Help on making chemo decision stage 1

[Donna]

Hi Amazing Group,

I am aksing this question on behalf of my cousin. She just had her surgery two weeks ago. Her tumor was 2 cm, no node involvement, ER+ PR+Her2+.

Her oncologist first said no chemo - the next day she said she changed her mind and was advocating chemo. I have encouraged her to get her pathology report so she can see the numbers herself. They have been less than forthcoming with the paperwork.

In the meantime, based on this information, what have you done, what would you do, what can you tell us?

Thanks so much from Donna and her cousin, Kathy

[Zoid]

Hi Donna,

I would first consider getting a second opinion.

Knowing what I now know of metastatic cancer, I would advise your cousin to do the chemo. Even if the tumor was removed and all of the nodes were normal, there could still easily be cancer cells lurking around, but they haven't grown enough to show up on tests. Chemo would likely kill all of those cells.

Do you know what drugs she'd be getting?

-Susie

[Erin]

Hi Donna and Kathy,

Welcome, I am sorry you need this group, but you are lucky to have found it. First, on the issue of the paperwork, I will volunteer my opinion, even though you didn't ask for it :-) I insist on getting copies of all my surgery notes, pathology reports and lab reports. I did not start out to question my docs, but after an experience where a doc told me one thing on the phone..."the lump is nothing to worry about", while I was staring right at a path report that said "suspicious for malignancy, suggest a biopsy", I really learned that we have to be vigilant and proactive to get the best care. You have a right to your medical records. It may be easier to work directly with the Medical Records Department of your health care provider, rather than your docs office, as they understand the law on this. Also, if you want to get a second opinion at some point, having your own copies of records makes it much easier.

Second, chemo. I was very much in your same situation as you can see by my signature. My oncologist would not have pushed me to do chemo if I did not want it, (and I am sure there are oncs out there who whould not have suggested it at all.) But at our first meeting, when he started talking about different treatments and 10-year survival stats, I stopped him and and asked him to tell me my best options for 30-year survival! 10 years is not enough for me! I want to see my grandchildren graduate high school!! In his opinion chemo was my best shot.

Still, chemo is tough to endure, and there are potential long-term side effects to all the treatments, so it is not a decision to make lightly. Maybe in 10 years we will look back at chemo as a relic of a by-gone age...like bleeding, or leaches. But for now, it is the best we have, and I wanted to go at this thing with both guns blazing.

Best of luck with your decision, the ladies here will give you lots of info and support.

[MJo]

I agree with Susie

My boss and I went through BC treatment together. Her tumor was 2cm and she was Her2 pos, node neg. We had the same oncologist -- well respected and part of a practice that is known to be "aggressive" in treating cancer. He strongly urged her to take chemo, radiation and herceptin due to tumor size and Her2 status.

My tumor was .5 cm and Her2 pos, node neg. I also decided to be aggressive. Apparently cells can spread through bloodstream, not just via lymph nodes. I also felt that Her2 cancer was a high risk type and I should do everything possible to make sure it never returns.

I hope your friend is aggressive.

[Karen Weixel]

Hi Donna,

Your cousin is very lucky to have you as her advocate.

First of all, she has every right to get a copy of her pathology report and any other reports (blood tests, scans, etc). As advised above, she should get a second opinion.

I was diagnosed in January of 2005. I was stage 1 with a 1.3cm tumor, node negative, negative for lymphovascular invasion, grade 3, er/pr+ and Her2+++. My treatment was as follows: dose dense chemo, AC/T, 34 rads, Herceptin for one year and currently on Aromasin. I was 49 years old and premenopausal at the time of dx.

Being the 9th (possibly 12th) person on my mom's side of the family to get bc, I was very aggressive with my treatment.

Hope this helps,

Karen

[Marlys]

Donna,
I, too, was stage 1,ER+++,PR+,Her2+++. Tumor was .5cm, negative sentinel node biopsy. Had chemo (A/C x 4), rads x 30 and herceptin every 3 weeks for 1 year. am currently 2 years post dx and NED. I would not chose to have been treated any differently. I believe in using any weapon available. Hope she does well.
Marlys

[Sheila]

Donna

This is a difficult question, but the recommendation is for chemo for any tumor over 1cm, some recommend it for any tumor over .06cm, even with neg. nodes. Alot depends on Er, Pr status, Her2 status etc. If in doubt, get a second opinion. That is always wise, even a third! I had a small tumor 0.7cm, neg nodes, no chemo, and was considered stage1 with a good outlook, 1 1/2 years later I was stage 4 with mets to the lymph nodes. Some people have chemo with neg nodes and a small tumor, and still recur....there is no magic answer. Even if she chooses not to do the chemo, I would recommend the year of Herceptin....it was not available for me as stage 1, but it is now....I think it may have made a big difference for me if I had been given it early.
If her Her2 status was done by IHC, she may want to have FISH testing done on the tumor, as there have been false positives with the IHC method.

