HER2 learning more is it a bad thing?
 

I am learning more about HER2, I have ER/PR+, HER-2 3+, I had a bilateral mastectomy March 2010, no chemotherapy as my lymph nodes were negative. I am only on tamoxifen daily 20 mg. I am very confused as I am learning more and more about my disease. I am very concerned with the fact that I didn't have chemotheraphy. My tumor size was 1.5 mm which was very small but I am so worried about this aggresive form of breast cancer that I had. I only go see oncologist every 3 months to check my blood - then visit with him when results come back. I also have CT and Bone Scans to make sure the cancer hasn't came back. I don't know if I am on the right treatment and I am going to go talk to the oncologist about my options. I am only on Tamoxifen and no other treatment has been an option for me.. just a little freaked out when I read some infomration about the HER2 in breast cancer... **The Her2 Receptor is associated with POOR Prognosis in patients with breast cancer** this statement scared me to death... Any information would be great I am newbie and posted on the newbie forum but also wanted to post here. My diagnosis was DCIS, Stage 1, HER2+/ER+/PR+, grade 3, node negative, which at time of surgery 3 weeks later to have my breasts removed it had turned into Invasive Ductal Carsinoma HELP!

Re: HER2 learning more is it a bad thing?
 

You can see by my profile how aggressively I chose to treat my ER/PR + Her2 +++ small tumor, no node. No regrets. I think Herceptin saved my life. My suggestion, get another opinion. Good luck!!

Re: HER2 learning more is it a bad thing?
 

Thank you Susan. I went to a website and read up on Herceptin. I do believe I need a second opinion. I have been on tamoxifen for over a year now. I started treatment in April 2010. I have got to get the right treatment for me. I do not think it is tamoxifen? Why would my oncologist put me on tamoxifen if I have HER2+? Makes no sense to me? My Mother was put on tamoxifen after her right breast was removed and 6 months later the cancer hit her bones and she died within 2 years of her diagnosis. I do not want this to happen to me. I am scared of tamoxifen I guess you would say... I have been reading so much information on this and now I am in question as far as what is the best available treatment for me... Going to make an appointment as soon as possible....

Re: HER2 learning more is it a bad thing?
 

I just think it is strange that doctor ordered no chemotherapy could that been due to the tumor size and also node negative? There is so much to learn about this disease and if you are not up on it you get lost in it all. I just had my bone and ct scan in May they were both negative... I mean is there anyone out there that has been on tamoxifen for the full 5 years and has had no recurrence being HER2+? If there is please reply - I just need more answers... I am having those same scary feelings as I did when I was first diagnosed. I hope that my oncologist or his nurse can sum it up for me.

Re: HER2 learning more is it a bad thing?
 

Hi ladies,

Sorry that you had to join us. There
are lots of positive stories on this site - one member was stage 3C, had two kids post diagnosis and is 5 years out. I plan on being here for a long, long time and so do everyone else on this site. There's a lot of hope for us HER-2+ folks. You can search for those stories in the search window.

Btw, I had one oncologist tell me that out of 50 patients he's treated, only 2 have recurred and even those two are doing fine.

Re: HER2 learning more is it a bad thing?
 

If I were you I would get a second opinion as soon as possible.
I think it is a good idea to consider some Herceptin in addition to an anti hormonal medicine like Tamoxifen if chemotherapy is not recommended.
Take good care of yourself.

Re: HER2 learning more is it a bad thing?
 

Elaine,
Do you know if you can take tamoxifen and herceptin at the same time? Or does anyone know?

Re: HER2 learning more is it a bad thing?
 

You can take Herceptin and Tamoxifen at the same time and they work very well (synergistically) together with the Herceptin taking care of the Her2 and the Tamoxifen taking care of the ER/PR.

Re: HER2 learning more is it a bad thing?
 

on your original post you wrote: "My diagnosis was DCIS, Stage 1, HER2+/ER+/PR+, grade 3, node negative, which at time of surgery 3 weeks later to have my breasts removed it had turned into Invasive Ductal Carsinoma"
DCIS would be stage 0, so I'm assuming you have micro-invasive IDC to be stage 1....
I guess that might be borderline and since it's not in the lymph nodes maybe your doctor thinks the MX is enough, but I think it warrants a second opinion. It might only be a small chance that it could have moved out of the breast, but I'd rather be on the safe side myself. Herceptin has few side-effects and generally well tolerated...but it is an expensive drug (8k+ per treatment) so maybe the pathology has to meet certain criteria before the Insurance co. would pay....

