Considering skipping hormone therapy

Hi Darlene.  I am 62 and have had lumpectomy and SNB and am now on Arimidex.  My tumor was .6cm, clean margins, very well differentiated, stage/grade 1.  And, yes, my onc said I, too, am in the grey area.  I am really struggling with the Arimidex.  I cut it in 1/2 and take it every other day.  I am very small and just can't do the whole dosage.  My onc said he was okay with that even though there is no evidence of effectiveness with a smaller dose.  He is okay because of the diagnosis.  If it were different he would not be okay with that.  He did say that if it interferes with my daily activities to stop it and I would go to Tamox even though I am postmen.  He then said if I couldn't do Tamox that I could do Evista (this does not effect recurrence, though).  So - he said that with my diagnosis it is really a crap shoot as to what helps or not.  I think you need to talk to a couple of your oncs and also look at the "I Quit" thread.  Many people there talk about what they are doing instead of the AIs or Tamox.  

I'm still damned if I do and damned if I don't.  I wish I could make a good/peaceful decision, but haven't reached that stage.  I have been on the Arimidex for almost 4 months.

I wish you the best. E 

Darlene,

Did you have an oncotype test. This test gives a score about future recurrence.

 I was told over one centimeter is the cutoff. Mine was 1.2 cm so I will have chemo and take homones. My oncotype score was also high though. BTW my nodes were clear.

If one can live with a recurrence and not say I should have done this or that it is a good decision. If you are the kind who would have regrets then the decision is easy. I feel that whatever I can do to prevent a recurrence I will do. I am 61 and my doctor said I am young so I should do some adjunvant therapy.

If you are ER/PR positive, hormone therapy is probably the most effective part of your treatment, esp. if you haven't had chemo.

Darjo, where is the topic "I quit"

Thanks,Jeanie

Darjo, my oncs told me the same thing, that they would only do the onc test if I was part of the arimidex study, otherwise, I would have to pay for it. I decided not to do the test or the study because this made me so mad. Someone told me later that I could have had the onco test and bowed out at any time from the study, but they did not tell me this at the time. It really mad me furious then. I felt like they just wanted me for their study and not for my own good.

Crusader it was interesting that your onc told you that over 1 cm meant automatic chemo, because my onc said it would be 2 cm. My tumor was 1.6 but since my margins were wide and nodes were clear, she did not push chemo. On er+ chemo doesn't always have any benefit from what I have read.

Hi Darjo.  I think your onc's behavior was completely unacceptable and immoral.  The choice, ultimately, to have or not have chemo or whatever is yours. If you wanted the test you should have gotten it.  My rad and med onc said the test was not necessary for me.  My surgeon wanted me to have it, but I went with my oncs suggestion.  However, none of them "controlled" my options the way your onc did.  I think you should look for a different onc unless she is outstanding in other ways - just my opinion.

Good luck.  E 

i certainly would not discount the body of research, the devotion of a health professionals committed to fighting cancer, the studies of women who have responded to chemos, drugs and radiations, and the multitude of women alive today because of the treatment they've undergone, to rely on my uneducated judgement and knowledge base.

i am living in one big grey area and am VERY grateful that i am still alive..

my onc. always makes it seem as if I am the one making the decision to pursue my treatments.. but i kind of know better.  i'm glad she's in charge.

Mouser:

 Can you elaborate at all on why you said your stroke risk was high?  I don't know what to do. I have fibromyalgia so Arimidex is pretty much out for me.  It can also raise cholesterol so that's another no-no.  I have diabetes, high cholesterol and high blood pressure (both under control with meds) so I am already at a high risk for a heart attack.  Not sure about stroke but my father and sister both had clot histories.  I have made difficult decisions all along this road but this one is killing me.  As far as I can see, the oncs just care about "disease-free" survival and not overall survival.  What good does it do if my cancer doesn't come back but I die of a heart attack?

My mother's next door neighbor was on Arimidex, had to get off because of excruciating bone pain and the bone pain never went away.  So sometimes a person can have long term effects even if they decide to stop the treatment.

Peeps

You must do what is right for you.  However, before you make the decision, you might want to help with someone undergoing hospice.  You need to be sure that you want to take the risk of the cancer being back and you need to fully understand the implications before you make the decision.  I for one, after watching someone die from cancer, do not ever want to willingly let that genie out of the bottle.

I hope all goes well for you and things work out well.

Darlene I would really not consider skipping hormone therapy. If you have micromets then it is an indication that your cancer was possibly on its way to becoming systemic. Did you have lympho-vascular invasion? 25% of women with no lymph involvement will still go on to develop mets.

For some early stage ER+ cancers hormone therapy is more effective than chemotherapy. Hormone therapy is a very powerful weapon against this evil disease - make sure you are fully informed of all options before you decide. I am taking Arimidex and am astounded by this drug. A friend with mets is only being treated with Arimidex and her tumours are shrinking when chemo didn't touch them.

It should state on your path report whether you have lymphovascular invasion or not. It is a prognostic indicator and will influence the oncologist's offer of chemo but it is a slightly foggy area. In general it is better not to have it than have it!