Metastatic de novo diagnosed 20 July

gumnut

Dear @TrenzaloreACT
Wishing you all the very best for your upcoming surgery and plan of treatment. As the other ladies have mentioned, your fitness and good health with help you with your treatment and recovery.
I also wanted to mention to you and @PV123 that when I was diagnosed last year with multiple bone lesions in various bones, I had no pain at all.
Best wishes 

PV123

Thank you for sharing that @gumnut.  If you don’t mind me asking, were you diagnosed de novo or did the metastasis develop later.  It is very confusing when the doctors give you conflicting advice.  My surgeon suggests doing a bone scan and CT every year while the oncologist says you don’t need yearly scans because you will have symptoms such as bone pain if the metastasis is in the bones.  Your experience has been different, you had metastasis without pain.  I am quite confused which way to go.

gumnut

Dear @PV123,
I was diagnosed de novo last September.

Lisa1407

Hi @PV123, My diagnosis was 3.5 years ago (Stage 4 Lenovo). Had muscular pain but had quite a few mets in hip. I have a PET & CT scan every three months to make sure treatment is working. I am a public patient, so oncologist is not concerned about me having to pay for scans although she does have to work within the hospital guidelines. My guess is you are a private patient. My friend who had Stage 4 was a private patient only got CT scans once a year. In my view, that isn't enough - I believe that small progressions are easier to treat. If the progression is large, the overall tumour burden makes treatment more difficult. Is your CA153 marker an accurate reflection of your status and how often do you have it measured? I am also having circulation tumour DNA tested once a month and the level is reflected in PET scan (ie if DNA level increases new spot will be detected on PET). So, as you can see, I am very closely monitored and very grateful for that. xx

PV123

Thank you for your responses @gumnut and @Lisa1407.  I hope your treatment is going well.  I am sorry I didn’t explain myself correctly.  I was diagnosed with early breast cancer last year which is not currently metastatic. 

I am concerned about not being able to detect metastasis when there are no symptoms given that the oncologist does not recommend yearly CT scans.

Lisa1407

Sorry @PV123 for my misunderstanding. That makes more sense. You should be able to have a yearly scan if it puts your mind at ease. I would push for it if that is what you want. Good luck.

PV123

Thank you @Lisa1407, I think I will have the yearly CT for my peace of mind.