HER+2 but NO mets, treatment options?

[Melinda]

Monday I go back to the onc for what is supposed to be the "options" for treatment. After reading messages and doing "due diligence" I still have no idea what I may be in for. It seems that everyone that is taking chemo has mets and taking Herceptin. I could not find any reference to trials that included anyone that was Stage 1, no node involvement, clear margins and ER+/HER2+. ONCO test results will be back then. Does over amplification of HER2+ mean that I do have mets?
Does anyone else come close to this. I feel the anxiety building. Please help.

[KellyA]

Melinda,


Many people on this site have had chemo and herceptin and do not/have not had mets. I was stage 2b, and do not know the protocol for all stage 1, but do think that there are many here that are stage one and received the same treatment.

Love, Kelly

[Jean]

Hi Melinda,
I was dx. stage 1 (small tumor 6MM) prior to biopsey. Atter biopsey tumor was 3MM they had removed half of the tumor during biopsey. Had large clean margins and nodes was negative. Finaly had Oncotype DX test done and it came back high risk.

I had chemo/TCH...am now on herceptin for the year and will complete that treatment in the Spring. If you have questions e mail me.

Find out what your Ki-67 level is...it is on your path report or ask dr.

Kind Regards,
Jean

[Jean]

Melinda,
There are quite a few of the ladies who are Stage 1 and having treatment.
Do remember that there are many also who like me were dx. and herceptin
or chemo was not considered the protocol or standard of treatment. It was
only just recently that herceptin is now standard treatment for early stagers.
(I believe it was August of 06)....There are also many who had chemo
and did not have hercetpin (due to staging) and wanted to have herceptin
but once again were told it was to far out from chemo (a year or more)
and they were told to not have herceptin that far out from chemo treatment.

So much has changed just in the short time since I was dx. But from the
beginning of my cancer journey it never made sense to me to make treatment choices based on tumor size. For me after reading and research on Her2
that was enough for me to consider treatment.

Please update and let us know how you are doing....sending you all good wishes...

Jean

[Sherryg683]

I don't know about anyone else but being that HER2 can be so agressive, I think I would want chemo done even if I was an early stage, and do Herceptin with it or after. I just don't think I would want to give it the chance of creeping back and metasticizing, it has been shown that mets can be carried through the bloodstream not just lymph nodes. If you look at the facts, many of the ladies who have mets were once Stage I or Stage II. Not trying to scare you but I would hit it hard before it hit me. Being that you are also ER/PR+ that will give you more options. Chemo can be done and life goes on, I would just ere on the safe side and do everything possible to make sure you don't have to deal with it later on..sherryg683

[caya]

Hi Melinda,

You sound alot like me - stage 1, ER+,PR+, HER 2+ , no node involvement, bone scan clear, chest Xray clear, bloodwork good, transvaginal ultrasound clear, stomach ultrasound , CT of brain clear- I am getting FEC - T chemo - 3 rounds of FEC, then 3 rounds of T(Taxotere), then Herceptin for a year, all once every 3 weeks. I do not have mets, and don't want to get them - that is why I am being treated with everything they can throw at me. May also be getting tamoxifen, not sure yet. I have just had my second round of FEC, feeling okay.

Her 2 is a more aggressive cancer, but you and I are in the best possible place right now - stage 1, no nodes, ER+,PR+ - I had a whole talk with my onc. about possible mets - he said he is not treating me for mets right now, and that my prognosis is better now because of Herceptin, now being given to us early stagers, which is fairly recent. So try not to worry about mets.

Best regards,
Caya in Canada

[penelope]

I am stage 1 with a 7mm tumor, er-, node neg and clean margins. I chose to do bilateral mastectomies, AC chemo x 4 and herceptin for 1 year. Just because you have her2 does not mean that you have mets. I am two years out from diagnosis and all scans PET/CT, bone, and CT have been clear from the begining. Hope this helps.

[AlaskaAngel]

Hi Melinda.

Most of us tend to assume that more definite answers have been found by now, but we learn that there still is uncertainty about what will work best for any one person.

If you are interested in clinical trials, I posted the information about the MINDACT trial on the Trials Forum here, which you can consider as a Stage 1 who does not have mets. As a stage 1 without mets you can also ask your onc about the possibility of doing the TEACH clinical trial to have Tykerb (lapatinib) instead of Herceptin, after you have completed a chemo that either includes doxorubicin (Adriamycin) or a CMF chemo.

AlaskaAngel
No mets
Stage T1c

[Mary Jo]

Hello,


I was stage 2A - no mets. I had a 4.5 cm tumor. Clear margins also. Her2+++ - did 4 dose dense A/C - 4 taxol dose dense with herceptin (but herceptin every 3 weeks)

Good luck,

Mary Jo

[Montana]

I'm also Stage I, no mets. Two + years and counting....

