Calling all TNs

Just found out today I am positive for BRCA1. TN and BRCA1+ No one in my family has even had breast or ovarian cancer. What now I wonder? Can anyone tell me about their experience with this? Thank you thank you.

Amyadele...I am BRCA1 positive and was diagnosed with TN last year.  I had a bilateral with immediate reconstruction, TE and implants put in earlier this year.  I also had my ovaries and fallopian tubes removed.  These recommendations came from my doctors.  It does put my mind a bit at ease about recurrence.  Do you have any particular questions you want to ask?  Let me know.

meglove - I had terrible headaches that seemed to settle in around my eyes and sinus area starting about 30 minutes into the Cytoxan.  Ask them to slow the drip down to about an hour or more and it should help the headaches.  It's more time in the chair, but worth it.  I hope you're feeling better today.

sclst - I bought a wig, but never wore it.  I was a scarf lady.  When I went back to work I wore dressier scarves until I had some hair, then I went without. 

LJ - at the moment my DD has my camera so I am unable to take a picture, but plan to over the weekend. 

Sugar - looking forward to seeing you - it's coming up soon.  Did you get the stuff we mailed?

I could use cleaningforareason now that I'm back to work!  When I was on medical leave, I had so much more time.  I work with a woman who went back to work from maternity leave the same day as me and she talks about her great nanny who cleans, cooks and even makes lunch for her. LOL...maybe Santa will bring a nanny for me!

Jenn - yes, the trip is fast approaching and we're looking forward to it. The stuff hasn't arrived but I'm sure it will soon.  I will let you know. The mail is probably slower due to Christmas and crossing the border. 

I wore a wig all the time when I was out. For me personally, I tried to look as much like my old self as possible.  I wore makeup every day and my wig. I didn't mind the wig as it was winter and it kept my head warm. Had it been summer, I might have felt differently.

LauraJane - wow, you had a lot things lined up for today. How ambitious! My tree is up but it's not decorated yet.  I have presents to wrap and my daughter and are going to bake some cookies or something on Sunday.  So this weekend we'll be busy.

I hope everyone is feeling good today.  

My pathologist who had done my receptor tests, sent my tissue to UCSF for re-testing.  UCSF says that they agree with my first receptor tests, which is less than 1% estrogen, 2% weakly positive progesterone and HER hegative, so pretty much I have TN.  Anyway, my Onc. still wants to put me on hormone therapy such as aridimix, and I am considering that now.  Anyone with the same experience?

Also tumor board looked at my right breast which has atypical ductal hyperplasia, a pre-cursor to cancer.  My onc. says that I still have greater risk of recurrence in the left breast, rather than right, where the cancer was, even after surgery and radiation.  The tumor board recommends that I get watched very closely as I fall in the high risk due to the atypical cells.

I have already had surgery in left breast with clear margins and am headed towards radiation after 2 more chemo's.  But now I am thinking maybe I should have bilateral mx.  I can't decide what to do.  My onc. says if I was his sister, he would not recommend any mx. in either of the two.  My general surgeon says if I was his wife, he would recommend bi. mx.  but then he is a surgeon and likes to cut, right?  I just don't know what to do.  I wish my case was such that they would tell me that there was no other way except to have bi. mx, but I am in the middle.  I don't think there are way too many studies done on this subject whether atypical ductal hyperplasia becomes cancer and if so what percentage.

Anyone has any information on this, please?  While my greater worry is metastasis, local recurrence is my other big worry too, as if one big life threatening worry is not enough.  Anyone please has any comments, please tell me what to do.

Does anyone have a website where I can go and see what reconstructed ones with implants look like.  Is there a good website to go and watch pictures and procedures?  The posts here regarding recon. is very confusing to me as I don't understand the expanders, etc. and don't know how to begin educating myself before making my decision.

Please help me. 

my first taxol went bad.  spent day two in the er checking out the chest pain,hard time breathing, swelling of limbs and neuropathy.  Doc thinks i need to change meds for the week after, it was an allergic, toxic, reaction and sounds a bit like yours.  hope you can check it out.

cc4npg - what a nightmare.......I am so sorry you had to go through all of that, I can't imagine.  I really like my onc, but I know that he wonders where I get my information or how I learned about certain things.  I think that sometimes drs find it hard to believe that we do know what we're talking about.  (((hugs)))

pinkpee - same thing for you....ugh....a day/night in the ER is not fun.  I landed in the ER after my 1st chemo, then was "lucky" enough to get a nurse that actually said to me after I told him what chemo I had "that's above my pay grade, you'll have to talk to the dr about that".  I thought my DD and DH would fall out of their chair.  (((hugs)))

LJ - glad to hear you accomplished most of your To Do list.  I have the week before Christmas off from work and plan on doing some baking then.  I don't bake often, but always get the urge during the holidays.

Hello, Ladies.

I am 42 and was diagnosed with IDC in my R breast in Sept 2010.  Had bilateral mastectomy in Nov and found out that I was TN a week after surgery.  Was devastated by the diagnosis but did not let it keep me down too long.  I am determined to live until I'm old and gray.  I am going to grow old w/my lovely husband and watch my daughter grow up and get married and have kids.  Will be starting chemo (ACT w/avastin - clinical trial) on 12/14.  No radiation since my tumor is less than 5cm.  My husband thinks maybe I should push for radiation after chemo.  Anyone ever been in this situation?  I am nervous about the effects of chemo but ready to get started. Any advise on preparing for my chemo would be greatly appreciated. 

Thanks so much.

