To treat or not to treat VERY early stage HER2 IDC - Page 2

weety · 02-21-2011, 08:13 PM

I believe that when I was diagnosed with a 7mm tumor in 2009, I was told that ASCO's guidelines for that size was to "consider" chemo/herceptin. The under 5mm's recommendation was NO chemo or herceptin. I think since then, though, they have found that even small HER2+ T1a and T1b tumors (1mm-9mm) recur at quite alarming rates, even when nodes are negative--I think I read that 23% had recurrences! So, I think the new guidelines, based on this info, is that the "consideration" chemo has shifted downward--Now anything over 5mm is a definite recommendation for chemo, and the under 5mm group is the "consideration" group. I'm not sure what I personally would do with yours (2mm) but I do think you fall into that consideration group--I would not automatically accept that you don't need any more treatment. Get some expert opinions before you make a decision. You are right, this is your life you are talking about!

Jean · 02-21-2011, 09:15 PM

All we can do is share our own information which may help you to ask more questions and get as much informaiton as possible. Treat or not treat? It would be so much easier if when dx. there was a cut and dry answer to this. When I was dx. in 05 herceptin was not offered as a treatment to early stagers. Like you I had a small tumor which when discovered early was 6MM and after the biopsey there was a 3MM tumor left for the surgeon to perform the lumpectomy. I was told like you how lucky I was to catch my breast cancer early. I will share with you my thoughts and reactions.
Lucky? Lucky would be to never have breast cancer! While I am grateful and was always thankful for an early dx. having mammos on a regular basis etc. I did not feel lucky. What made matters worse there was no definite answers to my questions especially at that time in 05. I was seeing 3 top onc. in NY one at Sloane, NY Preb. Mt. Sinai hospital. All said the same thing...small tumor, no treatment just AI. Yet my gut was reacting and my thoughts were, okay we caught it early, neg. node, (that is not a guarantee only means it is favorable) aggressive her2 +++ er+ positive. This tiny tumor which all onc. at that time poo pooed as too small to treat turned out to be rated high as a recurrence when tested on Oncoytpe DX. So, I have always said, it is like being a little bit pregnant.
Do not discount Her2 disease due to the size of tumor. I have often stated on the board that size is not the answer when making treatment decisions. All the top onc. in NY were wrong. They were following the current protocol at the time, not treating the disease as the path report showed a high KI 67 level. I finally flew out to see Dr. Slamon who is the researcher and dr. who is the father of herceptin. After reading all my reports and a complete exam he said that without a doubt herceptin treatment was a must. In fact it is his theory that all Her2 patients should have herceptin. As far as I know your insurance may not permit herceptin without chemo because all the trials have been performed with chemo. You may be able to get a dr. who will just treat with herceptin off label. You will have to find a dr.
(private practice) to treat you this way. I had TCH as Dr. Slamon advised. WE have had many discussions on this board about treatment for early stage women.
I am one and I strongly advocate that do not permit size to be the only factor when making trt decsions. We know that a small tumor like mine had millions of cancer cells ....so do not believe that motto that a small tumor holds less danger. The advantage to dx. a small tumor is early treatment and containing and controlling. We still do not know why some women have recurrence while others who have had larger tumors never recur. Remember we each have different bio chemical make ups. The oncotype requires a very small sample from the tumor. I was first told by my surgeon that the tumor was too small to offer a slide.
He was wrong - I called the lab out in Calif. and they assured me a small tiny sample on the parafin slide was all that was needed. Ask questions, get lots of information so you know what quesitons to ask.
If I can be of any help just reach out. We each have to make choices that work best for us. Now when I look back at that time I still think how silly for a dr. to say
the tumor was small enough not to be concerned. I will attach some reports for your reading on small tumors and treatment.

I understand your torture of making the best treatment decisions - I did not fear the treatment - I feared the Her2 coming back more.

I hated having to subject my body that I took great care of all these years to chemo and chemicals. But after careful study and Dr. Slamon there was only one choice for me.

