Newly Diagnosed

CarolS612

I learned a week ago that I have a stage II, Grade 3. Triple negative, IDC in my left breast.  Initial testing of 1 lymph node was benign.  Any words of advise or encouragement about how to get through these initial stages will be greatly appreciated.  I can't see the oncologist until Jan. 6.  

 

Thanks!

joannstar

Breathe deep and relax...

I was diagnosed with Stage 1 grade 3 Triple Negative IDC (in right breast) June 2010 -- just 4 months after getting married for the first time (I was 57). Very soon your life will become all about cancer treatment so take these few days to relax (I got a massage and took a short trip).

In all probability you will have chemo (I had 6 rounds of T-C, based on my age and type of cancer) and radiation (33 treatments) after either lumpectomy or mastectomy although some paitients have chemo before surgery. TNBC is  treated agressively, but the good news is that it responds well to chemo. I googled the TNBC website and the ACS website, both of which has a wealth of information.

Try not to be too scared, many women have had this treatment and are alive years later to guide you through. I celebrated 4 years in August and my onc said that my chances of recurrance have dropped to be the same as other people now (the first 3 years chances of recurrance is higher for TNBC). It hasn't spread through the lymph system which is a very good thing!

Both chemo and radiation are doable--not fun, but you'll get through it. I wish someone had told me to clean my house before treatment because during treatment I worked full time and was just too tired (and my new husband did all the shopping and most of the cooking, but the cleaning just didn't get done).  You'll discover what is important to you and ignore the small stuff. Fresh foods are to be cleaned very carefully and your tastes will change (due to the chemo--almost everything tasted metallic so I ended up using paper plates and plastic ware).

"Friends" will tell you all about the breakthrough treatments that their mother's uncle's wife had with amazing results. These friends, while concerned are not doctors. Find an oncologist that you trust and do what he says.

Cancer/treatment took about 18 months until I felt some sense of normalcy. I was very public about my cancer and found many wonderful people to help me through the scary times.

Good luck to you as you begin the journey that many have traveled before.

Hugs,

JoAnn

Puffin2014

words of advice

Joannstar has given you excellent advice. A couple things I'd add. When you start meeting with the various doctors you're going to have a lot thrown at you quickly. Take a second person with you to your appointments, both for moral support and also a second set of ears to listen. Ask your doctors if it's OK if you record the appointment to listen to later (easy to use the voice message on your smart phone or iPod). All my doctors were OK with that and it's unbelieveable how much I heard the second and third time when I'd listen at home later.

Be careful where you research on the internet, the other web site my oncologist said was reputable to use was breastcancer.org and I have found it extremely helpful. Besides having excellent educational articles, their discussion forums are subdivided, so you can follow forums specifically for those who have triple negative, have had mastectomies, chemo, radiation, etc. I started with the lumpectomy forum, then moved to the chemo forum, then the radiation forum, and now am active on the Arimidex forum. Be sure and mark any forum you like as a favorite so it's easy to find again and easy to see when new responses have been added.

Ask if your center has a chemo class when you get to that point, knowledge is power and the more you know about what to expect the better you'll be able to take measures to prevent problems, or to deal with what does develop.

Try to relax and enjoy the holidays with your family, and I definitely agree with Joannstar to get whatever projects done that really need to be done now while you have the energy. Eat healthy, get your exercise, wash your hands and stay away from sick people to keep yourself healthy.

Write down your questions and take them to your appointments.

Check back and let us know how you're doing, or if you think of any questions we can help with.

cati0314

You are not alone!

Hi, I'm so sorry that you have joined our club.  I have stage IIB, grade 3, E-/PR+/HER2-.  My tumor was over 6 cm so they gave me the chemo first to shrink the tumor and possibly target any cancer cells that had traveled from the tumor to other parts of my body.  I had a bilateral mastectomy after my chemo and radiation after that.  I am on Arimidex over 4 years which inhibits estrogen, which is what my tumor feeds off of since it is hormone positive.  If you are triple negative you will not be given a hormone blocker but there are other alternatives.  Everyone's cancer is different.  I tested positive for the BRCA1 gene mutation so had a radical hysterectomy after the radiation was done.  That greatly reduces my chances of ovarian cancer, which were great due to the gene mutation.  Yes, its all a shock to the system but you will go through your treatment and come out a survivor.  I'm sorry that you have this during the holidays....so did I...diagnosed on 12/9.  My margins were clear and my sentinel node biopsy was negative for cancer in the lymph nodes.  Those were good signs but the darn thing was huge and that put me into stage IIB.

 

Please keep us posted when you see the oncologist.

 

Stay calm, stay strong, you'll be fine!

 

Sharon

CarolS612

Thanks!

Thank you ladies for your support and words of encouragement!!  It helps to hear from someone who knows what I am going through.  I received a call this afternoon and have an appointment tomorrow at 3:00 due to a cancellation.  Must say, now this all seems so much more real....but am glad to start and get this "ball rolling!"  

 

 

GlowMore

CarolS612 said:

Thanks!

Thank you ladies for your support and words of encouragement!!  It helps to hear from someone who knows what I am going through.  I received a call this afternoon and have an appointment tomorrow at 3:00 due to a cancellation.  Must say, now this all seems so much more real....but am glad to start and get this "ball rolling!"  

 

 

Good Sign**

Take that call for an appointment tomorrow instead of January as a GOOD SIGN **   Let go of the Fear as fast as you can because Fear clouds our thinking and Clear thinking is vital.   I was diagnosed with the same thing as you in 2002 and now it is 2014...and I am still here.  If you click my picture you can read my page for the details.   The other girls have given you very good advice....I would say take it day by day...and trust your gut instincts.   It is also a very good sign for you that the lymph node was negative....that actually is a Gigantic Good Sign.     You Can Do This***  Prayers for Courage and Strength and keep us posted.   Glo

GMcD

GlowMore said:

Good Sign**

Take that call for an appointment tomorrow instead of January as a GOOD SIGN **   Let go of the Fear as fast as you can because Fear clouds our thinking and Clear thinking is vital.   I was diagnosed with the same thing as you in 2002 and now it is 2014...and I am still here.  If you click my picture you can read my page for the details.   The other girls have given you very good advice....I would say take it day by day...and trust your gut instincts.   It is also a very good sign for you that the lymph node was negative....that actually is a Gigantic Good Sign.     You Can Do This***  Prayers for Courage and Strength and keep us posted.   Glo

I am also sorry you need to

I am also sorry you need to be here,but this site was my lifeline during my journey.  There is no question too small, someone will be able to help.  Also, on nights when I had trouble sleeping there was always someone here. Sending warmest thoughts your way.

GwynD

Castir1

im rite there with you. I got the diagnosis call Nov 10th. Stage 2 grade 3 breast cancer.  Had a lumpectomy to remove 3cm tumor and lymphs were also good. Last week another surgery to put port in and the next day I started chemo. what has helped me not go insane is to not or stop myself from obsessivly worrying, whats to come, stressing out, how this treatment is gonna effect me, how I mite react to this or that, all the what ifs, ect, because no matter how much we mentally do these things to the point of cracking none of its gonna change what's to come or happen so I figure why make myself miserable or sick now I'd rather enjoy the now. Good luck at the onc appt and find a cancer resource center nearby, they have helped with so much and they are like the Drs extension explaining stuff in more detain!!!!