Sister Diagnosed
 

Hello everyone. I'm Barb a 25 year survivor of second stage breast cancer. Mine was diagnosed before they were checking for Her2. My only sister was diagnosed recently and had her lumpectomy a week ago Friday. She is postmenopausal, Her2+++, Er- and Pr-. She just found out a couple of hours ago that there was microscopic lymph involvement. She will see an oncologist next week to determine what she will do for treatment. Radiation is a given, but she doesn't know if she will have chemo and/or herceptin. She was told that she could choose to have the axillary area irradiated or she could have another surgery to remove additional lymph. She hasn't made any decision about that until she speaks with the oncologist. Have any of you had to make such a decision? She said that her surgeon says she has a 92% chance of nonrecurrence with lumpectomy and radiation and could improve her chances with herceptin. Does this sound right?

I so appreciate having a forum to visit with my questions. I've dug for info online, but it's hard to find regarding stats for Her2. Thanks so much for reading. I'll look forward to hearing from any who will respond.

Barb

Hi Barb!
I think herceptin is a given! Please advise her to get a 2nd opinion since she is Her2. Hearing from many of the other warriors will give you some peace of mind also. There are choices to be made and she needs to have wise advise and then decide. Best wishes to you both. You're at the right place and she is fighting her battle at a time where there is much help for her. ma

Thanks so much for responding, Mary Ann. Is Herceptin given alone, or always with chemo?

My sis doesn't like computers and doesn't dig for info like I do, so I am her filter for now. When I read and find anything encouraging, I share. When I find info that seems important, I share. Do those non recurrence figures sound realistic? (That being asked, I know that individuals aren't statistics---and there are many options and much hope.)

Thanks again, Mary Ann and my best to you.

Barb

Barb, it might be just as well that your sister is not on the computer right now. Sometimes one can feel bombarded with information and it is so much to process. It is wonderful that you are providing her this service. You can always trust the American Cancer Society or other established groups to give you information you can trust. They will talk to her on the phone too.
It's always a good idea for newly diagnosed people to have someone with them when they are in this decision making phase because we don't always "hear" everything being said nor think of all the things to ask. So it really helps to have an advocate in our corner. You can help her make lists.
As suggested, another opinion is always a very good idea. Big decisions are involved.
I believe that the standard of care is that Herceptin is best administered with chemo. I was offered to receive it solo but that is not often done. And I opted to do the whole enchilada. I had 4 doses of THC. Most receive 6.
Keep us posted and ask whatever you'd like. Someone here will have had the same experience.
Keep the faith.

Good of you to reply, Bonnie. She is readying herself for whatever is recommended, knowing that she doesn't want to regret not doing everything possible. Either her husband or I have been with her for every appointment, and will continue to be.

Did you tolerate your chemo well? Mine was so long ago, that I don't think my drug combo is given much these days.

Barb

Barb, the pathology report will have much to do with the treatment plan. But oncologist see treatment so differently... reason for 2nd opinion being so important. I believe that there are a couple of people on the site that have gotten herceptin by itself, but most receive it with chemo. Size of tumor, etc is just so important. From being on the board about 3 years, I have found that looking at prognosis was not so helpful. After wearing out some search tools trying to figure out if I was going to "make it", I decided to stay informed, do my treatment and believe for success. You're a great sister! ma

Barb, I tolerated it fairly well. There were rough days , I won't lie. But you are right about how much chemo has changed since you received treatment. I understand it is much less toxic and they have greatly improved the ability to manage side effects. . I stopped at 4 doses because I was having some neuropathy and my oncologist said how one has to weigh side effects against benefit. She thought I had received adequate treatment for my situation. I continued Herceptin for a year. It is very individualized. Which is good. Not one size fits all.

Barb,
First of all, what a fantastic sister!!! You will find this site a wealth or "real world" information and I know for me it has been a life line.

I woul like to offer some words of encouragement regarding the quality of life while on Chemo. Granted, everyone is different so mine is just one perspective. I was on Taxotere + Herceptin. I was expecting to be bed ridden for the duration of my treatment. (6 rounds - once every 3 weeks). I was DEFINATELY able to lead a relatively normal life. I had my treatment on Thursday, energized by steroids on Friday, sort of weepy (dang steriods) on Saturday afternoon and Sunday. Back to my old self on Monday. Hated the hair loss, and was VERY diligent about preventing mouth sores etc.

I share this because I would "go for the gusto" and never have second thoughts. Hence, encouragement to seriously consider chemo.

Again, the beauty of this site is that the wonderful men and women do not make judgements. Just offer insights.

Best of luck to your sister and I know that with such a strong support network she will be equipped to make the decision that is best for her.

Lori

Thank you Lori and Bonnie. I wanted to be able to tell her that chemo is "doable". Just the length of chemo these days is an encouragement to me. (Mine lasted a year, three weeks on and three weeks off). I know there will be side effects, not the least of which is fatigue, neuropathy, hair loss, mouth sores). She's needed a few days to get her head around all this, but is already trying to prep herself to do the max, if that's what's recommended. It hurts me a bunch to see her having to do this, but I know she can!

My best to each of you. I've "met" wonderful women on my personal journey and am meeting so many more on my sister's.

Barb

Barb, how wonderful that you are advocating for your sister. She is lucky to have you. You might also consider posting on the HER2 Group Forum on this site. I think that more people visit that thread regularly and you may receive more feedback there.
Regarding side effects. I actually dodged many of them. So you never know. We all react differently. But we all come out on the other side.
Keep the faith.

Hello again Bonnie. Thanks for the tip about posting to the Her2 Group Forum.

It's good to know that it's at least possible to dodge some side effects. I had pretty much all of them with my chemo, but it was still doable.

Sister Diagnosed
 

I am so sorry to hear about your sister, but she has a great support person in you, because you have been there and done that. The first few days and weeks are confusing for new patients. It is good that she has you to be her second pair of ears and eyes.