I need an idea of what to expect

[KRISS]

Hi Ladies
I need an idea of what to expect. I was told on Friday that I was her2+ and ER+ at 4:30 in the afternoon by my surgeons nurse. Of course he will be out all this week and my appointment is not until late afternoon on the 3rd.
I have invasive ductal carcenoma. They removed a 1.2cm tumor and my entire nipple on the 18th. Margins and nodes clear. Stage 1 grade 2. Before the path came back on her2 and er I was just going to do 6 wks of radiation. But the nurse said with the++ that will all change. Is there anyone out there similar to me that could give me a rough idea of what to expect? I know we are all different but my mind is going crazy with all the scenarios. I can't wait 11 days with no feed back. Any info would be much appreciated. Thanks Kriss
PS sorry on being wordy, I am not up on the lingo and abbreviations. Could somone explain those to me as well?

[CherylS]

Dear Kriss,

We have all been where you are now. You have found a wonderful place for information. When I was diagnosed similar to you on March of 2005 the majority of my information came from the women on this website.

What your nurse has told you is actually good news! I was also stage I, 1.7 cm, ER+, HER2+++, grade 3. Of course being node negative is great news for you. Until they began using Herceptin in early stage breast cancer in May of 2005, being HER2 + made for a worse prognosis for recurrence. Now however, it actually makes for a better one, because you will be receiving Herceptin. The ER + is also very good news, because that means you will receive hormonal therapy which is very effective in preventing recurrence as well. What kind of medication you will be taking for this depends on if you are pre or post menopausal.

Now, this will seem like a bit of bad new, but please take heart, it really isn't that bad. You will have to discuss chemo with your oncologist, as Herceptin is most effective when give initially with a Taxane based chemo for 12 weeks, and then alone for the remainder of a year. Herceptin alone has very few if any side effects and is given every three weeks intraveniously after the initial 12 weekly doses with Taxane. Taxane is a very doable chemo. I felt very good while I was on it. There is now a new way of administering it that they didn't have when I had it which makes it even better. I don't know that you will receive AC chemo now, as just in the past few weeks new findings have been released suggesting it may not be necessary. Other women here will probably weigh in on this too who attended the San Antonio Breast Cancer Symposium just a couple of weeks ago.

You prognosis is very good. Please don't be afraid. I know the waiting is the worst thing ever. It is important that you feel confident in your oncologist. Do you live where there is good care available? It sounds like it so far.

Submit every question whirling around in your head to these wonderful women here. You will see, it will make all the difference in the world.

God Bless,

[CherylS]

PS - No special lingo. Your doing fine.

[BethSh]

I agree with Cheryl. If you do have to have chemo, it will probably be Taxol along with the Hercpetin. I am on treatment #7 out of 12 and am doing quite well. Minimum side effects, little achy, runing nose and tired, but I have not missed a day of work except for treatment afternoon. I was node positive, so I did the A/C first. That wasn't too fun, but got through just fine.

Good luck, you will get through it and it will go fast. I can't believe 6 months have gone by for me already.

Beth

[Hopeful]

Kriss,

Your diagnosis sounds incredibly similar to mine. I was diagnosed with invasive ductal carcimoma (IDC) in June. I had a 1.3 cm tumor removed from just behind my nipple (my breast surgeon said she had enough clearance for margins to be able to leave the nipple, but it was close to the surface of the skin). I am ER+ (80%) and PR+ (50%). My sentinel node biopsy was clear, so I am Stage 1, grade 2. I saw three radiation oncologists and two oncologists to determine my treatment path. I did some research on the % of benefit of chemotherapy for ER+/PR+ strongly positive tumors and chose to decline chemo. I did, however, find an oncologist willing to give me Herceptin without chemo, so I am doing a year of that treatment, plus five years of an aromatase inhibitor (AI) as I was diagnosed post-menopause. I also had 7 weeks of radiation treatments that I did in conjunction with the Herceptin treatment, as Herceptin is supposed to make the radiation treatment more effective. I am also discussing with my oncologist the prospect of adding Tykerb to my treatment regimen, should it be approved by the FDA in the next two months.

From all that I have read both on this board and in the current medical literature, Her2+ breast cancer (bc), especially when diagnosed at an early stage, has a much improved prognosis than it did even 5 years ago. Much research has been done (and continues) on how to treat this particular form of the disease. There are many options and tools available to you for successful treatment. I know it is an agony waiting for your appointment to get additional information, but please take heart that you will hear many positive things when you finally get to see the doctor.

Best of luck to you with your treatment,

Hopeful

[KRISS]

It is so nice to get quick replys. Any info at this point is great. I am premenopausal at 42. I have read some women choose to have ovaries or uterus removed. Is this a good way to go at this stage and with the treatment I may get? Thanks again for helping me get adjusted

[KRISS]

Oh I forgot. I live in Indianapolis and believe we have a great breast center.

[Jean]

Hi Kriss,
Sorry that you were dx. with bc, but you found the best site for
current and accurate information on Her2 bc. In reply to your last question,
you may wish to check on this with Becky since she had this surgery and
is informed. I am er postive 90% and menapausal so I am taking Femara.
I wanted to welcome you and wish you luck with your treatments and to
also let know you have many friends on this site who are here for you.


Hugs,
Jean

[Sbacer]

Hi Kriss,

I lurk a lot post little, but live close to Indy and Dr there. I am Her2 posative, You are on right track by stopping in here. This board is wonderful. I have learned a lot and felt very alone when I first came. I was also DX as IDC, have finished chemo, except 1 yr Herceptin, had surg and now finished 33 radiations. Am now re-cooping and trying to get energy back and trying to work a little.

