Stage I ER/PR+ Her 2+ No node involvement

SusanV · 08-24-2006, 12:23 PM

Just wondering if anyone in the group meets similar criteria ? I am meeting with the oncologist on Monday the 28th, and I just wondered what therapies you all have received.

I am hoping for chemo, herceptin, tomoxofin and some anti-hormone therapy and radiation

Funny the things I am "hoping" for now are dramatically different than my hopes prior to my dx on August 3rd. I used to hope for things like no rain or a good hair day....What a difference a day makes !

Susan V
PA
DX Aug 3, 2006 Age 37
Stage 1
ER/PR +
Node negative

Montana · 08-24-2006, 02:24 PM

Hi Susan,

I am also Stage 1, no nodes, Her2+++, Er/Pr+, had lumpy, A/C chemo, and 33 rads. I'm on Arimidex for another 4 years. Did not have Herceptin because I fell into the "cracks" as I finished chemo in spring, 2005. My onc was not giving it then because of the node negative status. Things have changed since then. You'll find lots of help on this site. Welcome.

MJo · 08-25-2006, 07:08 AM

I was stage 1 with a .55 cm tumor, er/pr pos.,no nodes involved, and Her2++. Diagnosed late October 2005.

I took the Oncotype DX test and am now on my third appeal to my insurance company to pay for it. It's expensive $3400, but I recommend it. Many insurance companies pay.

The oncotype score gave me a 21.5% chance of recurrence within 10 years if I took only radiation and hormone blockers (arimidex). I decided to treat the cancer aggressively -- 4 dose dense adriamycin/cytoxan, 4 dose dense Taxol, One year herceptin, 33 radiation treatments and 4 years of arimidex.

I go to a cancer center for treatment. My oncologist is considered "aggressive."

The timing of my diagnosis was interesting -- I witnessed a sea change in attitude toward Her2 cancers. After the lumpectomy, the surgeon told me he doubted I'd need chemo. I was set up with an appointment with a radiation oncologist who wanted to start radiation immediately. The chemo oncologist intervened. Three months later I went for a follow-up with my surgeon and he said he was glad I was taking chemo. In the future, perhaps new advances in testing will spare some of us Her2s such aggressive treatment, but I saw the pendulum swing from surgery, radiation and hormone pills only for Stage 1 Her2+ to full treatment.

CherylS · 08-25-2006, 07:53 AM

Susan - You are on the right track with aggressive treatment. I was dx similar to you too. I had AC, Taxol + herceptin, herceptin for one year ( I was one of the first in this "new wave" of thought) and had my ovaries out so that I could take Arimidex. Like all of us, I never want to do this again, so I also opted for a bilateral masectomy with reconstruction. That is a personal choice, but I needed to know I had done all I could. Tamoxifen is hormonal treatment for premenopausal women, arimidex for postmenopausal.

Yes, so true. We never know what tomorrow will bring, do we? Hang in there, you will never be the same, and it can be an improvement!

mts · 08-25-2006, 08:13 AM

My dx is the same as yours (at 41) -although you did not mention the size of your tumor. Lately I have noticed that some oncs are just providing Herceptin for Stage I women with tumors < 1cm.

I did dose dense AC+T+Herceptin, and currently take Tamoxifen for my minimally 10% positive ER/-PR status.

As you have probably read by now, Herceptin is the wonder drug for HER2+ women. Remember that the molecules in the Herceptin do not penetrate the blood-brain-barrier (BBB) which is why I still think its important to get the chemo (you never know if an errant cancer cell wants to set up shop up there!).

There is also Tykerb that is the next monoclonal antibody similar to Herceptin that does penetrate the BBB but is not available to Stage I women.

I started Herceptin when it became known that it benefited later Stage b.c.'s and thank goodness I got it around the same time I had my taxol. Who knows where Tykerb will be as you go through your treatments.

Chemo will throw you into menopause were as Herceptin will not, but its still a year of Herceptin according to the majority of oncs. There are some that only give it for 3 months!. Solid data to confirm how effective Herceptin is in Stage I cancers is still to be known regarding recurrences.

If the big guns are what you are after- chemo is the way to go along with radiation (if you had a lumpectomy)...

You will find this site to be extremely helpful. There are many wise souls here that have been through it all and their advice is immeasurable.
Please come back and post again on what you decide...

Warmly,
Maria (MTS)

SusanV · 08-25-2006, 08:36 AM

My tumor size was 1.3cm. I spoke to a nurse in my surgeons office, and asked if I wanted a mastectomy that the surgeon does not deem "medically necessary" am I still able to get one...she said yes, but be prepared to do a lot of convincing to the surgeon. She also said to think it over wait a year and if I still want it to do it then. My thought was to just to eliminate this as a possibility. I know I have to deal with it coming back in places like liver, bone, brain etc...but I thought with a mastectomy I could eliminate this site from the list

I would love to get the test to determine the odds of recurrance. I have done some limited reading about CTC (circulating tumor cells) I am going to ask about this on Monday. I will post to let you know what they tell me.

