Recurrence

[Janet M]

Hello Everyone
This is my first time on the website. I am now 41 yrs old -diagnosed December 2002 1.4cm lump, ER and PR negative, 2 nodes out of 12 positive, HER2+++ I had a mastectomy and then AC and Taxol. I have not had any herceptin. I have read so much but it does not seem enough. My oncologist does not answer the difficult questions very well. Is there really any significance in being HER2 positive in relation to recurrence and if so can anybody tell me what the studies and statistics are saying.
Thank you Janet M

[imported_Joe]

Janet,

I found this recent study on the internet

Regards
Joe



Univ of Pa Study (http://patient.cancerconsultants.com/breast_cancer_news.aspx?id=32354)

[Merridith]

Hi Janet M:

Check out this site: https://www.cancerfacts.com

It is the only site that I have found that gives detailed statistical information tailored to each persons specific diagnosis AND accounts for HER2 in the stats. It takes a while to fill out the form, but its worth it.

Good luck!
Merridith

[*_StephN_*]

Hi -
And welcome.
There are some factors in your pathology report that would also help indicate what the chances are for metastesis or recurrence in your case.
A high grade tumor, fast cell division rate and assessment of the infiltration area are something to look at carefully.
Any good med onc will study the path report in great detail before coming forth with a chemo regimen or trial to propose. Many docs don't take the time or trouble to go over this with their patients as they think is may be too technical. But, I got a copy of my path reports (all three) and went over them with my surgeon and med onc. It helped me to understand why I was being steered to the treatment I got and not something else. (Of course at that time there were fewer options, but I had what was considered aggressive treatment for an aggressing tumor type.)

[Janet M]

Thanks for the help. I'm still curious about what other people's oncologists have said about prognosis of those who are HER2 + and also stats/information about percentage of HER2 + women that actually have recurrence.

[l.custer]

Hi Janet,

I am a nurse and in your position with the exact same questions right now. I want to know what the recurrence numbers are.

Laura

[Kristen]

Hi Janet,

I think all of us would like to know the answer(s) to those questions. I have looked at so many sites and have even wrote to the company sponsoring my trial and to no avail. The response is it is to early to tell is the by line. To me, if they can continue on to other phases of the trails then there should be some information out there to support finding that something is working and it is ok to proceed, but I can't find them anywhere.

Maybe we should ask Eric, he seems to be the master of finding studies. The last inquiry I had, I was directed to the Library of Congress and I haven't had time with the holidays to search. If I find anything I will happily share it. We are a minority, but yet it blows my mind on how many trials are being done in the name of HER2. Vaccine trials, trauz. trials and still nothing. Did your Dr. give you any kind of prognosis? Mine said 50/50, I wonder where they get there info, or if it is just field related experience? This board here has given us more insight to our disease than any medical publications. Every body shares success stories and treatment options and treatment failures. All I can add is to stay in touch with this board, for it seems to be on top of what is going on for and around us. Take Care k

[Lolly]

I was given a prognosis of 70% chance of surviving 5 years if I elected to take all the treatments offered at primary dx of Stage IIIB; A/C, Taxol, Rads. We talked about Herceptin being available "down the road" if I recurred, but no statistics were given on that possibility and I didn't ask as I was just glad I had treatment options; my situation was quite serious. I was dx in Aug. '99 and recurred in Jan. 2001. It's been 5+ years since dx, and I just celebrated our family's 6th Christmas and New Year's. I know my perspective as a Stage IV survivor is different from those of you who are early stage, but we just celebrate each day, each milestone, and count our blessings. I think the doctors are reluctant to give a prognosis for chance of recurrence, but prefer survival stats, especially as we Her2 'ers are changing the stats in our favor. Since Herceptin has been in clinical use since FDA approval in '98(?), it may be the stats for recurrence may not be considered accurate until a few more years have passed. I know it's frustrating, but they don't want to tell you something that's possibly inaccurate.

Love, Lolly

[*_Janet M_*]

Hello everyone
I suppose the worst thing for me at the moment is that i am wondering if i have had enough treatment. I was not fortunate enough to get onto a trial for herceptin and have concerns that this is going to adversely affect me in that disease will recurr and perhaps sooner.
Janet M

[Lolly]

Janet, as time goes by you will begin to feel more comfortable about your health, it really does take time though. The study that Joe linked is one I've seen referenced before, and it's encouraging. Just keep an eye on the trials and stay informed about new developments, and in that way you'll begin to feel in control of your life again.

Love, Lolly

[imported_Joe]

I found this information.

Warmest Regards
Joe




Cancer Information From CancerConsultants.com

Her2/neu-Positive Breast Cancers are Not More Likely to Recur after Breast Conserving Therapy
Researchers from the University of Pennsylvania have reported that Her2/neu-positivity does not appear to increase the risk of local recurrence in women with stage I-III breast cancer who have been treated with breast conserving therapy. These results were presented at the 45th annual meeting of the American Society of Therapeutic Radiology and Oncology held in Atlanta GA, Oct 2-7, 2004.

The optimal strategy for treatment of women with localized breast cancer who do not have cancer spread to the axillary lymph nodes has not been identified and continues to be a topic of research. However, it is clear that without adjuvant therapy, a significant number of women with node-negative breast cancer will relapse. Determining factors that are associated with a higher risk of relapse can improve the ability to choose optimal adjuvant therapy. For patients who have hormone receptor-positive cancer, anti-estrogen therapy is usually administered. For women who have hormone receptor-negative cancer, chemotherapy is usually given. Research has shown that patients who overexpress the oncogene Her2/neu have an increased risk of cancer recurrence and Her2-positive cancer may be associated with a poorer response to hormonal therapy compared to Her2-negative cancer.