[cafe1084]

Also stage I, no mets, negative nodes, but IDC (with DCIS and LCIS) her2+, er+, pr- was enough for me to make my decision to have bilat mastectomy and chemo with herceptin. I don't know the size of your tumor, but my onc strongly recommended chemo for anything >1cm, but would give for invasive at any size. I have read on here the different treatment options some of the members have taken. I didn't have radiation because I had the mastectomy, so it wasn't warranted. I will also have to start tamoxifen after the chemo ends because I was BARELY er+, but he said + is + no matter what the percentage. Some decide against chemo and mastectomy because they're comfortable with that decision. Whatever options he/she may give you, take your time and feel really comfortable and in control of the decision you have made. The worst part about making that decision is wondering if it's going be the decision that will save your life.

The best thing about oncologists is they won't make the decision for you...then again, the worst thing about oncologists is they won't make the decision for you ;) Good luck and Ill be thinking about you!

Stephanie

[Carol H.]

Hi Melinda, just remember, you do have a choice concerning your treatment. As for myself being stage 1 ,1.5 cm, clear margins, node negative,her2+, I knew that I had time to do plenty of research. I took three weeks reading everything on her2. The doctor will wait. They say the most important thing is feeling positive about you treatment. In am now halfway through my radiation treatments of 33. My radiologist oncologist feels that my decision is a good one for me at this time. You'll know in your heart. Carol H.

[Dianaq]

I decided against Chemo because I too did not see enough data. I had surgery, radiation and am on Herceptin once a week. So far so good. I think you just have to believe in your decision.

[MJo]

I was stage 1 node neg. I took everything available. If I were diagnosed today, I would still choose to be as aggressive as possible in treating Her2 pos. disease. There are women on this board who were DCIS or Stage 1 who advanced to stage IV, so it can happen. I look forward to the day when there is enough information to customize treatment for every woman. I don't think we are there yet.

[Paris]

Hi Melinda. I'll put my two cents in too. I am stage 1 er-/pr- HER2+++ node neg. My tumor size was .5cm Grade 2IDC w/extensive Grade 3DCIS. I opted for a bi-lateral masectomy w/recon. Both my surgeon and the two oncs I consulted with strongly suggested chemo since I could take Herceptin. I want to do everything possible to avoid cancer coming back and I felt if I didn't take care of it now, then I would kick myself if it came back later. This is your opportunity to "cure" yourself. If you don't do chemo now and you have a relapse you can only control it. I just had my first treatment of Taxotere and Cytoxan and apart from feeling like I had a bad case of the flu for the first ten days, I am doing really well. It's not fun but it won't be forever and you have so much more of your life to live! After I have had 4 rounds of TC I will be on Herceptin for a year.

Good luck with whatever decision you make and let us know how you are doing!

Jamie

[Carol H.]

Hi Dianaq., are you recieving herceptin through a port and how long will you need the treatment? I am told that the herceptin would only give me 7% chance of working. The side effects didn't seem worth it for me. I hope all the people that have not taken A/C will keep us all posted on their conditions so that we can watch from both sides. This web site is by far the best for Her2, many brave people for sure. Carol H.

[Petesmom]

Melinda,

I too was HER2+++, Er/Pr+, stage 1 , Grade 2, no nodal involvement and I did not have chemo or Herceptin. This was a recurrence (local) and my onc was pretty adament that I not have chemo. He said that the benefit from the chemo and Herceptin was outweighed by the side effects given the parameters of my tumor. I was 52 at the time and opted to have my ovaries removed to put me into menopause so that I could take Arimidex. Now you will find other ladies who had very similar situations to mine who did do chemo and had Herceptin. For those of us who have tumors that are in the "gray area" meaning that they are 1 cent. or less, node neg, no vascular invasion, hormone + , the treatment options are more tricky. This is where some of the tests that predict recurrence may be of value (I did not have an Oncotype DX done). The other consideration is what do you feel you need to do based on the information you have? I felt comfortable with my treatment decisions but you have to do what is right for you. Best of luck to you and the information you get on this board is excellent as well as being a great source of support.

Petesmom

[CherylS]

Hi Melinda,

Just weighing in here too. I was also stage I, 1.7 cm., clear margins after re-excision, node negative, er 75%, HER2 +++. I went the whole nine yards, as I never want to do this again. I am a week away from my 2 year scans right now, and so far all is well. I had 4 AC, Taxol/Herceptin x 12, and Herceptin for a year. I also did bilateral masectomy which eliminated the need for radiation, had my ovaries out (age 45) and I am on Arimidex for 5 years. My personal choices. I just needed to know I had done all I could possibly do never to revisit this again. Good luck to you.