Re: HER2 learning more is it a bad thing?
 

I'd also agree on getting another opinion and maybe herceptin may still be available to you?

Re: HER2 learning more is it a bad thing?
 

Just to clarify... My initial diagnosis March 4, 2010 after my biopsy was DCIS - 3 weeks later on March 29, 2010 when I went in for my Bilateral Mastectomy, the pathology report showed it had grown and became Invasive Ductal Carsinoma with a tumor the size of 1.5mm Stage 1 was then put in place.

Re: HER2 learning more is it a bad thing?
 

You need to be on Herceptin. At the time you were diagnosed, I'm not sure Herceptin was standard treatment for very small tumors, such as yours, but it is now. You need to stay on the Tamoxifen, as well--as Becky pointed out, the tamox is to inhibit estrogen, which your tumor is positive for.

My daughter is on both - tamox every day for 5 years and Herceptin every three weeks for a year. Definitely find yourself another oncologist, preferably at a major cancer center.

Most recurrences of HER2 cancer happen in the first two to three years, so you are doing okay so far!! But best to cover all your bases. Good luck!

Re: HER2 learning more is it a bad thing?
 

I don't believe we have any major cancer centers here in Wichita. We have one location where everyone gets treated here. And it is so busy at all times. I am going to discuss this with my oncologist in the morning I have an appointment with him at 10 a.m. - I am going to push for the Herceptin I will do whatever it takes to not have recurrance. Is herceptin like chemotherapy? Is it taken through a vein? Or pill form? Can someone please advise? Thanks

Re: HER2 learning more is it a bad thing?
 

Yes, you get it in an infusion, every three weeks generally. It doesn't take long - maybe half an hour or so. The protocol is often to start you off with some chemotherapy to make it "kick in," though - usually Taxol. What's your insurance like? Lani on the board here is a wealth of information, as is Jackie, and they can probably give you links to the latest research that you could print up and show to your oncologist.

Here is an article to get you going. http://www.breastcancer.org/risk/new...h/20091104.jsp

Don't be scared. With Herceptin now, HER2+ tumors are sometimes considered the best kind of breast cancer to get, because they're so treatable.

Re: HER2 learning more is it a bad thing?
 

P.S. I just read the article myself, and your tumor was so small (1.5mm) that you may actually be getting the right treatment, as Herceptin is not recommended for tumors smaller than .5cm. Maybe print out the article and bring it to discuss with your oncologist, and a second opinion, even a third, is always a good idea.

Keep us posted. You're in our thoughts.

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KirisMum-
Thank you for the information. One more question, if they start me out on some chemo such as what you listed will I loose my hair? I mean how much chemo does one have before hair loss? I am more certain today than I was a few days ago, this website has helped me out so much. I feel bad asking so many questions but I want to know exactly what needs to happen for my treatment. Thank you for the website I will check it out. I appreciate it so much. Also, will a port need to be inserted for me to get the infusion? I hate needles and the Cancer Center here where I go has a hard time getting blood due to deep veins... let me know. again thank you so much!

Re: HER2 learning more is it a bad thing?
 

My daughter did lose her hair on Taxol. But it comes back, and there are wigs. Some people don't lose their hair, just get some thinning.

NEVER feel bad for asking questions!!! How do you think we got all the answers? ;-)

But we can give you general information; the best specific information for your case will come from your treatment team. Some people get ports, some don't. It sounds like you would be a candidate for one if you needed regular infusions. My daughter HATES needles too, has never got used to them though she has had hundreds of them, but she didn't get a port because she's an equestrian and they were worried about her falling off her horse and landing on it. She has tough to find veins, too, so she just goes on getting stabbled, grinning and bearing it. Ugh.

Everyone's different. ;-)

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KirisMum-
Thank you for all the information, tell your daughter I feel her pain with the needles I hate them things! My last CT and Bone Scan they stuck me 7 times until they finally got a vein. You information has greatly help me this morning. I am taking the article and going to see what Dr. Reddy tells me. Regardless my gut feeling say to do this for me for my life... If he refuses then what do I do? Request another doctor in that same office to state his opinion? But what about mine? Regardless it wouldn't be a bad thing it would be a positive one I think...

Re: HER2 learning more is it a bad thing?
 

