Q about when scans or tests should repeat for stage 4

[Linus]

It has been a long time since I have posted! I have a couple of questions if anyone has the time to answer.

Mother was DX stage 4 LC in August. No primary ever found but she did have 1 brain met.

She was given a CAT scan and bone scan in late September to see if there were any more spots of cancer. Bone scan revealed a possible met to spine but no one was sure if that is cancer or not.

The only tests repeated since then is an MRI to check status of brain met since surgery and WBR. NED.

I am wondering if it seems to any of you that she already should have been retested for cnacer anywhere else. It has been almost 6 months since the spot on her spine has been retested.

How long do Dr.s usually wait to retest? I thought maybe every 3 months or so when cancer is first found. I did ask for these scans to all be repeated and have appts. set up for about 3 weeks from now. I am just wondering if there is an average amount of time between tests that Dr.s usually go by?

Thank you for any replies!

Linus

[Justakid]

Linus

I would request scans every 3mths, especially since they were unable to locate a primary. That's just my feelings....the absence of a primary makes me nervous. I would want a whole body work up done if it's been 6mths!

When I was stage 3a my doc was going to be doing scans every 3mths.

[stand4hope]

Dear Linus,

Since you don't have a profile, we can't tell what treatments your mom has had. I will assume that she has had chemo ???

Anyway, as far as the bones, etc., if she has had chemo, they probably won't do a PET or bone scan unless there are problems (i.e., pain). The reason is because they won't radiate bone mets anyway until they have to, and the reason for that is that they can only radiate any particular area one time (see side note below).

Another reason is that the treatment for bone mets (the ones not causing problems) is the same as the treatment for the rest of the cancer - chemo. So, if she had chemo, the bones have been treated, and since they won't do anything else to the bones unless there is a problem, they probably won't scan them. I'm sure this sounds very confusing, but right now I can't think of a better way to explain it. Maybe someone else can.

My husband has lots and lots of bones mets, and has had for a long time, but they aren't causing any problems at all at this point. He did have a PET scan last spring because he developed severe shoulder pain, which was from a bone met, and the shoulder was radiated and the pain is gone.

Now, as far as CT scans, if they are certain that she has lung cancer, even though a primary was not found, I would think they should still do a chest CT scan every 3 mos. - but that's just my opinion.

Glad to hear that the WBR wiped out the brain met! That's great!

Love,

Peggy

[MelanieLR]

Hi Linus,

My Onc. has me scanned every 3 mos. unless something strange comes up between times. Sometimes you have to remind them that you're still out there. If your Mom is doing ok & not making waves, they may just have missed the follow-ups. I know this sounds awful but it does happen. MAKE SOME WAVES HONEY! Talk to her onc.

I remember when I first got my dx. I was so busy with the onc & other specialists, I had not seen my primary care in quite some time. I caught the flu & when she saw me there in the office, she looked as if she had seen a ghost. They had moved my file to deceased given my dx & the length of time since they had seen me. Looking back on it, it's kind of funny now but believe me, it was one H^&& of a shock at the time.

Never be afraid to make yourself be heard.

Good luck & my prayers are with you.

Melanie

[lindseysmom]

Linus,

I have scans every 3 months. I certainly would ask for the scans.

Best Wishes,

Dee

[Amy P]

My Mom has never had routine scans - even after her surgery. She had chest x-rays every 3 months and then a CT & PET when after the found the recurrence in her lung. Since the recurrence she has only had one scheduled CT (had one in Feb to rule out pulmonary embolism) and that was in August but she does get x-rays every 2 months. I questioned her oncologist and she said as long as she was feeling good that this is her preferred method but if Mom really wanted one she would order it. We are comfortable with that. If you aren't comfortable, I would definately ask - better to err on the side of caution if it gives you peace of mind!

Best of luck to you and your Mother!

Much Love,

Amy

[carrie]

Hi Linus,

I agree with everyone else, I would have scans every 3 mos. Has your mom had a PET Scan? If not I would suggest she have one as soon as possible.

Take Care,

Carrie

[Don Wood]

Linus, it is definitely time for repeat scans. If your mom is Stage IV, 8 months is a long time. My wife is Stage 4 and she gets them every 4-6 months, I believe. Don

[Linus]

Thank you everyone for the replies. We will be going for a bone scan this week and a CAT scan in 2 more weeks.

Thanks Stand4hope, I didn't know about doing the profile!

I will ask for the scans to be repeated much more frequently.

My mom is really doing great with the cancer. She feels great and does not seem to have any symptoms of anything coming back.

At first, the Dr.s gave a really poor prognosis for her. They were obviously wrong about it and I have learned that even though she is stage 4 there is much hope.