[Dianaq]

MJo, Yes I am well awhere of that. Some of those women also had Chemo. and it wasnt much help. I think there are many contributing factors to making our decisions and we just have to do what feels best for us.

[Hopeful]

Melinda,

I was dx at age 52 with a 1.3 IDC cm tumor, 9mm invasive, 10% DCIS, ER+ 80%, PR+ 50%, Her2+++ by IHC, Ki-67 11%, intermediate grade 2, Bloom-Richardson score 7, sentinel node negative, Stage 1 cancer. After reviewing the relative benefits of chemo for postmenopausal, ER+PR+ tumors, and considering the relative chemo refractory nature of Her2+ tumors, I declined chemo. My onc is willing to give me Herceptin without chemo, so my current program is Herceptin for 1 year every three weeks. I am also on an AI for 5 years (started on Femara and switched to Arimidex). I had a lumpectomy followed by 7 weeks of radiation therapy; the Herceptin was started with the radiation.

Everyone has to come to their own decision regarding their treatment plan. There is no "one size fits all." Get as many opinions as you need to feel comfortable with your decision, then go with your gut and never look back. Best of luck to you.

Hopeful

[Diane H]

Hi Diana, I can only tell you my choices and I was stage 2 so a different thought process. I had clear nodes but a 2.3 tumor. I chose to do everything.. A/C, taxotere, radiation, herceptin and femara. I do not know what I might have thought if I was stage 1. I do think I would still definitely do Herception and perhaps a taxane and radiation. Sending prayers and hugs, Diane

[momdeeco]

Melinda,
I was ER-PR-, Her 2 +++, 1.1 cm, Stage 1, no nodes, clear margins, Grade 3, lymphatic invasion. I had A/C x 6 doses, and radiation. After several visits with my oncologist she was still saying no to Herceptin. I thought I would benefit from it so I went for a 2nd and then 3rd opinion in Chicago. She agreed that I should have Herceptin and talked with my oncologist in Peoria so I could receive it here at the treatment center. Am so glad I found this site and am able to be an informed patient. Now we are discussing how often to have breast MRI's. Peoria onc. says I don't need any, and Chicago onc. says every 6 mo. I think the main thing is be informed, feel comfortable with the treatment recommended, and if you don't seek a 2nd or even 3rd opinion. Will be praying for you.

[Jean]

Dianaq, I do believe that the members who are or were dx. as stage 1 or stage11 (early stagers) and have had chemo/hercpetin treatment - the
jury is still out on those women - we do not have any stats on these cases yet. We are a new generation of treated women with her2 positive.
Early stagers were not getting herceptin/chemo treatments until just
recently (unless it was off label) for the most part most of the women
were not treated with herceptin. They just had chemo...and many wanted to
have herceptin but they were too far out from chemo treatments.
There are many on the board who are early stagers (node neg.) stage 1 or 11 who have had progression but I do believe they were not treated with herceptin. I believe this was the point MJO was trying to make. The standard
of treatment for early stagers was not herceptin until recently I believe
(Aug 06). In order to be treated with herceptin you had to be at a later stage. There are many on the board that we just don't know
what the results will show in a few years. Hopefully we will not see
progression - of course there is still the % that will not respond
to herceptin. But I think the glass is half full for us rather than not.
The future holds some interesting data for the early stagers who now have had herceptin (and those that have added chemo).

Of course it is always an individual choice - but I do also believe that
the standard of treatment as of today we will now see onc. offering
chemo/herceptin....or just herceptin for us Her2 patients. I have seen
much change just in a short span of 1.5 yrs. regarding treatment in the
early stagers. We are all different and react differently - but one thing is certain we "ALL" want this devil wiped out! With each other sharing information and empowering ourselves with knowledge and God's blessings
we shall win this battle.

Regards,
Jean

[Melinda]

Thank you ladies for all of your thoughts and prayers. I visited the onc today and have realized that it is in my best interest to go ahead with the chemo. He said that if I was 20yrs younger he would be adamant about it and if I was 20 older he would say no..... but just like everything else I am sitting on the fence at 54. The Onco test came back at 23.. again in the middle of the road. It is frustrating thinking that I could have not had chemo if not for this darn HER2+ but with that one reason it was enough for me to say go ahead. I had cancer 15 years ago in another area of my body and treated with radiation and 5-FU simultaneaously... that was hell on earth so I know I can do this.
He has suggested Taxotere and carboplatin 6 rounds with herceptin. I was a little annoyed about the 6 rounds when I see many go 4 of other cocktails, but he explained to me that this combo would not threaten my heart unlike the Adriamycin when coupled with the herceptin. 18 weeks is a long time but heah, I will still be here at the end of it all. Rather that than ending up with dirt in my eyes! I only want to fight this once and Im calliing out the big guns to do it.
I posted again concerning the side effects of what I will be taking so if any of y ou have any feedback please I would like to hear from you. Thank you all again!
Hugs and prayers
Melinda

[CLTann]

Melinda,

A lone voice here. I am basically in the same position like you, but I declined chemo, radiation and Herceptin after mastec. Reading the statistics, the added probablility of not having spread is only a few percentage. In my judgement, the side effects outweight the gain. I am on Femara now. The often-quoted aggressive nature of HER2, when examined in published papers, was far less than actual data. Of course, I am crossing my fingers. Read those who opted for the all-out treatments: many of them have severe problems that caused serious problems.