Take care

Sandy

[CPA]

The reply from CherylS is probably better than the explanation we received when we first learned about Jill's diagnosis. She is also right on about the Anthracycline chemo regimens (AC) and the latest research. Make sure your onc is up to date with the latest.

There are several options for ER+. You can take Tamoxifen. You can take meds to stop estrogen, or you could have surgery (oopherectomy sp?) to remove your ovaries, then take an AI. This decision is maybe not as easy since each option has risks/rewards. You are relatively young at 42 and may not want to completely stop estrogen production becasue of later issues such as osteoporosis and cardiac problems. At the same time, Tamoxifen increases other cancer risks. I am sure that others will weigh in on this.

Good Luck. Keep positive and learn as much about your treatment as possible. Do not be afraid to ask questions and research on your own.

[CherylS]

Kris,
I did have my ovaries out at 44 in order to be able to take the Aromatase Inhibitor. I am one to need to know I have done everything possible. I have a now 14 year old daughter. In fact, I also had a bi-lateral masectomy. These are personal decisions. For me, it was easy because I preferred this to constantly wondering if "that" is another lump. Many people would not have made this decision. I also have had some family history of ovarian cancer and constant cysts, so this factored into my decision also.

One "benefit" of the masectomy was no radiation at stage 1. I also had implant reconstruction and am fine with my new "look" (not much different than the old, a little "perkier").

My sister lives in Indy and works for Eli Lilly. She has had several friends treated for BC, but I'm not sure where. I'm sure you have good care.

I also agree with Jean. Becky is amazing. She knows her stuff. Hopefully she will peak back in here, otherwise you can just direct your question to her when you post.

I hope you are feeling a little better now just having some solid information.
You are going to be fine. One thing also to remember - statistics are all out dated at best. Treatment has changed so much in the past five years, espcially for HER2 + breast cancer that there are no up to date statistics, so don't waste your time searching them. Just stay here. You found the right place for your questions. There are also numerous excellent articles in the articles forum here. Anything you want to know you can probably find there.
This board is professional and sincere. I have found several others that didn't come close.

[CLTann]

Dear Kriss,

Just to show all of us are different and our views on treatments are divergent, I had also the initial stage DICS. However, I refused chemo as well as radiation. That was a decision jointly made by myself and my husband, who has extensive knowledge on cancer. The statistics indicate that the improvement in survival percentage rate from either treatments is only 1 to 3 percent. On the other hand, the damages from the treatment are predicably severe. My onc agreed with our decision. Your case is very much like mine and you are the one to decide what is the best for you. Regardless, you are in the lucky group that your prognosis should be very good. Wish you the best.

[Becky]

Dear Kriss


One thing you can do is to make an appointment with at least 2 medical oncologists. It will take a week or two until they can see you anyway and you will have your own copy of your pathology then (as you will need it for them). There will probably be more than one way to go but you are young and everyone wants you to die an old lady in bed. Because you are young, chemo is in your future.

Many oncologists will want to give you 4 dense doses of AC (Adriamycin and Cytoxan) followed by 12 weekly taxol treatments with Herceptin. After that, you will get either another 40 weekly doses of Herceptin or 14 every three week (triple) doses of Herceptin. New data clearly shows that another chemo regime also works just as well as the AC followed by Taxol/Herceptin. That regime is 6 doses of Taxol/Carboplatin/Herceptin (continuing Herceptin out to a year). This regime has been shown to work just as well (you can site this year's San Antonio breast cancer symposium that took place just 2 weeks ago). This regime is easy on the heart and does not have as much long term side effects as the AC regime. Ask about it during your medical oncology opinion visits.

During the Herceptin only, you will have radiation if you did not get a masectomy. Some women get radiation even if they did have a masectomy if they had alot of positive nodes (you did not and that's really good) or if their tumor was very close to the chest wall (which yours was not). After chemo and radiation is done, you continue the Herceptin and add an (anti) hormonal (since your cancer is ER+ - make sure to ask if your tumor is also PR(progesterone) positive and how much you are positive strong or weak). There are many schools of thought on how to pick what kind of anti hormonal to go on. You should probably wait to look into those options as it will be 6 months from now (at least) before you have to decide on what to do. There are differences on how strongly positive you are, if you are both ER and PR positive etc. If you are still premenopausal or not. You can have a discussion with us on that later. It is best to tackle one thing at a time and the first thing is to find yourself a medical oncologist (and in a couple of months, a radiation oncologist).

We are here for you and can answer all your questions.

PS - I did have my ovaries removed last year (at age 46) but I was weakly ER+ and I was PR negative therefore, the common premenstrual antihormonal is known not to work well (if at all) in someone with that kind of pathology. I wanted to be postmenopausal to take an aromatase inhibitor which works better in general and best for someone with my pathology (namely - if only one of the hormone receptors is positive and not strong positive).

I know it is very overwhelming at first but you can do it.

[Bev]

Hi Kris,

Try searching in the purple tool bar above for tamoxifen vs AI's. I can't speak from any sort of scientific authourity, but I wouldn't think you would have to rush your decision. There are studies that show that many women do well taking tamox for 1 to 3 years, then switching to an AI. My thought is I'd like to see another year or 2 of data accumulate. It's also the choice between side effects. Uterine cancer or osteoporosis? It's also about being slammed into menopause or nudged. See what your onc says. Good Luck, BB

[CherylS]

Kriss,

Thought you might like to read this article. It demonstrates the amazing effectiveness of Herceptin against HER2 breast cancer as well as some other important information about treatment.

http://www.komen.org/intradoc-cgi/id...ue&cc_id=38784