herceptain w/out chemo

[panicked911]

I met with my onc today and we have decidd to try Herceptain w/o first doing chemo - along with ovary ablation and arimidex. Has anyone ever tried this type of protocol for stage 1, no nodes. no vascular and strongly er and pr positive. ?

[janet/FL]

Hi Panicked
Certainly have been there.
I am ER/PR negative, Stage 1.
I was diagnosed 11-2004 and the onc would not recommend Herceptin so I turned down the A/C offered. Finally, July 2005 I found an onc that would recommend it and he gave me the choice of Herceptin or Herceptin and a taxol drug.
We both agreed the studies said chemo and Herceptin seemed to have better stats. bit I honestly would consider not taking the chemo with it. I doubt if they have much solid information on us Stage 1 er's, particulary with out having rounds of regular chemo first. I have heard talk of just going the Herceptin Route. Hope that proves out.
I am taking Taxotere weekly x's 12 & Herceptin weekly for many more months. What size was your tumor? Mine seemed similar to yours-- 9mm. I was age 60 at time of diagnosis. Your age may make a difference, also, as to how aggressive they want to be.
Did you show strongly her2 as in +++? Have you had the FISH test?
Others here would have more detailed answers I am sure.
Hard to learn all of this in the short time we have to make the diecisions. :-(
Janet/FL

[bjj]

Hi

I'm in the UK and was told by oncologist that I didn't need chemo - Grade 2, tumour under 2 cm, no lymph node involvement. I had radiotherapy. I have pushed and pushed to have HER2 test and found out last week that it is positive. I am fighting not only to get Herceptin but also to see if I can have it without chemo and what the difference is in survival/recurrence rates if I do it that way. It is very hard to find out what is best. Cost is a huge problem over here and it seems that if they can avoid giving you Herceptin they will!

[panicked911]

I am 43 years old and actually had 2 tumors both 1.2. but all came out clean in terms of margins, nodes and vascular invasion. Chemo not really an option for various reasons and since I am strongly hormonal the treatment pla is ovary ablation, arimidex, and herceptain as well as radion for the lumpectomy I had.

Onc seems tot hik that Herceptain w/o chemo will have benefit and should ot have any serious side effects .....I am aware of the possible cardio problems and willhave the proper tests before hand - I was just wondering if anyone has heard of onc prescribing it this way...

[suzan w]

my onc. ( in Seattle where all the trials were, so she is pretty well informed) said that there was not any "data" on herceptin without chemo. I had invasive lobular, small tumor-8mm, bilateral mastectomy, nodes neg, ER+,PR+,Her2+ (fish score 2.94...not high but over the 'limit'). So I opted for 6 rounds of A/C...got very sick after 2nd round, so only did 4 treatments. I have now started on herceptin every 3 weeks, and arimidex for the ER+. I think that she might have done the herceptin without the chemo, then I had an Oncotype DX test, which showed a 'high intermediate'risk of recurrence within 10 years, so we went with the chemo, and herceptin. I am going to hit this with all the big guns available!!!

[janet/FL]

Susan W
Why did your onc not recommend Taxotere with the Herceptin? That seems to almost double the chance of no reoccurance.
Janet/FL

[Petesmom]

I am in a similar situation as you are except my onc will not give me Herceptin without chemo and I am ok with that. I just had my ovaries removed and am about to begin taking Arimidex. My tumor was strongly ER+ and it was HER2+++. No nodal involvement and no residual cancer after mastectomy. This is a hard one to figure which is exactly what my onc told me. I am continuing to follow the Herceptin story so that I will be informed in the event things change for the early stagers.


Petesmom

[CLTann]

Hi, I just had my second opinion regarding my treatment after mastec. I am ER+, pR+, HER2+++, 1.5 max invasive ductal carcinoma. Grades 1,2,1 for an overall grading of 1. no nodes problem. clean margin. postmenopause. Been on Tamox for about 4 weeks. The new opinion is to change Tamox to Arimidex, strongly recommend chemo of 4 weeks (once a week, A/C), followed by Herceptin. I do not want chemo and the doc is willing to forego that. He said that perhaps insurance may not cover Herceptin without chemo. But he would accept my idea of only Herceptin. The non-recurrence probability will only go up by around 5 to 7%, since for my type of cancer the non-recurrence is only 75 to 85% anyway. Adding arimidex, I am already up to around 90%. I wish there are others who have done Herceptin without chemo so that we have some solid information to go by. Please post if you are in this category.

[CLTann]

Hi,

An an addendum to above, I discussed the second opinion with my own onc, he agreed that I can proceed with Arimidex plus Herceptin, no chemo. The insurance will pay for this regimen. After tests for baseline heart function and others, I will get on the once every three week Herceptin infusion. Meanwhile, I will stop Tamox and start on Arimidex in about 2 to 3 weeks. There is no test during the treatment whether the regimen is working or not. Just cross my fingers that things will work out alright.

