To treat or not to treat VERY early stage HER2 IDC

musicmama · 02-21-2011, 06:02 AM

Hi everyone,

I spoke with my breast surgeon on Friday about the final path results (post op) and I'm feeling more confused than ever. My original biopsy showed DCIS with an area of IDC (.2cm) Grade 3, ER+/PR+, HER2+. After BMX they found very little invasive cancer left (just a few cells - not enough to run oncotype testing). The surgeon seems to think we got most of it out in the original biopsy. SNB showed 0/5. She seems to think that no further treatment is necessary other than 5 years of Tamoxifen (which I have read my not be helpful with HER2 cancers). She also told me that she assumed if we had been able to run oncotype testing that the results would most likely have been high. Now, don't get me wrong, I love the idea that I might not have to go through chemo and Herceptin treatment, but....this is my life we're talking about here! If this cancer was as aggressive as she says and we had found it a few months later, we would be throwing everything at it, Right? Does it make sense that just because we caught it really early we do nothing???

I will be meeting with the first oncologist tomorrow and I'm trying to get in to see a couple of others with HER2 experience at Sloan Kettering and Mount Sinai in NYC. Although I'm really happy we caught this when we did, I'm feeling panicked about what could happen if I make the wrong decision here.

I welcome your thoughts and any advice on all of this.

Thanks for listening!!

musicmama (Rebecca)

sarah · 02-21-2011, 06:32 AM

Well I was diagnosed with DCIS HER2+++ ER+ and PR+ in 1999; had a mastectomy and was told I was cured but.....it came back invasive in 2003 so....get some good advice from oncologists with HER2 experience.
I asked about herceptin in 99 and was told because it wasn't invasive, it wasn't needed but that protocol has changed and I doubt very much that you won't be given a short series of Herceptin and I would feel more comfortable with that. You don't lose your hair, don't have the extreme fatigue with Herceptin that you have with chemo - it's tolerable unless you have heart issues which they'll check.
ask them about Raloxephene (not sure of spelling) a friend of mine who's not menapausal yet, takes that and has for about 8 years, she didn't like what she'd read about tamoxifen but she's not HER2.
Looks like you're going to get advice from good sources who probably have the best, up to date info.
I can't imagine they won't give you herceptin which personally I think is very important. I'm convinced that if I'd had it in 99, I wouldn't have had a recurrence but...
take care, it's worrying trying to decide what to do
They have a lot more precise tests they can do now - someone like Lani may know more about that
health and happiness
love sarah

Elizabethtx · 02-21-2011, 06:42 AM

Rebecca
You are very fortunate to have found the BC early. I understand your fears in not getting further treatment. My understanding during the initial discussions were that there is no way to remove all breast tissue , even with a Mastectomy. Some tissue remains behind because you must leave fat and tissue attached to the skin for nourishment. This is especially true if you have reconstruction. The idea is that radiation/chemo will take care of any "stray" cells. It seems to me that you are leaving yourself at risk for reoccurrence having no treatment at all. Herceptin is not a one time treatment as many on this board will share. You may have it again if necessary. Hopefully your onco will offer choices that you feel comfortable with.
Be vigilant and research well, as you will make the right choices for you!
Elizabeth

Jackie07 · 02-21-2011, 06:43 AM

Rebecca,

I may have adavocated for having chemo before. But now I am thinking you probably should follow the doctor's order and just take Tamoxifen.

Live your life to the fullest...

Becky · 02-21-2011, 06:49 AM

Dear Rebecca

Get at least 2 opinions from medical oncologists. Ask alot of questions, including - can you take Tamoxifen and Herceptin (for a year). Is chemo also necessary with Herceptin. Ask, ask, ask. If your 2 opinions are different, get a third (by then you will be a question asking pro).

musicmama · 02-21-2011, 06:52 AM

Can you elaborate? Why wouldn't you do chemo?

musicmama · 02-21-2011, 06:55 AM

That last question was for Jackie07 : )

Gerri · 02-21-2011, 07:57 AM

Rebecca,

Surgeons are just that - SURGEONS. You need to get your answers from medical oncologists, preferably breast cancer specialists - if you can get one who is an expert on HER2, all the better.

You are right, this is your LIFE. Take the time you need to seek more than one opinion. Ask questions, and make sure the answers are supported by current research.

Best of luck to you.

Jackie07 · 02-21-2011, 07:59 AM

Just from my personal experience...

It had taken 4 years for the very fast-growing small chunk of cells missed in my first bc surgery (a lumpectomy) to grow into a 2+ cm tumor. The original 1.2 cm tumor was estimated (by my surgeon) to have been growing for 2 1/2 years .

By that time (if it indeed happens) there will be more advanced way of diagnosing/treating the cancer - in my case, Herceptin had become standard treatment. I'm basing this also on the way my brain tumors (life-long Central Neurocytoma - unrelated to BC)have been treated... We watched the three small 'enhanced signals' grow and used Gamma-knife 11 years after my initial craniotomy. After another10 years, there're now new machines/technology that can take care of one of the tumors that's currently causing some allergy-like symptoms and other potential problems. I probably would not have been able to continue my career and cumulate Social Security points had I had radiation tratment immediately following my original brain surgery.

Both chemo and Herceptin carry risks... I wondered what would have happened if I had been given Herceptin in 2003 and got my heart function weakened (as it happened in 2007) before I had to deal with the recurrence...

