HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   I am new and have questions (https://her2support.org/vbulletin/showthread.php?t=28876)

sandif 06-24-2007 02:59 PM

I am new and have questions
 
Hello and what a great site! I found this board as a link from the breastcancer.org. I was diagnosed with IDC in October 06. I just wanted to get everything moving so had lumpectomy on Nov 15. Pathology report said tumor was 8 mm stage 1 grade 3 ER/PR+ and Her/Neu 2+. I chose lumpectomy and had clean nodes and clear margins. I was treated with 33 radiation treatments and am now on Arimidex ( 57--post menopausal). All that is a blur to me since I am a teacher and was so busy working. In looking at my path report now that I am done for the year, , I am researching into more of the info and decided to look into the meanings/reprecussions of Her/Neu 2+. Apparently it means I have a greater chance of distant recurrence which is so frightening. I wrote to the Johns Hopkins boards to inquire about Herceptin and she said I was not offered Herceptin because I am stage one. It does look like some people on this board have been stage one and are on it. I understand it is somewhat dangerous to the heart. Heart disease is in our family. I have an appointment with my oncologist in August and would like to ask him about this or anything else I can do to deal with the Her/Neu 2+ factor. Any comments or suggestions about Herceptin or further treatments would be appreciated.

juanita 06-24-2007 03:29 PM

I am stage 1, grade 3 and I did both chemo and herceptin. Heart problems run in my family also, but they do either mugas or echos to make sure you are doing good. If it shows a problem they can take you off of herceptin which some of the women here have done and some have even been able to go back to it. I don't see that it would hurt you doing it since it seems to be the standard for her2+ these days.

RhondaH 06-24-2007 05:05 PM

I ALSO was Stage I
 
and most of my family had/has heart problems (thought I would have a heart attack, not CANCER). I would push for it STRONGLY...at least you will walk away knowing you've done EVERYTHING you can. Take care and God bless.

Rhonda

Patricia 06-24-2007 05:06 PM

Hi Sandif,

Welcome to the site.

I was dx Stage 1c and had chemo and Herceptin and it was never even a discussion with my onc and surgeon. They both felt that it was nececssary given my Her2 status. I would definitely talk to your Onc about Herceptin, it has kept many of us Stage 1 girls from progressing any further. It seems to be pretty standard treatment these days even for women dx Stage 1 to get both chemo and herceptin. You may have to push your onc if you really want it or find a differnt onc who is more familiar with Her2+.

Hugs,
Patricia

penelope 06-24-2007 05:26 PM

stage 1 also
 
I was stage 1 with negative nodes, negative vascular invasion and a 7mm tumor. I did chemo and herceptin for a year as well. I would get a second opinion.

Congrats on being a year out.

caya 06-24-2007 05:28 PM

Also stage 1
 
Hi Sandif -

I was diagnosed in Oct. 06 at stage 1- also triple positive - I had a MRM - also had clear nodes - I did chemo and just started Herceptin. There was no question that I would get the full year of Herceptin (every 3 weeks).
Yes, there is a small percentage of heart problems, but as mentioned, they will monitior your heart with either a MUGA scan or an echo.
Please try to get an earlier appointment with your onc., and maybe get a second opinion - try to get to a big cancer hospital and/or teaching hospital as these drs. are usually most on the ball with all the latest treatments.

Good luck,
Caya

Shad 06-24-2007 07:31 PM

Ditto for me - Stage 1, received chemo (AC) and 1 year of Herceptin. I think Herceptin was approved for early stage HER2+ breast cancer recently. Your left ventricular function will/should be evaluated through MUGA or echocardiograms.

janet11 06-25-2007 09:19 AM

I thought that Herceptin was only approved recently (within the last 2 years???) for us early-stage people. That may be why your onc didn't know of it. (and yes, stage 1 and I got Herceptin... until my LVEF fell and they had to stop it).

Susan 06-25-2007 09:42 AM

I was Stage I, and was to receive 1 year herceptin, until I had to stop it, due to LVEF problems

Patb 06-25-2007 10:49 AM

Also Stage Ic and received chem, radiation, herceptin currently and
arimidex for five years. I finished chemo in October 06, and started
herceptin in November 06. Good luck and best wishes but I would go
back to the Dr. earlier and ask about it.
patb

sandif 06-25-2007 11:39 AM

Thank you all for the great responsees. Can Herceptin be administered by injection or only by port?

Grace 06-25-2007 12:23 PM

Port not necessary
 
Sandi--I have mine without a port, usually needle in hand. My veins are not great, mainly my fault as I don't drink sufficient water, but I'll make it thru the next four. So, no, you don't need a port, which is nice.

Jean 06-25-2007 04:42 PM

I would consider a second opinion...last August herceptin was approved for early stage bc. It is considered standard of care now for her2 + patients. You may want to pull the report of A/C versus TCH trials
by Dr. Slamon...The TCH proved to be much less risk to the heart than
the A/C chemo treatments. I believe the trial showed a 0 results for
heart problems with the TCH treatment.

I was dx. as a stage 1 with a small tumor 6MM afer biopsey 3MM.
This was back in 2005....at this time Dr. Slamon was advising that
all her2 bc should have herceptin. It took me another year of fighting
hard to get the treatment. I ended up flying out to see Dr. Slamon
who advised TCH. It was very doable and I completed my l yr. of herceptin without any problems.

Bring the research into your onc. and do consider 2nd opinion.
Do not let your dr. sell you the point that due to your tumor being small
and node negative you do not need herceptin etc. There are millions
of cells in one small tumor and we do know that the cancer can pass
via the blood system.

Our site has many articles on this inforamtion.
Wishing you the best of luck.
If you require additional information or help just reach out.
Jean

ExpectAMiracle 06-26-2007 01:18 PM

I too was a stage 1C with negative nodes and clear margins and Her2+. I received 4 rounds of TCH and then am continuing with Herceptin every 3 weeks for a year. My onc. wanted to use AC at first, but because I am diabetic, have high b/p and high cholesterol and therefore more heart risk, I suggested the TC with Herceptin instead and she agreed. There was no doubt in my mind about getting Herceptin due to the Her2+ result. I did have to take some articles that I received from my sisters here to my onc. to convince her and we had to fight with my insurance a bit. I concur with everyone that you need to get a second opinion and/or take some research to your onc. for further discussion.

Best of everything!


All times are GMT -7. The time now is 02:08 PM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2025, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021