Need help with HER2/neu positive diagnosis

javagirl39

Hi,

I had a lumpectomy and a sentinel node biopsy on Feb 24th.

I met with my surgeon last week who gave me a copy of the pathology report.

The margins are clear and the lymph nodes are clear.

Invasive cancer was found measuring 2.1 cm and it is high grade. The DCIS was found to be high grade as well with necrosis present.

Both HER2/neu and Estrogen are positive.

I have begun to do some research on treatment for HER2 positive results.

If anyone has had a similar diagnosis as mine, I would very much like to hear from you and hope that we can exchange PMs so that I may ask some questions. I need to prepare myself (both psychologically and with knowledge) for the appointment with the oncologist booked for March 23rd. I was in shock when my surgeon told me about the invasive component and forgot to ask him questions. I don't want to make this mistake again.

If anyone is willing to PM me, I am also looking to build a network of support as I am mostly going through this on my own. I have a few people who have offered their support but to be honest I really need a few more.

Thanks in advance.

Christina

Anonymous

I'm Her2 positive but hormone negative.

Please please take a friend or family member with you to your doc appointments. Their job is to take notes and make sure all the questions get asked. Docs often have their agenda of what to cover, and they can monopolize the conversation, with the result being that our questions don't get asked.

plakatakr

Christina- We have similar dx's. The worst is over for me but I am here and willing to "talk". PM me at anytime.

Linda

swimangel72

Hi Christina - I'm so sorry you're going through this, but you came to the right place for help! Another web site with tons of information about Her2 breast cancer is www.her2support.org.

The good news is that Her2+ tumors are treated today by Herceptin - a miracle drug! You will need chemo administered with Herceptin - but the chemo will be of shorter duration. Most of us get Herceptin tx every 2 or 3 weeks for a year. I'll be done with mine at the end of April (yay!). Herceptin doesn't cause many side effects - it's not really a chemo drug, it doesn't kill other cells in your body. You will need to have your heart checked either through a muga scan or electrocardiogram - in very rare cases, heart function can decline. This is totally reversible by stopping the Herceptin.

You can also find a lot of information about Herceptin in the Treatment and Side Effects section here at bc.org by searching on the word Herceptin.

Good luck - and if you have any more questions, I hope I can help you!

kimbly

Christina we have a similiar diagnosis.  Feel free to pm me.  I am finished with chemo and herceptin and now just moving on with tamoxifen and my oomph. in a few weeks.

orange1

Hi Christina,

I also have a similar diagnosis.  I finished chemo and herceptin and now on tamoxifen.  Also, get Zometa twice a year.  Feel free to PM me anytime.  

javagirl39

swimangel72 - thx for posting the link to the her2 site.

suemed8749

Hi Christina - I was diagnosed 14 months ago - 2.2 cm IDC tumor, ER/PR - Her2+, Grade 3, also a DCIS component which led to a mastectomy since margins weren't clean after a lumpectomy and re-excision. I had 6 treatments of Taxol/Carboplatin/Herceptin which ended July 22, and Herceptin every 3 weeks since then. Feel free to PM me if you ever have any questions.

Best wishes to you!

Sue

shelloz1

Hi Christina,

I also had a similar diagnoses, dx Sept/06, I was stage 1 (1.6cm) Grade 3, 0/8 nodes, ER/PR- and ER2++.  I did 4 rounds of A/C (every 3 weeks) followed by 6 Taxol (every week) 42 rads, and one full year of Herceptin.  I am finished my treatments (which were very hard, BUT I LIVED through them). 

Feel free to PM me anytime.

Shelley

JeninMichigan

Dear Christina.

I am sorry you are going through this!!   I am Her2nu positive and mildly ER+ (only 5 percent).   My tumor was 2.1 CM with 4/9 lymph nodes.   Do take a friend or family member with you to your appointments.  A second set of ears is so important.  It is overwhelming for you and you will forget to ask questions and remember instructions.   One important thing to keep in mind is that even though her2 is an aggressive cancer , you have a treatment in the form of Herceptin which is like a miracle drug and so effective.   The same goes for the ER+, you can take hormone therapy which too is very effective.   You are still early stage and Herceptin is very effective in early stage B/C.  You will probably be on it for one year but it is a very well tolerated drug. 

