Newly diagnosed and totally confused

Gamma Lu · 09-12-2008, 10:52 AM

I was recently diagnosed with stage 1 breast cancer with no lymph node involvement and my hormone levels were fine. However, I was also diagnosed with Her2. Because of the 18% chance of re-occurance my oncologist suggested chemo treatments to bring it down to 10% or less. So many of you talk of herceptin treatments, however I feel overwhelmed worrying about chemo side effects let along herceptin side effects. Is herceptin always necessary and I would really like to hear from survivors that are leading long, productive lives because all I hear about is doom and gloom concerning Her 2.

Alice · 09-12-2008, 11:16 AM

Hi,
It certainly can be very confusing. I can't speak to what to do in the case of stage 1 since I was stage 3 and chemo for me was imperative. All I can say is that herceptin has made a substansial difference in treatment and survival for those that have her2. What kind of chemo is the Dr. suggesting? If he is looking at herceptin alone it is very doable. Many would suggest getting a second opinion. I think it depends on how comfortable you are with your onc. You stated that your hormone levels were ok. Does that mean your tumor is hormone negative. Also how agressive is your tumor? You should have a Richardson/ bloom rating of 0 thru 3. All of this information is vital in making such decisions. I hope I didn't just confuse you more. Let us know what you decide. There are many on this site that have a lot of knowledge and will be very helpful
Alice

Marlys · 09-12-2008, 11:20 AM

Welcome to this site! I found it after I had already been through chemo and wish I had found it sooner just for the support. I, too, was stage 1, HER 2+++, ER+++, & PR+. I have come to really care about the people I have met here. I am a retired nurse but was not up to date on oncology and the people here were a tremendous support. hope you do as well as I have.
Love & hugs,
Marlys

caya · 09-12-2008, 11:22 AM

Hello Gamma Lu,

Welcome to our board, if you have HER2+ BC this is the best place to be. You will find lots of information here.

Herceptin is basically the magic potion for Her2+ - especially as you are at stage 1, with no node involvement, same as me. In the "olden days",Her2+ BC was considered "more aggressive" and had a "poorer prognosis." This was before Hercpetin, and also before the addition of the Taxane chemos - taxol and taxotere. Most of the statisitics you will read about Her2+ are before these treatments - Herceptin was only approved for early stage BC in the States in Nov. 2006 - not even 2 years ago.

Most oncs. recommend chemo/Herceptin for Her 2+ BC because Her 2+ is sneaky - and you will want to fight the beast with everything you've got. Chemo is very doable, and Herceptin is a "walk in the park" compared to it. I would get a second opinion from an oncologist who specializes in breast cancer, if you can. Most of them are on top of the latest treatments and stats for Her2+.

I'm nearly 2 years out - I'm sure many others who have been out for many years will chime in to reassure you.

all the best
caya

DanaRT · 09-12-2008, 11:49 AM

Dear Gamma Lu,

From what I can tell from your post your dx is much like mine. As you can see by my signature I did chemo, radiation and all the while Herceptin. Chemo had it's rough days but I still functioned to some point everyday--about two "couch" days per treatment.

I just returned from a Herceptin treatment and I feel really really good. Getting out the vacuum and moving on with my day!

Keep us posted.

Mary Jo · 09-12-2008, 12:19 PM

Welcoming you Gamma Lu with open arms and a heart that cares.

I was NOT diagnosed at Stage 1 but was diagnosed at stage 2 with 1 node positive. I am currently at 3 years as a survivor and feeling wonderful. Yes Gamma Lu, we all have heard the doom and gloom but we are here to tell you that HOPE is alive and thanks be to God for herceptin. It is a miracle drug for sure.

Chemo scared the bageebees out of me too. Oh my gosh...I tried every tactic I could to get out of it (what was I thinking being a stage 2 with a 4 cm tumor and 1 node thinking I shouldn't do chemo - obvioulsy I wasn't and naturally was not educated AT ALL in breast cancer much less her2 breast cancer) Chemo was definitely not as bad as I thought it would be and the best word I can think of to describe it is "doable." I think many here would tell you the same. As far as herceptin goes, well, that was a walk in the park for me and it is for most of us. Herceptin is definitely a must....it makes all the difference in a her2 positive breast cancer .. for most of us.

