From the moment I see the familiar buildings of where I had my treatments, consultations, and follow-ups, I immediately get hot, shaky with nerves and want to burst into tears. Then I park. I haven’t even opened my car door and already filled with so much emotion.
I haven’t written in spell because I’ve had many doctor appointments and needed to absorb all the information being thrown at me. I have a new oncologist, had a horrible experience with a new dermatologist and recently met with my amazing plastic surgeon in the past three weeks.
I’m now on my 4th and hopefully final oncologist. I decided to go back to Piedmont Cancer Institute and left Emory Winship Cancer Institute. I also went back to having a male oncologist rather than female, especially after the horrible experience with the female oncologist at Emory.
I refused to accept what the Emory oncologist was telling me. She said since I’m allergic to Tamoxifen, Evista, Lupron injections and Arimidex, there was nothing else she could do. I’ve felt so angry, scared and just horrified that an oncologist would say that and then ask, “So why are you here if you don’t have cancer anymore?”
It was that moment where I realized there is no real guide for post-treatment. At which moment do you stop seeing an oncologist and get handed off to your primary doctor? I had to take time to think about this and gather more inner strength to start the advocating process all over again.
Thanks to some recommendations from my cancer support groups, I decided to go back to Piedmont and meet with a new oncologist. I met him on January 22nd. I had four fellow warriors recommend him. They were right! He IS fantastic! He came in prepared. He has a sense of humor. He didn’t talk down to me. He was compassionate but also real with me. He said I ABSOLUTELY need to be monitored by an oncologist for 10-15 years. He was horrified by what that Emory oncologist told me. He said he had TWO options for me to consider, and that it wasn’t too late to start another post-treatment medication.
I immediately started crying because I felt HEARD!!!! I’m almost at my three-year mark of being NED (will be on 3/28). We talked at length about a plan of action, especially because my cancer was 100% ER/PR +. Even with the hysterectomy and oophorectomy, I still need hormone therapy. His facial expression when I said I haven’t been on any post-treatment medication since June 2017 was one of fear and amazement that I haven’t had a recurrence.
So, I am going on my third week of Aromasin. It’s been strange starting this medication while also being on an intense regime of prednisone for a dermatological issue. I just started feeling some side effects from it on Sunday. If you’ve read past posts, you will know I had horrible reactions to other medications, so I’m a wreck about trying this new one. I’m already feeling the stiff joints in my arms and fingers. I’m thirsty, but I think that’s in part of the prednisone, too. My sleep is completely off.
Yet, I still feel hopeful. Why? Well, my body has had time to heal from the many, many surgeries. I think it’s ready to handle a new treatment. Plus, since I now have Fibromyalgia, the pain from the Aromasin won’t be as challenging to handle since I’m in chronic pain every day.
I shall end here for the moment because I must get ready for work. That will have to be an entirely separate post. lol I will come back and write about what happened with the dermatologist and detail my appointment with my plastic surgeon that I had yesterday.
So stay tuned for more updates this week…I shall call it Part II.
Life On The Cancer Train continues…
Until next time,
Warrior Megsie
I’m so glad you are now with an oncologist who knows what he’s doing! Sending love and light to you today, dear friend.
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I am so glad you got another opinion. I couldn’t do Tamoxifen or Evista either … i started on Aromasin, went to Arimidex and finally landed with Letrozole. I did not have a true allergy but could not tolerate the others. Keep the faith. My main side effects are joint pain and stiffness, and sweating … over time it has evened out!!!! 🙏 glad you found someone who will listen to you!
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I’m so glad you found a doctor that listens to you!! I know how important that is.
I have terrible arthritis and no cartilage in my knees. I’ve had cortisone and gel injections but they don’t work anymore and I’m “too young” for knee replacements. I was also in constant pain until I found a cream that truly works. It’s called Penetrex and you can get it at Walmart, Amazon, and Penetrex.com. I could barely go up or down stairs before without excruciating pain. I told my primary care dr about it and she said it’s all natural anti inflammatory ingredients. Everyone I’ve told about it has had awesome results within a few days. I use it once a day now and I’m pain free 😊. No more pain pills that didn’t work anyway.
I have no affiliation with them, I’m just passing on info to help others. Chronic pain is horrible. Hope this helps you and others who read your posts.
Take care 🙏🏻😊
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My dear friend I wish for you a pain free life. I am happy that you are getting some answers. I took tamoxifen for 6 months and my liver enzymes went so high they were afraid of liver failure. I am on Lupron injections with anastrozole and so far that seems to be working. I have a friend who tried 6 different medications until one was tolerable, sending lots of love and light.
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