[Hopeful]

CLTann,

I have had more treatment than you (and am wondering if I am going to "pay" for the left sided radiation with heart problems down the road) but am in your camp on chemo. I also think that Her2+ bc is highly mutable, so that there is a danger of making the disease more aggressive with chemo by causing mutations that make it more chemo resistant. I do not think that Herceptin was laboratory tested on cells pre-treated with chemo, but just on untreated Her2+ cells where it had a very good effect. I am hoping that this carries over to the "real world" environment. Just my 2 cents. We all have to do what we believe in our hearts is the right thing for us.

Hopeful

[suzan w]

just wanted to weigh in ...as you can see from my statistics below! It is so hard to make decisions based on 'statistics', and studies and all that! I just went with my "gut" and...so far so good!!!

[Jean]

We can all share and pass our thoughts plus knowledge which at the end
of day helps us to survive!

Hopeful - Today radiation procedures have come a long way and trials have demonstrated that lumpectomy along with radiation therapy has the same
benefit as the full surgery. In the early days of my dx. I had opted for the
removal of the breast and my surgeon gave me many research reports to
view and after doing so I opted for the lumpectomy w/radiation.
I have someone close to me in my family who had huge radiation therapy
40 yrs. ago - was stage 4 and was given 6 months at best. I am thrilled
and very happy to say she is now 63 yrs. without any recurrance and living
it up. (God Bless Her).... She was only 23 when dx. and 40 yrs. ago
radiation therapy was completley another story from what we are offered today. We are certainly left with difficult decisions to make. I think as modern women our first choice is to lead as natural a life as possible.
Unfortunately when I was faced with my dx. I was more concerned with
gaining time and quality. I could be wrong but I think the effects of radiation
today take time more so than the damage that Her2 causes to us.
(I could be wrong) we still don't know? Anyway I share this story to
maybe offer some good to your decision on your radiation. Also when I met
with Dr. Slamon we discussed the chemo/herceptin decision and he was most
confident that herceptin worked best along with the chemo. Now I don't
know what clinical trials were done (and I do believe they were done) from
what Dr. Slamon said. But most important here is that we can all have input
and share our choices I think we are so blessed to have Joe and Christine
give birth to this site. Of course we must all face our own decisions but the very best part of all of this is the good we are able to do for each other.
So in our journey of cancer - and staying healthy and surviving this challenge
we have gained friends, knowledge and most of all the comfort we
bring to each other.

God Bless All of Us and Keep Us Safe!

Jean

[Hopeful]

Jean,

Thank you very much for taking the time to write. I can only imagine the terrible ordeal your relative went through 40 years ago. How wonderful that she is here and able to enjoy life to the fullest. That is a very positive story of hope for us all. From what I have read, Herceptin potentiates the radiation therapy, and I am satisfied that I got the best I could get in terms of that treatment. However, I still get concerned when I read articles like the one in the current Harvard Women's Health periodical, that discusses the differences in cardiac function and disease between men and women. Women have many more tiny blood vessels, and the loss of elasticity in those vessels are what make us all prone to heart attacks and stroke. They just seem easier to damage, and the changes are subtle. It is the fact that I am also doing Herceptin which, it appears, is having more cardiac affect in clinical practice than it did in clinical trials, and the lack of information over what will happen long term, that has me concerned. It seems whatever we do as bc patients in terms of treatment, we are making a pact with the devil.

I think that Herceptin enables chemo to have more of an effect than the chemo would alone, so, if one chooses to have chemo, IMO, you will not be getting everything you could out of it without Herceptin. That being said, I also think chemo is a therapy that is relied on very heavily in the USA, and not always to the benefit of the patient. I do read, though, that patients often demand it and are willing to endure a high degree of toxicity for a minimal benefit. Obviously, I don't fit that mold, but have nothing but respect for those who choose it. We all have one life to live, and we have to do what we think is right for us. No one can make a decision for another. I agree that we are so incredibly fortunate to have this forum to exchange ideas, hope, information and inspiration.

Best of luck to you (and your relative!).

Hopeful