So Gammu Lu.........here's a hug and a smile. Please know that we are here for you. We truly do care and I am here to tell you that you can do this and I'm sure you will do very well in treatment.

Asking God to give you His strength to sustain you and His peace to calm you.

Love,

Mary Jo

Sherryg683 · 09-12-2008, 01:00 PM

OK, I am going to be frank here.. Do whatever chemo your doctors suggest so that you are not one day a stage IV and saying...damn what IF I had done the chemo. Her2 is agressive if not treated properly. Herceptin is not bad at all when taken by itself, I have had sinus issues and a little tiredness the first 2 days, you don't even lose your hair. If they feel you need something more, then do it. Of course second opionions are always an option so you will feel comfortable in your decisions. Speaking from a stage IV diagnosis here, there is no way that I would not do some sort of chemo, why take any chances with it...sherryg683

BonnieR · 09-12-2008, 02:33 PM

Welcome. I hope you get some resolution to your concerns here. There WAS alot of "doom and gloom" about HER2+ before Herceptin came along. You can see by my signature that we have similar situations, as far as I can tell from what you have told us. Anyway, I agonized about what treatment to do. I was in a "grey area" and full of fear and trepidation.I got 3 opinions, all different! But by talking to more than one doctor, visiting sites like this one and becoming educated about my choices, I got clarity. There are alot of resources you can use. The American Cancer Society, for instance, talked to me about my options too. And a social worker said to me "if it was a loved one trying to make this choice, what would you want them to do?" I chose to do chemo and Herceptin. Like Sherry said, I would have hated the "woulda, coulda, shoulda". There were some bad days but the worst was the anticipation and dread. Once I made the decision, it was just a matter of getting through it and coming out on the other side. Which we DO!
So do your research, write your questions for the doctors, have someone with you to help hear the answers and make an informed decision. Everyone here will help you. Keep the faith.

hutchibk · 09-12-2008, 03:47 PM

So many wise ones here have answered the question, but I will add my 2¢ worth. Yes. It is worth it to consider at least Herceptin. For at least a year. The side effects are typically minimal. Some do have heart issues, but that is small percentage. It is more likely that you will not. Herceptin is not chemo. It is a targeted agent that specifically targets HER2. Some of us who live with (multiple) reccurences wish it had been available when we were dx'ed... but the timing wasn't in our favor...

You won't get nausea or lose your hair from Herceptin. You will need to get regular muga scans (your doc will know the necessary frequency) to monitor your heart, but please know that this is the smartest thing you can do for potential prevention of reccurence. Of course, nothing is a guarantee, but Herceptin is a really good start. It's never too late to start being careful.

Best wishes!

Louise O'Brien · 09-12-2008, 05:39 PM

Gamma Lu:

My diagnosis was very much like yours - Stage one, no lymph or sentinel node involvement, and er/pr negative.

In Canada, we didn't have the option of choosing Herceptin on its own. Because our health care is covered, it was Herceptin plus chemo or nothing. So I had no choice but to go through chemo as well.

I went through chemo first and then Herceptin and wrapped up treatment six months ago.

Looking back, I'm happy I made the most agressive choice - I did the best I could and will never have to second-guess myself or ask "what if.."

I took my cue from my husband's situation eight years ago when he was diagnosed with prostate cancer. There were all kinds of options from radical surgeery to what they call "watchfull waiting" i.e. just wait and see whether it will get worse.

He was influenced by a video that was given him which included an interview with General Norman Schwarzkopf who also had prostate cancer.

Schwarzkopf said his only response when he was diagnosed was to "get the damned thing out". Not to mess around. My husband made that decision and he's not sorry.

I too opted for the most aggressive course considering I was stage one. I went through a mastectomy followed by chemo & Herceptin.

I know it's an awful, confusing time and as others have said, it might help to get a second opinion.

