone had any good ideas for getting this to heal?

On another note, I asked my BS for the path report from the surgery.  I read it tonight when I had time and was surprised/shocked/frightened when I found that it said there was another mass that was 0.5 cm!!  No one mentioned this.  When and where did that come from?  It said it was tan/white like the other larger mass but didn't say if it was tested.   I had mam, breast mri, ultrasounds, PET and CT and no one said anything about another mass.  It also said that he had to go back in to get clean margins on two sides and took some pectoral muscle as well, which I thought he said he didn't take any muscle.   So, did this mean it went into my chest wall?  It wasn't in my chest wall two months ago when I had the us.   I have all these questions flying around in my head now.  I was upset enough that it took 3 months to get to the point of surgery and the 1st(?) mass over doubled in size.    I guess I will have to call tomorrow as I feel very uneasy.  If no one saw that second lump, could there be more lurking??  

ksmatthews

Cat sorry to hear about all that, I really dont' have any advice but to call your onc and have them explain.  I never asked for my path report after surgery.

Ka-cey

Yes I agree, well said Titan.  I especially agree with the different meanings of  "DH".

CatWhispurr - My surgeon also had to cut into the muscle.  I have the same questions as you, but I think that maybe I don't want to know what his answer would be.

Tomorrow will be 2 years since I had my biopsy.  At that time the Dr. looked very concerned and put his hand on my shoulder and said "Good Luck to You", I thought that is certainly strange, Merry Christmas would have been more appropriate, Oh well, maybe he doesn't celebrate Xmas.  Talk about someone being in denial!!

On the topic of alcohol, I have orders from the Dr. to have a glass of wine over the holidays, Yeah!.  Love this guy,  he always puts things in perspective and when you leave you feel like everything is going to be O.K. 

Char B22 - sorry you have to be here.  All of these ladies are wonderful and we will be with you every step of the way.

Heidi - Thank you for the laughs.

Kim 

bak94

Heidi and all, I agree it is possible to move on. I did the first time I went through this crap but it took me about 3 years. Not to say that I did not live my life those first 3 years, but I had major anxiety and panic attacks until I was put on an antidepressant. The year or two before I was diagnosed for the second time I really started to plan for my future again and relax about cancer, and then bam! Diagnosed again. It really sucks a second time, especially with a diagnoses that is much worse than the first one. I just hope I learned from the first time and work on not worrying about it, as it won't change a darn thing. When I am finished with all the treatment I just want to enjoy life as best as possible and still reasonably plan for a future, you never know, it just may not come back and that is what I need to focus on! I will still visit here. Right now I need to focus on healing and getting through rads, which start next month.

nans

Hi all,

Just found your thread.  I was diagnosed at the end of Febuary at 47, had a MX in March did 6 months of chemo, 4 A/C and 12 Taxol and am just finishing up 30 doses of rads.  Now that I am finally finishing up treatments I am learning a little more about what it means to be triple negative.  I don't think my brain was ready to deal with it before then.

Has anyone been told not to drink now to help decrease recurrence?  When chemo ended and my oncologist gave me the ok to eat raw veggies again she said that I could drink in moderation too.  She defined this as 1 or 2 glasses of wine a day.  Now that the holidays are here I find people offering wine at every event.  I've had a glass or two but can't help but worry it is not a good thing.  When I researched it I found articles saying drinking was linked to recurrence but it usually mentioned it in connection with estrogen. 

I think I'm just starting to worry in general now. After seeing a docotor constantly for almost the entire last year the prospect of not having some sort of treatment makes me feel like I'm not doing anything to be sure this is gone. 

My next worry topic is sugar...but I think I'll let that one wait until after Christmas.

BernieEllen

Titan i so agree with your way of thinking.

Cat so sorry you are having a difficult time. Thinking of you and Bak.

Hi nans, i do have my red or rose wine. None of the doctors here have a problem with that.  Just take it easy and enjoy yourself. 

Suze35

Well, I continue to come here for the obvious support, and that won't change. But I also come here to try and help others educate and advocate for themselves. Far too often I see women just blindly follow their protocol, even when they have concerns, and I want to encourage them to speak up, to know that it is okay to question - it isn't the doctor who's life is on the line. If I can help even one person, then my hanging around here is worth it. I never want to scare anyone with my story, just inform.



Heidi - I can very much appreciate where you are in moving forward, which makes what you do even more awesome. Dropping by with a lighter spirit is sweet and thoughtful - and hopeful for all newbies.



I am sorry to have to welcome all new women, but I hope you'll find this thread informative, supportive, and what YOU need it to be. And if that is a soft landing spot for a year, than that is perfect!



Susan

mccrimmon324

Suze, I have to say while I was going thru treatment and posting questions or concerns you definitely had / have a way of answering and calming my nerves.  You have most definitely helped me get thru some pretty rough days.  As all of you have, really.  Thank you to all of you.

ksmattews, glad to know you didn't ask to see your path report either.  I got a brief glimpse of mine while my first Onc was going over it with me in super speed broken spanish and during a very high anxiety moment.  The most I caught out of it was the additional 4mm of DCIS that was a suprise and I'm 8 out of 9 on that scale we talked about earlier.  That's more than enough info for me.  Right now I need to focus on the "clear margins and no node involvement"

Survivor2Be

I think it is VERY important that you have your path report and understand it.  You can request copies of it and you have the right to have your physician (either surgeon or oncologist) explain it to you.  I have copies of every report or consultation that a physician has completed on me.  It is also nice to refer back to when your mind is a little slow!

MBJ

catwhisperer:  My onc went into my chest wall as extra preventative insurance against recurrence.  I hope that's what your BS did for you, too.