HER+2 but NO mets, treatment options?

Melinda · 02-17-2007, 08:50 AM

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 · 02-17-2007, 09:12 AM

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 · 02-17-2007, 09:26 AM

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 · 02-17-2007, 09:41 AM

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 · 02-17-2007, 10:27 AM

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 · 02-17-2007, 12:03 PM

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 · 02-17-2007, 12:04 PM

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 · 02-17-2007, 01:53 PM

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 · 02-17-2007, 01:55 PM

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 · 02-17-2007, 04:25 PM

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

cafe1084 · 02-17-2007, 05:24 PM

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. · 02-17-2007, 06:02 PM

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 · 02-17-2007, 09:13 PM

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 · 02-18-2007, 08:21 AM

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 · 02-18-2007, 09:02 AM

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. · 02-18-2007, 10:08 AM

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 · 02-18-2007, 11:10 AM

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 · 02-18-2007, 02:19 PM

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 · 02-18-2007, 07:44 PM

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 · 02-19-2007, 06:18 AM

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