I am Stage IV and have been from the start. . I took 6 cycles of Taxotere, Carboplatin and Herceptin.   I continued Herceptin (and now Tykerb) and will likely be on Herceptin for life.   I am a single mom with two young daughters who have a dead beat non existant father.  The three of us live in the country on a 10 acre farm and my family lives about 1 hour away.  I did have some help but I managed chemo, working full time and my property OK.  It was difficult during chemo but all doable.   

Feel free to PM me anytime.  I will be very willing to help you out.  It is overwhelming and scary but you will be OK.  Trust me... you will be a stronger woman when this is done!!

Jennifer

bre

Hi Christina,

My diagnosis was IDC tumor 1.7cm plus malignant microcalcifications, grade 3, nuclear grade 8, er+/pr-/her2+++.  Had 0/12 nodes affected.  Had mastectomy, 4 rounds of adriamycin and cytoxan, tamoxifen for 10 months then arimidex up to now.  I was diagnosed at 49 years old in Jan 2004.  I was taking 21 college credits plus working full time at the time.  During chemo I dropped down to working 2-4 days a week.  It was a rough time but it is doable.  As you can see, it is now 5 years later and I am doing fine and that was without the benefit of herceptin.  You will have the added benefit of being able to have herceptin.  I am not sure what else I can tell you except to get a copy of your pathology report and all tests that are run and keep them organized in a book.  You will find that you will refer back to the pathology report as you learn more.  Also someone else at the appointment when you get all the information is very helpful because it is hard to absorb it all.  I did not like anyone going with me to my chemo appts and so drove myself there and back most of the time.  i found the college courses helpful because I had to concentrate on something other than myself.  Also the ladies here were a tremendous help and I couldn't have gotten through this as well without their support.  It took me a year to get the nerve to ask onc if he would use the word "cure" in my case.  Mostly I wanted to know the risk of recurrence with and without treatment at first.  There is a place you can go here to research questions to ask the onc.  I found that very helpful.  I also read alot of books at my public library on the subject.  Let me know if I can be of anymore help.  One other thing.....I feel I wasted alot of time in fear and learned that I had to live now and not be so afraid of the future.  If you are too anxious at first, you may want some ativan or xanax to help you deal with chemo and stress at first.  I took a little ativan before every chemo so I wasn't so stressed and it helped greatly.  There are alot of great drugs now to help you get through chemo.  Just listen to your body and if it tells you to rest, then rest.  Try to keep a little active like walking as much as you can tolerate to help you get through it all, boost endorphins, appetite, etc.  You will have some good days and some not so good days.  Go with the flow.  Hope this helps.  Hang in there and let me know if I can help more.

tulipbebe

Hi Christina,

I share the same prognosis though I'm hormone negative.   I'm right now struggling with having ACTH or TCH.  Feel free to PM me.

Dolores81035

Orange 1, Did you get lab test every week while on the combo Taxol/herceptin ?

orange1

Hi Dolores,

I did 6 cycles of TCH every 3 weeks.  I got a lab test every three weeks, immediately before my infusion.

Now I am on zometa every 6 months.  I get a lab test immediately before that infusion too (to monitor kidney function, and to adjust dose based on kidney function).

MySis

Hello everyone,

My name Sol, and I am writing on behalf of my sister, because she is not good with English. I went to India (New Delhi) from USA to support her financially, and she came from East Africa, i could not bring her to USA because of Visa issues and the processing time that will take. It has been 7 months now in India and things are going wrong and I am very frustrated I feel I am in a dark.

Her Med. Onc. decided to give her Taxol (100 mg) and Herceptin (110mg) every week before surgery, they said to shrink the tumor because it was big. After taking 4 cycle of Taxol and 7 cycle of Herceptin, her white blood cells drops very low even after given the injection to boost the white blood cells. The Surgeon decided to do surgery and she had the surgery (mastectomy on her right side). The pathology report shows ER/PR+ and HER2+++ so the doctor decided to continue with Herceptin and Taxol every week.

Bad news. One week before she completed her cycles she has two lumps on her right armpit where she had the surgery, and we decided to do bone scan, Pet scan and cat scan; bone scan and cat scan showed bone mets + the lumps she had on her armpit, but pet scan only showed the lumps on her armpit. I was devastated, and did not know how to tell my little sister, finally I told her the truth and I cannot tell you how devastated she is.

Now the strange thing is onc. Surgeon took out the lumps and the pathology report shows different when it comes to ER. Previously it was ER/PR+ HER2+++, but now she is ER-(negative) PR+ HER2+++. Could the pathologist make mistake on the previous one or may be on the recent one? This is bad; she already took a lot of chemo. What are her options now? Does this mean Herceptin failed to work on my sister. We talked about hormone therapy but with ER- it will only respond 30% they said. Some one, I need your help; if you can as soon as possible. I would never wish the darkness I am feeling right now to anybody. 