You might have to go farther afield for a second opinion - not sure how good an idea it is to stick with the same practice. I'm not sure where the nearest major cancer center to Wichita is - I'm in the NorthEast, but maybe others on the board here can suggest some place. The University of Kansas hospital in Kansas City seems like a good bet.

If several competent oncologists agree that your tumor does not warrant treatment with Herceptin, I think you have to trust their opinion. They are all trying to balance potential harm from side effects against the risk that your tumor will come back.

You might want to look into getting into a clinical trial somewhere. Treatment is usually free, and you are contributing to research about unknown factors. There's a section here on the board about clinical trials.

I feel for you--the fear of recurrence is awful. I am dealing with that now regarding my daughter, who is doing fine, but I am up most nights waiting for the other shoe to drop. But you can't let your (understandable and normal) fear cloud your intellectual judgment. Hopefully talking to some experts will ease your fears.

Let us know what Dr. Reddy says.

Re: HER2 learning more is it a bad thing?
 

I believe your right - But I do trust my oncologist and I know even if I have my doubts about what he says he will do what I feel is best for me. It is my body and my decision. We will see what happens. Cancer sure is a scary thing and I pray that one day we find a cure for it there are so many that have it and it is so sad to me. Keep your chin up and think positive as I have tried to stay positive but it is always there and never goes away no matter how hard we try... xoxo hugs to you and your baby girl... and thank you for all the information this morning....

Re: HER2 learning more is it a bad thing?
 

Sweetsnflwr,

A bit of historical information might help you, because it may help to understand the actual lack of logic behind standard recommended treatment and why doctors "don't know" all the answers.

At the time Herceptin (trastuzumab) was being offered through clinical trials WITH chemotherapy to see whether the Herceptin would be helpful or not, for the most part "early stage" patients who were HER2 positive were not allowed to participate in the trials. Even after the trials for mostly later-stage HER2 positive bc patients showed Herceptin helped, for a while there was no recommendation for early stage bc patients who had "missed out" on Herceptin, to then be given Herceptin.

Over the years since then, the trials have not been done to show whether chemotherapy is necessary WITH Herceptin for early stage bc, or whether Herceptin ALONE is sufficient. It sounds pretty dumb to anyone with a brain and especially dumb to the people who have to go through the trauma, emotional and economic, of adding chemotherapy to treatment (along with all the support drugs for chemotherapy, such as steroids, blood boosters, etc.) But that is the status quo that all of us have had to base our choices for treatment upon.

Some of those who originally "missed out" on Herceptin found oncs who were willing to give them Herceptin "late". I am one who did not, and have never had Herceptin although I did have CAFx6 chemotherapy followed initially by some tamoxifen. I lost my hair and it regrew. I also had DCIS and a 1.6 cm IDC. I have not had recurrence. Some patients go all out and have the strongest therapies possible; some recur anyway and some don't, and most deal with the side effects of treatment regardless.

Age makes a difference. Younger patients have more recurrence. I was 51 at diagnosis.

It is hard to make the choices, based on the lack of adequate information.

AlaskaAngel

P.S. In the countries with more health care money and facilities, t is now standard to give chemotherapy plus Herceptin to patients with HER2 positive IDC. Some give 9 weeks of Herceptin and some give a year of it.

The first 2 years are the highest risk for recurrence, and from my vague impression of those on this board, those with early stage HER2 positive bc who have gotten past that point have generally not recurred whether or not they had chemotherapy and/or Herceptin -- but again, age also may make a difference.

Re: HER2 learning more is it a bad thing?
 

Hello AlaskaAngel, I am new to this site.Had b/c in 2003 ,stage II her2+++ and "missed out" on Herceptin age 34.I was given 4 AC and 4 Taxol.In 2010 on a routine ct scan they found mets on my lungs.I believe if I would have taken Herceptin I would not have had a recurrence.Currently on Herceptin only every 3 weeks and mets are smaller and stable.

Re: HER2 learning more is it a bad thing?
 

Pmoore- My point exactly, I am so sorry to hear about this - but I am glad they are stable. I am going to visit my oncologist tomorrow and get to the bottom of my treatment as I am not happy with what I have been hearing for the last 2 days about me not having any chemo or being put on herceptin since I am HER2+++!! I am irritated and very concerned about my condition. I just had CT and Bone Scans May 11th and they were both clear... I get those every year for the next 5 years but that still doesn't solve my problem. bless your heart keep your chin up!

Re: HER2 learning more is it a bad thing?
 

