To treat or not to treat VERY early stage HER2 IDC - Page 3

Becky · 02-25-2011, 11:26 AM

You had a very small tumor, therefore a very small specimen. Can they send what is left to a large, teaching Cancer Center - Sloane Kettering, UCLA, Fox Chase, MD Anderson, Univ of Indiana, Dana Farber

Those guys do these "mundane" tests day in and day out. They look at countless slides and specimens daily and have much less chance of mistakes.

I had a much, much larger tumor than you but I got my surgery locally but the NEXT day arranged for slides to also be sent to Sloane Kettering for a second opinion pathology even though I didn't even have the first pathology report yet.

This is just a consideration.

Lien · 03-02-2011, 09:52 AM

A 2 mm tumor is really very small, but still, it's scary. I agree, you need a second opinion from an oncologist.

I had a 6 mm tumor, clear nodes, and decided on radiation followed by Zoladex to shut my ovaries down and Arimidex. That's 7 years ago. Still doing fine.

My breast surgeon says continuing on Arimidex & Zoladex wouldn't offer me much more benefit. The oncologist I talked to said I could consider having my ovaries removed and continuing on Arimidex for a few years. That would offer me a few percent risk reduction. As my risk - statistically speaking - is already quite low, I decided not to do that. We don't know what estrogen deprivation does to the body in the long run.

The bottom line is, that nobody knows who will recur and who will not. We make decisions that feel best to us at the time we make them. If we could look into the future, it would be easier.

So keep looking for a doc you trust and decide on which treatment is best for you.

hutchibk · 03-02-2011, 05:06 PM

Hi Rebecca -

I agree wholeheartedly with 2-3 opinions from oncologists. If you haven't done them all yet, I would like to recommend Dr. Cliff Hudis at Sloan Kettering. I see him every year at the San Antonio Breast Cancer Symposium and he is a sharp tack. I talked to him this year after a presentation and he was fantastic answering questions for me, etc.

Also, if you are worried about Herceptin treatment for a year... and that it might be "difficult" like chemo, please know that it is very, very tolerable for most people and completely unlike chemo in every way. It doesn't make you sick in any way and you don't lose your hair, etc. It might help for you to know that it comes with little to no side effect.

Best of luck. Let us know what you learn.

musicmama · 03-02-2011, 05:28 PM

Hi Brenda,

Funny you should mention Dr. Cliff Hudis. I just saw him yesterday. He was very clear that he saw absolutely no reason to treat such a small cancer (HER2+ or not). He said that the risk of recurrence is "medically trivial" (not emotionally trivial however) and that the small percentage of benefit that chemo and herceptin would bring would not be enough to justify the risk of heart problems, neuropathy, or other adverse reactions to the chemo.

I'm still trying to settle the voices inside me that want me to do something to keep this thing at bay. Maybe the surgery + Tamoxifen is enough. I don't know.

I'm also waiting for a second opinion on my HER2 status. If that comes back negative I think I'll have a much easier time accepting no treatment.

Thanks to everyone for your input!!!

Rebecca

hutchibk · 03-03-2011, 03:06 PM

Well, yay! You've definitely talked to one of the best in your area!

alicem · 03-03-2011, 03:37 PM

It sounds like you have very good advice. Even if you are HER2+, it sounds like holding off on chemo is the best thing to do. You will probably be very vigilant with your mammograms from here on out. Should you have a local recurrance, you will still have all of your "big guns" in your treatment arsenal. I pray that they are never needed!!!

Wishing you all the best!!

lauri · 03-04-2011, 07:07 PM

Musicmama. I'm new here and have questions of my own but I can share with you what I've done so far.
Diagnosed 6/10 with IDC.
ER/PR+, Her2 +++, BRCA2 + Had a lumpectomy with snb 9/10, no lymphnode involvement and clear margins, .9cm tumor.
Because of the BRCA2 status I had 6 rounds of chemo, TCH and I'm continuing with Herceptin until 10/11.
I was initially scheduled for a bilat mast but my surgeon went out on medical leave so another surgeon did a lumpectomy to get the tumor out and treatments started.
Now, I'm faced with making a decision of radiation or bilat mast.
I hope you get some answers and options you are comfortable with.
Lauri

Lien · 03-05-2011, 02:16 AM

Dear Lauri,

If you are BRCA2 positive, didn't you get counselling? Weren't your options discussed? I think you may need a second opinion. I don't know enough about BRCA to give you any advice, but it seems to me that because of your higher risk of recurrence or new primaries, and perhaps your risk of developing ovarian cancer, you need to talk to someone specializing in BRCA2 positive disease.

Just my thoughts, though.

Jacqueline

feonad · 03-08-2011, 11:53 AM

I would get second opinion and put my mind at ease. I personally am very scared of her2. Doctor said my breast cancer grew independently of each other. He thought. I nave stage 3 cancer though. Very scary. It goes to the brain 30. percent of the time. Ahhhh
But not for stage 1 or 0 I think. Once it goes to my brain the doctor said she couldn't do anything for me. If it goes....

feonad · 03-08-2011, 11:56 AM

The doctor said if iwas bracca positives the ovaries would have to go.

Lien · 03-08-2011, 12:07 PM

Hi Feonad,

Do you have a pathology report you can share with us here? I believe that, now that we have Herceptin available to us, a Her2 positive diagnosis is actually better. Because there is something we can do to inhibit the cancergrowth.

If it is brca 1 or 2 positive, you would be at a higher risk of developing ovarian cancer, so that might be a good option. But I think you get counselling if you turn out to be positive. Or you should be getting that. If they don't offer it, ask for it. This would be a big decision and they should explain the pro's and cons.

Jacqueline

lauri · 03-08-2011, 02:19 PM

Jacqueline, I wasn't told about genetic counseling but looked it up myself. I then called Myrian Labs today, where my BRCA test was done and spoke to a genetic counselor. She said a councelor is usually spoken to before treatment to tell you treatment options. Since I have had treatment already they couldn't really give me any new opinions that I haven't already heard from my onco and surgeon....I was hoping it would be my answer to talk to one...I also have no insurance so I'm limited to what I can do. I have an appointment with both my onco and the radiologist tomorrow. I'm going to drill them the best I can! What the genetic counselor told me, a mastectomy reduces my chances of it coming back by 90% but she didn't know the percentages for radiation. Having my ovaries and falopian tubes removed is a definate, I'm done having babies and it will reduce my chances by 90-95% of ovarian and uterine cancer.
The darn BRCA gene is the one making it so hard! One minute I feel rads are my choice the next I lean toward mastectomy......
She also said a false positive is <1% so they wont retest..
Lauri

carin · 03-08-2011, 06:43 PM

Tough one and great you found this so early!!! Having done it all (mastectomies/chemo/RT and Herceptin) I would choose Herceptin in your case to hope this never comes back (easy to tolerate, very low risk in a young healthy woman like you- most problems with heart are when it is given with anthracyclines) - some oncs are doing just herceptin and Tamoxifen ....or Evista (Raloxifen) may be a good choice too. How nice you have options and enjoy the fact that regardless of what you do you will most likely never know if it mattered and be perfectly fine! Old saying...if you ask three oncologists, you will get four opinions...but get 'em anyway! Good luck to you
C

03-11-2011, 12:01 PM

But, if somebody is her2 ++ (not +++), will herceptin help?