New and looking for help

[nancy d]

Hi Folks,
I live in Scotland ( aged 54yrs) and in Nov 06 was diagnosed with early her2 invasive lobular bc.. I am currently undergoing chemo-on 4th of 8 cycles (having had lumpectomy) but find it hard to get info on her2 prognosis.I will be having radiotherapy and tamoxifen when my chemo ends and then subject to scan having herceptin every 3wks for 1yr.
Can anyone tell me
1 does herceptin delay or stop recurrence?
2 what is best length of time for treatmentwith herceptin to be continued to be most effective?
3 am I right to be very worried about being her2+++ ?
4 what % of people with her2 have disease free survival of 5 or 10 or more years?

I know some of these questions are basic but I feel that you are so much better informed in the US
Thanks Nancy

[nitewind]

Hi Nancy, I'm fairly new to all of this Her2 stuff too. There are so many well informed ladies here that I know you will be getting a lot of responses to your questions. I had chemo x 8 and 33 rads, I'm currently on herceptin until December of this year ( that will mark one year).

I belong to another forum that may help you as well
http://community.breastcancer.org/ub...hreads.php?Cat=
there is a special section here called "meet others who are Her2+, it's very informative and, like this board, has some great people who are willing to help.

Good luck to you and keep smiling, I'll be watching this post with interest too.
Susan

[Jeanette]

Hello Nancy, you have come to the right place for information. As a fellow Scot living in Florida I know what you mean when you say the people are more knowlegable about this disease. I don't know too much about it, but I am almost 2 years out from initial diagnosis.. Where in Scotland are you located. I was born in Montrose. I'm sure you will get a lot of good info from the other members her. Best of luck to you, Jeanette

[suzan w]

Hi Nancy...technically I can't answer your questions very well...You can see by my profile what treatments I chose. Early stage invasive lobular here too. I researched, via the internet and these support groups, as best I could. My treatment took place at a major cancer hospital in Seattle, WA. I feel like I got the most up to date info to base my decisions on. I have just had my second 3 month follow-up oncologist visit and am awaiting the results of my blood tests (tumor markers). So far so good!!! Bets of luck to you in your treatments. This support group is the best!!!

[Andrea Barnett Budin]

You are not a statistic. In '95, at age 50, I was diagnosed with invasive, infiltrating lobular carcinoma w/2 out of 18 nodes involved. Mastectomy. Reconstructive tram flap surgery at the same time. Adrymiacin X 4, 8 CMF. In '98 went to liver -- multiple tumors. Tested Her2+, new back then. Did Taxotere from Sept '98 through May '99. On Herceptin from Nov '98 - Jan '02 wkly. Jan '02-present get Herceptin every 3 wks (triple dose).

My prognosis sucked. I decided SOMEONE has to be among the little group survives and determined to be included. To hell with the stats! Who are Life's VICTORS? The ones who conquer the fear! The ones who fill themselves w/love and joy with the gift of each beautiful new day. The ones who see the blueness of the sky and the many blessings that surround -- seeing the sublime in the ordinary. Did a lot of reading, books of Self Improvement Spiritual nature, books on the mind/body connection. The cancer and the Life Lessons I acquired through it have enriched my life immeasurably. I live with happiness and serenity, knowing I am calling my desired destiny to me! We all have the power to use our thoughts and the energy they produce to go out into the Universe and be sensed and responded to IN KIND by the Universe. So think wondrous, miraculous thouhts all day. Experience the ugly, scary thoughts and then rid yourself of them like toxic waste. They will compromise your immune system and hamper your healing. If you think all is lost, you will have nothing. If you believe in amazing possibilities -- you will become a miracle! That is what I wish for you. With love and healing energy going out from Florida, USA to you, and all the fabulous ladies on this board, ANDI

[Andrea Barnett Budin]

I forgot to add -- I was initially diagnosed as 4th stage invasive lobular carcinoma w/2 out of 18 nodes. My tumor was 9 cm. The size of my hand. Unseen 8 mnths prior in mammography. It felt like my breast was thicker, like a dense sponge was inside. Not a lump. Never a marble or a pea. I had done self examines the first of every mnth.

