HER2 Positive and ER Positive

TAG · 01-05-2006, 06:18 PM

Hi ladies,

I'm so happy to find this board, I really need some help!

I have a friend that was diagnosed with breast cancer at the end of August 2005. This is what I do know about her:

Her OB/GYN found the cancer on a mammogram..............Thank God!
She had/has DCIS in her left breast and my friend chose to have a total masectomy of the breast. At the time of surgery they removed one lymph node and it had a 0.4 size tumor on the node that was cancerous. So, they scheduled another surgery about 6 weeks later to take out more lymph nodes under the left arm. All nodes came back normal, no cancer. It's such a LONG story and I may not have all the details correct but her Oncologist told her after the masectomy that she was cancer free but then her Oncologist wanted a second opinion on the one node they first removed and it came back that it was cancerous with a tumor so then my friend was told she had Invasive Cancer Stage I Breast Cancer, that's when she went in to remove the other 20 or so lymph nodes which came back not cancerous. In the meantime she was also been told she is HER2 Positive and Estrogen Receptor Positive. It's now January 2006 and she still hasn't had any treatment. Her Oncologist wants her to see a Surgeon at a University because she doesn't know how to treat her because she is HER2 positive and ER positive which she was told is rare and hard to determine what treatment is best for her. Her appt with the Specialist is next week so we are all hoping for some direction and good news.

I'm writing this post for her because she has 5 kids and it totally stressed out so I thought I would try to get some thoughts and ideas from you ladies.

Any help would be so appreciated!!!!

Thanks,
Toni

CherylS · 01-05-2006, 06:30 PM

First of all, if your friend had an affected lymph node, she is not stage 1, she is not DCIS, which is stage 0, she is stage 2 and should have received treatment immediately following her surgery. I am HER2+++ and 75% ER +. It is less common, but not rare to be both. Anyone who is HER2 + is now receiving Herceptin, regardless of stage. She should absolutely be on either Tamoxifen or an Aramotase Inhitbitor, depending on whether she is pre or post menopausal. And the affected lymph node combined with the HER2 status warrants chemotherapy, 4 rounds of AC, followed by Taxol, which should be administered for the first 12 weeks weekly in combination with the Herceptin.
The Herceptin should then be continued for the remainder of one year, typically every three weeks. She needs a new oncologist and quickly. Her double masectomy should eliminate the need for any radiation.

Best wishes to her. You came to a good place for help. I'm sure others will respond.

TAG · 01-05-2006, 07:05 PM

Hello Cheryl and thanks for responding so quickly.

I agree that she needs a new Oncologist but she isn't aggresive enough. I'm the type that needs knowledge and would be on this board or the Internet trying to understand all of this so I can have a educated conversation with my Dr. My friend just turned 40 and is pre menopausal. My friend told her Oncologist that she wanted the whole breast removed so the cancer couldn't come back. During the beginning of this her Oncologist didn't think it was necessary to remove the whole breast since she only had DCIS but my friend was aggressive and wanted the breast gone. She still has her right breast that is cancer free at this point.

I'm confused when I read about your diagnosis being HER2+++ and 75% ER +. What does HER2+++ mean? I guess I'm confused about the three plus signs (+++) Also, I'm not sure of my friends percentage of being ER positive. She has never mentioned a percentage to me during any of this. I guess I can ask her what percentage she is, I'm sure she doesn't even know that.

My friend was also told that Chemo wouldn't help her because she is HER2 Positive and ER positive. Her Oncologist has mentioned Herceptin and Radiation to her but again she hasn't had ANY treatment besides the one breast removal and lymph node removal. I really want to help her and want to understand all of this myself. She was also told that Tamoxifen won't help her either.

I'm sorry if I'm confusing you but I'm learning as I go along.

Thanks again for any response!

Toni

CherylS · 01-05-2006, 07:36 PM

If she is ER positive, tamoxifen is absolute standard of care for pre menopausal women, and has been for 20 years. Being HER2 positive and ER positive has nothing to do with reaction to chemo, except that the HER2 has been suspected of some resistance to chemo. Go to the home page of this website and you will find lots of info on HER2/NEU. The 3 + is a measurement based on the number of cells that expressed HER2 overamplificaiton. Again, DCIS means that no cancer left the duct. If it was in a lymph node, it left the duct. Not DCIS then, and if I am correct, the lymph node automatically warrants a stage 2 diagnosis.
Someone else may weigh in on this, but I'm pretty sure about that. Her pathology report should at least show HER2 amplificaiton, % of ER and PR positivity, tumor grade and tumor size.

There is something just not right about this doctor. Way too much time is passing and she needs to get on it now. Are you near a major hospital? That would probably be a good start for a referral. Otherwise a reputable cancer center.

Again, best wishes to her.

saleboat · 01-05-2006, 07:38 PM

Toni-- you sound like a wonderful friend; I'm sure your friend is overwhelmed with her diagnosis, recovering from major surgery and watching after her five children.