Please do it for my sister.

 Sol

HensonChi

Sol,

There were mistakes in my pathology so I had the tissue checked at another hospital.  Maybe you should go for a second opinion.  I know it is hard not to panic, but once they got mine figured and I was on the right course of treatiment, I felt so much better.

orange1

I have read that in about 20% of the time, mets have a different receptor status than the original tumor.  Perhaps you could get her pathology slides and take them to another institution to be read as a double check.

You may want to post your questions on the stage IV forum.  That forum has a lot of people with experience in the treatment of stage IV cancer.

Good luck

orange1

Hi Sol,

I just found this regarding ER testing;  "Studies have demonstrated that results can be inaccurate in up to 20% of cases.  Because the majority of errors are false-negative results, potentially beneficial therapy may be mistakenly witheld from a substantial number of patients."

The full article can be found at:
http://www.medscape.com/viewprogram/8053_pnt

See the section called Hormone-Responsive Breast Cancer.

MySis

Thank you very much all,

I posted my sister's situation on to differnt forum and most of them are like you great people sugesting for a second opinoion. Today i finished all my paper work and i am sending the slides to Mumbay (Bombay).

I feel much better a bit, thank you very much, i will let you know once i get the result, they said it will take 7 days.

 Regards,

Sol

Beach

Christina,

Just found your post and noticed where you are from.....we're neighbours, sort of.  Sorry about you having to be here and that you are going through this alone.  Although I have family and friends around me, there are times I still feel lonely because they truly don't know what I'm going through emotionally......that's where these boards have been helpful for me and hopefully they will do the same for you!!    

My dx is very similar to yours and we seem to be going through this at the same time.  My world was turned upside down on Feb 5th with the initial dx of IDC and DCIS........lumpectomy and SNB were done on Feb 18th and final pathology was given to me on Mar 5th.  Margins were close but clear and lymph nodes were clear.  Invasive tumor was 2.4cm, DCIS was extensive and had necrosis present, and both were high grade, 9/9.  Tumor was ER+ (over 80%), PR+ (40-70%) and HER2+++ (over 90%).  Met with my medical onc Mar 17th and treatment started Mar 31st......... 3 cycles of FEC, once every 3 weeks, followed by 3 cycles of Taxotere + Herceptin, once every 3 weeks, with Herceptin continuing for a year, Tamox. for 5 years, plus rads to follow chemo.  

I'm curious to hear about your treatment plan.....is it the same?....have you started?....what have your SE's been?...etc.  Feel free to PM me, (although have to admit that I'm a little IT challenged, so not sure how to do this myself !!!)..........we can help each other get through this!!!!

Live in the moment, remember to breathe, keep laughing......we are stronger than we realize!!!!  

javagirl39

Hi Beach,

Thanks for your post. I just saw it since I haven't been on the discussion boards for some time now. I started chemo in mid April and so far have had 6 of 8 treatments. The first four treatments were AC and the worst side effects for me were nausea, vomiting, mouth discomfort/sores, loss of taste, loss of appetite and fatigue. Hair loss too, but at least that didn't cause any pain. The last four treatments are Taxol. I had some muscle pains/aches after my first Taxol treatment but none so far after my second treatment just a few days ago. I've got two more treatments to go and should be done with chemo by the end of July. Two or three weeks after chemo, I'll be starting radiation treatment for six weeks. I'll also be starting Herceptin every three weeks for a year and Tamoxifen for five years.

How are your treatments going? Sorry I hadn't seen your post much sooner. I think you are right, we are stronger than we realize and I'm learning to live in the moment and keep laughing. Good advice!

Christina

Beach

Christina,

Found your post after I found and sent you a PM.  Nice to hear back from you.  Interesting that we are being treated with such different regimes being that we have such a similar dx and we live so close together.  My se's on FEC were not too bad....slight naseau, no vomiting at all, some fatigue in the first week but good energy in weeks 2 and 3, some mouth discomfort and loss of taste buds.  Unfortunately I gained weight so my appetite was not affected.  Taxotere has been an entirely different story though......today I posted a new topic called "Taxotere - Beware" under "Chemotherapy - Before, During and After".

All the best to you and keep in touch if you have time........HUGS!!

Sandy