Ladies, I'am recently dx , and I'am her2neu+++.Does this mean that it is likely that regardless of tx I will have a reoccurance?Everything that I seem to find on her2 points to a very prognosis.I would love to hear from some of you who are expierienced with this.
Michelle

HI Michelle

Im sorry to hear about your recent diagnosis. Dont worry about all that you read. It is true that HEr2 is a more aggressive form of breast cancer, but i have seen ladies who have gone on for years and years.

I myself was diagnosed last May with HER2 +++. I had 1 small tumour plus one node in the axilla that was positive. Had six months of chemo then rads. In Jan this year discovered 3 more nodes, had them out, then started on herceptin and taxotere. Just this week, found yet more nodes!! we are going to radiate them.

I just want you to know that there are so many solutions and different drugs out there at the moment and these clever doctors just keep finding more cures.

You are probably feeling worried and confused right now but it will get better. And dont forget that us with HER2 now have HErceptin. Im not sure that this will be recommended for you as a first line treatment, but at least you know it is there if you need it.

take care and be assured that this too will pass.

gill

Hi Michelle

I am er & pr negative and HER2 positive although I didn't know that back in 97 and it was 5 1/2 years later that mine returned in Oct.2002 I am on xeloda at the moment as herceptin may have caused problems with my heart but I may go back on it in the future, at this moment in time I am feeling fine not much problems with side effects.

As Gill said don't worry too much about what you read, everyone is different and yours might never come back nobody really knows for sure.

Love Marjorie (Worksop UK)

This is from Dr. Susan Loves website:

HER2/NEU and Herceptin
My tumor was Her2/Neu positive. Does that mean my chance of recurrence is much greater?

Not necessarily. While it’s true that some early studies found that women with HER-2/neu+ tumors had a higher rate of recurrence, other studies haven’t found that to be the case. The reason for the discrepancy seems to be that HER 2/neu alone doesn’t mean much. We have to consider a lot of other factors as well.

First, HER2/neu is still an enigma. It is present in most DCIS -- precancerous breast disease -- but is present in only 15%-30% of frank cancers. Since DCIS usually doesn't progress to invasive cancer, it may be telling the cells to grow, but not necessarily to invade other tissues -- a condition for malignancy. This may mean that it probably needs other factors to become malignant.

Second, it matters whether HER2/neu is actually doing something or if it is just sitting there in the cancer cell. When HER2/neu is working, it acts as a receptor for growth factors. When a growth factor attaches to HER2/neu, signals go out that tell the cell to grow and divide. There is now an investigative test that can tell whether HER2/neu is active or inactive. Early studies indicate that inactive HER2/neu don’t have much effect on a woman’s prognosis, but that active receptors indicate more aggressive tumors.

Third, HER2/neu probably doesn’t act alone. Like most cellular criminals it does the most damage in collusion with other molecular bad guys. Some studies have found that HER2/neu may not cause much trouble unless other proteins such as epidermal growth factor receptor are also present.

Fourth, the likelihood of recurrence depends on the type of treatment. Overall, the studies suggest that HER2/neu signals a worse prognosis primarily in women who have node-positive disease and that women who overexpress HER2/neu may do better when chemotherapy includes doxorubicin (Adriamycin). The significance of HER2/neu in women who have node-negative disease isn’t as clear because fewer have HER2/neu positive tumors.

Unfortunately, the final word on the meaning of HER2/neu isn’t in. Although some oncologists may decide to treat HER2/neu tumors more aggressively – either by giving chemotherapy to women who are node negative or by substituting CAF for CMF treatment for women with positive nodes – there is no conclusive evidence that doing so will prevent a recurrence.

The question remains: Given the uncertain meaning of HER2/neu, is there any value in testing for it? I think there is. Herceptin is now approved for women with metastatic disease who have HER2/neu+ tumors, and a study is in progress to determine whether women newly diagnosed with HER2/neu+ breast cancer can also benefit from this drug. The more tumors that are tested, the more information we will have on HER2/neu and the outcomes of women with HER2/neu + tumors.

Hi Michelle, I am 4 1/2 years out from my initial dx (even without Herceptin) and doing fine. There are plenty of us out here. Truth is that no one knows why some have it return and others don't. All you can do now is try to get on a Herceptin protocol, have faith and eat smart. If your wondering what eat smart means, that is really based on what you feel is right for you. If you asked 20 people on this board about diet, they would probably give you 20 different ideas. To me it means 4 things: reduce to an occasional treat-junk food including soda, take/eat the right oils (olive, flax, coconut, fish in summer/cod liver in winter), watch your glucose levels like a diabetic and eat items that this board has discussed that have been proven to inhibit HER2 or cancer in general. If you want to email... feel free to do so.

Kathy

In addition to eating right, exercising and maintaining a good body weight, do "you," any of you, worry about the type of deodorizer, anti-perspirant you use?
Janet/FL

Thanks to everyone for thier replies.I'am definately going to check on a healthier diet.I'am in good shape at this point , and would like to stay that way. I have a toddler so that helps.Doing chemo, and chasing him all day is a chore!!! Good thing because the steroids make me hungry.
I'm glad to hear everyone is doing well at this time.
Michelle

Hi Michelle,
Welcome. I know how you feel. Everything you read about Her2 is v.scary. But the reality is that nobody knows what is a better cancer or not. It behaves differently in different people. With Herceptin given early, I think that Her2 is much less scary. Try to limit what you read, especially some websites are less Her2 friendly. This is a great site, because all these people have a lot of knowledge and have fought many ups and downs. Think positive. You will get over this and look into some natural supplements when you are done with your chemo as well as a change in lifestyle.

Take care,
Anne

I've read several reliable things (although can't cite references--sorry) that the thing about deoderant was an urban myth and there's absolutely no evidence of it being harmful.

The exception would be a deoderant that included toxins, but I don't know of any that do--per se. If you want to be double careful, you can always use a deoderant that has natural ingredients.

Personally, I'd focus much more on diet and exercise than personal care products, from everything I've heard and read.

Michelle, I received your note.... send me something again through this site and give me your email address. That way I can write you directly.
Kathy