trust your intuition, listen to your heart
Dear friends and breast cancer community,
Immediately after my diagnosis, I experienced the same sense of fear, shock and bewilderment that many of you probably felt at your time of diagnosis. Breast cancer was simply not on my radar nor in my vocabulary. After my diagnosis, I spoke with one or two trusted friends, and despite the fact that I come from strong alternative health and healing traditions, I immediately decided to trust the western medical community. I felt that alternative therapies would be essential for my post-treatment healing and recovery.
However, I was not prepared for the discrepancy between doctors in the recommended course of treatment. Firstly, I received different advice from two doctors on the same oncology team. The radiation oncologist insisted that I take part in a neoadjuvant clinical trial while my surgeon said that there would be no benefit to me. Because they were in disagreement, I had to rely on my own intuition, and not the collaborative advice of both doctors. Since the imaging showed a tumor of at least 5 CM, I decided that I would not purse a clinical trial to see if my tumor shrank before surgery. I did not want to wait several months before removing such a large tumor. The radiation oncologist, as well as my partner, continued to pressure me into considering the neoadjuvant therapy clinical trial.
Thankfully, my partner helped me see that a second opinion was in order. The second team who evaluated me respected my decision without pressure. In fact, when the tumor was removed, it was found to be 5.5 CM, and there was evidence that the cancer spread to my sentinel lymph node. In one month, my diagnosis went from IIA to IIIA.In my post-op visit, my surgeon commended me on listening to my heart and my intuition. Somehow, I knew that I should not wait around to see if the tumor shrank.
The moral of this story: seek the advice of the best medical teams you can access. Then decide what is right for you. It's your body, your life, your call. This disease is giving you an opportunity to trust yourself. As I wrote in the beginning, this does NOT mean you shouldn't trust your doctors. This post is also not a indictment of neoadjuvant therapy clinical trials - it just wasn't right for me. If something doesn't feel right, go for that second opinion, if you can. It made all the difference for me.
Sending out positive healing thoughts to those who are finding the way through a diagnosis of breast cancer.
Comments
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That is a fantastic example of the importance of trusting yourself and going ahead with what is medically right for you. I haven't started my treatments yet, but I know I will have to do what feels best for myself and my family.
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gardengypsy, thank you for sharing this powerful story of following your instinct after gathering all the information. kayb, you too, for pushing for additional information, and also making the best decision for you! This is great advice for anyone out there just starting the process!
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kb
I forgot to mention that the neoadjuvant trial recommended to me was endocrine therapy, not chemotherapy.
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What if your intuition says to refuse chemo?!? Any of you ladies out there? I'm at odds but moving forward as if chemo is my final decision as I research and get a 2nd opinion. kayb I'm triple positive like you! I just wish the option of having surgery + hormone therapy + Anti body therapy (herceptin +Perjetta) was an option. What was your treatment plan?
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It's my understanding that HER2+ cancers--even triple-positive--are more aggressive than ER+/HER2- ones; therefore, forgoing chemo in favor of hormone-plus-targeted-therapy can delay effective treatment and risk metastasis.
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I would add to the title of this thread - "Trust your intuition, listen to your heart, DO YOUR RESEARCH!!" As kay said, gather all the info you can, ask plenty of questions and see what resonates with you. Get second or even third opinions. If after all that there's not a clear answer (and too many times there is not) then at that point it has to come down to a gut decision.
When I was making the decision whether to go with or decline rads (I was in a borderline grey area) one of the rad oncs I consulted gave me some sage advice. I had a few weeks before I needed to make a final decision, so I had some time. She said that once I'd gathered all the info I could, I was to set a definite date a few weeks in the future as the day when I'd make my decision. Until Decision Day, I was to try to not to think about it. She said that gives the subconscious mind a chance to digest everything that it has learned. When Decision Day comes, make your decision. Re-visit that decision in one week - if your gut is telling you that it's the right decision, then it's the right decision.
I followed her advice, and when Decision Day came, I made my decision with remarkably little angst. It's like I already knew what it was going to be by that time. It really helped to try to turn off my conscious mind to give my subconscious a week or two to process it all.
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