Tamoxifen is prescribed because of the ER+ component of your tumor. You can not take Tamoxifen while on Herceptin. I think your doctor is practising 'evidence-based' medicine and focus on the part that's known to be in need of treatment/prevention.

NanaJoni · 02-21-2011, 08:41 AM

Musicmama - I was an "early diagnosis", too. Small tumors (two) and no nodes. But my onc threw everything at it - chemo (taxotere, carboplatin, Herceptin). Then I did 33 radiation treatments and will finish my year of Herceptin in May. I honestly feel a lot better than I did a year ago before my diagnosis on March 9. I agree with those on here who say get two or three opinions. Even though I feel great and think I'll get the wonderful "NED" -no evidence of disease - words soon, there is still that nagging doubt sometimes. Cancer doesn't give you second chances. Just be sure to write down all your questions and have someone with you to take notes when you talk to the doctors. And get the 2 or 3 opinions if that's what it takes. Peace of mind is hard to come by after a cancer diagnosis so do whatever it takes to put your fears to rest.

musicmama · 02-21-2011, 08:43 AM

Thanks for your thorough response Jackie! All good things to consider. Sorry to hear you've had such a long hard road. My thoughts and prayers are with you.

02-21-2011, 09:54 AM

I urge you to get more than one opinion from oncologists who deal with breast cancer. There are members of this board who were first diagnosed as Stage 0, did not have Herceptin and were Stage 4 in a few years. You want to be sure you do all you can NOW, not in a few years. Why would you want to risk recurrence just because there may be "more advanced way of diagnosing/treating the cancer" in the future? Makes no sense to me.

BonnieR · 02-21-2011, 10:41 AM

I identify with your situation. Read my stats. Very small tumors, thought to be mostly removed during biopsy. Had bilateral mastectomies. Then the decision looming of what to do next. I got 3 opinions, all different! One at City of Hope said I needed no further treatment. But that just did not feel right. Even if it was based on science! Another said to do the Herceptin and Taxol without Carboplatin. My onc reminded me that even though my cancer was small it was aggressive. I spoke with the ACS who said that my negative sentinal node was the only thing between me and chemo because otherwise TCH was indicated. I was really torn and vascilated for 2 months. I was somehow fearful of Herceptin too (don't ask me why). The bottom line is, I am a person who does alot of "woulda, coulda, shoulda" and second guessing my decisions. I would always be questioning myself. So for not entirely logical reasons, I chose the full enchilada. I felt like it was my first best chance to do everything I could, even if it was overkill. I also recall a social worker asking me "if this was a loved one, what would you want THEM to do?"
Anyway, the point is, you have do make the decision you can live with, based on the best advise you can get from various sources. I can only tell you how I came to making my choice.
As someone said earlier, the more info you gather, the more knowledge. And look for "signs" too. Things presenting themselves that give you moments of clarity. Trust the process.
Keep the faith.

tricia keegan · 02-21-2011, 12:21 PM

I'd also seriously consider more treatment and get another opinion, if it was my decision I would'nt feel comfortable going forward without at at least having herceptin!

musicmama · 02-21-2011, 01:44 PM

Thanks so much for all of your input everyone!! It really helps to know that I have people out there who really get what I'm going through.

Hugs to you all!!

momto3 · 02-21-2011, 02:21 PM

I have seen the term oncotype testing a couple of times. WHat is this?

Jackie07 · 02-21-2011, 02:42 PM

Hopeful posted a couple of links a while back about the Oncotype:

http://her2support.org/vbulletin/sho...light=Oncotype

Jackie07 · 02-21-2011, 03:09 PM

http://www.genomichealth.com/OncotypeDX/Index.aspx

On the above company's website, it does state that the OncotypeDX should be done for tumors that are ER positive and/or PR positive:

"Both the American Society of Clinical Oncology and the National Comprehensive Cancer Network recommend the use of Oncotype DX for patients with node-negative breast cancer that is estrogen-receptor positive and/or progesterone-receptor positive. For complete information on Oncotype DX for Patients & Caregivers, Healthcare Providers, and Managed Care Organizations, visit OncotypeDX.com."

CLTann · 02-21-2011, 05:58 PM

At the risk of being the only minority opinion giver, I just want to share my own situation with you. About 5 years ago, I was in the same situation as you are now. I decided not to get chemo,nor radiation. I opted for Arimidex, later switched to Femera. Everything is going well for me. I am still on Femara, having talked my onc into changing his view on post 5 year decision making process. I always felt that throwing all big guns at the possible residual cancer cells is also a risk. This decision is for each of us to make. I certainly hope you make the right decision. Good luck!

Joan M · 02-21-2011, 06:45 PM

Rebecca,

It seems that since the tumor is under 1 cm, Herceptin may not be recommended, according to the National Cancer Comprehensive Network guidelines. Be aware that many oncologists follow the NCCN guidelines for the treatment of breast cancer. Yet, sometimes a stage 0 tumor can result in a stage 4 cancer even if the probability is low.

Here's a link to the NCCN's breast cancer guidelines (see page 16, especially under tumor size):

http://www.nccn.com/patient-guidelines.html#breast

A second or even sometimes a third opinion is necessary in order to make a decision. Also, survivors differ in their level of anxiety. Some worry more and some worry less about a recurrence or they completely trust their doctor's opinion.

I would agree that the surgeon is not an expert in the area of chemotherapy, but since your biopsy showed Grade 3, she probably feels from experience with path reports that an oncotype DX test could have resulted in a high number.

Joan