Anxiety stricken by HER2/NEU..help

[Jax]

Hi,

I will get my final pathology this up-coming week but I've been freaking out about this HER2/NEU thing...I've been reading tons and just getting more scared about it. I posted before about this but just had to post again. Right now my stats are:

DCIS (taken out by Lumpectomy, no tumor cuz it was very early pre-cancer)
Grade 3 (aggressive cells)
Clean margins
SNB-negative
ER +
PR-
HER2+ (but awaiting final test results from pathology to confirm)

Am going to get radiation starting in June 06 but I'm so afraid of what they will recommend for hormone therapy.......will it be Tamoxifen and Herceptin or just one of those drugs and I heard so many horror stories, I just don't even want to take any of them.....sounds terrible. (I have heart disease issues on my late father's side of the family and my dad died of a heart attack in 12/04).

Also, does anyone know anything about bioidential hormones....is it really true that loss of estrogen and other natural hormones in our bodies make us just age so much faster and feel terrible and depressed??????

I just wish there was an answer to all this....I mean take away the estrogen cuz of breast cancer but then face the consequences of menopausal symptoms.......sounds like a catch 22 with this dreaded BC disease.

Thanks for listening, I have been so frustrated since Friday and I hate this game of testing and waiting, waiting and waiting espeically for the HER2 test.......feel like I'm on trial for my life, really feel like a POW.

Jax

[Cathya]

Jax;

There is no doubt that this is the most difficult time....the maximum lack of knowledge right at the beginning is so stressful and scarey. However, you will learn to cope and deal with this one day at a time. I take Arimidex and actually I can't say I have any symptoms at all except perhaps a slight increase in my cholesterol. If you are younger and premenapausal you could be prescribed something else. If you have a family history other recommendations could be involved. There are many, many considerations to be made and you have not given us very much information ..... likely as you don't have it. One thing to remember is that your cancer has been caught early.....that is THE most important thing. Go to your appointment and see what recommendations are made. Take your time and learn all you can about your situation....you have the time so take it. Come to this site and repost as you learn more. We are here for you and happy to be so.
Cathy

[eric]

Jax, I understand your fears and concerns but know that the rules regarding Her2 Neu have dramatically changed thanks to herceptin. Regarding your family history of heart disease, check with your doctor but I don't believe that that will have any major relevance. Keep in mind that the % of people effected is relatively small and most tend to bounce right back after a short break. No reason to think that you won't do well.

Eric

[Jax]

Thanks so much for your info you guys. I was latter part of 44 years old and just turning 45 when I got the lumpectomy.

I'll write again when I find out my final deal and then I'll go to the medical oncologist so he can explain it all!! I'll have my husband come with me so he can ask questions too and I know he'll remember the answers!

Warmest regards and thanks for listening,

Jax

[Lani]

from breastcancer.org--and there is more:
Is DCIS Really Cancer?

We generally think of cancer as a type of disease that grows out of control. DCIS, on the other hand, is not an invasive cancer. It stays inside the milk duct of the breast in which it started. It can grow to cover a small or large area of the breast. But it does not spread OUTSIDE the duct into the normal surrounding breast tissue, to the lymph nodes, or to other organs.

Research News:
Most Women with DCIS Do Not Require Sentinel Lymph Node Removal It's uncommon for DCIS to spread to the lymph nodes. Still, the decision about having a lymph node removal procedure for DCIS should be based on the full pathology report from the breast surgery. Read more…

In the staging system that doctors use to classify cancer, DCIS is known as Stage 0. And it is sometimes called "pre-cancer." You may also hear it referred to as Tis, which means that the cancer is non-invasive. Tis stands for "tumor in situ" or "in the same place."

So, is DCIS actually cancer? The answer is yes, because DCIS is an uncontrolled growth of breast cells. On the other hand, it is a cancer that doesn't behave like most cancers. DCIS hasn't started to break through normal tissue, which means it's not life-threatening like cancer. However, DCIS still requires careful medical treatment.

What Type of Treatment Will You Need?

If the area of DCIS is small enough, you will probably be treated with a lumpectomy, which is breast-conserving surgery that removes only the area of the breast containing the cancer. However, if the cancer is large or appears in several places throughout the breast, then breast-removing surgery ( mastectomy ) may be necessary.

Lumpectomy is usually followed by radiation. Radiation to the whole breast is the standard of care. But you might be able to participate in new studies looking at radiation to just part of the breast.

If the DCIS is serious enough to required a mastectomy, you will not receive radiation unless lab tests reveal some remaining cancer in or near the edge of the removed breast tissue.

Hormonal therapy may be recommended to women with DCIS if lab tests show that the cancer cells have hormone receptors. At this time, the only hormonal treatment recommended for women with this kind of DCIS is tamoxifen. This drug is prescribed to lower the risk of the cancer coming back and to reduce the risk of getting a new cancer. Ongoing studies are looking at whether aromatase inhibitors, another form of hormonal therapy, can help women with DCIS.

Chemotherapy is not needed for DCIS, because this type of cancer has not invaded other tissue.

Will You Have to Lose Your Breast—and Will Your Hair Fall Out?

