After Whole Brain Radiation -now what?

01-29-2009, 11:07 AM

I have finished my 20 rounds of WBR and two "boosts" to the surgical site on Jan.16th and now I am recovering from the side effects of feeling nausea, fatigue and scalp irritation along with some intermittent ringing in the ears. My problem now becomes this- my radiation oncologist that I was contracted to see has told me I should have an MRI about two months from now to see where I am at but he referred me back to my regular oncologist at Kaiser to follow-up with that. I went to see my Kaiser Oncologist on Jan. 21st and he feels that I should not have a followup MRI. He believes that the WBR has killed any seeds since I had surgery on Nov.10 to remove the single 3 cm brain met. He is good about following up with my Ct scans for my primary cancer site and bone scans but has a different idea about this.
My feeling is that I don't want to become constantly gammaknifing every spot but yet I don't want to wait til I have a huge symptom which will be a tumor too big to deal with and that's the end of the road for me. Its not nice to say but the little research I have found online points to patients dying from the primary cancer coming back or the complications rather than the brain mets persay . And if I push for an MRI followup I don't know as a layman how often one should have it done. I also am surrounded by a big bottles of coenzyme Q10 and antioxident supplements and don't know if taking them now would be a bad thing or a good thing. I know I was told not to take it while doing the radiation since it was counterproductive to the radiation. I am tired of constantly dealing with health issues(I'm sure you all have that feeling)and if I live a long time I don't want to spend every day worrying if the next will be my last. How can I wrap my mind around a "living" mindset and go about living rather than worrying about this every day? Thanks for listening-Kathy in CA

StephN · 01-29-2009, 12:22 PM

Hi kathy -
Thanks for the report.
It is IMPERATIVE that you have followup scans. Brain mets are something that need following whether they are dying or to check for any new ones.

We have people on this site who have had WBR that DID have new mets later on.

In my case I did not have WBR since I had just the two tumors and never any others. It is my radiation oncologist who orders my brain followups and I go see him for the results. Don't let him cut you loose like that.
And he sould NOT have done it.

You should go back to the rad onc and tell him that you wish to have the followup he recommended and have HIM review it with you.

Hope your aftereffects are subsiding as you get further along healing. I see no reason not to take your CoQ10 now. I was told it is good for brain healing!

Remember - Spring is coming!

Joan M · 02-01-2009, 09:34 AM

You should most definitely have follow-up scans, every three months.

Joan

Lani · 02-01-2009, 10:50 AM

Her radiation oncologist told her there was no way her mets could come back after WBRT. Where do these people come up with these things?

Her best hope for a clinical trial is one which requires her to have a repeat brain MRI 30 days after completing her WBRT to see if her brain lesions are stable/still there, in which case she may qualify or progressive, in which case she is not.

As usual, I am just getting her info/articles to to help her decide. I did not want to be the one to question what she had been told by a radiation oncologist, but just pointed out to her that the requirement for inclusion in the clinical trial wouldn't be there if "things were that easy"

Do these radiation oncologist learn that this is "the nice thing to say," do they really believe it because they don't see the patients back and don't follow what happened to them (ie, the go on to cyberknife/gamma knife
as you certainly can't have WBRT twice as I understand it), or what is going on.

Sorry to be sounding off, but sometimes I am just flabbergasted.

Perhaps Joe should make a video of Christine, Steph, Esther etc telling their stories so these professionals can learn something of the "whole spectrum of the disease" At conferences I continue to hear that the average life expectancy of those with Stage IV bc is 2 years, 1 year for her2+ metastatic breast cancer who don't get herceptin. How about some new stats as well as a "sensitizing" video to be shown at , say ASCO, ASTRO and the surgical oncologists meeting to put a face on these stats and show the quality of life possible if one realizes the natural history of the disease has been fundamentally changed by herceptin and, perhaps, aggressive treatment of brain mets.

Off the soapbox for now.

StephN · 02-01-2009, 01:12 PM

Hi Lani -
Well, you have hit "it" on the head. We members here are constantly butting our heads on the brick wall of ignorance, which budges what seems to be only a millimeter at a time even with all of us pushing. Some of occasionally are lucky enough to have come upon an enlightened care team or at least an onc, but recall how many posts we have had from women needing to change oncs because of such ridiculaous statements or treatment decisions.

Our presence at all these meetings so far is the best we could do to put "a new face" on Her2 primary and metastatic breast cancer. We stand there as proud pillors of our group. If you were hanging around our booth and heard some of the conversations we have with the convention attendees, you would see that they get a real wake up call from seeing us there in the flesh.

I don't know when the "official" stats that are "out there" will change, but hopefully soon. We could not get even Genentech to do a followup on long term survivors who are stage IV and on Herceptin! I remember getting in Debu Tripathy's face about that at ASCO a few years back.

flynny · 02-01-2009, 08:33 PM

Although I have not had brain mets... my mother did and I agree with all of the above YOU SHOULD MOST DEFINITELY have a follow-up scan. I can't even imagine how an oncologist could say that. Just my 2 cents, but Wow I just can't get over this one.

dchips1 · 02-02-2009, 10:04 PM

I get my Brain Scans every 3 months. The Neuro and Rad at Barrows here in Phx said any closer then you can get misdiagnosed, because the radiation can cause swelling and necrotic tissue, before your brain absorbs the "wound" met. At Barrows it was nice because the MRI that they use slices your Brain in to smaller slices that normal MRI facilities use. So you get earlier detection than a regular MRI. I strongly encourage all HER 2 patients to get a baseline Mri after diagnosis. I just happen to mention it to my onc that my sinus headaches were more frequent!!!! Found 6 lesions the largest was in my brainstem! (2007) The 2nd follow up found the new lesion, had Gamma knife,(2/08) with follow ups it was shrinking until (11/08) then it grew.So now I am a MRI brain freak 3 months like clockwork. I chose to find it before it causes problems and you have options. Take CARE Keep moving forward and be persistent with your DR and Insurance companies. Darita