A Wonderful Poem

[Carol H.]

Thank You for this wonderful site! Nov. 28, 2006 I had a Lumpdectomy/ clear margins, 1.5 cm., 1st. lymph node removed negative. er/pr- her2 +, DCIS. Age 59. The onc recommended chemo + hercepten and radiation. This was a very hard decission for me to make , but I have choose to forgo chemo at least for now. My rads will start Nov. 22, 2007 , 5 days per week for 6 weeks. It's so scary this her-2 , wouldn't it be great if we knew what causes it to become positive?
I found this poem today that I wanted to share with all of new friends.

Faith
Katherine Von Ahnen

I'd like to find a quiet place
Where I could talk to God
To ask if I've been right or wrong
And see him frown or nod.
There are so many things of late
That troubles me today,
I do the best I can do
In my own stumbling way,
And yet.....I'm never really sure
Which path I ought to trod
So I'll just do the best I can
And leave the rest to God.

Carol H.

[Chelee]

That's a really nice poem. I've saved it. Thanks for sharing it. I know for me that is so true. Thanks again Carol.

Chelee

[tricia keegan]

Hi Carol

it gave me a start to see your name as my friend who also posts on this site is Carol H too but she's battling brain cancer right now and has'nt been able to post for a while.
Her2 pos is scary but a lot of the statistics are pre herceptin and out of date so we can look forward hopefully to a better prognosis for the future thanks to this wonderful drug.
Having chemo or not is a very personal decision for us all but generally being her2 pos is a good enough reason and it really makes sense to hit this disease head on the first time while it is still curable rather than when it returns.
I only say this because if it's fear that has decided you please know chemo is not fun but honestly nothing as bad as I imagined and nothing like in the movie's thanks to the wonderful anti nausea meds we have now.
I think chemo with herceptin has really shown to have great response's in early stage bc so you may want to discuss this again with your onc.
Whatever you decide I wish you good luck and the herceptin itself is very easy to tolerate overall.
Tricia

[Sheila]

Carol

We must make informed desicions, and go by what we know and then stick by our decision...the Herceptin is important. 5 years ago when I was diagnosed with a small tumor, neg nodes but Her2+++ ER PR-, chemo was not advised....and Herceptin was not available. In a year and a half, I was stage 4, placed on Herceptin, and have been on it 3 1/2 years....I only wish I could have gotten it early like you...I feel it would have made a big difference. Thank You for the poem...no matter what we do or don't do, it truly is in "His" hands.....Your post made me remember that.

[Carol H.]

Hi Tricia, your reply was very powerful to me and I want to Thank You. All of the doctors say you must feel positive on what ever decission you make in your recovery. I've thought long on hard believe me. The first few weeks I was a "deer in headlights" and followed everyone's plans for me and the treatment that I should recieve. Filled my prescriptions, got a wig and had dates for port implant and date for first chemo. Two days before the port I got really sick with some bug that has been going around and could hardley breathe. So I had to cancel the appt until my health improved. I laid in bed two weeks trying to get well and only thinking of treatments.
I took 3 weeks and research every web site I could find on her2. I then made the decission not to do the treatment and now finally feeling possitive and at peace. This is only my decission and what I feel is right for me. Maybe if I was younger, maybe if I haven't smoked my whole life, I don't know, maybe I'll have to eat my words, who knows?
Anyway, you need people in this group that are trying a different way like me. Otherwise we'll never see other sides of the story. Carol H. Florida

[tricia keegan]

Carol thank you and yes I agree and of course respect your decision which is a tough one.

Sorry to say I've smoked all my life too and even a cancer dx has'nt made me stop although I stay determined to keep trying.
I'm happy you're at peace with your decision and just felt sometimes people make this decision threough fear and I wanted to reassure you there was no need.
The herceptin is a powerful drug which most of us do well on so good luck with it and please keep us posted.
Tricia

[Adriana Mangus]

Unless chemo has something to do with your health, I think you should opt for chemo.My tumor was smaller than your back in 1994, similar outcome, in reading your post, it's exactly like my diagnosis..I received chemo+radiation, after lumpectomy. No Herceptin back then. Well I had a recurrence to rt lung in 2003, I am now receiving Herceptin for life. Check with your doctor again or get a second opinion. Better to be safe than sorry.

[Carol H.]

Hi Trista, I do have a lot of fear. I fear the cure will kill me before the the cancer does. There's a new drug out that I started taking two days ago, Chantix. You just keep smoking as usual and after about two months you just won't want a cigarette anymore. I have a few friends that have already done it and it worked for them. You don't need will power, it does something to the brain that makes you not want it anymore. I'll keep you posted about that monkey on my back. Carol H. in Florida

[tricia keegan]

Good luck with the Chantix Carol,I may ask my onc about it as my friend is doing well on it too.

Chemo is not the big deal you think honestly so don't be scared,which is natural but you're stronger than you think you are and can do this.
Your life is worth fighting for and if you have any concerns about chemo I can help with feel free to e mail me.
tricia.keegan@gmail.com

Tricia

[CLTann]

We all need to make informed decision, based on published data and the probability of recurrence. On the other side of equation is the harm one could expect from using chemo, radiation or whatever treatment regimen is. It is amply clear, even from some replies to this thread, that chemo is not effective for many people. Looking at Adjuvant! you will find the improvement from the chemo treatment is less than 1% in recurrence for people in your category. Of course, it is possible that by bad luck one may be that 1%. In the final analysis it is a personal decision consisting of much gut feeling and risk taking. The uncertainty of recurrence is there for both groups. The bad effects from chemo are known to all of us. My onc left the decision entirely to me and he endorsed my bold decision.