Amy 

Hi Ladies,

 I usually don't post in this thread, but I am TN too.  I did chemo before surgery... surgery is in 3 days, modified radical mastectomy and full auxillary dissection.  For a month, I have felt pain on my chest.  Onc. thought tumor pain.  And just today I found a lump approx. 1-2 inches below my cancerous breast on my rib.  It is approx. o.5-1 inch bean shape and is movable.  It feels fairly hard and tender to the touch.  What could this be?! What should I do?! I can't phone my onc. until Monday.  Can I have the breast surgeon remove the lump during my mastectomy to have it biopsied?! Help me ladies! I am freaking out!!

Thanks 
X & O

slcst12:  I just didn't want the attention of a scarf plus I started chemo in November and it was too cold to not wear a wig.  I got the filament type which doens't scratch and had it styled to look less fake.  I received many compliments on my "hair"  and most people still don't know I had BC.

Laurajane:  If everyone of my crowns had a root canal I would be toothless. LOL!!!  It's 11:45 am here and I am in work out wear but that is code for laounge around the house clothes.  Oh, and I am in bed, too.  Enjoy decorating and making cookies.

HeidiToo:  Can't wait to see pictures of it all lit up!  Sorry to hear about the vaccuum that won't suck.

Hi, Teka.

The reason I am stage II was because of the size of my tumor.  It was 2.5cm not 2.0cm as I had on my profile...sorry.  Will have to correct that  I had the option of getting the lumpectomy also but opted for bilateral mastectomy just for my peace of mind.  Am a worry wort. 

I think we are in the same clinical trial.  I will be in the Phase III of the ECOG 5103.  When they offered me the chance to join the trial, I just grabbed it.  Pathetic...but I was willing to do whatever it takes to decrease the chance of recurrence.  I know nothing is ever 100% but I'm hoping it will help.  So you're in Arm D of the study? I'm crossing my fingers that I'm not the small percentage on the placebo.  

Thanks so much for responding and the advice regarding the anti-nausea meds.

AmyCK.

OK!

Amy, NannaBaby, and Michelle - so sorry you all had to join us on this website.

Amy - I was in E5103 trial but when it came to the Taxol part I was allergic to it.  They had to switch me to Taxotere and I had to decide whether to stay in the trial or get out.  I decided to get out because at the same time they came out with a study for Stage IV breast cancer patients that the avastin did not extend life enough to be worth the SE's.  I did receive 5 treatments of avastin before I got out of the study and the study is to determine if avastin helped people with non Stage IV BC.  If I was not allergic to the Taxol, I would have stayed in the study.  The more they can learn the better for future patients and since I was getting the normal chemo anyway I thought any extra chemo would only be to my advantage.  Wish you luck.  I had a partial mastectomy so I am now finishing radiation.  I did not have a lot of bad effects from chemo but I was VERY lucky.  Everyone is different.  Some of us luckier than others as I am heard you have read on this site where some of the girls are explaining their SEs and how bad they are.  I feel very fortunate.

NannaBaby - sorry for the stress you are going through.  Talk to your doctors.  They will know what to do.  I don't know of anyone you can contact this weekend.  Hang in there - you can do it.

Michelle67 - welcome but sorry you have to be here also.  This is a great site for support.  I can't go a day without checking it out.  You will learn a lot.  Wish I knew as much when I was first diagnosed but did not find this site until I was in chemo.  Take care.  

Nannababy - so sorry for the scare and that it is happening over the weekend.  I don't have advice to offer, but Claire's does sound like a good one.  In the meantime I'm sending cyber (((hugs))).

Amy/Michelle- welcome to the place none of wants to be, but if you have to find a place to learns, vent, talk or ramble, this is the place to be.  I couldn't have gotten through this without my BCO sisters.

I was in the Avastin trial, but in the end found out that I had been receiving placebo.  However, just being in the trial will help other women down the road.

Heidi - looking forward to the video and/or pictures.

Well.....my DD is home from college and we decided to run some errands and get a few things done.  I did what I needed to do, but running in and out of stores during the Christmas season is not easy.  We saw one parking space steal and the subsequent fight, numerous baby meltdowns and were "assaulted" by the poor Boyscout kids each time we walked passed them - they were selling popcorn.  However, on the upside I was able to get a few gifts that I needed and ran into a Mom that I hadn't seen in two years.  Her DD is one year older than mine and both girls cheered together in highschool.

Here is the dilema I faced....we hugged and the first thing she said was "look at your hair, it's so curly,  I love the new style".  Then she continued on about "new" look.  It was such an awkward moment and I finally said quickly that it was from having cancer and changed the subject to the girls, college etc.  I felt bad for telling her it was from chemo, as it may have made her feel weird, but then I didn't know what to say and that was what came out of my mouth at that moment.  Help??? What do y'all do???

I cannot keep up with the pace around here!  I need to stop by more often just to try to get to know the regulars! 

 So I posted a few days ago that we're going ahead with surgery, and someone (sorry - forget the handle) suggested its best to do chemo first.  So yep - now I'm thinking and second guessing etc..  I appreciate the advice - I do.  I am going to talk some more to my surgeon and onc before we proceed, which I would be doing anyway.  I spent today up and down all day..  reading the stats fur TN vs. other BC..  survival rates and all that.  Also been imagining that its in my brain cuz I've been having funky headaches and vision issues...  paranoid and stressed out likely the explanation - but thinking about feeling this way for at least the next 5 yrs really sucks.

 BUT I've turned the day around and did some time on the treadmill, had a healthy snack, watching Its a Wonderful Life and getting ready to do a little housework and shower before bed.  Gotta fight this thing, ready to get started.

 So sorry to hear some of the difficulties many of you are facing.  I'm glad we've all got a place to come and share where others understand.

Amy