I am Stage 1 but the Grade 3 continues to make me nervous

Nicole,

I WAS on Tamox for 18 months, untill I ordered the cy2pd6 test and tested as a POOR METABOLIZER. So the game has changed. Even though poor metabolizers metabolize about 26% of what an extensive meatabolizer would, we don't know if that 26% is going to help keep the cancer away or not. So why take a chance. If I can not take Tamox...the only thing left is an AI.

And, I just got word from the B.C. Cancer Agency, that they will not cover the cost of Femara even though they have a copy of my cyp2d6 test...because its still experimental and they don't know enough about the test. Im in Canada, and the test is not available up here...yet.

They also said that Lupron and Tamox the combo has been studied and its very effective...Lupron an an AI, there are still questions. So..they could even stop my Lupron....<sigh>

The whole situation stinks but you know what? My Lupron was only covered for 3 yrs. That will be July 2011. Then what? Most woman would either just carry on with their Tamox or do an oop and switch to the AI. Well....since I know now the Tamox is basically useless for me...that just leaves me with an ooph.

I have a good idea about menopause. My period stopped while I was on AC, that was Dec 2007. Its been 2 yrs now, and Im use to things....Im actually glad my decision is made. Ooph it is, the decision came a little sooner than planned but hey...why not get things over with now?

Im planning no more kids, my BC is ER+, and.......AND Im scared to death of Ovarian Cancer. Seems like a no brainer for Me...~its off to see the ooph wizard...the wonderful wizard of ooph..lol.~

Nicole..So happy for you that you had fun time with family. I found this for your question.

Have a Good Night my friend.

Sheila

http://pathlabmed.typepad.com/surgical_pathology_and_la/2009/08/the-role-of-cypd6-inhibitors-with-tamoxifen.html

Dear Frosty, My dx also changed. In August my core biopsy indicated DCIS w/ no microinvasion in the left breast (right breast clear), ER+, PR-, HER2 not tested. An MRI, done shortly afterward, didn't reveal anything suspicious or out of line with the above. All the doctors, including my general surgeon, kept telling me that I wouldn't require any chemo/rad and that hormone therapy would be optional since I'd opted for a simple bilateral mastectomy. Had my mastectomy on December 11th, three follow-up appointments with general surgeon, whose clinic dropped the ball with setting my appt. with the oncologist. Finally got an appt. for Jan. 27th, so yesterday was the first time I heard anything about it being invasive, stage II, and that I might need chemo.  (My general surgeon never gave me the path report, wanted me to wait until I saw the oncologist.) So now I'm trying to readjust, like you. 

To rest of forum: Is anyone familiar with what the standard protocol is for my dx if, for instance, my HRC2 test comes back neg? My oncologist suggests Tamoxifen (of course) as well as chemo if the oncotype comes back intermediate or high risk. If low risk, no chemo. Is that about right or too conservative for my stage and grade?

Nicole,

The cyp2d6 test is the Tamox metabolizing test.

http://www.tamoxitest.com/

i am also grade 3,,which is making me wonder what options i will be given..i am er-and pr-..which i do not no much about..i know i will be having radiation,,but will find out more on tuesday..anyone been in my shoes,,and what was recommended to you...

Blueberry - Do you know your her-2 status?  If it is negative as well you are considered "triple negative" and chemo will probably be recommended.  TN breast cancer responds well to chemo and while it is aggressive (grade 3), the recurrence rates drops drastically after 5 years.  Feel free to send me a private message if you have any questions.  So sorry that you've had to join this group, but there are many wonderful women who have done this ahead of you and are willing to share their experiences.  Meece is one of them and at six years out from diagnosis, she's an inspiration to those of us who have been diagnosed more recently.

Hi Ladies,

I am new to this BC thing.  I had a lumpectomy on Feb. 25.  I was told I had a 4.5cm tumor. Grade 3 no node involvement.  On March 17 I met with a treatment team at our local hospital.  At that meeting they said the tumor size was 1.5-2.0 cm.  They think the pathologist measured the original biopsy cavity (stereotatic biopsy) instead of just the tumor.  So as of now my diagnoses is Invasive ductal carcinmoa, Stage 1c, grade 3, ER+PR+HER2- with 1 unclear margin.  I have a second opinion set up for April 5 with a surgeon and April 9th with an onogologist.  The doctors i have met so with so far are recommending re-excession, with radiation.  I am opting for chemo because of the unclearness of the size of the tumor.  I am undecided on whether to do the lumpectomy or the bilateral mastectomy.  Can any of you fill me in on why you opted for lumpectomy or mastectomy.  As hard as the waiting has been, I think it is harder trying to decide which surgery to do.   I have been sitting here reading all of your stories and am very thankful to have such a wonderful resource.

Thanks Ruth!  Did you have radiation and chemo after your lumpectomy?  Do you worry all the time about the cancer coming back? 

Thanks Ruth.  So much to think about. I'm so anxious to meet with the other doctors and get everything started!

has been about 7 years out for me, was stage 1 grade 3 with possible lymphatic invasion, did lumpectomy and rads, no chemo or tamox, Good luck to you, is such a personal choice.

I also had a lumpectomy and a re excision, followed by chemo and radiation.

Im ready to celebrate my 5th year Anniversary next week.

Sheila

Yes Redbarb, I got Neulasta shots day after chemo.

Its not a bad thing, It gave me bone and muscle pain for 2 days especially at night time.

Since I wasn't aware of that I didn't know why it was happening. Oncologist told me to take some Advil (My choice of pain killer) and it didn't bother me much.

The cost is very high. When i first started insurance wasn't covering it. I'm talking about almost 5 years ago. Now its a routine injection.

At the beginning They were giving me the neupejon (sp) shots but i had to go 4-5 days in a row to get the shot. Did the same thing , it was cheaper $800.00 a shotx5=$4000.00

Neulasta is much more expensive but you only get one dose.

After the second one Insurance covered it.

Thanks Ruth.  What age kids do you teach.  I also teach and am concerned they won't let me teach because of the germs and fear of infection.  I teach 4 year olds.  My doctor talked about once a month for 4 months.  I might double check to see if they can do the does dense chemo to get it done because after chemo I will have 61/2 weeks of radiation.  Did you give the shots to yourself or at the doctors office?

Thanks Shiela, I'm pretty sure my insurance will cover my shots.  Of course we just got new insurance in Nov.  due to our old insurance going up 50%  The old insurance we had had no deductable and they paid 100% of everything.  I guess that;s what you get for trying to save money. 

Did you guys lose your hair when you went through chemo?  I keep hearing that not everyone loses their hair?  I'm not overly concerned about losing my hair I just want to be prepared about how far into chemo you lose your hair so that I'm not caught off guard,  Thank you so much for all your input.  This is all so new and I want to get as much info as I can so that I know I am doing everything I can to get through this as easily as possible.  It;s really tough when you have a 12 and 14 year old at home who have to deal with this too.

When I went for my treatment team meeting on March 17, the onogoligist talked about AC.  He did say I would lose my hair, but I didn't know if everyone did or not.  I'm pretty sure he said once a month for 4 months, but neither my husband or I wrote down exactly what he said,  We were so blown away after being told the tumor wasn't a 4.5 cm, but a 1.5 -2.0 tumor that we didn't take as good of notes as we should have.  Since then this website has been blessing.  I will check out this other thread.  Thanks

Oh yeah, you go back the next day and they give you the neulasta shot at the clinic.