Calling all TNs

OBXK

Flimsical- welcome. It sounds like you have all your ducks in a row.

I was 42 when I was 1st dx and I dreaded telling my mom. I knew it would trigger a mother's biggest fear. Let her help you if she lives nearby. That will help her the most. Wishing you all the strenght you need as you begin this journey.

We're here if you need us.

Ka-cey

Lauren

I recently purchased The Cancer Fighting Kitchen and I love it.  I wish I would have had this as a resource 3 years ago.  If you like to cook, you will not be disappointed.

Kim

Nanc620

Hi Lovelies!

Re: cookbooks...I love Rebecca Katz book and also a fairly new one called "Kicking Cancer in the Kitchen" written by two survivors.  It is flat out wonderful.  They are real and so encouraging.  The first half of the book is about their journeys and the second is filled with recipes.  We have been trying them and I have had no complaints so far ;-)

Chemo begins Wednesday...I'm filled with nervous energy, didn't sleep more than 4 hours last night even with an Ambien, Xanax and 2 homeopathic pills my naturopath suggested.  

To all the new sisters here...welcome and lots of love.  To the survivor/thrivers...thank you for your love, hope and support.

Now to try and get some sleep...

blessings,

nanc

EnglishRose75

Hi Flimsical, I was diagnosed last June.  I'm 37, and like you, no family history and none of the traditional risk factors seemed to apply to me.  I also wonder why, but obviously never will.  I am also weakly progesterone positive (3 out of 5) which seems to be more common among younger women.  Apparently only about 3% of breast cancers present this way--lucky us!  If I were you, if you don't already know, I would find out how "weakly positive" you are for PR.  My MO has put me on Tamoxifen.  He feels that if the side effects are not bad, then it's worth a shot.  I've scoured every resource on ER-/PR+ cancer, and there seems to be a view that there has to be "a functioning ER pathway" in order to get any level of progesterone positivity.  In any case, I'd ask your medical team about it.

I also have "The Cancer-Fighting Kitchen" and would highly recommend it.

Nuke number 9 today.  Almost half way there!

NavyMom

Flimsical, I found an informational booklet for moms who have daughters with BC.  I am sorry that I cant remember who the author was.  I agree with advise to let mom help.  I had BMX before chemo. While recovering at home I asked my mom to come over and wash my hair.  Was probably the best thing I could do for both of us.  I did not have her come to chemo tx.  But she would come over later in the evening and made a habit of bringing a gift of sorts. Made her happy.  I know that she was very nervous while I was in tx.  A mom is a Mom no matter how old their children are.  Good luck to both of you.

mags20487

Hi filmsicle and welcome to out TN family.  My mother at first was a basket case.  She blamed herself as she does for everything--like she gave me the cancer.  It finally came to a point where my husband and I had to sit her down to talk.  We told her that her behavior did not help me or give me strength to get through this ordeal.  From then on she has been better and makes this no longer about her or the way she feels...at least she does not vocalize it around me anymore. 

Maggie

MonikaV

Hi Girls ,

   It's been six months since i last posted here... So i wanted to say hello, wish everyone a happier year. I am doing ok still in remission.

Have a great day everyone.

Monika

Lauren15

Hi Monika - excuse this question if it is way off, but I'm still learning about this tn cancer I have.  If yours was DCIS (which is the best kind), stage 1, etc., why do you say you are in remission.  Isn't the cancer gone?  I thought remission was only for cancer that was not totally cured.  I guess I need to do some additional research.  Good to hear you've been clear.  I'm still waiting for the results of the BRCA tests.  Thanks, Lauren

OBXK

Lauren15 - as far as I know, there is no cure for TNBC cancer. We all just hope for long remissions, when there is no evidence of disease.

I hope your BRCA test comes back negative.

Lauren15

wow, didn't know that.  I totally misunderstood then that I was doing neo-adjunctive treatment with the hope that the cancer would be shrunk or totally gone by the time I had surgery (which I was planning to do BMX to lessen the chance of recurrence).  I'm ordering that triple negative book now.  I better read it.  Thanks for the info.

mags20487

OMG!!!! I did not know this Karen....I am in shock.....how come my doctor did not tell me that TN was not curable.  Does this mean that we basically spend the rest of our lives waiting for it to come back???? I am so confused.  My doc said that if I went 3 yrs out my risk of recurrence went way way down.