I wish you all the best in your journey and please know you are never alone and this site offers wonderful support.
As I said you can reach out to me by PM

Best Wishes,
Jean

Jean · 02-21-2011, 09:55 PM

http://www.hemonctoday.com/article.aspx?rid=61261

Keep in mind that early stage bc women who have had treatment will provide the data in the next few years.
Trials were not performed and certainly need to be performed to get the answers on how and when to treat Her2 small tumors. Dr. Edith Perez states data is lacking on small Her2 tumors.

Joan M · 02-22-2011, 04:56 AM

Bravo, Jean. Well said. Also, I would agree that every HER2 survivor should have Herceptin.

I'd like to add that the point about the NCCN guidelines is that many doctors and insurance companies follow them. So, if you're being told that Herceptin is not for you, it might be based on just those guidelines. Two breast cancer medical oncologist from Sloan-Kettering are on the board of the NCCN breast cancer guidelines. On the other hand, some oncologists, even at major cancer facilities, bend the rules, and as Weety pointed out, ASCO has its own guidelines.

Another NCCN guideline problem is using Herceptin and Tykerb together even if a metastatic survivor progresses on Herceptin. Survivors on the board have expressed concern that their oncologists will not prescribe both drugs toegther, even though they do not mention the guidelines. Tykerb has been approved by the FDA for use only with Xeloda. But Dr. Eric Winer of Dana Farber/Harvard Medical School was touting online the superior results of these two drugs in combination, at a recap of metastatic breast cancer from the December San Antonio Breast Cancer Symposium. Yet doctors -- and insurance companies -- will still deny patients. Last week I wrote an e-mail to Dr. Carlson of Stanford University, who is on the NCCN breast cancer guidelines board pointing this out to him, since the NCCN's annual meeting is coming up soon. Dr. Winer is also on that board, as well as the two oncologists from Sloan-Kettering.

From my own personal experience at a major world renown cancer institute in NYC, I was advised in 2004 by a breast oncologist of no minor standing after I finished my treatments for stage 2b breast cancer at a local NYC hospital, that follow up should comprise only blood work and tumor markers, but no scans because of the stage of the cancer. I left the consultation thinking that with a 2.5 cm tumor that was HER2+, ER-/PR- and seven positive lymph nodes that hell would freeze over before I wasn't scanned. My local oncologist agreed to scan me routinely and three years later a 9mm tumor was found in my lung. After that I asked for an annual brain MRI, and the second one showed a 2.6 cm tumor. The brain surgeon at Sloan-Kettering was "teasing" me by saying that she'd heard I'd found my own brain tumor, because I did not yet have symptoms.

My sense about cancer is that if oncologists practically have "to kill" us with chemo to kill cancer, what does that tell us about cancer?

Joan

sarah · 02-22-2011, 09:25 AM

yes looks like we all agree, get herceptin.

Joan I love your expression: "My sense about cancer is that if oncologists practically have "to kill" us with chemo to kill cancer, what does that tell us about cancer?"

I'll definitely use it sometime in our cancer support group.
good luck to all of you on your journeys
health and happiness
love sarah

Joan M · 02-22-2011, 04:14 PM

Just want to give a clarification or update. It seems that herceptin and tykerb (trastuzumab and lapatinib) given together without chemotherapy are listed as a treatment for metastatic breast cancer. It's on page 56 of the guidelines (capecitabine is Xeloda):

NCCN Guidelines for PatientsTM: Breast Cancer

Discussion Version 2010

Preferred Chemotherapy Regimens in Combination with Trastuzumab
(HER2-Positive Metastatic Disease)

• Paclitaxel with or without carboplatin
• Docetaxel
• Vinorelbine
• Capecitabine

Preferred Regimens for HER2-Positive Tumors Already Treated with Trastuzumab (HER2-Positive Metastatic Disease)

Lapatinib and capecitabine
Trastuzumab with different chemotherapy drug than was used before
Trastuzumab and capecitabine
Trastuzumab and lapatinib (with no other chemotherapy)

This is a relief to know, as several women had complained about not being able to get both together. I believe it was Sheila whose insurance company initially would not pay for Herceptin and Tykerb in combination, but only for Tykerb and Xeloda (capecitabine). After much pavement pounding with the insurance company, doctors, and the drug companies, I believe the insurance company finally agreed. Another woman mentioned more recently that her oncologist did not want to prescribe the two drugs together and was being cautious.