And take a friend with you - someone who will take notes because there's so much you might not hear considering how emotional this decision is.

I cannot stress how important Herceptin is though - it's important to take that drug.

And as others have said - chemo is do-able. Once you're through that, Herceptin is a relative walk in the park. I experienced minimal side effects and had regular muga scans. My life returned to near-normal once I was on Herceptin. It truly is a miracle drug.

Patb · 09-12-2008, 05:52 PM

I was also Stage I, No Nodes but because of Her2
my Dr. suggested chemo and radiation (lumpectomy)
and one year of Herceptin. All ok, two years, three months. I have no regrets to saying yes. I had lots
of heart test and was closely watched. Take care
and best of luck.
patb

jones7676 · 09-13-2008, 08:39 AM

I certainly can't offer any advice better than what you have received already - I just wanted to say welcome to the site. The people here are sooooo helpful. Good Luck!

christie · 09-13-2008, 01:52 PM

Hi Gamma Lu,

Its good you found this site, its really helpful, i was diagnosed in May this year and from the time i came to know i was Her2, i was looking for information everywhere ,till i found this site. Now my search has come to an end, everyone here is so helpful and you can really take their advice.

I am also stage 1 with no nodes involvement, ER-,PR-, Her2 +++.

I had a mastectomy, there was a 2.5 cm tumour, and now iam on chemo, I finsihed 3 of them and i am going in for the 4th next week. They will start Herceptin from the 5th round.

Dont worry about anything, your doc is doing the right thing, do follow his decision.

Take care, dont worry, except for the nausea (mild) in the first 3 days , i have not experienced anything bad. its tolerable and after loosing your hair, you can try out all the new hair styles with different wigs, in fact i am enjoying all the new looks. Take it in the right spirit and be positive. God bless you.
love
christie

CindyE · 09-13-2008, 02:54 PM

Hello and welcome,
I am stage 1 with no nodes involved too. I did 4 cycles of chemo and am doing 1 year of Herceptin. See my signature for details. The chemo was very doable and I tolerated it well. As for HER2 +, the Herceptin is a wonder drug for the wiley cancer cells of HER2 and it's causing me no problems at all. You can do it all and then move on with your life, knowing that you did all you should have to kick this cancer of our your life hopefully for good. Take care,

juanita · 09-13-2008, 09:05 PM

I was stage 1 but did chemo and herceptin. It doesn't hurt to be proactive on this. There are other factors your doctor will look at so if you have any other questions just ask.

StillHere · 09-14-2008, 08:44 PM

Gamma Lu
I am sorry you have to go through this. One thing I regret was not researching the heart damaging effects for A/C chemo. In hind site, my tumor did not change at all after the 4 treatments of A/C, but did start shrinking after just one dose of Taxol. I also started Herceptin every week when I started taxol. Had to stop Herceptin after 7 mos. due to cardiomyopathy. I have since returned to normal heart function with help of a beta blocker and Ace inhibitor. My first thought was to pump me with whatever I can stand to kill this bugger. My thought now is maybe A/C was not the best decision. I think staying onHerceptin longer instead of 4 treatments of A/C would have been more beneficial. I will never know for sure. I just want you to get as much info on future issues that may arise from treatments you are considering taking now. Then make your decision and don't trouble yourself with what ifs. KS

gracie's mom · 09-14-2008, 08:49 PM

Hi- I was scared about the chemo too - I have now had two rounds of THC and herceptin every week. I have not had a bad experience-just mostly tired and of course, the hair loss. That is not bad to handle- get a wig, scarves and have fun with it. I only had one sad day with the hair- the day it was coming out in my hand. I did what all the women said to do and got my head shaved. Mentally and physically much better!! I know hair is not the big concern- the cancer being stopped is but it is mentally important to prepare a good attitude for it all. My outlook is that I will do what it takes to hopefully be cured. I told myself that the side effects cannot last and I can stand what I must knowing it is not forever. Anyway- hope this helps and I wish you the very best and yes, I believe Herceptin is a Godsend for us that are HER2 +.