Bad Day

[Angela]

When I found out I had brain mets they told me I would receive 14 wbr treatments, wait 6 weeks, have an MRI and then we would go from there. Today when I went in for my 11th round of radiation I was told to say and see the dr. I hate not knowing I'm suppose to see him ahead of time. He came in and said that we are going to do an MRI Monday after my 14th treatment and then we will determine if I need more. I was floored. No on had ever mentioned I would possible have more then 14. Why do they just spring this on us. I'm would have rather know if was even a possibilty then to walk in and be blind sided. I know that what he says makes since, lets see if they are growing or if more have appeared to see if we are even on the right track but he could have presented it in a different. The 1st thing he said to me when he walked in was that I was probably not done with radiation and they did not set a good tone.

Sorry to be complaining, I know I should but I just need to vent. I haven't felt good today so this just didn't make the day any better. But mom took me out to lunch to try and make me feel better. I don't know what I would do without her.

I hope everyone else is having a better day.

[MichelleMoon]

Hi Angela,

I finished 15 WBRTs a month ago. I'll have a follow-up MRI after 6 weeks (so mid-March). My doctor implied there's not much they can know until then because the tumors are still being disolved (or resolved or otherwise made to go away). Did the doctor provide some explanation for why he wants to check now? What has changed?

I'm sure it doesn't help that you aren't feeling well. I hope the rest of your treatment goes smoothly!

[suzan w]

sorry for your news and that you are having a bad day! No great advice...just know that I'm thinking about you!!!

[MGordon]

I know your Dr. is the radio-oncologist and I am just a support group member, but I need to pass on information from our radio-onc.

Scanning (MRI, etc) too soon after WBR gives way too many false positives. The analogy our onc used was roasting marshmellows in a microwave. If you put marshmallows in a microwave and radiaite them them swell to several times their size, and after the radiation stops, then the collapse into the dead hardened cells. Your tumors in this analogy are the marshmallows and right now they've swollen to several times thier initial size as they've been radiated. After time the will collapse down into "white matter" and then be smaller than their original size. If the scans are run before these tumors have had a chance to reduce to white matter things may look alot worse than they really are. With WBR there is a chance that tumors that were previously too small to identify on scans are now swollen as well and scans now can may make it look like there are new tumors. All in all our onc said the only reliable metric was to give enough time after rads before scanning. See if you can convince your onc to stick to the six weeks after scan regime.

My 2 cents and I hope all is well.

Love and Light
Mel

Oh yeah - and hang in there! The best Drs. in the world may not be very people-skilled - i.e. bad bed side manner. The stories I could tell... Hang in there, get what you need, and give your onc your feedback - if he/she never hears how this effects you they do not know to change...

[Lolly]

I am so sorry they sprung this on you, so to speak, but try not to let it put you in a panic. Mel and Michelle have first hand knowledge of this so their advice is priceless. Do some homework, print out some info on studies done about the value and timing of follow up MRI's after WBR if you can, or jot down what you find out, and go in armed with some knowledge. Most docs will listen and consider your points if they know you've done some homework, and should be able to back up their position with facts that they SHOULD explain in lay-woman's terms. Good luck and keep us posted.

<3 Lolly