Calling all TNs

HI girls first of all I want to say thank you to all of you for asking about me and your support.  I finally got the results of my ca125 and my uterine biopsy.  Tumor markers are great and my biopsy was all clear!!!!  Thank you God!!!

Beccad- I sure hope you are feeling better and get out of the hospital soon.

CS- I hope your next treatment is much kinder to you.

Clowngirl- I will be thinking and praying for you tomorrow.  I know you have to be a nervous wreck.  Good luck!

Minxie- so sorry to hear about your reoccurance!  I sure hope it is only local and has not spread.  I am not sure about the chemo either.

Teka-yeah for your good results.

I am sorry if I forgot anyone... 

KS - thrilled to hear some wonderful news! Congrats!

Hi just been diagnosed with Tn I am terrified I am 39 now I have to wait to go and get a cat ct scan done on monday 14th may  to see has it spread  I am having my right breast off  the tumour is 5 half cm roughley . I am 40 years of age  can anyone tell me is this life threating  as I really would like to know  thank you in advance I am from Ireland 

Caroline71 - Oh dear, you are very young, but no need to panic. You will be OKAY.  I am wondering how did they find the tumor - by mammo and ultrasound?  And I believe that you already must have had a biopsy which showed the cancer cells right? In my case, I went to surgery straight after they found the cancer cells. At surgery, they did a lumpectomy as well as they took one sentinel node out.  After pathology of the tumor and sentinel node, they determined that it did not go into my lymph nodes.  Treatment was based on that. I did not have a CT Scan at this point.  After all was done, before chemo, I then had a petscan done to see whether there was cancer anywhere else in my body.  Thank God all was clear.

Unless they have your pathology and CT scan done, nothing can be determined. Please don't assume the worst at this time.  TN's have great hope with chemotherapy.  Most probably you will have to have chemo, since your tumor is big and maybe with the size, it seems like it may not be DCIS, which I believe is pre-cancer, stage O.

Caroline - please make sure you have a very good oncologist.  Even with a 5.5cm tumor, one can save their breasts by treatment first to reduce the size of the tumor before surgery.  You will have to make that decision after you get all your test results back.  Please look at all your options.  I think it is wrong to think at this time that you will HAVE to have a mastectomy.  This weekend, please research and read various subjects on this website. Information is power.

Good luck and our prayers and love are with you.  You will be okay and live a long healthy normal life, this is just an obstacle and a trial in your life.  Please believe me, you will truly be okay as there are treatments and hope, even with TN.

Caroline, we all understand how scared you must be. Please make sure you have an oncologist that is experienced with TN. I am going to be honest with you. All cancers can be life threatening, but with proper treatment, there are lots of us survivors our there. First you have to wait to see the results of

your CAT Scans. When you have your surgery, they will also check your lymph nodes to see if the cancer has spread to the lymph nodes. After that you will have more information about your disease. Don't be confused by the many different modes of treatment you hear about on here. Some of us had our chemo before surgery, to shrink the tumor. It is also done that way sometimes, because leaving the tumor in let's the oncologist see if the chemo works effectively against the cancer. Some of us had lumpectomies and some of us had mastectomies. What you chose, will be a combination of what your doctor recommends, but whichever one you chose, it is your choice. Compared to other cancers, TN is a rapidly growing tumor, that's what also makes chemo an effective treatment, because chemotherapy kills rapidly dividing cells

Most important....this is survivable. Chemo isn't always pleasant, but it is definitely doable. Please don't hesitate to ask the group questions. We often use abbreviations and don't feel dumb to ask, we remember being newbies and having to ask lots of questions.

Another reliable web site is www.tnbcfoundation.org

Hi Ladies. So many many posts.

LRM16/Christina19/OBXK/Hope60/Babs73/Lovelyface/Onvacation/Kathryn.

Thank you so mych for your replies.  I genuinely did not believe it was an anxiety problem with the Taxol.  I have always been highly anxious and gone through worse than this in my lifetime and have never experienced it even with my first AC but the Oncology Nurse thought it was.  I thought I was going blind because I couldn't see at first and then the red face, pain in my chest and other things started.  My nurse was in the room but I couldn't see him.  Luckily he turned the machine off straight away when I called to him.  The trouble is is it going to happen next week again.   Getting cold feet now and would like to stop it but I suppose its good for me somewhere along the line. Cancer Sux.

KSmatthews - thank god for good results.

Teka - yeah for good results.  We need all these post to keep us going.

Caroline71 - sorry you have been diagnosed with TN. I too was terrified when I was diagnosed . I had left mastectomy with four nodes and cancer was coming out of the nodes. But although nothing is certain in this life I believe it is not life threatening, far from it as we are all here to testify to that.  For me personally mastectomy was the best as I just wanted them to take the breast all away and the cancer with it. But its a personal choice and you will make the right one for you.  We have our bad days and some not so good results but we rise up again and fight and boy do we fight.  You can and will get through this as these ladies told me when I came on here.  Some things you don't want to do and don't want to have happen or to hear  but they do and still you fight, you just go on. You will come out of the other side of this a well, healthy  and strong woman. Just keep fighting. 

Clowngirl - thinking of you love and and hoping everything goes okay.  If you try hard you will feel all of our hands holding yours.   

If I have left anyone out my apologies but hard to keep up nowadays. Warm fuzzies to everyone and heaps of love.  Annie  

GoodMorning, Gals.