I was considered in a "grey area" when it came time to decide on treatment. My cancer was "small" and I was node negative. I sought a few opinions. One was with a highly regarded consultant. She felt I needed NO further treatment based on my statistics. Not even an AI! Long story short, I chose to go the route of chemo and Herceptin anyhow. Partly out of fear (not a good bases for a decision!) and partly out of feeling I needed to do MORE. And so I would not feel regret later (I am big on regrets!). I feel you are in that same place. Your oncologists reasoning may be sound and logical, but sometimes logic is not a factor when one is the patient!
I hope you can obtain a second opinion and also have a good conversation with your onc. And mostly I hope you find peace of mind. Keep the faith.

Re: HER2 learning more is it a bad thing?
 

Hi pmoore,

I agree, Herceptin is a meaningful addition; the question of chemotherapy WITH it is open. I should add, also, that although early stage includes stage II such as yourself, the group of stage I's who either did not do chemo or did not do Herceptin are those who don't seem to have recurred long-term. Thanks for posting.

AlaskaAngel

Re: HER2 learning more is it a bad thing?
 

AlaskaAngel- Are you saying that more Stage 1 patients that opt not to have chemo or herceptin didnt have recurrance? Please explain that last statement...

Re: HER2 learning more is it a bad thing?
 

Hello, I thought I was in the clear after 5+ years. I tend to get upset and angry that I was never given Herceptin .However I keep telling myself it was not approved yet in 03' for my stage of cancer.Still I do think what if...

Re: HER2 learning more is it a bad thing?
 

Pmoore- That is where I am at... I have been doing alot of research on this and found this site a few days ago and have learned more about HER2+++ than I ever knew. I think Herceptin is something I should consider just to be safe. I understand your anger I would be too... And all along alot of my friends have said, why didn't you have to have chemo or radiation? Because my nodes were negative... that was what I was told. And we were dealing with a tumor size 1.5mm regardless of size it grew in my body period. He also stated that cancer cells can travel and can not be seen with the naked eye or even on Ct or Bone Scans. It sounds like a good protocol for me - in my gut I have a feeling this is going to come back to haunt me again. And if I can stop that from happening I am going to do it. Positive thoughts and a big big HUG to your Pmoore! keep your chin up! xoxo!

Re: HER2 learning more is it a bad thing?
 

Sweetsnflwr,

It is still a shot in the dark regardless because the evidence was generally not collected in terms of the addition of chemotherapy. (There is no garantee for any of us no matter what the therapy is.) As noted in another conversation/thread here, the "right" chemotherapy for the "right" patient is not known yet, so, much of the time chemotherapy is given, whether or not one recurs, one cannot know if it helped or not.

My comment is only a reassurance in that from what I have noticed here, stage 1's who have made it past 2 years out have not generally recurred, whether or not they have had chemo/herceptin.

There are those who have VERY small tumors who still may recur -- and some of those who do all therapy STILL may find thay may not be protected by chemotherapy and Herceptin.

It is completely understandable that anyone may prefer to exercise all caution, and do all therapy. But the actual clear documented basis for it is minimal, particularly for stage 1.

AlaskaAngel

Re: HER2 learning more is it a bad thing?
 

I had small tumors Stage I -.5 cm and 1.2 cm. Still did the TCH protocol. As stated above I would get a second opinion at a cancer center. This is a common mixture for HER2. If you get put on herceptin or chemo ask for a port to be put in, a lot easier then getting your arms stuck. I lost my hair but it comes back pretty fast. Mine is curently curly (cowlick), kinda liking it. You'll have a lot of questions to post if your Dr decides to go the chemo or herceptin route but there are an abundance of us here to answer them for you. Good Luck.

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Now I totally feel that I have been guided in the wrong direction regarding my treatment. If I am requesting or requiring my doctor to put me on this treatment program that is my request I can do that right? I would rather do it than not. I keep reading all of your stories and the last post that came from snolan her tumor was smaller than mine and she received the protocal - I am anxious now to talk to him tomorrow. There is another Cancer doctor that everyone says is a great oncologist so if Dr. Reddy doesnt agree then I will suggest speaking to Dr. Matar. Thank you everyone today for all the information... I am stunned and in shock that they didnt put me on chemotherapy. I mean we never know if it will kill it or come back but we at least have to try and fight right? I will do whatever is necessary!

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Don't forget that YOU are in charge. You dont have to have anyone's permission to go get a second opinion. You just request your records and take them to the appointment. It would be great, of course, if you and your onc came to an understanding. Keep the faith. Let us know what happens.