[tammymarie1971]

panicked, I think I agree that I would hold out on the chem if possible. Since you are strongley er+..and being treated for that and being only stage 1, I tend to think that you should be covering your bases with herceptin and arimidex just fine. I know it's a scary thought but you could brink in the tough guns later IF necessary. Now this is only my opinion, the ultimate decision is yours. Maybe you could get your onc to follow you closely with tumor markers (ca15-3) or (ca27-29) and if these start to elevate regularily then add the chemo right quick!
God bless and may His peace be with you as you go through this.
Tammy

[CLTann]

Just a comment on the tumor markers. For stage 1 breast cancer patients, these markers don't respond well. Therefore, most oncs will not suggest doing the tumor markers. I certain wish there is some test that will show the progress or the lack of it from the treatment.

[Jean]

Hi to Everyone,
I am a new member - I would greatly appreciate advise from all -
I have been fighting over treatment decisions with onc. -
I live 18 miles from NYC - have been to three top oncs.
All have said the same and I am not convinced that my treatment is correct.
Found this site and was thrilled to learn about all of you.
Here it goes.
Was dx in April - 6MM tumor, her2 +++ er/p - was ductal invasive,
had lumpectomy - lymph nodes were neg. had 26 treatment of radiation
and 6 boosters. I am now on Arimidex.
The dr. say that since the size of the tumor was 6MM there is no need for chemo - and they would not recommend herceptin. Also NONE of them would
acknowledge the oncoytpe test at all - it is not gold seal yet. They
all said even if the test came back high they would not change my treatment.
It appears that the tumor size is the main decision and not the type of
cancer - I am so exhausted from the battle - I am seeing another onc.
12/6. I feel as if I am wasting time just dealing with the onc in regards
to treatment. It is all a mystery - the oncs are concerned to offer herceptin to stage I patients with small tumors node neg. I am terrified
of the cancer returning and I am having a difficult time to understand
why the system is concerned with tumor size and not the type of
cancer. All of the three oncs were greatly concerned about introducing
a risk of heart problems. I am more terrified of the cancer.
Please give some advise!!!!!

Thank you,
Jean

[Becky]

Jean


Did you go to Sloan Kettering? I am just wondering because I go there for second opinions. Although I am node positive, Sloan is giving Herceptin via the HERA trial to those who finished chemo within one year. The HERA trial consisted of node negative and node positive women so if you went there or go there, this is an argument you could use to get Herceptin. I know because I was able to obtain Herceptin from the center I go to in NJ because I went to Sloan who would willing give it to me since I fit the trial protocol. When I told my NJ doctor I was going to leave and go to Sloan to get my Herceptin, he agreed to give it to me.

I don't want to assume that just because you are close to NYC that you have gone to Sloan but if you haven't, you should and if you have, you should argue with them since they are very much into "trial protocol" there.

Peace

Becky

[Jean]

Hi Becky,
Thank you for answering!
I have been to Mt. Sinai, Cornell B.C. , and Hackensack Med. Ctr and NY Preb. hosptial.

In the beginning I was appt.with Sloan - do you remember back in March
the Dr. Jeanne Patrik was killed by a traffic accident. - She was to do my
surgery - after her death I went to Cornell.....


Where do you live in NJ - I also live in NJ.....

Jean

[bjj]

Hi

I live in the UK. I was diagnosed Jan 2005. Had WLE and axillary clearance. All my lymph nodes were clear. My tumour was Grade 2 and 13mm and ER+. I was told that I didn't need chemo but had 7 weeks of radiotherapy. I was happy with the no chemo decision at the time.

If you look at adjuvantonline.com you can see what difference the various options make for your particular cancer. Only look though if you really want to know the stats! Chemo in my case would have made very very little difference and my oncologist felt that the side effects just simply weren't worth it.

I have only just been tested for HER2 - it's not standard in this country. I had to insist. It has come back positive but the letter I had from my oncologist stated that she would not be recommending Herceptin in my case. I do not understand why. I have an appointment with her in a few weeks time.

I have read up a lot about the HERA trial. About a third of the people on it were node negative but the tumour size had to be over 1 cm. This might be why it is not recommended in your case.

Like you, I am terrified of recurrences. I was before I knew I was HER2+ and am even more scared now as it seems to indicate a worse prognosis and an increased chance of recurrence. I do not know why my oncologist is not recommending Herceptin as I fill the criteria needed for the HERA trial - the conclusion from that trial is that everyone meeting the criteria should be given Herceptin. I have a horrible feeling that it is because I didn't have chemo orginally. Personally I would find it hard to psyche myself up for chemo now having been told I didn't need it and as I am now starting to feel better after radiotherapy side effects. I just don't know what to do.

It seems that HER2+ could become in the future one of the indicators for having chemo or not. I wonder if I had been freshly diagnosed this week whether my onc would have insisted on chemo instead of advising me not to have it as she did in January when HER2 wasn't known.

