So I had my first six month scan done after diagnosis and the start of treatment. The scan results were pretty awesome to say the least. I had my follow up visit yesterday and my onc really kind of confused me. He said my scans were some of the best results he had ever seen and some of the fastest. I asked him does this lend well to my prognosis and he said yes, but remember the median survival is 5 years. So what am I missing? I responded well and responded fast. Should I take his words as saying no matter how well I respond 5 years is all I’m going to get? Keep in mind at my first visit this oncologist said the nodule in my lung was just a little “diddle” and that he saw no reason why I couldn’t have a normal life span. Any insight would be appreciated. He did switch me from Arimidex to Letrozole because of the absolute fatigue and pain. He said sometimes women respond better to one than the other. I’m just 🤷🏽♀️🤷🏽♀️🤷🏽♀️ Second part of scan in comments.
6 month follow up scan : So I had my... - SHARE Metastatic ...
6 month follow up scan
Here is the 2nd part detailing a suspected met in my spine.
5 yrs pish. They can't say that because they don't know. I get scan anxiety every 2 mths with mine. Coming up Jan 14. Your scan say great news, take that and go about your life 😁
Deb 🙏❤
Congratulations for your great scan! Celebrate. No one can predict how long we will be here!
Ummmmm...I would vote for normal life span. Is this the same doctor who told you that? There are so many treatment options out there. And more on the way. Deep breaths! Celebrate a great scan!
Absolutely the same doctor. He had already had pathology report so he knew we were dealing with MBC. He was soooo optimistic, but it seems that the better my response is the less optimistic he is.
Agree, what great results! I'd be delighted if we could get Susie's chest mets to a similar state, I'd be pushing hard to have SRS on the now very small lung nodules to stop them progressing. And also second what Sandra said, no detail on staging, do they assume stage 4, have they told you this? Just needs to be detailed. Great results, long may they continue! XXX ♥️
I asked about targeted radiation and m onc said because of the location of the nodule in my lung it’s not an option.
They said that to us but I've read you can do it. Our ONC said not possible as it's in.the upper hillar but then I read a report that studied exactly that (shared by Sandra, she is so knowledgeable!) SRS in the upper hillar. You have to keep pushing, keep asking, ask lots of different people. Your ONC won't be an SRS expert, find one and ask them. I'm not sure how you share reports on here but maybe Sandra will? I have it downloaded and saved on.my phone. I print them out and take them to ONC meetings so I can back up my argument. He now describes me as "well read" in his letters to other doctors, that's taken 12 months (he would have previously described me as a pain the the arse!)Stay at it, please keep pushing, I do find this is the best advice one can possibly give.
Love and hugs. XXX ❤️
Great news! In my experience the doctors just repeat the accepted reply according to studies. They will not step out on a limb and offer you more time when the reality is that no one really knows. Enjoy your scan results and live each day to the fullest! Good luck to you!
Thanks so much for your kind words. When he made the comment about normal life span we had already had pathology results back from a bronchoscopy, so he knew we were dealing with MBC. So I’m not sure what to make of it. I’m EXTREMELY grateful for the results, extremely. Believe me. ❤️
Thanks so much for your kind words. When he made the comment about normal life span we had already had pathology results back from a bronchoscopy, so he knew we were dealing with MBC. So I’m not sure what to make of it. I’m EXTREMELY grateful for the results, extremely. Believe me. ❤️
I attend an MBC support group. There are several women who have been metastatic for 17, 12, and 9 years. They give me hope. Best wishes.
Gosh that gives me such hope. ❤️Thanks for sharing.
I suggest a second opinion. I live in Rochester NY and work with a local oncologist at the hospital and Sloan Kettering in NYC. The oncologist at Sloan specializes in my cancer, 27-29. I started with a lumpectomy 13 years ago. Then MBC 3 1/2 years ago. Sloan said my cancer would mutate and it did. On Piqray now, but on a break. My oncologist at Sloan said there are always new treatments. He works with my local oncologist. They can’t know all the answers and are happy to work together. Just a note that Piqray causes type 2 diabetes in about 20 percent of patients and I work with an endocrinologist who specializes in this at Sloan. I have a Freestyle Libre to check my glucose. Reach out for the best medical team for your type of MBC. Best for the new year and email Sloan if you need assistance.
Reenie
How would I go about doing that? Who do I email? Thank you so much for your feedback.
I emailed the hospital for a referral.
Great scan. Onc sounds like he needs a brain to mouth filter. 🤣
Your life span will be what it is. How does he know? The main thing is you’re doing well right now.
My doctor talks about 10 year survival. I have decided the ten years starts today—every day.
And then I worry he’s too positive. 🤷♀️
You kind of can’t win on the worry front so the best thing is to try (although it’s hard) to stay in the present as much as possible. 😅
PET scan results
Bone scan vs. PET scan
Feeling fed up
Bone scan 
Scan results are in!!
