Brain met question
 

Here's a question for all you brain mets ladies (and gents, too. That means you Ed).

I'd like your input on tumor size, since that's one of the main considerations in deciding on either surgery or stereotatic radiosurgery for a brain met. Location and number of nodules are other considerations.

I'm in a dilemma. Today I spoke to a neurosurgeon who recommended surgery followed by radiation to the tumor bed. The reason is the size of my tumor. Although it's not large, it isn't small either, measuring 1.8 x 2.6 cms.

According to an article that Joe posted here on managing brain mets, the cut-off point for SRS is 3.0 cms, and the surgeon said the same.

The tumor is in a "good" location.

What has your experience been with the size of your tumor if it was located in a good spot (one that's easy to get to and not in a functional area).

I'm seeing the SRS guy tomorrow.

Thanks.

Joan

My experience
 

Hi Joan,
Four years ago I had a 3cm tumor to the prefrontal cortex. It was easy surgery and I was advised to have surgery with a tumor of that size and location. I then followed up with stereotactic radiation. My greatest problem was the Decradon and I almost fainted when they applied the headgear for the radiation. After that I ended up having to have two more surgeries for what was possilbe tumor regrowth, but turned out to be radiation necrosis. I am so glad that I declined WBR at the time because radiation doesn't seem to agree with me.

It's also important to note that I was back in school teaching a week after I had the second surgery.

I don't think you would find the surgery difficult, but you will hate the Decradon.

Best wishes with your decision.

Barbara H.

Hi Barbara,

Thanks for your response. I hadn't realized that you have also had a brain met.

The surgeon I consulted with also said that the surgery would not be difficult. She said it's in a good place. Also, she uses MRI imaging for guidance. That is, dots are placed on my forehead and I go through the MRI scanner and the resulting image maps out the best route of the surgery. Ahe also said that I could probably go back to work in two weeks if I wanted to.

I had sent a few PMs to HER2+ sisters (and brothers, and husbands of survivors) who I know have had or are dealing with brain mets.

I want to share their responses:

From Joe:

Although you are still a candidate for Gamma Knife.

You should look into fractionated radio surgery or Cyberknife. Both of these treat the tumor over several sessions and can treat larger tumors.
I would seek other opinions.

http://www.irsa.org/CentersOfExcellence/NewYork.html

From Brenda:

All of mine (5 of them) were considered in 'good spots' I suppose. That could be because none of them had any swelling around them and the largest one was 10mm - so it could just be that they weren't big enough to 'threaten' anything congnitively or motor- skills-wise.

That said, none of mine were in 'great spots' for surgery, but then due to the size of them, that wasn't a necessary consideration anyway.

I hope this helps. Also, I did IMRT treatment as opposed to Stereotactic, Cyber or Gamma.

From Flori: Flori said her tumor was small, only 13 mm.
___________________________________

I'm due to meet with the rads onc tomorrow. I believe they also use IMRT, as Brenda notes, a micro multileaf collimator system. And, Joe, thanks for reminding me about being able to use a fractionated treatment for larger tumors.

Joan

Hi Joan -
My two tumors were very different in size. At the time there was no cyberknife available here, so Gamma Knife was the best way to go for radiosurgery.

One tumor was 3cm and located in my cerebellum. the second one was only about 5mm and in my superior vermis. I could have had an open surgery on the larger and GK on the smaller, but chose to have them both GKed.

All looked good for a year and then the tumor bed of the larger one started to light up and it seemed that maybe it was regrowing. I had an open surgery to excise the area. That was not bad, but I did have to spend a few days in the hospital. With Gamma I just went home and was out driving the next day.

The surgery showed 100% necrosis, but I had a side effect from the surgery as the substance they used to seal my dura did not hold. A cerebral spinal fluid (CFS) leak developed at the back of my head, which I had to have repaired by another surgeon who used a different material to seal my dura and cure the leak.

I would opt for a radiosurgery of some kind, if I had to treat a new tumor.

The decadron WAS rather brutal, but only needed it for 3 weeks and then weaned in 10 days.