When a person is diagnosed with Her2 positive cancer, it means that the cancer that the doctors found has a genetic alteration that causes the cancer cells to replicate without control. Her2 cancer, especially prior to the use of Herceptin, is considered an agressive form of breast cancer. The plus signs that people use when describing Her2 can be confusing...it indicates the degree to which the cancer tumor had Her2 over-expression. Similarly, people who post on these boards use '+' to express if their cancer had receptors for estrogen or progesterone. When someone says that their cancer was positive for estrogen receptors, it means that their cancer used estrogen as a fuel for growh. Similarly for progesterone receptors.

This links has more about Her2:
http://www.gene.com/gene/products/ed...er2disease.jsp

It sounds as though your friend will get more information next week, and I hope that she is able to get a clear path of action together soon. Typically, the Oncs want to start treatment within 6 weeks of surgery, and if what you've posted holds true, I would expect that your friend is in for some chemo. Also, it is not true that Tamoxifin doesn't work for patients who are Her2+. It may not work as well as for those patients who are Her2-. (I'm Her2+ and presently treated with Tamoxifin).

Best of luck to your friend, and to you too. Please keep posting with your questions. AND please let your friend know that there is a lot of reasons to be hopeful (Herceptin being #1). The hardest part of all of this is just where she is-- trying to figure out the right course of action.

Jen

TAG · 01-05-2006, 07:39 PM

Hi again,

I called my friend and this is what her pathology report reads:

Left Breast Biopsy and Masectomy
Diagnosis: Invasive DCIS 0.3cm
Arising in a background of extensive high nuclear grade DCIS with cancerization lobules and adenosis DCIS extends to margins.
DCIS is positive for ER.

This is a few other things she told me: 3 areas of invasion into the adenosis and a 0.3 cenimeter tumor on a node in the lymphatic system.

This is all she knows, she hasn't received a report on the diagnosis of HER+. She has done alittle research and is interested in having a PET SCAN done. Would anyone suggest her to have the PET scan test?

I hope this information is better to understand!

Thanks,
Toni

AlaskaAngel · 01-05-2006, 07:40 PM

Cheryl gave good advice. I am HER2 +++ and ER+ too. Is it possible that your friend is just scared to do treatment? If not, she needs a new oncologist and waiting is not a good idea.

AlaskaAngel

chrislmelb · 01-06-2006, 04:09 AM

The things you have said are really bizarre. Her onco sounds like an idiot. Maybe you should try to go with her as it is so much to take in. It would be my understanding that she needs chemo and tamoxifen(or AI). Get moving.
Christine

Maryanne · 01-06-2006, 06:28 AM

Toni,

Christine is correct! Any onc not up on the lastest treatments shouldn't be practicing!!!!
Your friend is very lucky she has you, and as difficult as it may seem she shouldnt be waiting a second longer. She may not be the agressive type, but her2 is.

Maryanne

Cindi · 01-06-2006, 07:12 AM

I agree! Show your friend a copy of these posts (from women well versed in dealing with treatment decisions and changing Onc.). She MUST get a second opinion QUICKLY!

To find a doctor for second opinion, Go to http://www.clinicaltrials.gov and type breast, HER2+++ and the state that you live in, in the search area.

Then look over several trials, doesn't matter which, but go directly to the bottom of each selected and look at Doctor names and Hospitals to get ideas on where to go for a second opinion/ Onc.

Perhaps your friend doesn't want to face this "head ON" sometimes we all want to just "wish" it away. But, treatment is DO-ABLE and it's her LIFE that's at stake!

Tell her run, don't walk to the next onc. She CAN do it!

Cindi.

uma · 01-06-2006, 07:17 AM

Toni,
Also check, if the surgically removed Masectomy tissue or lump or flesh, was subjected to FISH test for determining HER2+++. That is normally preserved for future use at Mayo Clinic, if it has been sent to them. If it is lost by the incompetant oncologist and company, there is no way of getting it back for possible future use or FISH test. If the FISH test has not been done and only the less effective IHC test was done to determine HER2, it has to be done . I believe Herceptin treatment for HER2 depends on the FISH test results, without which your friend may get into problems of finding somebody who will give Herceptin.
uma

Bev · 01-06-2006, 07:31 AM

I'm stage 2, well into chemo, and haven't had any pet scans done yet. My understanding is that nothing will likely show up in early stage but I don't know if this holds true with node involvement. Although it's dated, reading Dr. Love's Breast Book may help you put together things you've learned on the internet. Good luck to your friend. Bev

suzan w · 01-06-2006, 11:23 AM

I agree with everything everyone has said...ACTION is the key!!! I had a double mastectomy in June '05, (invasive lobular cancer)node negative, Her2+++ and ER+. I did 4 rounds of AC (Adriamycin/Cytoxan), my onc. did not think any more chemo was necessary (we are in Seattle and she is privvy to lots of trials)(hope she is right!!!). I am now doing herceptin every 3 weeks for a year and 5 years of Arimidex (an aromatase inhibitor) for the ER+. My onc. would not do herceptin without chemo first, although she says that studies are being done to see how that works on early stage bc, Her2+ women. Your friend is indeed lucky to have you to seek out info...hope she has good results!