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 +

Petesmom · 08-27-2006, 07:48 AM

I was diagnosed with a recurrence last year, 7mm tumor, ER/PR+ and HER2+, no nodes. I had a mast and was put on Tamox. I was 52 at the time still premeno and opted to have my ovaries removed so that I could take an AI. My onc did not want me to have chemo as he felt that the risks outweighed the benefits. Like CLTann, ladies like us may be in the minority. I was comfortable with my onc's decision and still am. You have to do what is right for you.

Petesmom

SusanV · 08-27-2006, 04:12 PM

Pete's mom,

I am sorry to her about the recurrance. Stay strong, and it sounds like you are very on top of your treatment. Which is the best place to be. I am hoping to be a little more on top of mine tomorrow morning.

Sincere Best wishes and loving thoughts to you

Susan V

CLTann · 08-27-2006, 05:19 PM

Best of luck, SusanV. Just a word of caution: aggressive treatment is not necessarily the best treatment. Patients in your group mostly do not need any chemo treatment but the medical panel always advocate chemo for two primary reasons: not to get sued and more monetary gain. Please go read the flaxseed posting and take an objective look at all options. There is also articles about the cancer spread caused by biopsy that make us wonder. Why are the medical people insist on doing biopsy while knowing the obvious risk of secondary tumor that will likely occur to the patients. In China, a palpable breast tumor is operated on without biopsy first and the biopsy is done while the patient is still on the operating table.

In the final analysis, one has to make up her own mind on how she wants to be treated. I sincerely wish you the best.

Ann

astrid · 09-02-2006, 04:07 PM

I am also triple positive with no node involvement. I am still scared because as I have said before, my sister was ER+ PR+ and had no node involvement and died 2 ½ years after diagnosis so it can travel into the blood stream. She was only 38 and her cancer was very aggressive and they did not have Herceptin at the time. I do not remember what grade her tumor was, but I assume it was grade 3. I am grade 3 also.

With my family history, young age (47) and tumor grade and size, two ONCs recommended Chemo. I entered a clinical trial for node negative women. This clinical trial compared AC and T as stand alone drugs. The standard treatment for node negative women with tumors greater than 1.5 CM (mine was 1.8 cm) is 4 rounds of AC followed by 4 rounds of Taxol administered every three weeks. Herceptin can be give at the same time as Taxol, but it can also be administered after chemo and radiation. Hercepetin should never be given with AC. AC and Herceptin are both extremely hard on your heart. Anyway, the arm of the clinical trial that I entered was Taxol as a standalone drug administered every 2 week for 6 rounds. I than had the usual 35 radiation treatments and then began and am still going through my year of Herceptin (started mid June) and I am on Tamoxifen.

I also was skeptical about chemo because of my sister, but the studies show that women treated with chemo have a much better success rate for DFS than women who do not take chemo. The positive results are NOT in the first five years. The rates of DFS double at 15 years. I want to be around for 15 more years so I was willing to take the chemo and maybe I was lucky with Taxol only, but I feel great and felt pretty good though out my chemo. I have NOT lost my libido and I was very worried about that. In fact now that I eat better and exercise better, I feel better than before my diagnosis and I love my 1 inch curly hair. It is sooo easy.

AlaskaAngel · 09-03-2006, 12:55 PM

I don't think this discussion has to be one that separates people into just 2 sides of a sensitive issue, black and white, and I hope that it isn't offensive to raise very real questions about who benefits and who doesn't from adding chemo.

I wish that none of us had to make these awful choices.

I don't want to lose sight of the information that tells us that trastuzumab is more effective when chemotherapy is added to it. That is a weapon we didn't have before, and should be used for those who are most likely to benefit from it.

But because both the AI's and Herceptin were not commonly available even just 5 years ago I have to ask whether statistics about 5 years ago or 15 years ago showing a success rate for DFS are meaningful for women with HER2 positive HR positive bc, particularly those who are 50 or over.

In addition, as I see it there is one other huge difference for those in this group who are currently diagnosed. They stand to have the choice of using even newer drugs, newer methods of individualized analysis of their particular disease characteristics, and newer and better ways of analyzing whether they remain NED.

To me those things are a really, really big deal.

AlaskaAngel

Becky · 09-03-2006, 05:14 PM

Maybe this is a chat room topic???????????? Let me know. I love the interesting ones that have more than just one opinion.

AA knows me well. (I miss you)

Hugs and kisses

Becky

AlaskaAngel · 09-04-2006, 12:59 PM

Hi Becky,

I think the chats are great for opening our heads to wider perspectives, especially since there is so much information out there that it is hard to see everything on our own. I've missed them but am grateful that they will continue. This topic is one that probably does need some experienced moderation, whether discussed on its own or as a subtopic of one of the broader ones suggested.

I'm still hoping we can get some Aussies online for some chats and hear more about how things are going with them... and VERY saddened to hear about our loss of the croc hunter and environmentalist.

AlaskaAngel