I so appreciate all of you and the information and support that you provide.
Susan V
Dx age 37
8-3-06
1.3 cm Stage I No node involvement
ER/PR +
Her 2 +

Marlys · 08-25-2006, 09:11 AM

Susan,
I, too, am like you. Dx 3/9/05, IDC, high grade tumor, 1.5cm, HER2+++, ER+++, PR+, Stage 1. Lumpectomy 4/13 and repeat for wider margins 4/25 with negative sentinel node biopsy. I am a retired operating room nurse. When they told me that there was no difference in outcome with lumpectomy versus mastectomy I was elated. I am not all that fond of my boobs but I hate pain and I have seen what we do to women when we do a mastectomy.
Anyway, I had A/C x4, rads x30, and Herceptin every 3 weeks for a year. I finished my year on July 11. I started on Arimidex when I finished rads. I lost 30 pounds with chemo and have kept it off through excercise and a better diet that I learned about on this site. I started taking CoEnzyme Q10 and walking and my MUGA actually improved to the point that my onc quit ordering the scans.
I found this site in October and am so grateful for it. I am in better health than I was when I was diagnosed. I realize that there is no cure for this disease but I like "no evidence of disease" just fine.
I have noticed that different centers treat patients differently but I have great trust in my oncolgists and have not had any concerns that they have not addressed to my satisfaction.
Welcome to this site and hang in there.
Love, Marlys

mts · 08-25-2006, 10:48 AM

SusanV,

I did not know the ramifications of Her2 until I was well into my radiation treatment. I think I would have opted for mastectomy then if I was as informed as I am now. I also have very dense breasts which make the mammogram quite useless and the ultrasound almost as useless for me. I have to get a breast MR every year along with the mammo and u.s. anyway.

What I am trying to say is that if you do have dense breasts, be sure to consider whether or not you will want to deal with breasts at all. Yes, the surgery is tremendous but do-able. Cosmetic surgery is better if you have never had radiation on the affected breast...

So, you see how personal your decision becomes. I am very happy with my irradiated breast (looks perky). I had a lift on the unaffected breast and now they both look the same. I know my vanity is showing through - but as long as I am willing to get the necessary imaging I am good with my decision. I actually go to UPenn for my imaging... wonderful place and one of the best in terms of their innovative technology. Fortunately I have a good cancer policy that pays my airfare!

I see you are from Pennsylvania, what part?

Maria (MTS)

KathyH · 08-25-2006, 10:57 AM

Hi Susan,

One question it might be reasonable to ask your onc or surgeon to help make your decision is about risk of getting bc again. Given a diagnosis of bc your risk for having it again in the future may not be the same as the general population. That information might be helpful.

Love, Kathy

SusanV · 08-25-2006, 11:14 AM

Hey guys,

I live in Pittsburgh PA, and am currently getting all of my care at Magee Womens Hospital here in Pittsburgh. Since many of our dx are the stage 1 no lymph nodes, are are chances even slightly better for no recurrance, than if we had lymph node involvement? Do you guys have any stats on that?

I would like to get aggressive care...whatever that may mean. At this point my main focus is on life preservation...as many more years that I can get...Same thing you all want I am sure. I could not do this without you guys, that is a FACT.

Sincere Love to all of you, my new friends

Susan V
Pittsburgh, PA
Dx 8-3-06 Age 37
Lumpectomy 8-15-06
1.3cd Tumor
Her 2 + er/pr +

Dianaq · 08-25-2006, 06:11 PM

Susan,
I am not sure that I have heard enough data on her2+, node neg. clear margins to make my decision about chemo yet. All of the data my ong. showed me was breast cancer that was not her2+, because they don't have enough data or know if the chemo has any benifit on her2+ cancers. Do you or anyone have anymore info on this?

CLTann · 08-25-2006, 08:03 PM

I am 60 years old, classified as Stage 1, triple positive, less than 1 cm. IDC. No nodes involvement. I opted for mastec. No chemo. No radiation. Now on Arimidex. I guess I am one of the minorities who don't believe aggressive treatment is always a better treatment method. I saw enough patients who had more complications from chemo and radiation. My dx was exactly one year ago.

Ann

Dianaq · 08-25-2006, 08:11 PM

Thank you Ann,
Even though I am only 50 (lol) my ong. thinks that because my tumor was her2+++, grade 2 node neg. clear margins. The only reason she suggest I go though chemo is because of my age. I have not seen enough data to know that it would really help. I keep hearing of people that have been stg. 0-1 and had chemo but it came back. That is not real convincing to me. My gut feeling is not to go with chemo. But maybe I just dont know enough. I have been trying to read all the studies, but most are with her2-.

