Finding Brain Mets in CT - What does it mean? - 1248452

I'm so sorry to hear this about your dad. WBR should be the strong next step and it doesnt matter how they are found. CT is often used for brain scans though a more typical brain image is with an MRI. You need to ask the onc why he said that. It wouldn't be appropriate to guess why.

Have you read any info about brain mets on Grace? I will link you to some info when I get to my computer in a few minutes. Or you can use the menus at the top of the page.

Janine
Forum moderator

Martin,
Below are a few links to discussions on brain mets. I hope you find them helpful. I understand the desperation and hope you and your dad are able find some peace in the knowledge that there is treatment available.

This link Dr. West gives a good overview of brain mets from lung cancer, including this about CT scans, "Head/brain scans with CT or MRI are the way that the vast majority of brain metastases are detected (or confirmed if strongly suspected)."
http://cancergrace.org/lung/2007/04/05/intro-to-brain-mets/

At the end of the discussion are links to further blog/posts on the subject.

This is our forum section on brain mets. Some are on the subject of several mets, which unfortunately isn't uncommon but is very treatable. http://cancergrace.org/forum/radiation-oncology/brain-metastases-pci

If you want a lot of info about the scope of treatment for brain mets this links to all the blog//posts on the subject (note that you may need to log off if you have trouble accessing this) http://cancergrace.org/lung/category/lung-cancer/general-lung-cancer-is…

I hope this helps,
Janine

Martin,

I'm very sorry to hear of your father's progression. Janine provided links to the most useful summary content here, along with her own comments. While there is no doubt that having multiple symptomatic brain metastases, WBR is definitely the leading option in this situation and is often very helpful.

Good luck. We're happy to try to address any follow-up questions you might have.

-Dr. West

Martin,

There really isn't much evidence out there on the value of Alimta (pemetrexed) in preventing brain metastases. I don't think it's possible to do more than speculate here. I think it would be reasonable to consider going back to it, but many people would consider this progression to be reason to NOT return to the same chemo on which a person progressed.

As for repeating whole brain radiation, it can be done but isn't well studied, and it's always something we are concerned about in terms of tolerability. It's a situation we manage on a case by case basis.

Good luck.

-Dr. West

Hope your dad is doing well. Be prepared for him to feel very tired after the treatment - one of the strange things about WBR is that the fatigue is at its worse several weeks later.
If a just few mets came back, he could have targeted ("stereotactic") radiation (often referred to as "SRS" or "SRT" or "cyberknife"). As to re-treating with WBR, it's riskier in terms of side-effects. We've had discussions here on GRACE and my impression is that doctors rarely repeat WBR except when someone responded well the first time and is several years away from the original treatment. Here's a discussion on that (p. 4):
http://cancergrace.org/radiation/files/2011/05/dr-mehta-brain-mets-qa-s…
best to you and your father

Hi Martin,

I'm sorry to hear about your father's continuing problems after WBR. Unfortunately, radiation does not work like the laser weapons in science fiction movies, zapping the cancer cells into oblivion. Instead, the radiation affects the DNA of the those cancer cells and disrupts their ability to grow and divide so that over time the tumor or nodule cannot survive. As a result, the positive effects of radiation are not immediate. One option which can provide quicker results would be the use of steroids such as dexamethasone (Decadron), which can reduce the swelling associated with brain nodules and thereby relieve symptoms.

As far as an ALK mutation, these are found most often in never-smokers, and the drug designed to take advantage of that mutation, Xalkori, tends to be quite effective for many patients. So I don't know that it would be "very rare" for him to have an ALK rearrangement or for Xalkori to be effective. From your biographical information (which I've quoted below for reference), it seems that if WBR successfully controls his brain mets, further chemo or targeted therapy may be of benefit. Any biopsy carries a risk, but whether a new biopsy is worth that risk is something that should be discussed with his doctor. That risk varies with the type of biopsy performed. As Dr. West has said:

"Pulmonologists typically try to do a bronchoscopy so that they can see what might be happening, and sometimes the cancer is in a place where it's easier to approach from within (at bronchscopy) than from outside the body (a CT-guided biopsy). CT-guided biopsies also involve a small but real risk of collapsing the lung when the needle passes through. unfortunately, it's not unusual at all for a bronchoscopic biosy to be "non-diagnostic". - http://cancergrace.org/forums/index.php?topic=1839.msg10905#msg10905

(Continued)

I hope that you father's WBR effectively treats his brain mets and that his symptoms improve soon.