Maggie

placid44

I believe there is a possibility of tn cure, either if the tumor fully responds to chemo or if the treatments in total eradicate it. I saw a Dr. O'Shaunessy (expert in tn) quoted sometime this year saying "we cure most of those," referring to early stage tn. She didnt mean that most tns have a complete response to chemo necessarily, but that they are able to get rid of many of them with treatment (chemo, surgery, radiation). I hoping my neoadjuvant chemo got rid of mine. The mri halfway through taxol looked good. Surgery is feb. 12.

placid44

I was likewise told by my doctors that after five years with no recurrence, tns are considered cured. That doesnt mean we couldnt get a new primary. Hormone positive bc can recur over 15 years.

OBXK

http://www.eurekalert.org/pub_releases/2013-01/wcmc-rra011113.php



Maybe there's hope!

OBXK

Until my recurrence, I wasn't aware that breast cancer could morph from positive to negative. And when it spread to my liver, they were hoping it had changed back to positive.



Before you worry yourselves to death, remember the odds are in your favor!

Tazzy

And in my case went from negative to positive.

OBXK

Sneaky stuff this FBC!

Hopex3

Yes, I have heard you are never cured but treatable!

I have met so many people with TN in my area and they are all doing great. And there is so much research being done now on TNBC which give me hope.



My onc also told me if it doesn't reoccur within three years then the chances of it reoccurring are the same or even less than someone with positive BC.

These are all just statistics. You just have to try and put that fear in a tiny little box somewhere! I'm working on that but right now my fear is busting out of a refrigerator box!

SherylB

OBXK and all,

The way I look at it (IMO) it is a remission when all evidence is gone no matter how it was treated. To me it is like diabetes, you are never cured of diabetes (some would argue). Even if on no medications at all and I live healthy with food and exercise I still have diabetes. As with any disease the goal is to remain ever vigilant, get all tests done as recommended, and take care of our health.

Hang tough, Sheryl

Cocker_Spaniel

I agree with SherylB and OBXK concerning remission.  When I went for my scan a month or two back everything was clear and there was no cancer at all but what I want to know now is, is it the same two months down the track, is there still no cancer.  Also I wonder why did I get it in the first place.  I was 65 at the time. Why didn't I get it earlier.  What did I eat, drink, do, what made the cells change at 65 and not earlier.  What if  I do one  of these things again will it come back, when will it come back.  Why was it receptor negative and not positive, what made it take the negative path for me.  I was never promised a cure probably because of the TN although my doc's were hoping for one but if we are cured why do some people pass on, why do some recur.  Who the heck can answer my questions nobody I suppose, its all just a nerve racking, horrible wait and see for me.   My diet has never changed, I have always been a plain eater.  Very rarely got ill may be a cold once a year but nil else.  Sure I smoke but I have done that since my mum was dying at 16 years of age so why hit me with cancer now.  I don't overly exercise but I never have done. I have never drunk alcohol so it couldn't have been that.  What the hell is in the air, is it that.  I hate all the why's and when's.  I appear happy and carefree as I genuinly was before I got BC but I'm not now, I'm full of doubt all the time and it drives me crazy just waiting and wondering. Is this just our fate and we will go when its our time, who the hell knows.  Remission or cure whichever it is its the waiting that kills for me.  

Well now thats all out of my mind may be I will feel better.

Titan can you hear me talking to you again. I REFUSE to get OLD.  I will live until I am 90.  91 is old to me so I will make it 90.  I don't look in the mirror now to see if I am getting old unless I have my eyes shut!!   One day at work two pot head chaps came in and wanted a repeat script for methadone.  The Doc refused to give them anymore and told me to tell them which I did.  Because they were unhappy about this one of them called me an F...... old bag.  I said never mind the swearing don't you call me an old bag, suddenly everyone in the surgery burst out laughing.  Seriously I may be older in age now but not in spirit unless its a day of my "what if and when's" then I feel positively ancient.

Big warm hugs to you all ladies from little ole NZ. 

