Hi folks. Just an update on my oncologist appointment today. He said that the spots my family doctor said were worse, are being compared to my bone scan from over a year ago so he said they would be worse as I was still on Ibrance and it had stopped working. He said he was happy with the scan. There is no improvement but he said that realistically I’m not going to see improvement with the amount of mets I have.
He is a little worried that the Mets to the frontal bones in my skull and my face have gotten worse (my family doc didn’t even mention those ). I have a headache for the last month and with those being worse he is sending me for a ct of my head to ensure it’s just bone pain and not in my brain.
Overall a good appointment and he was angry my family doctor had given me results that she didn’t understand. I will just have to stop her from telling me anything from now on.
On a funny note, when he came to the exam room door he was furrowing his brow and staring at me. I said “ OK, what did I do now?” And laughed. He said just checking to see how bright of a yellow you were and you’re looking pretty pale white to me. He then went on to say all my bloodwork was great but it said my bilirubin was 100 times higher than normal. He said I would be bright yellow at those numbers. Apparently somebody messed up recording my numbers. He sent me for bloodwork as soon as I was done with him but said not to worry as it was some kind of mix up.
For the first time since Covid I was allowed to take someone with me to my appointment so my daughter came with me which was nice.
Thanks to everyone for their support and if my ct scan this month shows anything bad I will let you know. Your support means more than I can possibly tell you ❤️
Thanks Sandra. I will see if the CT shows anything and then mention the MRI. From now on when my GP tries to tell me anything I will ask her to stop.
I got an email from Sophie this morning. We have been emailing each other and it’s nice to get to know her more.
As always, Sandra offers good advice, even as she bears her own cross. This is another example of how we support each other.
Thanks for this update. I know how hard it is to share news when our situation changes. I am relieved your oncologist is more professional and informative. I am sorry for the headaches. But I am glad are not bright yellow too! We are here for you.
I am so happy for you Sarcie. Sad you had too wait thinking that it was worse than it was. Enough to give you a headache. I would wait for oncologists from now on.
Thanks for the update! I'm glad to hear that things are looking better than your GP said. I agree that it's probably best to stick with getting results from your oncologist rather than your GP. It will save you a lot of stress too. I hope it didn't ruin your weekend. I sent you an email earlier. Like I said in my message, there's no pressure to respond right away. But I am so happy things are looking better! Let's hope that the scans show no disease progression to your brain. When I had a full bone body scan in 2018 I remember being told that "the skull is empty!" Charming! I can't help laughing about it now though!
Take care,
Sophie
• in reply to
Lol on the empty skull 😂. I received your email and I will reply tomorrow while having my chemo. ❤️
What a relief to hear that news. Happy for you Sarah. Hope your Ct comes out good. I have a feeling it will be bone pain, not mets. I wonder if your GP will be offended if you tell her not to interpret your scans? Might be better to let her say what she wants and just ignore it. Would that work for you?
I have known her for 25 years so I think she will understand when I say I was devastated but found out that my oncologist didn’t interpret it the same way so I would rather wait. She is a professional and should be ok. Thanks ❤️
God bless you, Sarah! And many prayers for a good result from your upcoming ct.
I have to say OMG regarding the two mixups in your reports. As if everyone doesn't have enough stress and anxiety, just throw in the wrong information and watch our blood pressure escalate.
Your post was sort of a wake up call to never fear questioning when you feel that your numbers just don't add up.
Many prayers for you this month, along with hopes that your headaches subside!
Thank you so much Linda. ❤️ It’s sad we have to fight for ourselves, I always thought that was what our doctors did but sadly we have to take care of ourselves even while under professional care.
Yay!!! Glad to hear your news from your oncologist! Also- glad you are not yellow! Sometimes small things like this can make us all chuckle— 100x the normal bilirubin? Anyway- glad your daughter was with you and the news was much better than what you anticipated. Hug to you!
hi Sarcie I am also in a clinical trial and at one point after my first scan I received a call from a nurse coordinator who said my bone scans showed stable. But when I got the report one day later online it showed progression. This was on a weekend so I could not call and question it but I was very upset. But then I found out later that it was an interpretation issue and I could not look at the report and see what they saw. Also a nurse friend told me that many General Practitioners do not want to touch cancer patients. My first GP I liked her at the beginning but then with a couple of subsequent appointments if I asked her anything about the cancer, her response was without looking at her notes from my oncologist who was at a different hospital , she could not answer my question. My nurse friend told me that the notes were all connected between the two hospitals, she knew that because she had worked at both hospitals . And yet the GP did nothing to follow up on that which turn me off. So now I got a different GP who is affiliated with the same hospital so he can't use that excuse. Just an FYI even if your GP misinterpreted the results, I would still want to hear them just to kind of hear the other side of the coin so to speak. But yes when it comes to anything cancer related your oncologist definitely trumps the GP.
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Possible Progression 
New Treatment Plan
Bad report 😞
Bone scan vs. PET scan
Lower Dose Ibrance Still Effective
