STAGE 1, GRADE 3, ER-, PR-, HER2+

This stream of support you ladies have had going is awesome. I am a year into this journey.  I was diagnosed in March of 2008 and right mastectomy in April 2008. I had three tumors. My nodes were negative but I had cancer cells between the nodes. I finished my regime of FEC + D late September 2008 and have been on Herceptin since October 31st. My mother was a 34 year breast cancer survivor. She had medullery carcinoma which is a very low percentage of breast cancers. Unfortunately she passed away October 17 but not from cancer. I have started the process of genetic counseling because of me being second generation and I have a seventeen year old daughter.  Both my parents have had two types of cancer each and I have had numerous relatives who have had cancer and or died from cancer. Not the greatest family history.  I have had some reactions to the herceptin.  I have muscle pain and itchiness. Mind you I'll put up with it compared to the chemo.  I ended up in isolation during chemo because the Taxotere wiped out my immune system. The chemo has left me with chemobrain.  I have some severe cognitive issues. Thank goodness for spell check. The fatigue is an issue also.  Before this all happened a good night's sleep was three to four hours now that is a great nap and I sleep seven hours a night. I found during my chemo I had no taste buds and I hated eating because nothing smelled or tasted good. I imagine some of you may or may not have image issues.  I was a 46DD.  My husband is a great support to me because he changed the way I look at myself.  I was having one of those days when I was feeling very disfigured and he said I wasn't disfigured  I was modified.  So now I look at myself as being modified to live.  We are on a long journey and we are not alone.

Morning Tulipbebe and others

Everything you read about cures and diets - my mother  was not.  My mother smoked from the age of 14 till five years ago when she went on oxygen because of her COPD.  She died just ten days before her 77th birthday.  She was never a good eater and lived on coffee, cigarettes and she loved her chocolate.  She also lived thru a brain aneurysm, cataracts on both eyes, gall bladder surgery, miscarriages and skin cancer.  She was one tough broad!  I have been overweight all my life.  In the past few years I have tried to follow a healthier regime of balanced meals with only red meat once a week. Because I am in my early fifties my doctors have only recommended a mutiple vitamin, calcium and some extra vitamin D and to eat my fruits and veggies. 

I found my anniversary days hard - the anniversary of the day I found the one lump I could feel was really hard. I had always felt that at some point in my life I would get some form of cancer because of the family history - and that day was just a confirmation.  I had done self breast exams from the time I was in my twenties and knew how my breasts felt at different times of the month.  I had had cysts and when I was pregnant blocked ducts.  As soon as I felt the lump I knew it was cancer.  What bothers me now is I don't know what normal feels like anymore and have to learn the new normal.

I never wore wigs and I have always hated wearing hats.  I was quite comfortable with my bald head.  When I went outside I did wear this awesome pink ball cap that was a gift. What bothered me the most was the day I washed my face and my eyebrows washed off.  Losing my eyebrows devastated me for some reason.  My hair is coming back unfortunately very gray and my eyebrows are very very thin.  The running joke was that my husband and I had almost the same hairdo - mine is going to come back eventually and he was out of luck.

I know my husband really loves me because over the past year I have really put that in sickness and in health vow to the maximum test.  I would always hope that someone going thru this has that spouse, significant other or extra special friend there to support them. 

Keep smiling!

Hello,

I have been submitting replies here but I don't see any of my replies or anyone elses since April 10th...  I'll try again to see if this appears.  Something must be wrong with my connection.  Hope this time works.

Love,

Michelle

Hi Char, Michelle, Mommamouse and everyone,

How are you all doing?  I'm into Day 11 and last night the other SE's kicked in.  I have achy gums and jaw, bloody nose and mouth as well as tingling of the fingers.  No chemo brain so far...or maybe I just forgot I had it ;P

DD AC is dose dense.  Instead of having it every 3 weeks, I do every 2 weeks.  The onc said it's more effective that way if my body is able to take it.  I go for #2 next Tuesday...so I guess a lot of whether I continue dose dense depends on the bloodwork.  I'm also staying indoors for fear of infections. 

Char - Thanks for asking about my beanies.  Turns out that I have 7 new tumor growths since my surgery!!! 4 on my left and 3 on my right.  It could be due to the IVF I was doing before....with all the estrogen intake to simulate my eggs.  What a waste of time.  I got 11 eggs....and my obgyn was so ecstatic!  Then he called the second day all glum and told me only 1 fertilized.  I feel like...all those beanies for nothing?!  Anyways....it's a wait and see.  If it's malignant, chemo will shrink them.  If they are benign....I'm not sure what the next steps are.  Double mastectomy?!  

Take care you all!   Hang in there. 

Hugs

Tulipbebe

Charlneg,

Yes, I have made two big changes.  First, I have lost 55 lbs (still working on the weight) and now exercise every day.  A big impetus for these changes were the studies that show a healthy body weight and exercise cuts recurrence risk in half.

 As a result of the weight loss and exercise, my blood pressure  and cholesterol medications dosages have been halved which means less side effects from them.

Hello Char,

Thank you for keeping me in your thoughts. I feel real embarrassed for not knowing to simply go to page 2!!  I felt lost. I sent you a couple of private messages as I found your name in a members list and couldn't think of any other way to communicate.  I saw where you left me a message to go to page 2.  That's all I had to do!  So embarrassed.