Cocker_Spaniel

Lauren15

Love the kitty picture/saying!  Question about surgery - since I'm doing neo-adjuntive treatment, I haven't  had surgery yet, but want to start getting an education on all the options.  I pretty much know that I'm going to decide to have BMX (even if the cancer is gone and only a lumpectomy will suffice).  I've always wanted a tummy tuck and new boobs, so I'm trying to look at this positively and with excitement.  Any advice on what you've seen and/or which board/websites are good to get on?  Thanks!!!

Hopex3

Lauren..you can check out the surgery 2013 and see what they are saying about their surgeries. I also did chemo first and am having a BMX with reconstruction next week. My doctors and I cannot find my tumor (by touch) anymore. So the chemo clearly worked. I just hope they don't find any positive nodes. I also could have a lumpectomy but for many reasons I am going with a BMX. My plastic surgeon said he prefers to do the expanders with saline instead of a tummy tuck. He said that having a tummy tuck takes away your abdominal muscles and causes problems down the road. S, I don't know...my sister had a tummy tuck years ago and doesn't have problems other than she gained a lot of weight so now she has two tummies because of the scar. When you meet with your plastic surgeon, he can give tell you about all the options.

Tazzy

Annie:  ((hugs)) sounds like you need them.    I dont think it is anything we do or dont do to get cancer.... we were just the unlucky bastards who did.  My friend is a triathalon competitor and got bc... other friends, drink, smoke and are as healthy as anything.  

Fighter_34

Cocker you wrote my thoughts exactly. No matter how far out I get I still think about CANCER. I am not as consumed by it as I was in the beginning. I know life is going to end for me one day, but not now I have little ones, and like you Cocker I want to live until 80 though!!

Every little ache and pain sends my mind wondering to the dark side. It never gets totally easier, but you can find happiness through the aches, pains and scares....

minxie

Hello ladies, just checking in on you all again... I am having my tissue expander surgery on Monday morning. And then out of work for 3 weeks to recover. I'm a bit anxious, which I shouldn't be after the million surgeries I've already had for this damn cancer. But I worry that when they open me up they'll find even more cancer, again. My nightmares have increased drastically too, and I can't get a therapist appt until a week AFTER my surgery. Yeah, I need to relax.

liv-

minxie, damn cancer always at us in some way.  i dont think they will find more cancer, when is the last scans, bloods  you had?  can you get to local Dr and get some anti-anxiety meds to calm you down.

deep breaths and ((hugs))

xx

InspiredbyDolce

CockerSpaniel:

Here is some information regarding the gene mutations of cancer.  It is not caused by one thing, but a factor of many over a period of time (they suspect).  To understand the full concept, you have to click on each box you will see the items that can cause that.  But one factor is probably not enough -- so you can see by each picture it takes several things over a course of time - supposedly.'

http://www.wdv.com/Cancer/Research/index.html

Titan

My onc told me that ANY type of breast cancer is not curable...but...big but here...we can all be in remission for a very long time..like until we die of old age or something else....come on ladies..you all know someone very old that had bc many years ago.....most of us do survive...but not all and that is what sucks...we need a cure now....and I refuse to believe that it is anything that I did...not going to go there....we've just got to keep on keeping on.....and if eating healthy and taking vitamins and excerising helps then heck ya...I love to run..just love it..not sure if it keeps the cancer at bay..time will tell but I am addicted to it now and I know it does me good in many other ways besides preventing BC....

The good thing is..that tn is the HOT research going on right now...I love it....it's all good...and hopefully soon our daughter's won't have to worry about it like we do if they are diagnosed....

I hear your voice Cocker...I hear you well...love you!

LynnME

Flimsical, I was not as young, 46, but no factors and in great health, or so I thought!! I waited until after the biopsy to tell my mom. I told my oldest brother first who was very supportive and went with me when I told my mom. She was very upset, but also very supportive. She went to every chemo with me, even when I said I was fine by myself. We talked and played games together to pass the time and she would make sure I got home safely then head home herself. She was 77 at the time and lives an hour and a half away. We have always been close, and going to chemo was her way of supporting me. It helped her as much as it helped me. I am so glad she was able to be there for me and I for her.