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Okay I am going to throw my 2 pennies in. You had a 1.5 mm so that is VERY small, serious but small. I know one person who had a small idc who did not have chemo or herceptin and she is 3+ years out. Another swimangel (on here) I believe had a small amount of idc and had navelbine (just hair thinning) and herceptin for the year. So there are 2 schools of thoughts.

Another is if treatment would be offered because you are so far out from surgery. I would get the second opinion and see what they say, it's not going to hurt. ((hugs))

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Well today is the day going to oncologist at 10 a.m. I am anxious to see what he tells me. I will update ya'll as soon as I know something. This has been weighing on my mind so long.

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I visited with my oncologist today. No treatment other than tamoxifen at this point. Since my tumor was 1.5 mm it is too small to even meet the protocol for Herceptin/Chemotherapy. He offered that I could get a second opinion and offered to set up the appointment for me and referred me to 3 breast Oncologist in Kansas City. He sit with me and explained everything and that since the tumor was caught so early and I was node negative that even the Oncologist Board would question him putting me on herceptin and chemotherapy. He is only doing the bone and ct scans due to famly history otherwise there wouldn't even be that given the size of the tumor. He is currently monitoring my blood and liver enzimes and said if those numbers start to come up then we would have a problem. I feel more at ease and even the fact that he offered to set me up for a second opinion makes me feel good. I am thankful for everyones input regarding the HER2+ questions that I had - I will continue to be monitored and have lab work every 3 months. I found out a lot about my breast cancer this week and I am thankful for this website... you ladies are awsome! Thank you again!!!

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Yep -- HER-2 learning more is a good thing!

It is a trade-off of sorts -- between doing a choice of treatment now, versus later IF needed; the advantages to waiting are that more is likely to be known later, with newer treatments by that time -- and -- more flexibility in making your choice, whatever it might be. Some have found that by making a particular choice early on, their choices were more limited when they did want to do more treatment. HARD, HARD choices to make.

A.A.

Re: HER2 learning more is it a bad thing?
 

Hello Sunflower -

I have been following this thread and wondering how it would turn out.

I have 2 questions. First, I did not catch anything about a family history till your post today. What is that? It is NOT usual to have a patient take so many scans at stage 1. Bloodwork - yes.

What kind of med insurance do you have? Is it an HMO? These are all about limiting expenses - sometimes at the expense of their PATIENTS!

Please keep your other opinion appointment. Your tumor was Grade 3, which is aggressive. In an age when we have a drug such as Herceptin which is proven effective, I don't see why you could not have been given the FINHER trial amount of 9 weeks worth at a minimum.

Keep poking and prodding until you are satisfied that you have the best treatment for your indivdual case.

Re: HER2 learning more is it a bad thing?
 

You onc sounds like he is thoughtful and reasonable. I am glad you had this conversation and the peace of mind you wanted. I am also glad you will be getting a second opinion.
Keep the faith!

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Sorry I left out family history... Let's begin... My Mother died in 1995 of Stage IV breast cancer which lead to secondary breast cancer in her bones. She was diagnoised in 1990 had her right breast removed and that is where they found my cancer and 23 of her lymph nodes were positive malignancy. She had no chemo they put her straight on tamoxifen and the cancer went into her bones 6 months later she lived until June 29, 1995 I was 25 years old when she passed. My oldest sister on my father's side no relation to my Mother, she died at age 54 Stage IV Breast Cancer, My other sister on my father's side age 60 diagnoised with Breast Cancer and two Aunt's as well on Father's side. Oncologist believes this cancer is coming from Father's side as I have a sister on Mother's side with no cancer at all she is at 56. I am the 12th child but my sister's are all half and I have brother's too a total of 7 brothers and 3 sisters. My Mother had 7 kids me being the 7th and my Father had 5 kids me being the 5th. I am the only child from my Mother and Father. I do not know my Mother's diagnosis like HER2+++ or ER/PR+? I have no idea as when she got cancer I was only 17 or 18 and was not up on all the health information at that time. One sister had DCIS with lumpectomy and radiation, my other sister who passed it had spread to her liver before they found out it had started in her breast. So there are so many of close relatives that have been diagnosed that is why he is watching it closely with ct and bone scans... I know pretty crazy in the least.

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Also my oncologist told me it was a T1a today my tumor.. what does that mean anyone know?