I have been doing great!  I have had 2 Herceptin only treatments on April 23rd and May 14th.  The every-three-week regimen will continue until December.

I notice my hair coming back, it's about half inch of fuzzy stuff.  The hospital I went to has a beauty service dept. offering hats, wigs (for a fee)  and beauty tips.  The hairdresser told me from the very beginning to continue to wash and condition my hair even if I don't have any, so I did that.  She said the hair that will come back at first will be what she called chemo hair (very fuzzy and weak) for about a month of growth.  After that your own hair will appear.  So I am experiencing chemo hair right now.  But I love it!  Better than nothing!

I haven't had any side effects from the Herceptin at all.  I went for a echocardiogram in April (the thrid one since I was diagnosed with this) and the doctor said my heart was in excellent shape.

 About three months ago I told my onc. that I was having trouble with my eyes (a jellyfish-film seemed to be blurring my vision) and I had a twitching in both eyes.  So he sent me to an ophthalmologist which I went to last Friday.  He said that the film was a natural occurance with aging but stress and trauma could bring to on sooner.  I do notice it comes and goes now. He said the twitching was caused from the chemo making my eyes too dry and now that I'm not taking that anymore I do notice that has almost completely gone away.

So-with a lot of positive thinking and faith in a full recovery I am moving on. Please check your private messages and I'm sure you will find a reply from me.

I hope that everyone is doing great.

Love,

Michelle

Hi Ladies,

I'm new here! Similar dx as all of you.  I live in BC, Canada on the beautiful west coast.  Seems all my healthy living and fresh air hasn't kept cancer at bay!  I know my treatment will be 4 X AC, 4 X TT, then 9 more months of Herceptin.  I'm 51, pre-menopausal and thought I was so healthy until now.  I am very scared about the treatment which I haven't started yet and all the rotten side affects of chemo/herceptin.  And I am very worried about future reoccurances.  I've had nothing but bad news from day one.  Biopsy path looked like very well contained DCIS but high grade.

Surgery path (lump.) shows a small invasive component (< .25 inch) and Grade 2.  Seems the ER/PR- and HER2+ has screwed me up!   Now that I have done my research on HER2+ I am more worried about my future.   Any info/positive thoughts now appreciated as I enter the fight for my life in next 2 weeks !!

Welcome Westcoastgirl,

Whenever I read something from a new person, it's like going through the experience again.  I completely understand.  Just know that you are not alone even though you may feel isolated from life. as I did.

I have read so much lately about the mind/body connection and the importance of staying positive and stress free.  At first I thought no way I can do that in my condition...whoever wrote this stuff wasn't in my shoes!!  But once you get through all the surgery and doctors appts., and tests and just go on to the treatments, it does get better. Not easier but somehow better.  Each time I had a treatment, I congratulated myself for going through this difficult path in life. Before the first one, however, I thought I wouldn't make it through the treatment alone!

The day of the treatment and the following two days are not bad at all.  The first treatment was psychologically the worst but physically the easiest for me.  Then the second one you know what to expect.

I often wonder why we all have different treatments with such similar problems.  I went through six treatments of Herceptin, Taxatere, and Carboplatin beginning in Dec. 2008 every three weeks.  Now I am on Herceptin only every three weeks until Dec. and feel great!  Hair is coming back and all. I had trouble with acid indigestion but even that is gone.

If someone could have told me anything that would have helped me back in Sept. of 2008, it would have been to see myself completely well as difficuly as that may sound. I stopped reading all the scarry negative things and focused on how well and healthy I am.  I was a real health nut with excersice, food, and plenty of rest.  I'm glad to hear you are also living healthy because that helps recovery. My doctor, just like Char's, told me I have a 90%+ possibility of a cure.  So as we all live our lives each day, I figure that's really all anybody has.  I'm gratefull that I live in this age of medicine.

Just know YOU WILL BE OKAY and day by day you are on your way to a COMPLETE CURE. Thanks for joining us here!

Love, Michelle

This is my first post.   I was diagnosed with DCIS in 2006 - had a lumpectory, followed by 36 radiation treatments. Yesterday II found out that I have IDC in my left breast.  I'm scheduled for lumpectomy on June 1 - have already been told that I'll need chemotherapy followed by radiation.  My surgeon will insert a port at the same time as my surgery.  Like all of you, I've learned far about this subject than I ever wanted to know.  With this diagnosis, I had so many new words thrown at me - Grade 3 - possibly stage 2 HER-2 negative.  I knew about the  ER & PR test from my previous diagnosis.  I did not know about this discussion board in dealing with my cancer 3 years ago - it might not have existed then - but what a wonderful way to talk with others who are going through what you are going through.

Morning pdaw

Being HER-2 negative is good.  Very simply being HER-2 positive means the breast cancer cells produce a protein which tells the breast cancer cells to go forth and multiple at a much more rapid pace. We now have herceptin to help counter the positive status.  One good thing is that HER-2 status is not a hereditary factor.  Unfortunately you cannot find out your HER-2 status until you actually have breast cancer and if you have breast cancer twice you could but not very likely once be negative and once be positive.

Hope this helps you.

Judy (mommamouse)

Hi pdaw

I was kind of misleading it is only good in the sense that you don't have the added protein in the duplication of the cancer cells.  There are other factors which play into the agressiveness.

Judy (Mommamouse)