Ct scan

[Zebra2018]

Hello ladies, I diagnosed with bone met on neck last October after 7 years of Ned. Last x-ray on April showed that, the fracture on c4 is healing and ct scan from whole body on May first was good news except it said:

1- 7*6 mm nodular in left lower lobe on lungs with benign appearing

2- 7 mm lucency in the manubrium

Yesterday I had appointment with my oncologist, I thought he is going to order new scan but, he said no need for it and I order one toward end of the year. I feel ok now but I am worried that if I wait, it is going to be too late! I am on Ibrance 125, faslodex and xgeva shut every 28 days since last December (almost 9 months). do you think I should insist on getting CT scan now?

Please share your opinion with me

I really appreciate your response

Worried in Virginia

Sima ❤️😢

[nstonerocks]

I would not presume to tell you not to get a scan. However, your scan is recent, and the meds your doctor has you on include what I am on for lung mets: faslodex and ibrance. Take a deep breath Discuss your reservations with your doctor. I am sure he will give you a reassuring rationale for his plan of care.

[Zebra2018 in reply to nstonerocks]

Thank so much, some how I thought, the protocol is getting ct scan every 4 months. Actually I liked your argument better than my Oncologist! I see him every other months. I will discuss the issue again with him next time. How often you get scan?

[nstonerocks in reply to Zebra2018]

I am 5 years in. Initially 9 mos to a year. But had scan in Jan/Feb and now completely scanned (with mammo's and sono) just now. Initially treated with course of Abraxane (taxol). I have been relatively stable on meds. Switched from letrozole and ibrance to faslodex and ibrance about a year ago. I don't know that there is a precise protocol. so far my onc has been spot on. Fingers crossed!

[Zebra2018 in reply to nstonerocks]

Oh, great five years is a mile stone(knock the wood). Thank you for sharing your experience with me. I wish you best of luck on this journey.🙏❤️

[nstonerocks in reply to Zebra2018]

Thanks. You too! I know of 2 women who are over 12 years. And they were diagnosed before Ibrance and a lot of these newer drugs. Good luck to all of us. 😘

[Zebra2018 in reply to nstonerocks]

😲🙏❤️

[BangorBelle56 in reply to nstonerocks]

I might have asked this before, but what are your mets please x

[nstonerocks in reply to BangorBelle56]

Lungs

[BangorBelle56 in reply to nstonerocks]

Thanks

[mariootsi]

I would discuss this with your onc.

[Zebra2018]

Hi Sandra, yes it is! The reason more than this nasty disease is, I don’t trust them any more! Actually I find your answer more convincing than his!? Thank you so much for your response. You are a valuable member of this group. I know that in the meantime there is no cure for this disease, but I wish you best of luck, and thanks again for giving me comfort.🙏😍

[Pollingxx]

Every 3 months I would say x

[Zebra2018 in reply to Pollingxx]

Thank you 🙏

[Francesca10]

Honestly depends on pushing. My last pet was nov 2018. I started having back and rib pains- mri was done because I pushed. Then another pet in july doc told me I was stable. On ibrance/faslodex/xygeva-tumor markers still going up small amounts every month. Right after last faslodex I got sciatica so severe. Another mri which he said showed some progression. Stopped all treatment- I was also having rashes, hives- it was a mess. So turns out he read the mri himself and said there were no new findings.?! Anyway the treatment changed- have to start xeloda soon.

As a nurse and now a patient- have been with him from stage 1 in 2009- I find I have to hold firm and push sometimes- he does not like to do scans often because it can compromise the bone marrow. I understand and accept that; I was in so much pain in my left buttock I wanted a damn answer. I needed to know it was not more spinal Mets: I also pushed for pelvic X-ray to make sure I had nothing in the pelvic bone. Once it was clear that was not the issue I started physical therapy for the sciatica.

I put 100% trust in God, not a doctor. I have been around too long and know I am my best advocate. I am not posting this to upset anyone- this is just my truth.

I hope it helps you settle your peace of mind.♥️

Frances

[Zebra2018 in reply to Francesca10]

Thank you Francesca for your comprehensive response. You are wright we are the best advocate for ourself and like you, I some how don’t trust doctors! SAD 😢

[RLN-overcomer in reply to Francesca10]

Greetings: Sister/warrior I too put my trust in God, and I ask our Lord to send the right medical professionals / angels my way. It doesn't hurt that you are a medical nurse either. I give God praise for every blessing seen, and those blessings unseen. We depend on a God who created this universe. I/we ask with 100% faith, and our God will deliver. XoXoXoXo