Need Advice

[cocquk2]

Hello All;I'm new here and would like some blunt advice. Feb 7th i had a lumpectomy and 3 nodes. Nodes were clear and margins around the 1 cm cancer were clear.So i think i'm good. Little radiation and on with my life.I meet with the cancer clinic in 2 weeks .Someone asked me if i was Her2 positive.So i have pulled the papers and yes i am and also estrogen and progesterone positive.One of my questions is will they tell me i need chemo? I want to be prepared as to what they may tell me.Any info would be wonderful.Thanks Kathy

[suzan w]

Hi Kathy...you can see by my "story" at the end of this post what my treatment has been so far. I took the path of getting the most agressive treatment I could, and I have an oncologist who believes in that! Good luck!!! This is a great forum with tremendous support!

[AlaskaAngel]

Kathy, you can take a look at this link and work your way through the information including staging. The answer is likely to be that chemo is recommended. I know it is hard to take that in and I'm sorry for that.

After completing chemo, you likely will also be recommended to do Herceptin, also known as trastuzumab. A newer drug that you might want to consider instead is Tykerb, also known as lapatinib, but it is only available as part of a clinical trial.

http://www.nccn.org/patients/patient.../3_work-up.asp

-AlaskaAngel

[MJo]

I also got aggressive treatment, and you can see from my signature that I was node negative with a small tumor. What I read about Her2 cancers made me decide to be aggressive one year ago. Also my Oncotype score was 32 -- at the beginning of high risk. I recently read that an Italian study found that 25% of node negative BC patients in the study had cancer cells in their bloodstream. This despite being node negative. That also makes me glad I was aggressive. It depends on how much risk you are comfortable with. My Oncotype score gave me a 22% chance of recurrence. My oncologist told me that many women would have taken my risk and turned down chemo. I wasn't comfortable doing that. The Oncotype DX test looks at genetic information on the tumor. It's very expensive. If your insurance covers it, ask your doctor about it. On the other hand, I've heard that ALL Her2 BC tumors will score high risk on the Oncotype due to the Her2 factor. All the very best, whatever you choose.

[Jean]

Dear Kathy,

Welcome to the board....you have found a very special group!
It sounds like you are an early stager....there has been many
changes in treatment in the last two years. Many early stagers
are now given the choice to treat their bc with more than radiation
and adding to their treatment decision chemo/herceptin. I as a
stage 1 decided (after a long battle with onc in NY) to have chemo/herceptin
after my lumpectomy / radiaiton. I had decided to have 2nd - 3rd opinons,
funny even after the 3rd one my instincts still felt something was wrong.
After research of her2 I was concerned about dealing with the disease.
I decided to visit with Dr. Slamon in Calif. He was the only one who
advised chemo/herceptin...so glad God sent him in my life.

The decison of treatment should be made with lots and lots of information
and done carefully. For me I knew that if I had a recurrance and did not
have chemo/herceptin I would always feel that I did not do everything I could
for myself. Wish I had a cyrstal ball for all of us on this board!

When I was first diagnosed I thought I knew what bc was - but I soon
found out there were different kinds (who knew) and sub-types. By learning
everything I could I started to gain control of my disease and calm down.
Funny when I had my first visit to the dr. after surgery my husband and I were told, "Your cured, your tumor was very small and we caught it all early"
My husband had such a smile of relief and I just sat like a stone on the table.
I asked the Dr. "When did they find a cure for cancer? I missed that in the news"....all this from a great hosptial and dr. Crazy isn't it. That was my
beginning and I knew I had better find out as much as I could. So the treatment and journey begins.

Ask a lot of questions - take a freind with you or someone who can
be of help with getting information. Most important think positive
and know you can reach out here for all the support you need.
Do not worry about chemotherapy horror stories it is doeable as you
can see from this site. Do your research, the ultimate decision is
yours to make. You will do your best! Wishing you the best and will
keep you in my prayers.

Kind Regards,
Jean

[Jean]

Kathy,
Please keep us posted and let us know how you are doing.

