No Tamox - Onc not concerned

Lindy323

I decided not to take Tamoxifen and my Onc said nothing.  I've had no scans, blood work, just follow up appts every 6 months. My oncotype score was 19 and so I didn't do chemo either. I guess I expected to be scoulded for not taking Tamox. Should I be glad or concerned about "her" lack of concern?

ProudMom_Wife

Hi Linday323,

Since you are Stage II, Grade 3 and decided not to take Tamoxifen, my opinion (with no medical background to speak of), is that you should have a discussion regarding other options available since you are ER+/PR+, such as possible suppression of your ovaries or using DIM, Grape Seed Extract, etc...  Also if you are not comforable with the recommendation for follow-up care I would also seek a second opinion if possible to find out what another oncologist thinks.  You need to be comfortable with both your treatment and follow-up care.  

Best wishes. 

peggy_j

Did your MO discuss the risk of recurrence and your expected benefit from each TX option (chemo, tamox, etc)?  Do you know if you're highly ER+? My MO and I discussed the pros and cons so I understood her recommendations, but ultimately the decision was mine. If I were in your shoes (feeling a lack of concern from the MO) I'd probably seek a second opinion.

thegoodfight

Lindy323,

I see you were diagnosed almost two years ago so I am curious why the questions about treatment decisions now?  I also have no medical background, but I do not think you could change anything about your decision at this point of your journey.  I believe chemo, rads and AI inhibitors have to be started within a reasonable time after dx.

I am also a grade 3 and node negative, but my tumor was larger, 3.5cm.  My oncotype score was 18 but I had the chemo because of the high agressive grade of 3,  I also did 35 sessions of radiation and I have been on arimidex for almost 3 of the 5 years I will be taking it, if not longer.

I am glad you are being seen every 6 months but I am wonder what diagnostic tools are being used.  You said no scans, but do you get mammagraphys and MRI's.  If not,  what does your followup visit consist of. 

I can only go by my experience, but I think it mirrors closely most of the women here.  For the first 3 years I saw my onc and had bloodwork done every three months.  I have now graduated to every six months and also  alternate a mammography and MRI every 6 months.

Personally, I think you should be getting more attention.  Did you get a second opinion?  If not, why not consider one now, if nothing else it will put your mind at ease if another onc concurs.

Please keep us posted...................wishing you continued good health.....................Caren