Joan

AlaskaAngel · 02-22-2011, 04:37 PM

Trastuzumab is better than nothing, but just how much better is hard to know.

A number of those who were like me and were post-chemo and in limbo when trastuzumab was made available to those newly diagnosed, went ahead and did herceptin alone, "late". My onc felt it was unlikely to benefit me but was willing to provide it "late", and I chose not to have it. No one can say for sure whether those who did it "late" got any benefit in terms of actually keeping cancer at bay, whether they believe they did or not.

The costs to the health care system as a whole are particularly substantial for that treatment.

It is a matter of choice, but I don't think it is proof, to be someone who stays NED with "late" trastuzumab.

Choice, with or without chemo or trastuzumab is valuable. It is unfortunate that trastuzumab alone has been discouraged.

AlaskaAngel

musicmama · 02-23-2011, 05:17 AM

Hi everyone,

Here's the report on my first trip to the oncologist.

She offered me everything from just taking Tamoxifen to Tamoxifen + Herceptin to full blown Chemo, Herceptin and Tamoxifen although she was clear that our insurance may not pay for anything but the Tamoxifen. If choosing the chemo option she seemed to be recommending Taxol+Herceptin for 12 weeks and then following with Herceptin every three weeks for the rest of the year.

She wasn't really making recommendations per se...she did say that if it were her she wouldn't do "nothing" for whatever that's worth.

So...I'm more confused than ever.

Can any of you give me clarity on the Tamoxifen - HER2+ issues? I have read in various places that there can be problems if you are a poor metabolizer of Tamoxifen, but, the doctor said she didn't see any clear evidence of that and wouldn't recommend the blood test.

Also, what about Herceptin alone? I've read that it works better with Chemo. Do we have evidence that it works by itself?

I know some of you on these boards have done the 9 week Herceptin option. My doctor wouldn't even discuss it. I know it's controversial so how did you get your doctors to okay it?

I am seeing another oncologist tomorrow. I'm interested to see if his approach is different.

Thanks again for all of your input and advice!!

musicmama

Hopeful · 02-23-2011, 07:41 AM

Musicmama,

I just wanted to point out one misconception - that "Herceptin works better with chemo." Since there have not been trials of Herceptin without chemo in the adjuvant population, it is impossible to know that. We do know that chemo works better with Herceptin for adjuvant patients. FWIW, Herceptin has been shown to be an active agent when used alone in neoadjuvant and metastatic populations.

Best of luck to you with your treatment plan,

Hopeful

NanaJoni · 02-23-2011, 09:30 AM

I can't answer any questions on Tamoxifen since I'm er-/pr- but I did 4 treatments of TCH (taxotere/carboplatin/Herceptin) and am now doing Herceptin alone. It sounds like you will need to push your insurance company if you feel you need to do chemo + Herceptin. If they won't pay for the chemo, then there are several programs that can help with the costs. My treatment center offered to help with applying for those at my "teaching session" before I started chemo. We are very blessed in that we could take care of the difference that the insurance didn't pay but it's wonderful help for so many folks. My center also has "patient navigators" who are nurse practitioners and just help you coordinate appts, understanding all the new and scary things that are happening, etc. My onc, radiologist and the navigator meet as a team (and I can join them if I want) just to be sure everyone is on the same page and that we all have the same info as we go along. It's a great program. Your stage is the same as mine and I had chemo. The difference is probably that I had the second tumor that was triple negative and chemo is pretty much the only weapon to use on that kind of cancer. You have in your signature "grade 2" and also "grade 3"? Grade 3 would mean a more aggressive cell type which combined with HER2 positivity might be reason enough to ask for the chemo. Hopefully, you'll have more clarity after the appt tomorrow.

