Bone mets advance with low CA27/29

Beckie · 06-03-2007, 06:48 AM

I had asked a few weeks ago if bone mets can advance when CA27/29 scores are low. I found out they can. My bone scan and CT scan showed my bone mets are advancing and some lymph nodes in my chest are now involved that had not been before. My 27/29 was 23.7 last week. I had a port put in on Friday, and will be starting Navelbine on the 13th. I have another question. After reading some of the posts of ladies finding brain mets with routine MRI's I asked my doctor If I could have one. He said he would rather not subject my brain to unnecessary radiation if I don't have headaches. Should I keep asking, or let it go? Thanks.

Beckie

tousled1 · 06-03-2007, 07:46 AM

Beckie,

I'm sorry to hear that your bone mets are progressing. I have found that the tmor marker tests are unreliable - at least for me. When I was first diagnosed mine was 14.3 which is well within the "normal" limit. I don't even have them done anymore. I am now doing the HER2 serum test and hopefully that will work better for me. I have a bone scan scheduled for wednesday due to the pain I am experiencing. As for the brain MRI -- I had one last year when I was complaining of headaches but have not had one since. I have read several posts on this board about how important brain MRIs are and that we shoudl have one done at least once a year. I'm sure you'll get many replies on this subject.

Esther · 06-03-2007, 08:35 AM

Beckie, you're right by me! I'm in Riverside, CA.

I only have brain MRI's when I have symptoms, for me I am aware of something going on very quickly on my own.

Many others have reported though, that they have felt no symptoms of brain mets at all, and they were discovered by routine tests.

Since the size of the lesions, as well as the number of them, help determine the type of treatments that are options for us, it would probably be good to schedule a brain MRI once a year.

lilyecuadorian · 06-03-2007, 08:35 AM

well this monday 5 at 8.30 am I will get a radiosyrugy and after that operation to extract the tissue left on the cerebellum ..all this after notice last week weir headaches ....so kind like lucky to get those headaches otherwise ....can't cath early and unaccecible to operate .....I wish can get some prayers for tuesday A.M. for all my sister in this cruzada....please pray for me ....I got excellent doct , fmily and friends and what I really need a lot's of prayers ...from your all.......regarts
lily

Sheila · 06-03-2007, 08:36 AM

Beckie

I get an MRI every year, even if I have to fake the headaches...I would much rather take the radiation exposure than to find the brain mets too late. I would demand one, it is your right as a patient!

Barbara H. · 06-03-2007, 08:45 AM

Don't worry about the radiation exposure from MRIs. They put young children in functional MRIs to test their reading development. With MRIs you are exposed to high magnetic fields and and high radio frequencies. Considering how important it is to find brain mets in their early stage, I wouldn't have medical concerns about having MRIs. It is probably more dangerous to drink soda.
Best regards,
Barbara H.

dchips1 · 06-03-2007, 10:01 AM

I had one done and that is when we found my 6 spots, all very tiny and not causing any problems, the 1cm was on my brain stem, if not caught early then could have caused lots of problems. I had 15 days of radiation all lesions are gone except for some residual on brain stem and we follow this closely. Good luck Darita

Andrea Barnett Budin · 06-03-2007, 10:25 AM

Just wanted to add my 2 cents on this... According to my oncs, brain mets are occuring SYMPTOMATICALLY -- no symptoms. So onc wants me to have MRI at least annually, if not ev 6 mnths (writes HEADACHES for insur). He also says they "usually" early on after 1st bc dx or after met. My mets into liver were in "98. Gone since '99. He doesn't think I'm at high risk, but had 3 patients present w/brain mets last wk and is now being admittedly overly cautious. He was quite shaken by this factor.

Also -- for me -- tumor markers don't become elevated into mnths after dx, so unreliable for me. Interested in HER2 SERUM test someone mentioned instead. Can you tell me more about this? I'm advocating...

Sending healing energy to all my beloved Sisters, ANDI

Lala · 06-03-2007, 04:46 PM

Beckie
Hugs to you! I am sorry to hear about the bone mets. I hope the Navelbine knocks those mets back and fast.

I had to respond to the thought of Brain MRI and timing.
My oncologist insists that all of his Her2+ stage 4 patients have a Brain MRI every 6 months. I am thankful my brain mets were caught early in a routine Brain MRI. This enabled me to have Stereotactic Radiosurgery.

In my opinion all stage 4 Her2+ should get the Brain MRI every 6 months.
It can make the difference in treatment when caught early.

StephN · 06-03-2007, 11:54 PM

Listen to BarbaraH - the exposure from MRI is not the same as for CT scans. I am having one treated brain met spot followed with MRIs every 3 months. It is the contrast that I want to get out of my system as soon as possible. But the contrast for a brain MRI is not as bad as the one for the CT scans that they now make us sit and wait for 15 minutes before letting us go out. Find someone to order the brain MRI. I had a large 3cm (about 1 inch round) tumor and NO symptoms. My med onc was on board with ordering these tests for his stage IV patients as part of followup. Just say your arm was numb or something like that and you will get the test.

HavahJ · 06-12-2007, 06:05 PM

An MRI does not have radiation.