HER2+ ER- and PR- / I don't want Chemo

JulC66

I had quadrectomy breast removal surgery, they got the complete tumor with clear margins and all clear in the lymph nodes. Is there anything I can do besides chemo to prevent any re-occurrences?  I know I am not eligible for the Tamoxifen and other Hormone Therapy but EVERYONE I know that has had chemo has died from it!  Including my adopted father who died of breast cancer on my 12th birthday.  They want to do chemo with the Herceptin but is there a way to do the Herceptin without the chemo?  The lymph nodes had NO cancer cells so what cells with the chemo kill?  Healthy one's it seems.  I REALLY do not want chemo does anyone know of an alternative? Thank you!!

lexislove

Ok...Im going to be blunt.

You have a very...very aggressive breast cancer. Her2+ AND ER-. Negative lymph nodes or not.

Your question: Does anyone know of an alternative? Yes...its do nothing and have your cancer end up progressing to stage 4.

You have a very..very treatable cancer. You can get through it. Don't be dumb. (not that you are....but you know what I mean)

Breast cancer does not kill if it is confined to the breast. Its when it spreads to other parts of the body ( brain,lungs,liver) that it becomes life threatning. Treatable..but life threatning.

Ang7

Oh JulC66 -

I know what you are saying.  I am going through chemo now (#4 this Thursday) and the one person I know who did chemo got an infection and died.  I got on this site and many women responded with their own personal experiences and made me feel better.  My own doctor told me that my chances would be very poor if I did NOT do chemo.  I do not know very much about your situation but I hope you can come to a decision that you feel good about.  My doctor also researched many statistics for me to read about chemo and infection etc.  I have 4 children and I am going to do 6 treatments hopefully to allow me to be here as they grow.  This is just my experience...

Hugs to you,

Ang

AmyIsStrong

Jul - I know you are so afraid. I can read behind the words you wrote.  I can really relate.  I had a cousin who died during chemo for leukemia in his 20s when I was about 13.  I remember the relatives whispering about his sufferings and it stuck in my memory. When I heard I needed chemo, I totally lost it. I pictured myself in absolute agony, lying on a bed, sweating, vomiting, moaning. But I talked to enough women who had been through it RECENTLY to get a much more accurate picture of what it would be like.

And now I have done it and I can say - I NEVER lay in bed during the day, I didn't miss work (well maybe a little - I work from home and sometimes I took it a little easy). My main large customers never even KNEW anything about it. (I chose not to tell them.) They just thought I had a much better hairstyle (the wig) than my usually messy 'do.  I walked a few miles daily and ran sometimes. A woman who I am friends with is in the middle of chemo now and has just resumed playing tennis in her league!  It is not the way you think it is from those long-ago memories, or perhaps from the way other cancers are treated. 

Before you make ANY decisions, especially one as HUGE and serious as forgoing chemo, please get more information. Your local bc organization may be able to help you, plus your cancer center, plus all of us.  It is not fun and I would never choose to go through chemo unless absolutely necessary, but when it IS necessary, it IS manageable and doable.

I have never heard of anyone getting just Herceptin. it has always come with TC (as in TCH) or AC/TH from everything I have read. Then radiation, which I had as well.

I know this is very shocking in the beginning. It takes some time to get used to. But you CAN do it. And I know you have a lot to live for in the future so you have to do EVERYTHING you can now to be sure you will be here for a long long time.

Feel free to PM me if you have any questions or want to discuss further.
I wish you a peaceful heart as you make your decisions.

Amy

dlb823

Jul66 ~ Most of us REALLY don't want chemo, and most of us have memories of people in our past who didn't do well with it.  But the good news is, chemo has changed considerably since you were 12.  Breast cancer now has a whole, new "third generation" of chemo drugs, as well as extremely effective anti-nauseal drugs and white blood cell building drugs.  My onc has been in practice for 30+ years, and he told me that 20 years ago, if he had 35 patients, 25 of them would end up hospitalized while doing chemo.  Today, it's very seldom even one does.

Believe me, we all know how scary the thought of chemo is, but with your stats, Herceptin can make a huge difference, and Herceptin isn't given without chemo.

So sorry you have a need to be here, but I hope the many of us who have done chemo -- especially the Her+ gals (which I'm not) -- can assure you it's very do-able for the large majority of us.     Deanna

amlg1

Chemo was very doable for me,and I had very aggressive tx.I asked my Dr.if she could do more,since I tolerated it so well.She thought that was funny.I'll do anything to be free of this demon.

ruthbru

Chemo is a whole different ball game than it was years ago. Doses are very specifically measured to your weight, the anti-nausea medication is much improved etc. I SURELY did NOT want to have chemo either... who does? But, for sure, I know that I never, ever want to do this again; and chemo increased the odds that I won't have to. Good Luck. FIGHT LIKE A GIRL!

suemed8749

Hi JulC - Just about two years ago, I received almost the exact same dx as you. I did six tx of Taxol, Carboplatin, and Herceptin then continued with Herceptin every 3 weeks for a year. During this I worked (disclaimer: took 4 days off during chemo week and since I'm a teacher, I was on vacation through the last two months), traveled, and exercised during my two "good weeks." It was not pleasant, of course, but I did it because I wanted to do whatever I could to prevent this aggressive form of breast cancer from returning.

Everybody is different, everybody's side effects are different, but the women above are right when they tell you that the meds that are given with chemo today go a long way to preventing nausea and other side effects.