KDR · 02-23-2011, 10:30 AM

Musicmama,
I agree with the onc that "something" should be done. Did you meet yet with the other two? All together, and your own intuition, should guide you.
My personal experience tells me not to "play" with HER2. There was no lump in my breast, at least it was undetectable, in April 2010. By June, six weeks later, it was 3 cm.
That was enough to show me what I was dealing with.

bev618 · 02-23-2011, 12:28 PM

I was not given a choice as to whether or not I wanted to do only the Herceptin; and I am not sure how I would of reacted. I did 'fight', but only midly to not have chemo but when I sat down and thought of the end results, it was a no brainer for me. I have a 23 year old son that I want to see get married and have children, and I didn't want to have to go through this again, if that is a possibility. So tomorrow I have my second infusion (Taxotere/Carboplatin/Herceptin) and will be 1/3 of the way done with the chemo (total of 6 cycles) and then will continue on the Herception for one year. And yes, I have lost all of my hair, but it is hair, and I found the cutest wig that I am getting more compliments on.....ummmm not sure how to take that, but it is all good! Positive attitude and life is good!! Maybe I will feel different after my 4/5/6th treatments but I am good now and that is all that matters. My 2 cents worth.

Hugs

BonnieR · 02-23-2011, 04:24 PM

This is a good example of the importance of second, and even third, opinions. The more input the better. Hopefully, you will hear the same thing often enough, all filtered through different people, until a choice become clear to you.
Keep the faith.

Jean · 02-23-2011, 11:26 PM

Have you checked with the hospital that is holding your tumor if they can provide a slide for the oncotype test?
You may want to call the company in Calif. and ask them the size of the slide they need. I remember my surgeon said the same thing to me that they did not have enough to send since the tumor was too small. That was not accurate and the Calif. company's lab was very helpful and a very tiny specimen is needed to do the testing.
Now if your oncotype test comes back in the low end that will help you make decisions. This will take much of the guess work out of the equation. If the test comes back high it is highly likely that your insurance will pay for your treatment even though your tumor is below the guidelines.

Customer Service
Tel: +1 (866) ONCOTYPE (866-662-6897)
Fax: +1 (650) 556-1073
Email: Customer Service
Corporate Headquarters
Genomic Health, Inc.
101 Galveston Drive
Redwood City, CA 94063
Tel: +1 (650) 556-9300
Fax: +1 (650) 556-1132

Good luck.
jean

alicem · 02-24-2011, 09:24 AM

I agree with everything that Jean has to say. This Her2 bugger is something that, left untreated, is scary - regardless of size. My tumor was not as small as yours, but I was still Stage 1 upon its diagnosis. My oncologist said that left untreated, I had a 30% chance that it would recur & metastisize. Statistically, that meant 70% chance that it would not. You will find women who did nothing, and are just fine. However, I did not want to take this chance. If the weather forecaster says there is a 30% chance of rain, then I still might plan an outdoor picnic. But when it comes to cancer, I don't like those odds.

02-24-2011, 11:10 AM

I agree with alicem. I was stage I when I was dxed and my doctor told me that if I leave it alone after surgery, the chance that it returns is 30%. If I do the TCH, the chance of it returns is 5%. From about 1 in 3 down to about 1 in 20, I had no hesitation to take the TCH.

I worked from home during chemo (11days off and 10days on for 6 cycles) and returned full time last Feb (my last TC infusion was Feb 4th last year and my last H was Sep 28th 2010). I pretty much maintained normal activities after last Feb. Now the only differences compared before treatment are that my hair is thinner on top of my scalp (it gets better as the time passes by) and my legs are slightly swollen (much improved and getting better each day). I have no regrets!