JimC
Forum moderator

Martin's biographical info:

56 Father DX 08/11 Stage IV NSLC- adenocarcinoma - mets to clavicular region and stomach 09/11 - 6 cycles Carbo/alimta - 70% shrinkage 01/12 - Alimata - Slight Progression 03/12 - 6 Cycles Docetaxel - 30% Shrinkage 06/12 - No treatement 09/12 - Brain Mets - found in CT

Jim provided a very good summary of the potential value of ALK testing, which I would consider to be very real in someone with no smoking history. The risk from an additional biopsy is usually very low, depends on the location of the cancer, though there is always some risk of complications such as bleeding, a collapsed lung, etc. It's also worth noting that the costs associated with a repeat biopsy and additional molecular testing may not be covered by an insurer.

-Dr. West

The hair loss is a common side-effect of brain radiation - it is upsetting but it is to be expected, and the hospital should have prepared your father for that. It will probably grow back after a while.
Jim is quite right about the steroids - which can also help with appetite. Or there are fantastic anti-nausea drugs out there.
I think I'm right in saying that you wouldn't expect body pain after radiation to the brain. The only time I had pain was during a course of radiation to the chest. I suspect the reason his doctors aren't saying much is because they don't know.
About the ALK - it might be worth checking whether the lab that did the EGFR testing may have looked for the ALK at the same time. When I requested an ALK test last year, a rather surprised pathologist wrote back to say that they'd already done one (I'm negative) . They'd done it with the EGFR test, but no one had bothered to tell me because the doctors didn't think it was relevant. Best to your father.

I'm so sorry you feel stuck in your position with the doctors. Is your brother able to speak to someone about getting the steroids added back to his regimen?
Unfortunately sometimes cancer progresses faster than treatment is able to keep up with even if it is working.
It's very difficult to know what is happening with the information we have but I will contact a doctor to see if there is input to be given.

With best wishes for your father,
Janine

I'm so sorry for what you, your father and your family are going through. Lung cancer is a truly cruel cancer. The lung cancer patient has two major sources of suffering: cancer, and side effects from treatments aimed at cancer. Sometimes, it can be very hard to distinguish which are which, especially for global, systemic and vague type symptoms. In the case of your father, the key question that I'm hearing form you is whether he is suffering from cancer (in which case, after so many lines of therapy you may wish to consider focussing primarily on comfort) or whether he is suffering from side effects of whole brain radiation that might improve over time (in which case, you might consider aggressively supporting him, while waiting for this to happen). In these situations, time is often the best test. Aggressive supportive care, aimed at comfort, is ALWAYS indicated. Regardless of whether there are thoughts of additional biopsies, tests, and treatments considered for the future or whether the family's focus is only on comfort, kindness demands the same aggressive supportive care.

So, the most immediate question then becomes what should be done to make him comfortable? What will actually work? Steroids can be very effective for both nausea and vague symptoms in both patients with brain mets and patients who have recently had radiation. If they are insufficient on their own, good nausea drugs such as zofran (or whatever similar mechanism that blocks 5HT3 is available in India), compazine, and others. If legal in India, some consider medicinal marijuana helpful. I

What makes sense later will depend on how well your father recovers. While it would likely be psychologically easier to decide that now, you may have to wait to have adequate information on his recovery to make an optimal choice. Some of my patients and their families have told me that uncertainty can be much harder to deal with than even bad news; I'm sorry that you may be stuck with it for now

You say he's already off the steroids, did they wean him off or just stop all at once? The symptoms you're seeing could also be from stopping the steroids too soon. I would ask his doctor to put him back on low-dose steroid and see how he responds? When will they do the brain scan again? Wishing you all the best.
Take care, Judy

Martin, please let us know if your dad is put back on steroids and what else is being done to help with symptom management.

On a personal note of my own, one of the most comforting things for me to hear about cancer care today is summed up in this quote from Dr. Weiss' comment, "Aggressive supportive care, aimed at comfort, is ALWAYS indicated. Regardless of whether there are thoughts of additional biopsies, tests, and treatments considered for the future or whether the family’s focus is only on comfort, kindness demands the same aggressive supportive care."
My father died of cancer in 1970 without ever getting treatment, including symptom management even though he lived and worked with much pain for a year. His last months were very difficult and I won't watch a loved one go through that again with what I know today. I hope I don't overstep my bounds but I do want everyone to know there is so much that we can do in our support of our loved ones.

I'm afraid that with any treatment there is the possibility that it won't work. As Dr. Weiss said, time will tell what the next steps in treatment should be.

For now I hope he can get comfort care,
Janine
forum moderator

A minority of patients don't respond to WBR -- I'd estimate perhaps 10-20%, at most. It's definitely possible that someone will respond poorly or even do worse because of WBR, but in someone with multiple brain metastases, the probability that it will help them is far greater than the probability of significant harm. Still, outcomes with cancer are quite variable.

Good luck. I do think that in patients doing poorly, sometimes they'll do better with starting steroids or increasing the dose.

-Dr. West