I hope this helps....like I said, get more than 1 opinion, and then make the decision based on the information.

[suzan w]

As you can see by my signature, I had a very small tumor...agressive (invasive lobular) but small. At the time my oncologist would have given me herceptin without chemo (it had not yet been approved by FDA for use in early stage bc) when most oncologists would not give herceptin WITHOUT chemo first. I had the oncotype DX test done-showed high intermediate risk for recurrence (since have learned that most of us Her2+ have a high score on that test...). I opted for the chemo as I wanted to leave no stone unturned and go for the most agressive treatment possible. I did not want to look back one day and say, "Gee, I wish I had done..." My oncologist was very supportive and I have no regrets! Good luck in your decision.

[CLTann]

By my signature below, you will see that I am an odd-ball among the people here. One big factor is the age of the patient. Post menopause women are less likely to have aggressive cancer than younger women. When you read all the side effects chemo treatments resulted in patients, you wonder whether you have chosen the best treatment. People have a tendency to compare the best treatment as the most severe form of treatment. Often this is not the case.

Oncologists have little to choose if the patient insists upon a most aggressive form of treatment. In their own mind, they knew the odds really are very similar. Get a second or third opinion, from other oncs who have not been given the "instruction" from the patient.

Best luck.

[harrie]

I think the age of the pt is a very significant consideration for chemo. For me, I know some would consider TCH as aggresively conservative. But I chose this as my best option for me. If I was maybe 70+ or 80 yrs old, prob not.

I also keep an organized folder of all my path reports, surg reports, ins, emails, you name it. Very impt. Saves a lot of time when needing that information for another opinion or just to refer back to.

I believe with BC, there are more then one "right" options and it is good to be proactive to determine which is best for you.

harrie

[Becky]

A 2cm tumor, even with no node involvement is not considered Stage 1 anymore, it is Stage 2A and she needs chemo - especially since she is Her2+.

[hutchibk]

It's already been said by everyone else, but tell her to be as aggressive as possible up front. Now that we have Herceptin as a first line option, she should use the chemo and monoclonal antibody tool to her advantage NOW!
Her2 and it's reputation for mets are not something I would mess with. My tumor was 2 cm with only one positive node. Yet I am on my third recurrance in 3 1/2 years, and we have handled it very aggressively. If I could have had Herceptin with my chemo at the outset, I have confidence that it would have made a difference. It is possible for it to be moving through the lymph system already, looking for places to settle in, without seeing any positive nodes. I think her doc is on the right path to rec chemo, with Herceptin, of course!!

[Ceesun]

Do the chemo--no question. Ceesun

Hi,

It may help if your cousin consults the National Cancer Center guidelines, which I believe suggests chemo for all tumors that are 1 cm or greater. Mine was 1/2 cm. and my oncologist, although he himself recommended chemo, indicated that the tumor board at my hospital (in New York and well known) was divided. He added that if the tumor were 1 cm or larger we would not be having the discussion, that the recommendation would definitely be for chemo. That being said, the New York Times last Sunday had an article on chemo brain, confirming that it is indeed a problem. I had only two rounds of taxol and carboplatin and now have memory and word issues. So, it's a difficult decision and I wish you and her good luck in making it.

[Jean]

The hardest part of a bc dx is deciding what you want to do. Do your homework, do research - get information, most important get 2 or even a 3rd opinion...you want to make the correct decsions at the best time possible.
Do not make medical decsions based on FEAR...do not listen to the chemo
horror stories - it is doable. No matter what age you are if your body is in
good health (meaning no other major health issues such as heart, kidney,
etc.) you should have all the best and current treatment available. I find
it interesting that a gal of thirty should be treated more aggressivly than
a gal of 50....the cancer Her2 is the same devil....no difference in my mind,
both woman want to survive this disease.

Also sometimes it is a slam dunk....2cm tumor! Chemo/Herceptin would
be the rule. Think about how many cells are in a tumor of that size...
Millions...what are the odds of one slipping past the node?

Wishing you and your cousin the very best - please let us know how she is doing. By the way - She is very lucky to have your support!