Stephie,

Thanks for replying to my PM. Your cerebellum tumor was about the same size as mine, and I can see that you've had quite a time with the surgery.

Barb replied to my PM and she has to find out the sizes of her lesions, but she had a combination of both surgery and radiation. She wrote:

I will have to look up my records for exact size of the ones I've had. However, a big issue for me was the location. The first was in a very operable area, so I had surgery and gamma knife to the bed of the tumor after. It has never again reared it's ugly head.

Number 2 I had stereotactic. It never came back. Number 3 I had stereotactic X2 - because it came back. They did a larger area the second time (#3) and some borders which have (I believe) caused some minor memory problems. If that does not work I will have to get surgery with chemo implanted unless Gamma Knife says they can do something.....

I get scanned in another month to see if it has stayed away. The only reason I chose stereotactic is because it is closer to home (1 hour vs 7 hours). I hope it works this time!

________________

Joan

Joan,

You may also wish to get second opinions.

Regards
Joe

Hey Joan
 

In response to your question, here is a brief summary:

6/25/07=Many, many 'salted areas of the brain with mets ranging from 5-9mm. Since there was so many of these nasties we elected for Whole Brain Radiation to get a jump start on what was to possibly come.

9/20/07=MRI showed there were 2 still ceasing to be and their size was 2mm

1/7/08=Results of MRI were 'clear'
4/7/08=Results of MRI were 'perfect', like nothing was ever there in the first place!

8/26/08=MRI showed 6 mets but we later found out that there were 10 total, all under 9mm. We opted for the Gamma Knife since we knew we could zap these buggers once and for all. Also, if need be, we could do the procedure again.

These last set of mets were located in total different areas that any that were in the brain before. They we all in good areas of the brain but several proved important. One was in the 'sleep center' of the brain. Needless to say, Ed has not had REM sleep for a few months now. Another met was very close to the ear and since he is almost completely deaf, Gamma was the way to go since he needs his hearing for communication and decision-making. The most concern was to a met located in the brain stem. When Gamma Knifing this one we did not give it the radiation he had to the rest. If needed, we will re-radiate this portion again since it is vital.

Ed had no masses and no edema, very important when considering all of our options. With Whole Brain & Gamma Knife, Ed did well and we have observed through time that he responds well to radiation. No results of the GK procedure yet but will keep you posted. So far it is good for me to note that he had more problems with the Decadron than the radiation; not a bad thing.

By knowing Ed & I, you must first know that our treatments are scattered. Chemo, bloodwork, certain testing is in one hospital. Doctor and other testing in another hospital. Radiation and brain misc in a third center. Dana Farber is also involved in our quest for life. All four places are hand picked by us to provide the best journey possible, to buy the time we are yearning for. Communication is the key here and we have no problem, never have. We have given all places the green light to share information with others that may educate doctors or others in their cancer journey. My best friend is a sick man and his journey a trying rollercoaster ride.

Although some may not agree, nor chose to do their treatment like this, I feel it is keeping him alive since he has a most complicated journey. We have complete faith in our doctor and it is not a need to hear it from different places. Hand-picked the best places for the issues involved. These 'centers' are in a sense our form of second opinions. These last mets were spotted and between these teams we had many people look over the MRI's and whatnot. For this we are blessed. Everything was caught in plenty of time to take immediate action. Wow, I love writing that!

Personally, I would get a second opinion about what is going on in your brain and those options available for your situation. Call it a fresh set of eyes reviewing one of your most precious areas, your brain. It is good to know that they are in 'good' areas. I think you would have mentioned the word 'edema' if it applied to your case.

I shall continue to pray and send healing vibes your way. I have soft spot when it comes to you, Joan; your friendship is my prized gift. Very important that we have this site to share and explore things you can not get from books or professionals.

Explore your options Sweetheart. Think of getting a second opinion of what is happening here. Remain full of faith and peace, do not forget to breathe. I remember the times of panic and depression upon finding out about these brain mets. Yes it is scary, I cannot even attempt to lie about this. Yet I know that there are options and choices with each issue, with each patient.