You might find the following link helpful. It is a report from a meeting of experts about how to go about treating breast cancer and combinations of risk factors etc.

http://annonc.oxfordjournals.org/cgi...tract/mdi326v1

On the right hand side there is a link to download the full text of the meeting.

Hope this helps.

I'm still confused though!

[Sheila]

It seems to me the reason the onc is pushing for chemo is your tumor size....the American Cancer Society recommends it as adjuvant therapy for a tumor your size even with clean nodes.My tumor was 0.7cm I was borderline for chemo, your tumor is twice that size....I did not have chemo, but recurred 1 1/2 years later...I will never know if this would have happened if I had chemo. I had no positive nodes, no lymphatic invasion, small tumor, mastectomy....it is just a guess for us as well as the Dr.s You have to do what you feel in your heart, then don't look back....if something comes back, they can do the chemo then. I would advise frequent tumor markers & scans to keep on top of things. Think Positive!!!

[joanie long]

Hi - I am Joanie Long and am listed in this forum. Upir situation sounds very
similar to mine - Would you be so kind to respond to let me know you received
this message? I simply am having a difficult time on learning how to use this
site. Thanks - Joanie Long

[penelope]

Hi Jean,
I am in a similar situation to yours. I have a 7mm er/pr- her2+ ductal tumor and it was recommended by 3 oncs that I have chemo. I took 3 AC and now am on herceptin for 1 year. I also chose to have bilateral mastectomies due to being the third generation in row. 6mm is not a whole lot different from 7mm so I can't imagine why they are saying no to you. Maybe it was my age that indicated that I needed chemo I was 35 at the time and very healthy. Sounds odd to say that now since they say I have a deadly disease but I never even got the flu. What is your age? I was told that the most concerning features of my situation were my age, er- and her2+ and therefor they would recommend that I took chemo but at the time did not recommend herceptin. I pushed for that. Given the tumor size I was boarderline for chemo. My chances of never getting it back with surgery alone would have been 80%. My decision was swayed to take chemo once I talked to Sheila. She had identical stats and advised me to take treatment when I first came on the board.

Incidently... you said that you are very worried about reccurance. My treatment has not helped me in this area. I am still just as afraid but it did give me something active to do about it.

Sorry for the book.....hope the info helps.

Jean,

You are receiving Arimidex? Are you er/pr-?

Mary

[Jean]

Penelope and Mary,
Much has changed since I first posted....
I consulted with Dr. Slamon out in L.A., He advised since my proliferation rate KI-67 was hight 40% - along with the oncotype DX test - high score of 31% high rate recurrance (he even felt I didn't even need the oncotype test since KI-67 level was so high) chemo/herceptin. For me it was never about the size of my tumor - rather my great concern was the character of the tumor. I had asked one onc. how many cells are in a 3 MM tumor? He said, "about one million" now when we consider that it only takes one to escape into the blood system - those odds for me were way too great. My nodes were negative, but I was not comfortable (yes that is favorable) but still did not feel confident. Er+ was postive 90% (strong) pr- negative. I did have great margins after lumpectomy - but once again knowing now the character of my tumor which was aggressive, her2+++ I made the decsion to move forward with chemo/herceptin. I believe that the early stagers (I was stage 1,again favorable) are a NEW generation of breast cancer patients. I do believe that the next few years will disclose treatment changes that will not depend on the size of the tumor but rather the chemistry of that tumor. These decsions are not easy when you are an early stager - but I felt like many of the dr. were not hitting the nail on the head so to speak. I had one dr., say to me "You are cured" well gee, where was I when the cure for breast cancer was found? I have said this before - being an early stager is almost like being a "Little bit pregnant" the onc. go by the size of the tumor and tell you "You are lucky" Well I don't agree - I was a very active 55 Yr. young woman enjoying life and never had any health issues. No history of breast cancer in my family (mother had 7 sisters). So it happens! Our health changes on a dime and we must get all the information we can on our "OWN" tumor and the character of that tumor in order to make the best health decsions. I was on Arimidex prior to chemo trt - after returning back from L.A. I knew I would be starting chemo/herceptin - so of course I had to discontinue the Arimidex.
I am sure that upon completion of the chemo I will be back on Arimidex along with a yr. of herceptin. I am now half way through chemo and will be completed on 9/14 (God willing) all is going well. I just wish that women
did not have to struggle so in order to understand their own tumor makeup.
I cannot understand why these tests are not done as matter of course
so one hears the full load from day one. I had to demand a FISH test,
oncotype test - but first I had to find out about them. Would it not be nice
and effective if the oncs. have complete disclosure in their offices about testing that "WE" the patient may wish to have done. The system is strange - I say thank the Good Lord for this wonderful site. I am convinced it saved my life. Hope this helps.

Warmly,
Jean