Most women with DCIS do not have to lose their breast. Breast-removing surgery (mastectomy) is only required for DCIS that is large or occurs in several places in the breast.

Chemotherapy is not necessary for women with DCIS. Therefore, you will not lose your hair.

Can the Cancer Come Back Even After Treatment?

When you have had DCIS, you are at higher risk for the cancer coming back or for developing a new breast cancer than a person who has never had breast cancer before. About 25% to 50% of DCIS cases come back as invasive cancer. However, it may be reassuring to know that DCIS itself is NOT invasive.

On the following pages you can learn about:

The Basics of DCIS

Find out what DCIS means, who's at risk, how DCIS is diagnosed, and how serious it is.

Type and Grade of DCIS

Learn about the different grades and patterns of growth in DCIS.

How the Extent of DCIS Affects Treatment Options

The DCIS will be examined to find out areas of involvement, the cancer size, the margins of resection, findings of the post-biopsy radiology testing, and whether there is any bloody nipple discharge.

How the Tumor Characteristics of DCIS Affect Treatment Options

Each tumor has its own set of characteristics, and doctors refer to this as the "personality" of the cancer. The "personality" of DCIS is judged by the cancer grade of dead cells in the tumor, pattern of growth, microinvasion, hormone-receptor status, and how the stage of the disease might change in certain situations.

How Family History and Personal Factors Affect Treatment Options

A family history of breast cancer will also affect your treatment options, as will your access to a radiation oncologist, a reconstructive surgeon, and your own decision-making style.

How DCIS Is Treated

Your doctor will discuss breast-conserving and breast-removing surgery, and possibly radiation—depending on your situation.

Is Breast-conserving or Breast-removing Treatment Right for You?

The decision about whether you need a lumpectomy or mastectomy, with or without radiation, depends mostly on the extent of DCIS in the breast.

Additional Treatment and Follow-up for DCIS

Occasionally, a sentinel lymph node evaluation is useful, even though DCIS rarely spreads beyond the breast. There may be a role for hormonal therapy, to help reduce your risk of breast cancer in the future. You can also find out what you need to know about follow-up care.

The medical expert for DCIS is: Marisa Weiss, M.D., breast radiation oncologist, Thomas Jefferson University Health System, Philadelphia, PA.

Dr. Weiss is a member of the breastcancer.org Professional Advisory Board, including over 60 medical experts in breast cancer-related fields.

Next Page: The Basics of DCIS

DCIS is cancer that has not escaped from the milk duct into the breast tissue itself--therefore it has no way to spread via the blood circulation or lymphatic circulation to other parts of the body. The exception is DCIS with microinvasion which rarely spreads. Have your slides sent for a second pathologic opinion if you want to be sure you don't have microinvastion.

The majority of DCIS is her2+ but it has no way to spread to other parts of the body so surgery and radiation "cure" it.

There are a few people on this board who had DCIS who later went on to Stage IV. This seems to be so rare that most oncologists don't know it happens. We had a discussion about this previously and as I remember it, they had microinvasion.

Radiation does not cause you to go into menopause, lose your hair or vomit.

Count yourself lucky that you caught it early!

Hope this helps!

[Lani]

DCIS is NON invasive. IF the cells haven't crossed the basement membrane (sort of like the fence around your yard) they haven't gotten access to your lymph system or blood circulatory system so it can't spread. That said , there is such a thing as DCIS with microinvasion--those can spread but rarely do. We have a few members who have progressed from DCIS to Stage IV but this is so rare few oncologists even know it happens.

If you do not have microinvasion, do not sweat the her2neu. Most DCIS is her2 positive but is cured by surgery and radiation (there has been a lot of debate about which DCIS needs radiation, but a lot of progress is being made.

Herceptin isn't given for DCIS because it isn't needed for DCIS. Similarly, chemo isn't given for DCIS. Hormonal therapy may be --on a preventative basis. Be sure to have your pathology slides looked at by a second pathologic opinion if you are nervous about microinvasion.

If you do get radiation it does not cause you to go into menopause, lose your hair, vomit or be anything much more than tired.

As most on this site have invasive her2+ breast cancer that needed surgery, radiation, chemo and herceptin you are truly one of the lucky ones who caught it early enough! Count your blessings, stay informed and sit back and smell the roses!

[Jax]

Thank You All For Your Information! It Really Helped Me A Lot And It's So Awesome To Know You All Care So Much About People Like Me Who Write In With Concerns And Questions.

Big ((((hugs)))

Love,

Jax In Fl

[DeborahNC]

Hi Jax,

I had lumpectomy and 33 rads for 3cm ER+ high grade comedo DCIS in Sept. 2003. I refused Tamoxifen.

My docs kept a very close eye on me for two years before DCIS showed up again with a very small (.7 cm) IDC. I had bilateral mastectomy in Sept. 2005, did a few Taxol infusions and will do a year of Herceptin.

My surgeon told me I was in the 5-10% of women for whom the lumpectomy and rads just didn't do the trick the first time.

Recurrence is a major dread, but remember that you have terrific odds with the 90-95% RFS. Try to take some comfort with that and with the fact that you will be regularly monitored for a few years afterwards.

I actually put cancer at the very back of my mind and could even forget about it much of the time (except at mammo time) after I got through radiation.