Hugs,
jean

[rinaina]

I was an early stager diagnosed in March 2006. You can see my info below. I was told by my onc and surgeon that without a doubt, I should have chemo, radiation and then a year of herceptin and after carefully and thoroughly researching here and on my own, I came to the conclusion that I wanted to do all I possibly could to increase my chances of not getting a recurrence or a metastasis, so I did it all. I am still receiving herceptin and so far doing well. Good luck to you on your decisions. The decision making process can be so much easier if you do a lot of research and you came to the right place for that as well as for great support. There is definitely a lot of comfort in knowing you can turn to these wonderful support forum members for anything and always get an answer or a referral or more info. Keep us up to date please.

Hi Kathy,

I believe the National Cancer Guidelines, used by many oncologists, is that if the cancer is 1 cm or greater, and is HER2 positive, treat with chemotherapy. I will look about to see if I can find the website and I will post it on this thread so you can read the guidelines for yourself. My tumor was small, 5mm, and my oncologist recommended chemotherapy. He told me that if it had been 1 cm, he would not have given me the choice (although how he could do that is beyond me).

Good luck!

[cocquk2]

Thank you for all your information. Last night I had myself a pity party.Good thing i was out of wine so i had tea and a good cry.Today is a new day and i need to plan and get informed.I go to the cancer clinic in 2 weeks and i will keep you up to date.I'm sure i'll have more questions.Thanks again.

[astrid]

My ONC said anything over 1.5CM should have chemo. You are young, but your tumor is small. I did a lot of reading because even though my tumor was 1.8 CM, I wanted to ensure that chemo really improved my out come enough to warrant its use. This was a year ago and I know they now have tests that can really determine if adjuvant therapy (chemo) is appropriate for you. Chemo does not help the near term reoccurrence as was proven in my sister who was stage 1C node negative ER/PR+ like me and reoccurrence in the first year and died in 2 ½ years. Chemo helps longer term survivability. I read that chemo doubles the survivability rate in 10 years and triples in 15. Well I am 48 and you are 42, we want to be around for 15 more, so talk to your doctor about the new testing to see if you are really a good candidate for chemo. Family history is also a consideration. One other thing, being ER/PR/HER2 ++ is a good thing, they know how to treat this diagnosis.

<?xml:namespace prefix = o ns = "urn:schemas-microsoft-comfficeffice" /><o></o>

One other thing, I was node negative so I joined a clinic trail designed for node negative women to see if AC or Taxol as a stand alone drug was as effective as the standard treatment of 4 rounds of AC flowed by 4 rounds of Taxol. I had 6 rounds of dose dense Taxol every two weeks. I am not sure if that trial is still open.

[caya]

Hi Kathy (from a fellow Canuck - Thornhill, Ontario)

I was diagnosed in October 2006 - 1.7 cm and 1.0 cm tumors - stage 1, grade 2, ER+/PR+ HER 2+, 16 nodes negative - I had a MRM mastectomy on Dec. 18, 2006, and had my first chemo on Jan. 25, 2007. I am being treated at Mt. Sinai Hospital in Toronto with FEC-T, ( 3 rounds of FEC, every 3 weeks, then 3 rounds of Taxotere every 3 weeks), then I will be on Herceptin for a year, again once every 3 weeks. May be getting Tamoxifen as well. I am 48 years old and did not question getting chemo etc. You want to fight this monster with everything you've got - HEr2+ is a more aggresive cancer, but we early stagers now have the benefit of Herceptin to fight it, with wonderful results in trial reports recently published.
I've had 2 rounds of the FEC so far, side effects not too bad - some nausea and weakness the first 3-5 days after the treatment, some neuropathy after the second treatment, and of course the hair loss - I feel the chemo is doing its job. I guess you would be treated in London- my daughter is a Western there in 3rd year. I know they have terrific medical facilities there.
Please keep us posted.

All the best
Caya

[astrid]

Try powered L glutamine for the neuropathy