moved from welcome

[Joanne S]

I copied this post from Newcomers Club/Welcome Wagon to HER2 to get more attention.
JO
copies from: http://her2support.org/vbulletin/showthread.php?p=157021#post157021
what to do? from lizm100

Hi everyone, I hope you don't mind if I add in my story as to I'm confused about what to do. I'm 38, mom of 3 young children, with no history of BC in my family and was recently diagnosed with DCIS with a focus of less than 1mm of microinvasion. I have been told by several oncologists that this tiny microinvasion could have been easily missed by another pathologist as commonly is. My cells were high grade with comedo necrosis, Er-,Pr-, Her2 3+. Sentinel node was negative. I had lumpectomy with re-excision in Feb. 08'.

I have been told by 6 oncologists that 33 sessions of radiation is plenty treatment for me. One oncologist who I just saw is not sure how to treat me but is leaning towards the radiation also. She has conferred with 2 major cancer centers & they recommend only radiation as well. All the oncologists feel that the benefits of chemo and Herceptin do not outweigh the risks. We have discussed Herceptin only but can't find any trials/studies that support the benefits of using only Herceptin alone, especially on such a tiny microinvasion.

Has anyone or does anyone know of someone who has been in a similar situation and how they were treated. Any advice would be appreciated.

Thank you,
Liz

[Sheila]

Liz
First of all this is a very personal decision, but it seems with the makeup of your tumor, hitting it with everything would be your best bet. Chemo was rarely given for DCIS in the past, then many of these women recurred....did they miss an infiltrating component as in your case? No one knows, but I dod know that there have been some "DCIS" only women on this board who have become Stage IV metastatic very quickly...it shouldn't have occurred, but I wouldn't take the chance. I look at the difference Herceptin could have made for me, but 6 years ago it was only available for metastatic BC. I would get as many opinions as you can....from reputable Oncologists who deal with breast cancer only...it is your life!

[Jean]

Liz,
Sheila offers very insightful advice. I also sent you a PM.. I wanted to add that since you are er- you do not have the advantage of taking a hormonal adjuvant therapy. At the very least
herceptin should be a consideraton. Data is not available
yet, as early stagers /and/herceptin is too recent. Early stagers and
chemo/herceptin also does not have data available yet. There are a
few who have decided to not have chemo. Yes it is a personal decision that needs to be made with as much information and not fear.
For me I was more concerned with Her2 than the meds. Most people who are healthy to start out with, eg: heart healthy, no other major diseases,
do well, there are always side effects from meds, for the most part herceptin is not a difficult treatment.

We are all here to support you on your journey.
Kind Regards,
jean

[SoCalGal]

Hi Liz-
I was also 38 when diagnosed - I just celebrated my 50th birthday. My kids were also young then and both are in college - something I never thought I'd see.

Treatment options are overwhelming. It is difficult to be diagnosed with a life threatening disease and then be expected to participate in decisions that our doctors have spent years in training in preparation for these decisions.

When I was trying to decide about chemo a doctor once said to me that they would always have chemo for me if I should need it and that he "felt" I should wait. That answer fit for me at the time.

It sounds like you are being told to "just" do radiation. That IS effective in "cleaning" up the area and you should be cured!

Once you decided I hope that you are able to stay focused on your decision and enjoy your kids and your life. I certainly did. Stay out of cancer-world as much as you can and "act as if" all is well. Makes for a much better QOL.
Best to you-
Flori

[MJo]

Hmmm. The doctors can't give you a 100% assurance that no cancer cells are somewhere in your body. Even if the odds are 97% that you won't recur, someone is in the 3%. How much risk are you comfortable with? You have one shot at being cured. That's now. If it recurs, you have to live with it. I don't know what kind of insurance you have, but if they will cover Herceptin, I'd at least consider it.