Arimidex, stageing, markers HELP

Auds
Auds Member Posts: 2
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Had bi-lateral mastectomy 07/2009. Multicentric lobular carcinoma: 2 tumours (1 = 20 x 15 & 2 = 10 x 15). ER+ PR+. BRCA2 positive. 17/23 lymph glands positive metastatic disease with extranodal spread. Just completed chemo: 4 AC & 4 Taxotere. First tumour marker was 8.1 before 1st chemo. After 4 AC cocktails markers went to 9.4. Now after 4 AC & 4 Taxotere, markers gone to 17.9. Thought if chemo's working markers would drop???? Now scheduled for radiation, and Arimidex and Zoladex. Don't know these meds - what side effects to expect? Am PREmenopausal (was menstruating regularly until after 2nd chemo). Is Arimidex not for POSTmenopausal women? Also, what is my correct grading? Pathologist I spoke with says stage 111C - is this correct? Then want oophectomy & radical hystorectomy done. Then 5-7 years on Tamoxifen??? ANY ADVICE PLSE!

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  • Gitane
    Gitane Member Posts: 1,885
    edited January 2010

    Hello Auds,  So nice to meet you even if it must be under these circumstances.  There is so much information to take in when you are in that first year after diagnosis.  You are well on your way though and have completed a huge part of your treatment.  

    I will try to answer what I can of your questions.  For your "grading" you look at your pathology report.  Somewhere on there the pathologist has stated the grade as 1, 2, or 3 based on how the tumor cells look under the microscope.  In terms of "stage", I think you would be stage IIIc based only on the number of positive nodes, no matter what the tumor size.  Your tumor size is based on the largest dimension of the largest focus, in your case 20 mm.

    I copied this info about tumor markers from the American Cancer Society's web site.

    CA 15-3CA 15-3 is mainly used to watch patients with breast cancer. Elevated blood levels are found in less than 10% of patients with early disease and in about 70% of patients with advanced disease. Levels usually drop if treatment is working, but they may go up in the first few weeks after treatment is started. This rise is caused when dying cancer cells spill their contents into the bloodstream.The normal level is usually less than 30 U/mL (units/milliliter), depending on the lab. But levels as high as 100 U/mL can sometimes be seen in women who do not have cancer. Levels of this marker can also be higher in other cancers, like lung and ovarian, and in some non-cancerous conditions, like benign breast conditions and hepatitis.CA 27.29CA 27.29 is another marker that can be used to follow patients with breast cancer during or after treatment. This test measures the same marker as the CA 15-3 test, but in a different way. Although it is a newer test than CA 15-3, it is not any better in detecting either early or advanced disease. It may be less likely to be positive in people without cancer. The normal level is usually less than 40 U/mL (units/milliliter), depending on the testing lab. This marker can also be elevated in other cancers and in some non-cancerous conditions, and it is not elevated in all patients with breast cancer.

    To answer your question about hormonal treatment.  If you are premenopausal you will probably be given Tamoxifen.   Aromatase Inhibitors like Arimidex, Femara, and Aromasin are used by postmenopausal women, but can be used in premenopausal women if the ovaries are not working. I don't know how many years one should take this treatment; that is still an active area of research.  Most of us take something for at least 5 years, and some of us, now, are being encouraged to take these treatments longer than that.

    I sympathize with all the difficulty that goes with trying to understand all this.  I am still researching, reading what other people say, talking to my doctors, and learning something every day.  Big hugs going out to you as you make your way through all this.  Please come here for support and let us know how you are doing. 

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited January 2010

    HI Auds,

    Do you know which tumor marker test you were getting?  There are several possibilities, but of the ones I am aware of none of your numbers would be outside the normal range.  First off, let me say that many oncs do not put a whole lot of faith in tumor marker tests.  They are just  not all that accurate, plus they can be affected by many other things besides the presence of cancer.  Most of my reading says that especially during active treatment and for a period of time following active treatment the results can be falsely elevated.  The other thing to remember is that small changes in the actual point values is just nothing to be concerned about.  The only time a tumor marker test will make the onc sit up and take notice is if there is a large, uncharacteristic change in the pattern of results.  Some people can also have large amounts of local cancer present and still have normal tumor markers.Typically a large jump up (into the 100's) would be significant of possible cancer spread beyond the local region.

    I had a 5.1 cm ILC, had bilateral mastectomy, 23/23 nodes positive with extranodal extension also and my tumor markers have always been within the normal range for the CA27:29 test which is the one my onc uses.  Normal range for that test is anything under 40.  My results have ranged from 12 -38 over the last 4 years.

    I am a little confused why your doctor says you will be getting Arimidex during treatment now and then he plans to put you on Tamoxifen AFTER your oopherectomy?  Usually, it is Tamoxifen first while you are still pre-menopausal and then switch to the AI's - Arimidex, Femara or Aromasin. Some oncs are currently choosing to have women take Tamoxifen for a year or two first (when they were premenopausal but put into sudden menopause due to chemo) and then switch them to the Aromatase Inhibitors for 5 or more years after the Tamoxifen.  Yes, I believe your correct staging is IIIC because of the number of nodes involved.

    Because of your BRCA2 positive status you need to treat your cancer aggressively.  Having the oopherectomy is certainly the recommended protocol since you are at higher risk for ovarian cancer than a woman who is not BRCA positive.  I personally think you should also have a serious discussion with your doctor about starting on IV Zometa now even during your radiation treatments.  Zometa is rapidly proving to be a significant drug to help prevent breast cancer mets.  You can do a search on these forums and find lots of info on Zometa.

    I know things seem scary right now.  Anytime we have a pathology report with negative indicators, it is easy to think we are doomed.....but please believe that you CAN beat this!  Many, many women with similar pathologies are still around to tell it years later and continue to be NED.

    Don't be reluctant to ask as many questions as you need to your doc about the treatment plan.  Make sure you understand the logic behind the decisions and let him know that you want to have an active role in your treatment decisions.

    Best wishes.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited January 2010

    Why do they want to do a hysterectomy? 

    Our family has the BRCA2 2024del5 mutation.  We (especially my daughter) have done some research on this mutation and we've gathered as much family history as we can.  I know each mutation has differences in cancer types and risks depending where it's positioned in the gene.  And, unfortunately, there is not a huge amount of data and history on all the mutations to get a stronger picture of risk for a specific mutation.  In our case we've found 7 families referenced in studies.  But when we look at our own family we see breast, prostrate, pancreatic and stomach cancer.  All appear to be related to the mutation. 

    Having said that, my aunt died of cervical cancer which has not been tied to this mutation from a study standpoint.  However, I plan on only getting the double mastectomy and the oophorectomy (I'm expecting them to want to remove the fallopian tubes with the ooph).  Pap smears have been demonstrated to be very easy and effective to detect cervical cancer so I'll be using that as my strategy. 

    So I'm just curious why you are getting this advice.  The idea of a hysterectomy along with all the other surgeries seems kind of extreme.

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