stage 1, er/pr negative and node negative

rinaina · 08-19-2006, 02:29 PM

Are there any Stage 1 er/pr negative and node negative people out there that can share their experiences with me. I have just completed chemo and had my first herceptin treatment, no taxol, the onc said because of being node negative and stage 1 taxol wasn't necessary and he only plans on giving me herceptin for 1 year as long as I don't have any heart problems. Then what? What is my prognosis? Does anyone have and longevity statistics relating to cases like mine? How long after stopping a year of herceptin are you protected? Herceptin doesn't protect the brain so how common is it to get a metastisis to the brain? So many uncertainties to deal with. Thanks for your help.

Sheila · 08-19-2006, 03:58 PM

Rinaina

Even after the Herceptin you must always be viligent and if something doesn't seem right, get it checked...your prognosis should be fine, but we just have no guarantees. I was also Stage 1 ER PR- , No Nodes +, but at that time just 4 years ago, Herceptin wasn't given unless you were stage IV....well 1 1/2 years later, I qualified so I got Herceptin because I was Stage IV.

rinaina · 08-19-2006, 04:25 PM

Sheila, thank you for your reply. I am sorry to hear that after being diagnosed at stage I, two years later you became stage IV. Thank goodness there is herceptin. Do you mind me asking where your cancer spread to? I don't quite understand why some doctors are willing to keep you on herceptin longer than one year and others are so against it. I mean, I understand the risks to the heart and how carefully one has to be watched, but if all is okay, then why not keep the protection going with herceptin? I have read the latest concerns based on newer studies that indicate a higher % rate of heart problems then what was previously studied...originally it was like 4-5% and now a study showed 28%. Anyway, I do agree with you that we have to remain vigilant because there are no gaurantees. Thank you for your input. I appreciate your reply.

RobinP · 08-19-2006, 05:32 PM

See some of Becky's lastest post discussing one year vs. two years of herceptin, where she states there really is no statistically significant advantages to doing two years of therapy in early stage bc. from at least preliminary studies.

Most people do one year of Herceptin. There are even studies with nine weeks of Herceptin with similar efficacy and no cardiac risk, at least so far. Not many do two years of therapy unless there is larger disease involvement.

janet/FL · 08-19-2006, 09:08 PM

Hello Rinaina
I have a similar diagnois to you and turned down AC and eventurally was able to get Herceptin (this was just last July when it was only starting to be prescribed for adjuvant treatment. I had 16 weeks of Taxotere with the Herceptin and just finished the year of Herceptin.
I am reading a book called After Breast Cancer, A common sense guide to life after treatment. At this point in the book I have found it very intersting and would recommend it.
Hugs,
Janet

rinaina · 08-20-2006, 11:01 AM

Janet, thank you for the recommendation and I will definitely check into getting the book, After Breast Cancer. This forum has been such a valuable source throughout this entire process and I so appreciate the willingness of all the members to come forth and help each other out. Don't know what I would have done without all of you.

Olivia · 08-20-2006, 11:30 AM

Hi,

I had a dx similar to yours. I finished Herceptin in May. I had taxol, which I see you didn't. I was told because of my age (34), hormone and Her2 status that I would have A/C and T. Herceptin did not become availble to me until my last chemo, so it was not part of my decision making process.

I am told prognosis is great - hope so! I do freak out about aches and pains. They say that gets better with time.

Take care,

Olivia

Olivia · 08-20-2006, 11:30 AM

Hi,

I had a dx similar to yours. I finished Herceptin in May. I had taxol, which I see you didn't. I was told because of my age (34), hormone and Her2 status that I would have A/C and T. Herceptin did not become availble to me until my last chemo, so it was not part of my decision making process.

I am told prognosis is great - hope so! I do freak out about aches and pains. They say that gets better with time.

Take care,

Olivia

rinaina · 08-20-2006, 12:22 PM

My onc told me that because of being node negative, stage I, clean margins, er/pr- he didn't feel that I needed taxol but I did question him about it after seeing so many or the forum members on it. I guess we have to have faith in our oncologist if you trust them and I do trust mine. We also have a very dear friend who is an onc and he recommended the one I am using and when I asked our friend, he said I didn't need taxol. I understand how you feel about concern over aches and pains. They say it gets better with time and the further we get from treatment of any kind. Hope that is true. Can't imagine how it must feel to be without any treatment to fight this beast.....scary. Thanks for your input Olivia.

penelope · 08-21-2006, 06:58 AM

Hi there I am also a stage 1 er/pr- and did not recieve taxol. I was very concerned about this fact. 2/3 oncs said it would be less than 1% benefit to me.

When I asked one onc about my life expectancy he said "greatly reduced". Honestly, what does that mean to a 36 year old....2, 5, 10 years? That was before treatment so I am not sure if he was talking then or now.

I just do not think they know.

suzan w · 08-21-2006, 08:39 AM

stage 1, ER+/PR+, Her2+...node negative. Had bilateral mastectomy (invasive lobular). At the time (June '05) my onc said she would give me herceptin without chemo...I had the Oncotype DX test done-predicted a 'high-intermediate rate of distant (in another part of body!)recurrence. So I had 4 rounds of A/C and will finish my year of herceptin in October. Also taking arimidex for 5 years (er+). I have a MUGA scan done every 3 months and my heart (so far!) function has not changed at all...65%.

rinaina · 08-21-2006, 01:13 PM

Penelope, I am both saddened and shocked that a doctor would tell you an answer like that about your longevity. Being stage 1 is highly in your favor and if your nodes were negative like mine, then that is another plus. Don't let his words weigh you down or take away hopes for a long future with your family. Plus, new advances are constantly being made. My onc told me my prognosis is very good and that is what I believe and hold onto.