[Jean]

first of all I do believe that the trust and faith you have in your onc. is vital.
My onc's in New York all told me no chemo....etc. etc....the % were pointed out I think percentages are important as long as they are in my favor. I do consider that I will take every single percentage to my benefit that I can grab. I went out to consult with Dr. Slamon in Calif. He said to me, "Her2 likes to travel" he advised chemo/herceptin and I knew it from the start. So after spending 2hrs speaking with him and asking loads of questions the decision for me had to be chemo/herceptin...as a matter of fact I was very annoyed with my groups here as they were confident that I did not need chemo. They are good dr. but.....then 6 months later early stagers were
approved for herceptin. Times are changing as we sit reading these posts.
(thank the good Lord)...Hopefully we will hear the new and improved stats
in regards to Her2 Postive bc since the application of herceptin/chemo with
use in earlier stages. This is a difficult disease and why not use all the
fighting power we now have? For me I would rather start coming out of the corner of my ring with both hands up and hitting. I know I would be upset
with myself later on if I did have a recurrance that I would be saying I should
have done this or that.

Carol what were your KI-67 levels? Also did you have the Oncotype DX test
done. This may assist you greatly. The Oncotype DX takes much of the guess work out of the decison in regards to chemo. Maybe you should
consider the test and the character of your tumor.

The chemo was not as fearful as you are hearing and reading. While it is
not a day at the spa.....it is doable....

I wish you all good things and will say a prayer for you. I am glad you have joined the site as the women here are the brightest, bravest, and the best
group of women I have had the pleasure of connecting to. So you see Carol there are some good things about Her2.....these "BEAUTIFUL WOMEN"
God bless all of you.

Jean

[Hopeful]

Carol,

I am a little younger than you (53) with ER+/PR+ Her2+ IDC, 1.3 cm lump removed in June, 2006, sentinel node negative. I declined chemotherapy also, for at least one of your stated reasons: I fear the toxicity and long term effects that we have yet to learn of, as survivors didn't live 10 years past their chemo treatments in the past. I have very strong feelings about doing any treatment that will compromise my immune system. When I looked at the percentage of benefit chemo added to hormone positive, post-menopausal patients, and the possibility that being Her2+ would attenuate what benefit there was versus the high toxicity, I went with my gut on the decision. I am fortunate to be treated by an oncologist who will dispense Herceptin to me without chemotherapy; I started treatments with radiation therapy. Because I am hormone positive, I also have the option for hormone therapy, and currently take an AI.

This is a personal decision for all of us, and, at least in this group, those of us who decline chemo are in a distinct minority. I can tell you that my onc has gradually come around to my perspective, and actually told me at my last visit (when I was asking if I could add Tykerb to my treatments once FDA approved) that he thought I had made a good decision with my current treatment plan, and may not want to add another drug without knowing the potential long term side effects.

Thank you for your poem and I wish you all the best and good luck with your treatments.

Hopeful

[Carol H.]

Thank You for all your replies. Jean, on your reply you asked about the KI-67 level. mine is MIB-1 20% borderline. I don't know what that means? I'm not sure about the Oncotype DX Test your asking about, would it be on my Pathology Report? The only thing I could find on that was " the tumor has abundant pink cytoplasm which is a feature of an oncocytic type cell". Or is there another test I should take? My head is spinning, I don't think I'll ever understand all this medical stuff. Carol H. Florida

[Carol H.]

Dear Hopeful, it's good to know there are people that think like myself. Are we rebels? Do we march to different dummer? I'll fight as hard as the next guy, just in my own way. I will check out getting Hercepten alone after radiation. Thank's , Carol H., Florida.

[Hopeful]

Carol H,

Each of us has to find their own way, and I think you and I are taking the "road less taken," as Robert Frost wrote. There are some who call us risk takers, but each person has to evaluate what "risk" means to them. Perhaps our perception is different?

Anyway, my Ki-67 was 11%, also listed as "boderline" in the "favorable" column of prognostic factors. It took me awhile to find out that "borderline" in my case meant "borderline low" - anything under 10% is considered "normal." The fact that the tumor was slow growing entered into my decision to skip chemo - it is much more effective against the faster growing cells. I hope you find out that your "borderline" situation is the same as mine. If you are interested in Herceptin, it is a good idea to get it while you are undergoing radiation, as it "sensitizes" the cells to radiation therapy. Radiation is a cytotoxic therapy, and, as with other cytotoxic therapies, there is some evidence that Her2+ confers some resistance to the cells. You could benefit from the synergy of the two treatments together, rather than sequentially.

Best of luck with your treatment plan.

Hopeful

[Jean]

Hi Carol,
The Oncotype test looks at many different genes in a breast cancer. (you would have to send in a slide) of your tumor. By measuring the levels of certain genes the Oncotype Dx test calculates a recurrence score. Low - Med. or high. The higher the score the more likely the cancer is to come back. This test was a perfect factoring for women who were uncertain if they should or even need chemo. It helps women to make decisions about chemo after surgery who have had node-negative, estrogen positive breast cancer. I re-read your post and I see that you are estrogen negative. I do not think you can do the test since you are estrogen neg. ( I am fairly certain).... but you could contact Genomic Health and ask, their toll free number is 866-662-6897.
Some women who have had the test decided to avoid chemo since their test
came back low, some others who thought they did not need it - after the
score came back high decided to have the chemo. Some who are on the fence the score helps them with their decision. I believe using the newest cutting edge tests that are available help us and this test helps a women make a decision based on her own tumor and its character.

I am also thinking that many women who have had the test and it came back
low or med. and decided to not have chemo - still have the hormonal therapy to help them fight the cancer.

The KI-67 levels show how fast your cancer cells are growing. I hope this
helps you.

I wish you all the best, at the end of the day we have to do what we think
is best.

Regards,
Jean