SFJJ

AlaskaAngel · 02-24-2011, 11:49 PM

Whatever your choice, best wishes to each of you. Getting through chemotherapy and radiation treatment can be done. It wasn't fun, but I did it.

For those who are at least risk for recurrence, consider:

A percentage of those who choose chemotherapy to "play it safe" will end up with recurrence despite having gone through chemotherapy.

A percentage of those who choose chemotherapy to "play it safe" will end up disabled by chemobrain because they did chemotherapy, and there is no way to know whether chemotherapy prevented recurrence for them. Those who do not chose chemotherapy do not have that risk.

A percentage of those who choose chemotherapy to "play it safe" will end up disabled by permanent neuropathy because they did chemotherapy, and there is no way to know whether the chemotherapy prevented recurrence for them. Those who do not chose chemotherapy do not have that risk.

A percentage of those who choose chemotherapy "to play it safe" will end up with leukemia because they did chemotherapy, and there is no way to know whether the chemotherapy prevented recurrence for them. Those who do not choose chemotherapy do not have that risk.

It is unknown how many who do chemotherapy and radiation experience a return of cancer because they did chemotherapy and radiation, but both are considered carcinogenic.

AlaskaAngel

musicmama · 02-25-2011, 06:03 AM

Hi again everyone,

I went to my second oncologist last night. He's the head of oncology at my local hospital and a breast specialist. He was very skeptical of my HER2 status. He says the lab that did the FISH test is notorious for over doing it and saying that you are HER2 when you're possibly not. I had a very borderline FISH score of 2.3....He's going to call the hospital where the biopsy was done and see if we can run another test. If not, I'm not sure what to do. He was leaning toward only doing Tamoxifen - based on the tiny tumor (.2mm) ER+/PR+ status and the equivocal FISH score. I was leaning toward doing Taxol/Herceptin to be safe but now I just don't know. I guess if we find that I'm not HER2 positive and I really trust that to be true, I might be okay just doing Tamox.

I know I should feel grateful that I'm in this position, that things were caught early and that I have choices, but I'm feeling so overwhelmed by this choice. I have a beautiful life and two beautiful children and I want to be here for them for a long long time. I know there are no guarantees either way but I'm just sick over the possibility that this thing will come back. Ugh...

Thanks to all of you for giving me your advice and support. It's good to be able to vent to people who get it.

More later I'm sure.

musicmama

NanaJoni · 02-25-2011, 07:35 AM

Musicmama - this article is from our own forum today:

http://www.medicalnewstoday.com/articles/217194.php

DFS means "disease free survival" and OS is "overall survival". It seems this study is another confirmation that agressive treatment can make a difference. So it's really important that the second oncologist is verifying that you truly are HER2+.

alicem · 02-25-2011, 07:41 AM

There are 2 types of tests that can be performed to determine your Her2 status. If they can retest your biopsy, perhaps they can do the IHC test the second time.

Testing methods

The two main methods used for HER2 testing are immunohistochemistry (IHC) and fluorescence in-situ hybridization (FISH):
Immunohistochemistry (IHC)

Immunohistochemistry (IHC) can show how much of the HER2 protein is present in the tumour sample. The HER2 level is graded from 0 to 3+.

0–1+ means that a normal amount of the HER2 protein is present and the result is HER2-negative
2+ means that a moderate amount of the HER2 protein is present
3+ means that there is a higher than normal level of HER2 protein and the result is HER2-positive.

When a tumour is scored at 2+, UK testing guidelines recommend that a further test is carried out. This is because a result of 2+ does not always mean a cancer cell has a high level of HER2. In this situation, an extra test (FISH) is used to give a definite result.
Fluorescence in-situ hybridization (FISH)

Whereas IHC measures the level of HER2 protein in the tumour sample, FISH testing measures the amount of the HER2/neu gene in each cell. This gene is responsible for the overproduction of the HER2 protein.
There is no number scale for FISH testing. The result is either:

FISH-negative – normal levels of the gene are present, or
FISH-positive – excessive amounts of the gene are present. This is sometimes called gene amplification.