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Old 05-24-2014, 12:49 PM   #24
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Lien's Avatar
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 828
Re: Just Starting Our Fight, Help.

Here's another long term survivor checking in. I'm from the Netherlands, Europe, and was diagnosed in Jan. 2004. That makes me a ten year survivor. At that time, Herceptin was not yet approved, and they didn't do chemo for small node negative tumors. So I ended up with hormonal therapy.

My sons were aged 3, 8, 12 and 16 at the time. I was terrified of not being there when they were growing up. Especially for my 8 year old, who had behavior issues and was difficult to talk to at times. At first I didn't want to tell them what was going on, but a counsellor at the hospital where I received radiation therapy convinced me to tell them. She said they might find out accidentally or from someone else, and that would make it so much more scary. So we told them, and they took it well. They are 14, 18, 22 and 27 now and are fine young men that we are immensely proud of.

As I didn't have chemo, I didn't lose my hair, but I know from being on this Forum and on the Breastcancer List, another online support group I belong to, that this is one of the toughest things for many women. In our society so much attention goes to the way women look, that when our looks disappear, it feels almost like an amputation. It has nothing to do with vanity and it is a valid feeling. Actually, whatever she feels is valid.

With no lymph node invasion and no spread to other parts of her body, her odds are excellent. Herceptin has changed Her2neu positive disease from scary to hopeful. It is a tough period to get through, but after that, a new normal sets in and she (and you) will be able to move on.

I love it that you are so involved in her treatments. My husband was too freaked out to even discuss it with me. He slept on the couch for two months before he could even look at my scar. I hope she appreciates what you are doing!

Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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