stage 1, er/pr negative and node negative
 

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.

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.

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.

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.

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

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.

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

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

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.

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.

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%.

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.

Suzan, it sounds like you have been in good hands and have a lot going for you. It's great that your heart tolerated both the Adriamycin and the Herceptin. All of her2+ breast cancers have a higher rate of recurrence or metastisis but being node negative and stage 1 is sure in your favor. I wish you the best as you get closer and closer to the end of your year with herceptin. I pray all your treatment did the job well and this will be the end of it for you.

Hi rinaina,

I too am stage 1, er/pr- clean margins and node neg. 1.2cn. I had A/C, rads and 8 months of herceptin which I had to stop.

I do believe that Taxol is not the protocol for our status.

Some difference in treatments does have to do with the size of the tumor. Not sure that it would pertain to ours, though.

Maggie

Rinaina,

Find comfort that each case is special. In my dx. my small tumor was aggressive and therefore Dr. S. and the Dr. back East also felt that even though my tumor was small it scored a 46 on the Oncotype with a high recurrance rate. Also my her2+++ was scored at 15...again very strong.
The KI-67 was another high feature - 40%
therefore taxol was a ticket for me. So I will have a total of 18 taxotere with my herceptin/chemo.
I was blessed that I caught this early and small. But I think it clearly shows two things. Size in this case DOES NOT MATTER....and I really believe the future care of bc will not be based on size only but rather the makeup of the tumor. I posted the other day a recent report on the testing of the tumors and how thay are accurate in detailing the entire tumor. Core biopsey or parafin testing was a major question to the integrity of the main turmor.
Now there is tested proof that these tests do show accurate reading of the makeup of the tumor. I too was node negative - I just did not buy into that
either - even though we know that is a favorable dx. it is not the only answer. We now know that t cells can travel and her2 like to step up shop else where. I think the polls that are now on -going thanks to Astrid will
begin to tell a story for us. But I do believe that the decison for taxol is
based on many factors not just the node negative status.
I wish you a steady recovery from your chemo trts I know you had some tough going there....thank God it is and shall stay behind you.
I am on number 5 with only one more to go- I am so happy to be seeing the light at the end of the chemo journey. One year of herceptin seems like a walk in the park compared to the chemo.

Warm Regards,
Jean

I attended ASCO with our Her2 group this June. There was a paper on the second clinical trial of comparing the outcome of ER+/PR+ breast cancer to Her2+ bc (regardless of hormone status (could be + or -) to triple negative. They compared the clinical outcome of 4 taxol treatments after the 4 AC treatments and if taxol added anything to recurrence rate and survival.


The results were stunning. If you have run of the mill ER+/PR+ only bc, taxol makes absolutely no impact on survivability. There is not one iota of benefit. So much so that in the question and answer period, 2 oncologists jumped up and angrily screamed about why they are subjecting their patients to the added toxicity and side effects of a taxane when there is no benefit (answer - not enough data for ASCO to change the standard of care recommendations for ER+/PR+ bc patients yet).

However for Her2+(and the presenter stated repeatedly that the results for Her2+ women were consistent regardless if these women were also hormone positive) and triple negative women the benefit of adding a taxane was REMARKABLE. There is a huge survival advantage to adding a taxane to the regime. Undeniable.

I do realize that most oncs don't add a taxane for node negative and this is supposedly current standard of care but I would push for the taxane as well. I did not have this problem because I had a micromet to the sentinel node so....I had it all, AC/Taxol/rads/Herceptin.

Just food for thought

Kind regards

Becky

well crap. I am 8 months out or chemo.

To penelope and others concerned about getting or not getting a taxane for early stage her2+bc.
I just wanted to say that not having a taxane is not the end of the world if you did have Herceptin, which most people do now days for adjuvant her2+bc. You may recall that n the HERA trial, the subsequent addition of a year of Herceptin therapy yielded similar benefits REGARDLESS what the chemo type was. And those who had recieved a taxane actually had less disease free survival than those who did not. Probably the addition of the taxane was negative because those who got taxanes were of higher bc stage with more risk of relapse to begin with.

Okay, so now I am good and confused about should I have taxol or not! My onc says no, some of you say yes and some say no. Some studies say yes and some say no. I want to do what is best for my particular case. My onc says no taxol since I am stage ! and no nodes. Guess I will just have to have faith in him and trust he is doing what is best for me because there are too many conflicting answers I am getting. What scares me though is that one minute you can be stage ! and then like Sheila, she became stage IV in a matter of a year I think it was. Oh boy, this disease really frightens the you know what out of me. As much as I love this forum, and I do love it, sometimes too much reading on here can really scare you. There just isn't enough good stories on here to balance out the bad ones.