With all of the research, advice, experience with brain mets......With knowing who 'Joan' is I leave with saying; I have complete confidence that you will surely make the right decision for Joan and her circumstances. Also, we are all right here for you always. As you seen the doctor today I send special love. Please update us to what you find out. Did not mean to go on a writing spree, gosh, who is taking the Decadron, Ed or ME?? LOL

Prayers, love, healing energy>>Believe51

Joan,

It is scary to hear about the prescription of a brain surgery. I remember vividly how shocking it was 18 years ago when we were told that I had a huge tumor in the center of my brain and needed to get it out immediately.

Mine was in the right lateral ventricle and it was operable. (That was the so-called 'good news' my surgeon gave me - his actual words. )
I did have cognitive problem afterwards for a while because the location involved the 'short-term' memory region which is critical for learning. My experience is that the statement 'use it or lose it' is true as far as brain function goes.

Only this summer when I had an evaluation by a neuropsychologist did I realize that Gamma-knife and the two chemo I've had greatly contributed to my recent cognitive decline.

Brain surgery takes a lot of preparation. I wonder if your doctor made the recommendation because by the scheduled surgery time, the tumor may be growing to the cut-off point of 3 cm.

Take a deep breath and go for your decision after you talk to the SRS people. Do know that you are in our prayers.

Decisions
 

Hi Joan,
I was also in and out of an MRI during the surgery. You have many options and I'm sure that you will select the best one for you.
Best wishes,
Barbara H.

This is a really tough part of the road and I appreciate so much your travelling it with me, and I know that you've been down this road before yourself. You've all been really great! For those I sent PMs to, who I knew had brain mets, thanks for answering, and Barbara and Jackie, thanks for letting me know your experiences, too.

I've decided to have surgery followed by radiation, but before I explain, here's one more PM from PattyZ, who was also great to respond with her experience:

I have not had brain surgery, only radiation. My largest tumor radiated was under 2cm.

I'd read over and over again that if tumor is accessable, surgery followed by focal radiation has the highest success rate. But, those that have had this combo, have a higher 'rating' in my book, as to what has been their experience.

The only thing I can tell you really from my own experience: Look for focalized rads that DO NOT use the 'screwed on' headframe. But, rather a form fitted plastic type. I've had both: 3 of the first (and not fun) and 2 CyberKnife.

Also, I agree about the Decadron. Does what it's supposed to, but comes with some horrible side effects of it's own.... As low as you can manage for the least time possible is what I hope for you.

You've had some very good input from what I've seen.

Very best wishes to you,
patty


Surgery was recommended by both the surgeon and the rads onc, and their decision was based on the tumor size, which is 1.8 x 2.6 cms, and therefore very close to 3 cms, and the ease of accessing it via surgery.

The tumor is in the front left lobe, in a "good" area.

These two docs both sit on the same brain tumor board and my case was discussed with the board yesterday after I met with the surgeon.

Of course, I'm very disappointed, and I told the rads onc today, too. I really wanted stereotactic radiosurgery -- a one-shot deal. He said that if I want he can still do stereotactic radiotherapy (SRT) -- breaking down the treatment into fractionated doses, or hypofractionation, as Joe had mentioned, but the numbers are just better when surgery is combined with SRT for a tumor the size of mine. And this is something that Patty noted, too.

Also, I needed to make a decision and get the ball rolling. Or as my onc said, I can't do what I did with the lung (4 months later ...). I need to get a move on and get the tumor treated.

Besides that, I think I'm starting to experience a symptom. Twice over the weekend and then last night and a lot today, the tips of the fingers of my right hand feel slightly numb.

I'm very anxious about the idea of brain surgery. And I'm not too thrilled either about the contraptions used to hold the head still for SRT. I have not seen the machine but it's a linear accelerator (Brainlab from Novalis, I think. Never heard of it). I would be getting IMRT, five sessions.

I'll be having surgery either on Oct. 17 or 24.