A radiologist told me that she hates lobular because it hides! And then, when it is found, is huge! Advanced. Still, I defied the odds. And here I am, 5 grandchildren later. You can do it too! You need attitude, girl! Serious intense passionate attitude! WIHT LOVE... ANDI

[Lien]

Dear Nancy,

Welcome!

It's hard to answer these questions without knowing more about your path report.

What stage are you? How was your Her2 status assessed? Are you postmenopausal? Did you have clear margins? Node involvement? All these data are part of your personal Breast Cancer story.

Herceptin seems to reduce the risk of recurrence for most Her2 patients.

I wonder why your doc chose Tamoxifen over an Aromatase Inhibitor like Arimidex. Did s/he say anything about that?

Her2 is one of many factors that determine the risk of recurrence. We don't know enough about it yet. The good news is, that being her positive, you have a specific therapy available to you. Herceptin. It wouldn't work if you were her2 neg.

There are many people who have survived her2 pos disease. Most of them move on after a couple of years. The ones who stay on forums and email lists are often those who have had a recurrance. Or they just stay because they made friends here and want to help the newly diagnosed. I'm 3 years out from diagnosis and doing fine. My risk of recurrence is roughly 10%. This means that I have a 90% chance of never ever getting BC again. Despite my Her2 positive status.

It seems to me that you have quite a few questions that you should be able to discuss with your doctor. You may want to contact him or her about them. You have a right to know what s/he thinks about your individual situation.


Hope this helps.

Hang in there,

Jacqueline

[mke]

Hi Nancy,

I'm in Canada. I pay less attention than most to the details of my pathology and very little to survival statistics. Mostly because I think that the survival statistics for Her2+ cancers are useless. I think that it was first approved for general use in metatstatic BC in 1998. Only in 2006 was in in general use for those with non-metastatic BC. Herceptin, so far, looks like such an effective tool that pre-herceptin stats are not applicable in a post-herceptin era.

I suggest that you google "The Median is not the Message", and essay written by Steven Jay Gould. It's a good discussion of the limitations of statistics.

[AlaskaAngel]

Hello. Here is a possibly helpful link to try. Please comment back on whether or not it is helpful to you in your situation:

This is a US link. There is also a similar Canadian link but I am not sure what it is; maybe someone else has it for you in case you want to compare the two.

http://www.nccn.org/patients/patient.../3_work-up.asp

Let us know how things go for you,

-AlaskaAngel

[Christine MH-UK]

1 does herceptin delay or stop recurrence?
Nobody can say for sure. Roche argues that it stops it permanently, but the UK National Institute for Clinical Excellence suggests that it might just delay it (but they were basing this on tamoxifen).

2 what is best length of time for treatmentwith herceptin to be continued to be most effective?
Again, nobody really knows. The big international trials have all used one year. One of them used two years but the announcement of results keeps on getting delayed (which can mean that the trial didn't work out). There are some small trials that have had excellent results using herceptin only during chemo, but they are small. So, there are suspicions that the full year may not be necessary, but nobody will do the big trials on this until they know for certain that two years doesn't make a difference.

3 am I right to be very worried about being her2+++ ? Possibly not. It depends alot on what your other traits are and what chemo you have had. Even at that, the odds can't tell you what will happen to you as an individual (this was pointed out by the young doctor who gave me my surgery results. My results were lousy and, according to the statistics, I shouldn't be o.k. three and a 1/2 years later).

4 what % of people with her2 have disease free survival of 5 or 10 or more years?
Again, nobody knows how newer chemos and herceptin will affect things.

Basically, it is impossible to know what is going to happen.

[Mary Anne in TX]

Hi Nancy!

I do so agree with the others that you are not a statistic! But I do remember pouring over info online for the first 6 months or so trying to find more and more stats! What I discovered from tons of reading and paying close attention to the writers on this site, was that we are all so unique and have different doctors, treatments, attitudes, stresses, bodies, etc. I finally came to see that I needed to work on what I ate, what I thought about, and exercising. I work with my doctor to decide what to do next and feel lucky to have someone to believe in me and work hard to fight my disease. Read, ask questions, but most of all, believe in your ability to lick this goofy stuff and to out run and out live it! ma