Beatrice on September 20, 2010 at 11:14 am said:

Nancy,
I am so glad I read your story. My case is exactly like your sister’s, Stage III, ER+ Her2neu- 9 of 25 limphnodes with cancer and luckily I have had not had any recurrence until now. I was diagnosed on Sept 2007. Bilateral Mastectomies on Oct 2007, the same month I turned 50. Then chemo TAC (Taxotere…A…C) and radiation 33 sessions. I had no idea of the rare side-effect of staying permanently bald until I found this website. Doctors did not tell me that side-effect. They also failed to tell me that Chemo treatment would make me gain 25 pounds that I have not been able to lose in any way… If I had known… That is sad, because if they tell us in advance at least we are warned.. Same with the Plastic Surgeon who said that the reconstruction was so easy and it would take only like a couple of months. I have been struggling with that for 3 almost years, since the mastectomies. I have a new Plastic Surgeon, let’s see what happens.
I think doctors prefer not to say side effects because they think we might get scared and that not knowing is better.
I have researched so much and learned so much but look with the Taxotere, I had no idea. My hair returned but very thin and the forehead line is not so full. I had no hair on the sides of my forehead for about 2 years and there I only have some very-tiny-extremely-thin hairs. Now, after knowing, I think I will never get hair back in those two sides.
I was devastated when I knew I was going to lose all my hair. I had long straight hair and never have had short hair since I can remember. I was sure it was going to grow again and it did but it could have not and I was not aware of that.
It is very unfair that oncologists don’t warn you about those so called “rare” side effects… you could be in that small percentage, like happened to you.
I really understand the frustration you are having with this unfair, not warned side effect and my heart goes to you. I am not going to say like many… “at least you are alive… and with no cancer…”
I admire you, for sharing your story and warning other breast cancer patients. I am just going to build my website and it is going to be dedicated to share my whole experience and what I have learned with other women like us.
Big hug and I admire you.
Beatrice

 

Nancy on September 27, 2010 at 10:26 pm said:

Thank you for posting your comment. I appreciate your well wishes.

Good for you—if sharing your experience only helps one woman it is worth it. I admire you too.

 

 

Carol on September 11, 2012 at 4:14 pm said:

What was the solution for your hair?

 

 

Karina on February 6, 2013 at 4:13 pm said:

Yes, what was the solution?