Regartds,
Jean

One other suggestion is for you or your cousin to access Adjuvant Online. This database is used by a very large number of oncologists to give their patients the statistical probabilities of recurrence and mortality and to show by what percentage recurrence is reduced through chemotherapy. I did chemotherapy, even despite Adjuvant showing that I reduced risk by only 7/10 of one percent. I am still not sure if I made the right decision as I do, indeed, have chemo brain and neuropathy. I should also note that Adjuvant at this time does not include HER2 positive as a risk factor (coming soon) but it does include ER negative, which to an extent takes into account the HER2 reading. Please note that when you access Adjuvant it states that it is only for medical personnel, but you can still get in and use it, and get the same results as your doctors.

Regarding older versus younger: There are differences in the way cells grow in those who are older--i.e., more slowly as we age. So the hypothesis is that cancer cells replicate more slowly. And the elderly are also more susceptible to certain chemo side effects (perhaps because healthy cells also don't replicate as easily when we're older), which may be why oncologists are less likely to recommend chemo to older patients. Also if a person has good risk factors with respect to the breast cancer and is in her mid-sixties or mid-seventies, an oncologist might feel that the risks of chemo outweigh its benefits. I don't believe, though, that the age cutoff is 50 for rethinking chemo. i beleive it begins at 65.

It probably makes sense for each woman to do her own research (with the benefit of sites like this) and based on her findings discuss the risks and benefits (and her fears) with an oncologist she trusts. It's also good to make the decision together with family, since everyone in a family dealing with cancer is involved. Again, good luck.

[Jean]

Donna,

Many have been frustrated by the fact that oncologists have considered all breast cancers the same in terms of the risk is determined by both size and lympth node status. I have always refuted this criteria esp. with Her2 +
I would like to share the following:

HER2 Status Associated With Recurrence in Node-Negative Breast Cancer Presented SSO
March 19,2007 - Absesence of cancerous cells in sentinel lympth notes (SLN)
is generally taken as prediciting good prognosis in breast cancer. But, according to research presented at the 60th annual meeting of the Society of Surgical Oncology (SSO) node-negative patients whose tumors express the HER2 protein may be at higher than expected risk for cancer recurrance. Julie E. Lang, MD surgical oncology fellow, University of Texas MD Anderson Cancer Center Houston Tx, reported on a retrospective analysis of women who underdwent primary breast tumours resection and SLN dissection. The research was performed at her former institution, the University of California-San Francisco. Dr. Lang's analysis included 307 patients who were found to be SLN negative. Of these 53 had primary tumours that were postive for HER2 by immunohistochemistry and or fluorescent hybridiization in situ methods, while 198 were HER2-negative and the remaing 56 had inconclusive or missing data on HER2 status. Patients were followed for a mean of 4.1 yrs. In a poster presentation March 16th Dr. Lang said that this is one of the larger studies to look at HER2 status as a prognostic factor in node-negative breast cancer. Results of the analysis that HER2 postivie patients in the series were significantly more likely to have cancer recurrence-both systemic and locoregional - and had a higher mortality rate. Recurrance free survival was markedly worse in HER2 positive women. The analysis found no significant association between HER2 and SLN status. In short the study
suggested that negative SLN findings do not necessarily predict good prognosis in HER2 positive patients.

When I was dx. the dr's were strongly confident due to my node status and tumor size...then I began to do my homework. Postive HER2 status in contract is sufficient to upgrad a node negative patient to the intermediate risk category. HER2 like to travel....

Also - to clear up any confusion I may have created regarding ages...
I did not mean that 50 was a cut off for chemo, rather what I was attempting to state to you was that "all woman" regardless of being 30 or 50 want to
have the best treatment possible. I have also noticed (at least in my cancer center) that the majority of the patients are not on the younger side, rather
more are 45 and over....with a great many over 60 +...and are doing
well with their cancer treatments. There are so many new advancements
with controlling the side effects today compared with just a short few years ago. Also, and this is the most important - we still do not know why or who
will respond to herceptin. Hopefully in the near future we will have more answers - but we do know that herceptin is working for a good majority of woman. We also now know that herceptin works best with chemo...
you are also very lucky that herceptin is given as a treatment to women who's cancer has not spread...this was not the case up to last August when
Herceptin was finally approved for non-metastatic patients. Please note
Sheila's post/ and Becky's post....once again, realize that a diagnosis of cancer does not mean instant doom. You will help your cousin make careful decisions. Please let us know how your cousin is....wishing you all the best.

Jean