There is a great thead here - taxotere, carboplatin, herceptin - check it out since that is one of the most common protocols for Her2+. The great women there are so supportive and helped me in so many ways.

Best wishes to you - please PM me if you have any questions.

weety

Her2+ cancers used to have grim statistics until herceptin came about.  Without  the chemo and herceptin, your risk of recurrence is about 25%.  That's 1 in 4!  With chemo and herceptin your risk goes below 10% chance of recuurence.  Herceptin is usually not given without chemo.  I don't know if that means "never" or if it is just not the standard practice.  Herceptin and chemo have a synergistic effect, meaning that they make each other work better when given together. 

ruthbru

The only person I know who just got Herceptin is a lady in her mid-sixties. So age probably is a factor in the risk/benefit ratio.  ??

Anonymous

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helena67

I think with this type of cancer you really need the chemo. Don't put yourself at risk because of fear for the chemo and old stories. Things have changed. Many people even manage to work through the treatments.You will do fine! (and you will be glad that you did everything you could.)

Best wishes & take care,

Helena.

Heathersmom

JulC66,

I worked pretty close to  full time while doing chemo, walked everyday, cleaned my house and did all my own shopping. The day of chemo and the couple days after chemo were my worst days and all I remember is feeling tired and foggy headed. I had some nasty heartburn, nothing that acid reducer pills couldn't handle. Chemo wasn't as bad as I had anticipated, it is very do-able. Don't you want to do everything you can do to prevent recurrance?

I was really scared and very vain (didn't want to lose my hair). I wrestled with the decision to do chemo (my onc told me he wanted me to really sweat that decision). I never wanted to look back and say I didn't do everything I could to prevent  recurrance.

Please sweat this decision, do everything you can to beat this beast!

Look around this site, it will give you hope, confidence and alot of valuable information.

 Best Wishes to you.

chainsawz

I had clear lymph nodes but was stage IV right off the bat......you can't count on clear nodes as a pass.  I would throw everything at the dragon including the kitchen sink if it will help :>

Anna2

I also had HER + breast cancer. I had to take one year of Herceptin and six rounds of chemo. I just got my port out last week. Cancer was in one lymph node, but even after all this, the Doctor says I still have a 35% chance of the cancer returning. I will tell you what I have learned from experience. You will get drugs to keep you from throwing up. I never threw up. About the third day after I received Chemo, I did feel sickish, and lie in bed for about three days. The thing you want to do is PREVENT yourself from getting germs. I learned that I should not go anywhere for 10 days after each chemo, which was the prime time to catch germs. Any little virus or germ could put you in the hospital. That is what you need to avoid- stay away from people with germs or viruses. I hope this helps. I wish I would have been told this before I started chemo.

suzieq60

Research shows that herceptin is more effective when given with chemo - you must have it!!!!!

janincanada

I agree with everyone that has already posted.  My onc when I pressed her provided me with some stats regarding being alive.  I know everyone's cancer is different due to Grade etc. but this is what I was told.  without chemo and herceptin there was a 78% chance I would be DEAD in 10 years.  With chemo and herceptin it dropped to 39% for me.  Statistically that is a significant drop and I never looked back.  the meds now for nausea and the ability to finetune the chemo for each individual is so much better than it was.  Go for it so you can continue to live joyously. I still enjoyed myself during chemo; I just tried to avoid germs.

Hopbird

I had a very small (too small to measure) HER2+ cancer a year ago and nodes were clear.  I had a mastectomy.  Several doctors agreed that I didn't have to do chemo.  A year later through a fluke we found my nodes were now positive.  Thank God we found it before it progressed any further.  If you are on the fence at all, get the chemo and Herceptin.  You don't want to look back wishing you had.  Chemo is not something I have enjoyed, but it is not NEARLY as bad as I thought it might be.

ruthbru

I talked to my 67 year old 'just hercetin' friend last night. She is also very strongly ER & PR POSITIVE, so could go on Armidex as part of her treatment plan. She said if that had not been the case, and/or if she had been younger, she would have had to do chemo for sure.  

KorynH

I know that my doctor said the same thing the first responder said in this thread - I would die without it (and I was node negative too). He allowed me NOT to do Adrymycin and to to Taxotere / Carboplatin instead so that my heart would no get the double whammy from two heart toxic drugs (the Adymycin and Herceptin). I made it and finished 1 year of treatment in December. Chemo drugs for other cancer types are not the same as the ones they can use for breast cancer. Get lots of information before making your decision. Most decisions are made with too little information and no second or third opinions. Your type of breast cancer is nothing to fool around wth.

swimangel72

Here's an article showing that chemo with Herceptin is highly effective for women with even very small Her2+ tumors (node-negative) - that's tumors less than .5 cm. Your tumor is much larger so it is extremely important to start on Herceptin asap.

Trastuzumab May Benefit Patients with Very Small & Low-Grade Breast Tumors

In my case - since my tumor was "only" .9cm and Grade 1 (well-differentiated) and I had a mastectomy, my onc put me on a "light" chemo called Navelbine - every two weeks for 4 months, given with Herceptin which continued for a year. I didn't lose my hair (although it got thinner) and I was never nauseous (although I would get diarrhea the night after my infusion). Also it didn't cause any heart damage the way A/C can. It was an unusual regime, but I had 3 oncologists agree with this plan.

Don't assume you will die from chemo - it's very unlikely. However, the chances of dying from your breast cancer if it turns to mets is very high.........get a second or third oncological opinion - ask them about Navelbine with Herceptin - and try to stay calm! May God's angels watch over you!