Love you all, Joan

Thanks for the update. I'm sorry that you have to have brain surgery but on the other hand (typical libra) I am glad for the better outcomes of surgery and rads. And I'm glad it's in a "good" place. Please post the actual date...xo Flori

Joan, I'm so sorry to hear you have another front in the battle - I know you will tackle it with your usual take-no-prisoners approach! Best wishes,
Rebecca aka

Wow Joan - you really have researched the situation with your brain met so well! That's amazing! And to see the replies you have gotten here is really such a credit to the ethical and committed responses of this group. Really builds my faith in the credibility of this HER2 family.

Cant say im much help with the answers to your questions - Im still learning so much myself - but it really does help me to come here and learn myself.

All the best with it Joan - would be great to see those scans coming back all clear eh?
Blessings
Hermiracles

Thinking of you Joan, xo Ceesun

Joan - a quick summary of my five days of IMRT... for your enjoyment.

Two days prior to IMRT - went in to have immobilization mask made... which is done by laying on the treatment table. A piece of plastic mesh framed on the right and left edges is dipped in warm water to soften it. They shake off all of the excess water and then lay the mesh over the head/face and shoulders, and form it to fit your face and upper shoulder area. They snap it into place on the table while it is hardening. It hardens in a matter of about 5-10 minutes. While it is hardening, they can pull it away a little from your nose and mouth and neck, allowing a little more room in those areas for flaring of nostrils, opening of lips, easier swallowing, etc - all things that can help alleviate feelings of claustrophobia during the process. Being able to get occasional un-constricted deep breaths and big swallows was what made my mask so tolerable.

(My appts were at 1pm every day for 5 days. I went on Wed, Thu, Fri, had Sat/Sun off, and finished on Mon, Tue. We opted not to start with decadron, but to see how I did without steroid. If it seemed that I needed it, he would give it to me on one of the subsequent days.)

Day 1 - I walked in to get on the table and there was confetti all over the floor - they had just had a 'final treatment celebration'. That was cool. I love my doc and the staff. It is such an uplifting place. Doesn't feel medical at all... It went really well, in the moment, LOL. I laid snapped onto the table in my pre-formed immobilization mask. The robot machine rotated around my head and shot 19 angled beams into 5 spots on my head. Wow. Technology is amazing. It took about 15 minutes and I was outta there. I definitely got a little bit of a sinusy, salty flavor in my nose and the back of my throat a couple of times during the treatment. Wonder what caused that? Within moments of getting off the table, I could tell that my sensitive little brain was feeling a little beat up... I was foggy. It was weird. Not bad, just weird. I felt just an itty bit loopy (-ier than normal)... About 3 hours after, I started to feel a little limp and lazy. By evening, I had about 5 pretty mean little headaches going all at the same time. And I was just physically worn out. Took some motrin and laid down for a while. The motrin worked well and knocked back the headaches. I woke up in the evening feeling kinda like I felt on day 3 or 4 after Taxol/Carbo.

Day 2 - was so much better. Not nearly as foggy and only nagging mild head pressure (not ache). It's just so weird that by the end of the day, I still felt kinda like I did at around day four after Taxol/Carbo. You know, a little shriveled and dehydrated, and not nauseous but just a tad queasy in the esophagus area, not the tummy. It's hard to explain, but it's a milder version of that feeling. It turns out that it triggered the nausea center in the brain. I talked to the doc today and he told me the taste I get is from something on the right side of the brain... and he said that it won't be a cumulative effect, it would be a "first day should be the worst" of any side effect and then it should taper off each day as my body adjusts to it. And that is what happened on day 2. We talked about whether I should take decadron if the symptoms remain difficult, but we both would rather not if not absolutely necessary, and I think now that it's not necessary...

Day 3 - went very well and I do still feel a little puny, but even an itty bit better than yesterday. Nothing I can't handle. I still felt a little tired, slightly agitated/moody, and that mild queasy post taxol/carbo feeling, but nothing out-landish or debilitating. It all did continue to dissipate every day like the doc predicted.

Weekend OFF - Day 3 was a Friday, so I had the weekend off. I felt just generally crummy all Saturday and Sunday (like mild flu or bad allergies). It was tolerable, not terrible, but no-one likes feeling yucky, so I nursed it with a lot of sleep and TV...