SusanV · 08-25-2006, 08:28 PM

My surgeon has an analogy for invasive breast cancer...It goes a little something like this... Once the cancer has had the opportunity to become invasive, it is just like a horse that has been let out of the barn. You just do not know what path it has taken. In addition, I have been told to think of the breast cancer travelling to a fork in the road. One direction is to the lymph nodes, and the other to the blood stream. We all know that we had the nodes tested, and in some cases (like Mine) the nodes were negative. It is then likely (not 100%) that the cancer did not go to the other fork in the road or the blood stream. But because they can't be certain, they recommed chemo to get rid of any cells that may have traveled that direction.

More love to all of you
Susan V

Bev · 08-25-2006, 08:55 PM

Susan, the fact that you are so young would make me want to get aggressive. Doing the oncotype test makes sense based on node status, but I don't remember. I'm 47 and stage 2, node neg, but the docs tend to get aggressive if you have some years in front of you. Sorry about the diagnosis. Take it one day at a time. If a wimp like me can do it, anyone can. Bev

Jean · 08-26-2006, 11:54 AM

Susan,

Sorry to hear that you have been dx with this dreadfull disease.
The decision to treat with chemo is very difficult for some and yet easy for others. I will say that we are all different and the disease does effect each one based on their own personal chemistry. I believe that I cannot trust the decsion based on nodes alone. Yes, your dr. is wise to educate you that the blood stream is a path for the t-cells to travel and her2 does like to travel.
If my history helps here it goes:
Had a small tumor - after lumpectomy 3mm - er-postive pr negative , node negative. Stage 1 grade 1 dr. all advised radiation and Arimidex which I did have treatment of 32 radiation trts. and also Arimidex. I did not feel
comfortable and I did have the Oncotype test done. Came back off off the charts - scored a total of 46 with a 31% chance of recurrance which translate to a high risk catagory. Onc. here changed his opinion. I decided to see Dr. Slamon who ran the TOPO 11 test. TOPO 11 came back negative.
His advised TCH...Dr. Slamon was strongly for chemo along with the herceptin. You are young and have many wonderful years ahead of you.
I opted for an aggressive treatment no matter what my age. I am 55 yrs old.
I have just completed my 5th treatment of TCH - Sept. 11 will be my 6th and final chemo - It is always your own choice but I do not regret my choice.
I had to fight hard as a early stager - I truly in my heart believe that the future treatment will change in regards to early stagers. The approach of tumor size will NOT be the main factor. What was your KI-67 levels?
that is very important. Susan I wish you strength in your decision and please let us know what you do decide, this is a wonderful site with many wonderful women who share great wisdom - this diesease can and will be beaten due to our joint efforts......

God Bless,
Jean

Dianaq · 08-26-2006, 12:00 PM

Jean,
Is the onco score on the pathlogy report?

Jean · 08-26-2006, 12:41 PM

Dianaq,

The Oncotype DX test is a test on the tissue of your tumor that was removed.
You have a tissue sample via slide sent to genomic health in Calif. They do the test is cost $3,400 this was covered by my insurance company.

here is the link www.genomichealth.com

What is found on your path report is your KI-67 level, mine was high 40%
Dr. Slamon believes this is a very important feature. He felt since mine was so
high I did not even need the Oncotype test with KI-67 levels that high.

I am still glad I did the test to confirm my status.

Hope this helps if you need any other info just reach out to me.

Good Luck
Jean

Dianaq · 08-26-2006, 07:52 PM

Susan,
I just read a study that said, chemo was more of a benefit for her2- patients. It also stated that for women with her2+, node neg. pre-men. that herceptin along with ovarian ablation and not chemo works better or as well as patients with her2- and chem. I am going to ask my ong. about this.

BEVIE · 08-26-2006, 09:55 PM

Hi Susan and triple positive ladies,
I was ER+ PR+ HER2++ postive tumor was 1 1/2 cm nod. negative dx almost 6yrs ago and still NED. I had a lumectomy and 2 cmf chemos before HER2 results were in and then my Onc switched me to 4 A/C chemo's and 28 rad. I took Tamoxifen for 9 months and then swithced to Arimidex just under 4 yrs. I have had a few scares which that weren't anything and a PET scan done in June that was clear. I too wonder if triple positive node neg. have less chance for recurrence or maybe it was the chemo and Arimidex? I am glad that I did the chemo I was 49 at the time and for me the peace of mind out weighs the side effects.
But if they would of had the Oncotype DX test 6 yrs ago I would had it.
My Best To You,
Bevie