The recent University of Pennsylvania study was a retrospective review of the medical records from women treated for stage I or II breast cancer between 1993 and 2000. There were a total of 288 patients involved, 202 (70%) were Her2-negative and 86 (30%) were Her2-positive. Five years after treatment, there was no significant difference between the groups in recurrence rate, survival, relapse-free survival, and cancer spread (see table).


Her2-positive
Her2-negative

Local cancer recurrence
2%
2%

Overall survival
91%
90%

Relapse-free survival
90%
95%

Survival without distant disease
91%
95%


Reference: Harris ER, Hwang W, Lee EA, et al. The Impact of Her2/neu Status on Local Recurrence in Women with Stage I-II Breast Cancer Treated with Breast Conservation Therapy. Proceedings from the 46th annual meeting of the American Society of Therapeutic Radiology and Oncology, held in Atlanta, GA, Oct 2-7, 2004; Abstract #10.


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[*_Janet M_*]

Joe, I am still very confused. If the research is saying that there is no difference to recurrence and survival rates in women wo are HER2 positive, why this website, why all the ?hype about being HER2 positive. I don't know how long HER2 status has been routinely tested in the US but where i live in Australia and had my mastectomy in February 2003, HER2 was not routinely tested. i actually requested the test after doing some research. Incidently HER2 testing at the hospital where i had the mastectomy is now done routinely It came back 3+++ and my oncologist said it affects my overall risk of reurrence etc. Has research into the prognostic value of HER2 status now determined that it is not of prognostic value. The other comment my onc made was that if i do recurr at least we know that we can use herceptin. When i later presented to my onc with a sore leg and we discussed the chance of it being bone mets (came back clear on bone scan) he said 'well you HER2 positive' almost as though it was a foregone conclusion that at some point i would have recurrence. Janet

[Kristen]

Joe,

I am a little confused also. At the top of the study, they said it was used in stages 1-3, later in the report, they did not mention stage3?

Also what was the treatment regimine for these women? What drugs were given to them? any answers would be greatly apprecitated. Thanks. k

[Janet M]

Kirsten, i was glad to know that i am not the only one who is a bit confused. My oncologist doesn't like to really talk about the difficult questions such as recurrence and prognosis which really frustrates me. He did however say that i had about a 60% chance of recurrence and in particular he would not be suprised to see it happen within a two year period. I am not sure whether he meant two years from diagnosis which was on 31 December 2002 or from end of chemo in August 2003 which was when we were having the conversation.
Janet M

[Kristen]

Morning,

My old Onc, was the same way, she wouldn't tell me anything either. My rad onc, was the one that told me, if it comes back, they ususally see it within 2 years, same as my reconstruction surgeon. I had an S-gap and he told me, most women wait 2 years to get the lipo on the other side to make it match, to be make sure that it doesn't come back.

After, I posted that, I remembered I had taped a med show on some cable channel and it was a prof from the U of PA and was teaching about BC. They types and so on. And again, when it came to HER2, all he said was that it had a poorer prognosis.

I did a lot of thinking about this last night and reading the posts lately there seems to be a lot of reoccurences. However the people on here that post regularly are just a small part of the population that has HER2. I started thinking about all the tests and research going on and the test to see if Herceptin is working is only for stage 4. The U of W trial is only for Stage 4. I wonder what the missing link is? MD Anderson is doing the trial on some kind of protein levels to see if it will work for you, is that it? I just don't know. I don't know what the oncs know or how they know what the % of your prognosis will be, is it the stage with HER2. lolly posted hers different from mine. Rozebud and I had the same onc and she had a different prognosis than me. She is a different stage. My history is a lot like yours. I have to run now, have to get ready for work. Hopefully someone has the answers and will share them with us. Take Care k

[*_jeff_*]

Hello all,

I'm coming late to this discussion but wanted to add that the most recent information suggests that her2 status is not an independent prognostic marker for women with no nodal involvement, but is a "poor" independent marker for women with nodal involvement.

What this basically means, if I understand it right, is that prognosis is not affected by her2 status unless you have positive nodes.

If you do it means you have a higher rate of recurrence (but her2 status has not been tested long enough for there to be any trustworthy data on exact numbers).

Part of the reason the recurrence rate is higher is the her2 itself, but part also seems to be that her2 status correlates positively (that is, comes along with) with other negative factors like er/pr negative status, and high tumor grade.

I don't know if this clears anything up or muddies it more...

Best,
Jeff

[Kristen]

Jeff,

Thank you for the info. I am still a little confused. I thought some where that HER2 node neg was harder to treat or had a higher recour rate. Or was that they just didn't respond to Herceptin as well?

I guess I just get frustrated that we hear these little bits and pieces of yes it is a poorer prognoisis and it grows faster, etc. but no one will account for the info. on early stage. Do you understand what I am trying to say? I don't know that I am wording it correctly?

With the drug being out for 10 years, and I don't know how long it has been tested in early stage, but shouldn't something be released on some data available? For me that is the hardest thing for me to understand.

Again, Thank you for your post, you always have something valuable to impart. I am tired of the guessing game, but I guess that is the nature of the beast. i will continue to research and learn and hopefully we will see some answers soon! Take care, my best to you and your wife. K