Day 4 - Monday morning I woke up and felt (get this) 100% better and normal! I was thrilled. I went in for IMRT, and powered through with no SEs at all.

Day 5 - Tuesday, my final treatment and again felt terrific. No SEs at all. Nothing. Nada. We did my final treatment celebration with confetti, and I was out of there!

The rest of the week was like nothing had happened. No fatigue, no fogginess, no moodiness. Nothing, nada. I was so impressed. I did attend a music festival over the weekend and did a lot of walking in the heat and dust for 6-7 hours each day, and by the time I woke up each morning after, I felt pretty beat up - but I think that would have happened anyway.

I guess those two days over the previous weekend in the middle of the IMRT rads schedule were really all my body needed to recover, rebuild and re-strengthen and get used to the beams... and it was really a breeze on day 4 and 5.

We will do a follow-up MRI at 6 weeks after finishing to see the results. He said we should see 5 necrotic spots and not to expect sloughing off of them for about 6 months to a year.

All in all, I couldn't ask for a more painless and tolerable brain radiation. A few days of mild crumminess. Like I haven't already had to live through that for months and months at a time! LOL

Next step
 

HI Joan,
I am glad you have finally made your decision. I think you will find this surgery to be much easier than you expect. Because no muscle is cut, the healing seems easier. Again, the Decadron was the most difficult, and my surgeon insisted that I take it. I also needed it again for the radiation. I also had to take seizure medicine that made me tired. I developed an allergy to Dilantin and had to switch to something else.

So far I have not had to have that lung biopsy, but I have a feeling the healing would be more difficult. Again, the most difficult part of the surgery was the Decradon treatment. I made me slightly manic, and I could not sleep at night.

Again, best wishes and keep us posted.

Barbara H.

Joan,

I just wanted you to know that I think you are amazing the way you research options. I wish you the best with your surgery.

Prayers for a quick recovery.

Tonya

Thanks everyone for your support!

Brenda, I appreciate your letting me know about your experience with SRT, especially without Decadron. The rads onc said that I'll also have a mask which is like netting, and be given Decadron. But perhaps I'll ask him whether I might be able to try the treatment without it. I took Decadron for 21 weeks when I took Taxol in 2004 when I had early stage bc. At first it was okay, but then it really started to bother me. The SRT is supposed to start 3 weeks after the surgery.

Barbara, thanks for reinforcing that this surgery might be easier than I might otherwise think. That's what the surgeon keeps saying, too. That if I went through lung surgery (even the video-assisted minimally invasive kind), then I can do the brain surgery. I asked the surgeon about anti-seizure medication as I know this is often prescribed even if a patient is not having seizures, and she doesn't use it prophylactically. That is, if I'm not having seizures before the surgery, then they don't use it.

The surgery is scheduled for Oct. 17, so it will be coming up really fast.

Joan

Dear Joan,
Part of me feels like I'm reading my own very recent history! I just had a craniotomy on my right cerebellum on 8/08/08 and am just now finishing the AWFUL Decadron. I had failed 2 trials of GammaKnife that starrted 4/07 on the cerebellum and L temporal lobe. My team advised Whole Brain, but I went to my training as an engineer - why a universal fix at first? I have been taking Tykerb/Xeloda for over a year and feel like it's the reason I've had only 2 brain mets (cerebellum was 2.9 cm when found), and my R lung apex lesions have disappeared.) I do tend to walk like I'm drunk and wish I'd had the enjoyment of a drink to get that way, but I'm getting more like myself with each decrease of the Decadron, according to family. I did a lot of reading and thnking before I made my decision. In the end, I went with my gut feelings, and feel comfortable with the result. Getting out of the hospital early, and my neurosurgeon (and staff) reports about how well I'm doing have helped alot as well. I'll be thinking of you and am always available if you ever want to talk it out. What ever you decide, trust yourself... we don't get to make too many decisions in this particular game!
Best of luck and love,
Rentrac

Dear Joan,
I've had craniotomy on Aug.1st. I've just completed my 20 wbrt. I'm feeling much better now but still having mild nausea and this weird metal taste.
You are in my prayers. Best wishes.

Love,
Gemma