Confusion and Worry After Breast Cancer Diagnosis and Treatment Plan

Rene, our cases are very similar. Same type, same size, cancer in sentinel node. I am 59 and was also on HRT. I had made the decision for a double mastectomy as at the time they told me that it hadn’t spread and I did not want radiation. So I was surprised after surgery and I also did 3 weeks of radiation. Radiation turned out to be ok. They want me to go on an aromatase inhibitor (letrozole) for 5 yrs since I am post menopausal. I have not taken it. Too many side affects and there is no guarantee it will work. I could not get any oncologist to answer simple questions. All they say is, “just take it”. I was very turned off by oncology. I feel confident with my decision. And yes, I agree with you. In the beginning they do make it sound simple. Best of luck to you.

I had the same experience with my medical oncologist and ended up requesting a change because of her demeanor and lack of information or validation of my concerns regarding side effects of Tamoxifen. Menopause hit me hard, as well as postpartum depression, so I am very sensitive to hormone shifts. Taking the hormone blockers reduces my risk by 50% from 8% to 4%. Not sure that is significant enough to alter quality of life. Oncologist just said, you need it and then went into to say, lots of people are not on blogs complaining, they are on vacation and playing tennis and doing great. Let me know if you need another pep talk! I requested a change that day. I need someone to listen and collaborate…not just say, you have to take it or else.

I agree completely. I don’t trust them at all and feel like a lab rat so they can get another statistic. Billions have been put into cancer research and the stats haven’t changed. If anything people are getting cancer earlier and earlier. I see my breast surgeon later this week. It will be interesting to see what she says when she finds out I’m not taking them. I sent a email to Outcomes4Me and they said 20 to 50% of women either never take them or start and stop them. I just can’t get a side effect that I’ll have for the rest of my life if I try them and stop.

I have also heard that compliance is horrible, which tells me the side effects are unmanageable. I asked my oncologist why everyone no matter stage, weight, health get the same dose and I convinced her to start me on 10mg of Tamoxifen. I haven’t started yet because of radiation. Thanks for replying, it makes me feel less alone and not so much on a deserted island. Every case is so different.

Finished Radiation and was advised by 2 Oncologists to take Tamoxifin. One said 20 mg daily for 5 years.The other said 10g every other day for 5 years and gave me a 15 year italian study to read where they found out 20 daily or 10 every other day have the same outcome. And the outcome is no guarantee you wont get another ! I checked with 2 surgeons before mine. 2 oncologist and 2 radiologists. If I was buying a sofa I would not but the first one in the first shop! This is our LIFE we have to be proactive.

The shift from feeling like treatment would be straightforward to facing additional radiation and delayed reconstruction can feel overwhelming, and these concerns are completely understandable. Many patients experience this kind of emotional whiplash when treatment plans evolve as more information becomes available from pathology results. Treatment decisions often need to be adjusted based on what's discovered during surgery, and while this can feel scary, it typically means the medical team is being thorough in addressing all aspects of the diagnosis. Consider writing down specific questions about the treatment timeline and radiation recommendations to discuss with the oncology team - having clear information can sometimes help reduce some of the anxiety around these changes.