Minxie, so sad to hear your news.  Hoping you have a plan in action soon.  We will be here to help you fight the beast once again.

Becca, hope you are feeling better and get home soon.

Clowngirl,  thinking of you this morning. Sending healing vibes your way.

Caroline, you have come to the right place for support and info.  And see, you already have a new friend right there in your "neighborhood".  Good to see you, Bernie!

Best wishes to all in treatment and to all in the dreaded waiting room.

So glad to see some good test results, too.

Best thing I did yesterday....Bought my annual flowers and planted them with Suze, Mary and Laura on my mind and in my heart. 

Wishing each of you a peaceful day.

Clowngirl - sending prayers for you this morning.

Minxie - I had a local recurrence last year and yes, I had involved intermammary nodes as well as four axillary nodes.  I had a BMX with full axillary dissection, DD AC/T then 30 radiation treatments.  I was NED per a PET/CT scan in October 2011 (prior to radiation).  Sending hugs, I know pretty much exactly what you are going through.  Now I am looking forward to DIEP reconstruction towards the end of July.

Hugs,

Michelle

KS - Great news, what a relief! 

Caroline: Welcome, this is a good place to be. You will find the first few weeks quite a roller coaster of scans and doctors' appointments. It can be quite overwhelming, but just know that a treatment plan will come into focus soon and you'll be on your way to slaying the breast cancer beast. Please also know that TN is far from a death sentence - we are all living testimony of that.  Most of us get successfully through treatment and go on with life... and perhaps don't come to these boards all that often... doesn't mean there aren't lot of healthy TNs out there. Also, be careful what you read on the Internet about TN - a lot of it is overblown or out of date. You can fry your brain with all the information about there, but here are two other reputable sites to check out: http://www.tnbcfoundation.org/ and http://hormonenegative.blogspot.ca/    Sorry the links aren't working - paste and copy into your browser

(Anyone know why the insert hyperlink button isn't working? Really wish we could go back to how it was a year ago, when I could simply copy and paste anything into the reply box, instead of relying on a silly pop-up window.... never come across that on any other site.)  

Edited to add: Oh I see on submission the links are working - who knew? 

My darlings, I couldn't stay away.  to all the new people, I could not have got through without the support, help, understanding and laughter i found here.  Yes, I ment laughter because that is also a part of our being together and moving on.  It's not always the FBC it's the new family we have here.

I am so useless at keeping up with the posts but I know we are all together 

Good afternoon ladies,

 BernieEllen....welcome home.  we missed you.

Teka....yeah for good news.  so sorry you had the extra aggravation.

Caroline....welcome.  You have found a truly wonderful place for support and friendship.  Don't hesitate to ask any question.  One of us will come along and get you an answer.

KS....yeah for you too!

Beccad.....hoping you feel much better and you get the word and they spring you soon.

Clowngirl.....been thinking of you all day.  ((((((hug))))))

Cocker Spaniel.......my friend had a reaction to taxol and they immediately moved her to a different drug, I think Abraxane?  I will verify that.  I did not have issues, but would also suggest that an ativan or xanax might help with.  It certainly couldn't hurt.  Just make sure you have someone to drive you home.  You are so strong to keep carrying on.    Yes, Abraxane was the replacement for those with reactions to Taxol.  Maybe ask them about switching.

Merrinell......so very sorry for your loss. 

Has anyone heard from Bak lately? 

Hello and Love to everyone who is waiting, in treatment and playing the supporting role from their new normal.

I have been having a bit of a hard time this time.  Had a mini melt down yesterday at the BS office.  It might have something to do with having to go in every few days to have my chest drained.  Really really over it!  I cannot say how much I hate fucking cancer!  In fact just talking about it now makes me tear up.  I want my old life back.  2 years plus of continous treatment is just too much for me right now.  I know I will rally, just don't want to do anything right now.  Ugh!  Thanks for listening.  Now, where did I put those big shoes?  It's time to put them back on and just keep on truckin!

Love to you all! 

Minxie......I have been rediagnosed with a local recurrance after AC, Taxol and radiation.  Since I was rediagnosed immediately after completing treatment they deemed it ineffective and moved me onto new chemo drugs.  With you being 3 years out from rediagnosis that might not be the case.  I have a friend who is also TN BRCA- that had been rediagnosed as a local recurrance and they gave her AC again since it was some time away (1 year) from last diagnosis.  There are a lot of good chemos out there to battle this little bugger so don't worry, they will give you another cancer kicker that will get you back on the road to NED.  I have benn thinking about you every day and wish I could give you more support (in person).  Let me know if you want to know the other drugs and details of my rediagnosis.

Lots of Love to you my dear! 

Inmate - so sorry that this chemo regime is not being so kind to you.  Two years of treatment is a long time - I had 20 months so I have a pretty good idea what you mean.  I am concerned about you, why do you have to have your chest drained every few days?  Do you mind sharing the details of your recurrence?  I ask because I'm going for a PET/CT tomorrow, elevated tumor markers suggesting trouble brewing again.

Cocker_Spaniel - I believe Inmate is correct that Abraxane is often given when there is a reaction to Taxol.  It's the mixing agent that causes the reaction, and Abraxane's is known to be less likely to cause a reaction.

The best thing that happened to me today is lunch with my best friend and fun shopping for my trip to Paris - which begins two weeks from tomorrow!!!

Inmate, you're allowed a little rant once in a while. Go ahead and scream, we hear ya! (where were you skiing, by the way?)