home!

Best news:
Clean margins. Clean MRI. Home to heal better.

Extremely tired and drugged but pain meds managing.

It was cancer. Very like original adenocarcinoma from 2006 (i.e it's breast cancer in my brain). Full pathology in a couple of weeks. 

Next treatment will be one dose of cyber knife radiation in a couple of weeks.

I have herceptin mid-December, not sure if anything will change on that front.

Writing is very hard but I am doing well.

More on whole experience soon.

Thanks to you all so much.

going with doors number 2 AND 3

I've been persuaded to have surgery, followed by targeted radiation. This will be my best shot at getting it all.

I really liked the surgeon we met yesterday. He was patient, clear, forthcoming and took lots of time to answer our questions. I've decided to trust him.

I was feeling pretty devastated yesterday. I was hoping hard that the route I wanted to go would also be the best route. Who wouldn't want the treatment that purports to have few side effects and doesn't involve having your head cut open?

But I went for a lovely walk with a friend and then slept for 11 hours last night. Today, I feel much more at peace with my decision.

Although I'm still a little freaked out.

One cool thing: The surgeon says that if you rate the difficulty level of what the kinds of surgery he does from 1-10, mine will be a 3.

Makes it sound pretty simple, for brain surgery.

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

pondering options

I know that some of you are waiting for a post about yesterday's appointment. I do plan on writing a longer post but have been too busy with lots of good things to get to it.

For now, I'll just say that I'm fine. I was actually offered options at my appointment and have to make choices. This is not bad news, though, just not what I expected. We're doing lots of talking and reading and re-visiting. The radiation oncologist has referred me to surgeon for consultation. I'm still going into the Cyber queue and one way or the other will be dealing with the tumour in 3 to 4 weeks.

Stay tuned for a more detailed post in a day or two.

time is still relative

November 1st.

That's when I'll meet the radiation oncologist, ask some more questions, get more information and most i mportantly - MAKE A PLAN.

This morning, I spoke to Rejeanne, the nurse who works with my medical oncologist. I must have gasped when she told me the date of my appointment because she said (and kindly),  "If Dr. Gertler thought the appointment needed to happen sooner, he would have said something."

And so I wait. November 1st is only a little over 2 weeks away. 

It feels like an eternity.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.

limbo

I haven't even mentioned yet that I had some CT scans last Friday morning. I guess the whole experience was overshadowed by the CyberKnife drama and it's after effects.

The scans themselves (done all at once but there were three) were a breeze. The technician got my vein (for injecting the contrast dye) on the first poke and all went smoothly. I'm an hold hand at these things and being nervous about the unknown of CyberKnife left me no room to worry about the scans. I was out of there in half an hour and promptly forgot about it, in favour of what loomed ahead.

Now though, five days later, I'm worrying. I had my thorax, abdomen and pelvis scanned. I have absolutely no reason - except history - to be worried. But it's nagging at me. 

What if my gut rats (that I've been blaming on CyberKnife) have something to do with this? (although I have no reason to believe that they would)

What if the swollen gland in my groin that I had back in the summer, meant more than having a cold? (although I've been reassured that it's nothing)

What if...? (you can fill in the blank)

I don't see my medical oncologist until February 6th but I can't wait until then for answers. I see my GP tomorrow (for a referral) and she always gets copies. Perhaps she'll be able to tell me something. 

If not, I'm calling the nurse who works with my oncologist on Thursday. She's given me answers before.

It's supposed to take a week for results. Thursday is almost a week later. It would be nice to be let off the hook of suspense.

I'd become quite blase about CT scans for a while. I didn't even care if I had them. The discovery of the brain tumour has certainly shaken my confidence.

eating out for CyberKnife

I really want to write a longer post about CyberKnife. In the end, I only had one session (and it felt like more than enough) but it might as well have been three because this "no side-effect" treatment made me really sick. Four days later and I still feel sick to my stomach. 

I was just remembering thinking that after chemotherapy, my breast cancer radiation would be "a walk in the park" but I hated almost every minute of it. And I had almost every possible side effect. 

I hate radiation. It's really worth it, though if it keeps my tumour from coming back. And if others appear, I know this treatment is there for me.

 I'll write about the experience in greater detail later but today I wanted to tell you about an event I'm going to attend. If you live in Ottawa, and are in a position to eat out, you should consider it, too. Never has it been easier to make a contribution:

The small print, that's nearly impossible to read, explains that on January 23rd, participating local restaurants will be donating 25% of their proceeds to the CyberKnife and research programs at the Ottawa Cancer Centre. 

It's a good idea any day of the week but since I just finished CyberKnife treatment, it seems particularly appropriate (assuming my stomach agrees and I feel better). I'll be going to the Atomic Rooster with Tim because I've heard really good things, Tim says the food looked great when he was there last week for a friend's vernissage and because her art show is still running and I can see it too.

Click here for the list of participating restaurants (scroll down) There are more than 100! and to read more about CyberKnife in Ottawa.

Finally, here's a short video where a neurosurgeon (mine!) talks about the importance of the CyberKnife to the Ottawa Hospital.

update: looking up

The pity party is over. I'm feeling much better now.

My energy levels have started to come back and my walks are getting longer and faster.

I had a wonderful week in Florida that contributed greatly to healing. I even swam a bit while I was there. I can do the sidestroke and the crawl but my neck won't yet let me do the breast stroke.

I did a bunch of balance tests today that I passed with flying colours. My balance wasn't really that bad but the tests I found challenging (pretty much the same as a sobriety test) two months ago were really easy to do today. I hope that translates into less falling down.

I still have pain in the back of my head. It's not near the incision, which is long and itchy but healing well. This feels more like a giant bruise on the top and back of my head. I can't bear for anyone to touch me there, sometimes it throbs and when I overdo it, my head feels like it's in a vise. It turns out that this is not unusual and healing will take three to six months. Just knowing that it's no big deal (and not a sign that my brain is swelling) is very reassuring. Apparently surgery damaged my muscles and all the extra blood and air beneath the surface need to go away. Or something like that. I was given a more scientific explanation but that's what I retained.

Tomorrow, Monday and Tuesday, I will undergo three CyberKnife sessions (either 'one dose in three treatments' or 'one treatment in three doses.' I can't remember. I had a terrible appointment with my radiation oncologist to lay out the plan but I'll save that for later. I really don't feel like making my blood boil so close to bed time). I still don't much like my radiation oncologist but I hear he's really good at the zapping part, which is what's important.

I also have a CT scan tomorrow of my abdomen and thorax.

I'll have an MRI in two months and then every three to six months thereafter.

I have a serious crush on my surgeon. I think Tim might too. After Dr. S. left our appointment today, we both gushed, "He's so good!"

I feel like I'm crazy busy, which is why I haven't been writing.  I guess when you do nothing for weeks at a time, you end up paying the price. I need to be careful not to overdo it, though (see above, re the vise).

And how have you all been for the last eight weeks?

time is still relative

November 1st.

That's when I'll meet the radiation oncologist, ask some more questions, get more information and most i mportantly - MAKE A PLAN.

This morning, I spoke to Rejeanne, the nurse who works with my medical oncologist. I must have gasped when she told me the date of my appointment because she said (and kindly),  "If Dr. Gertler thought the appointment needed to happen sooner, he would have said something."

And so I wait. November 1st is only a little over 2 weeks away. 

It feels like an eternity.

going with doors number 2 AND 3

I've been persuaded to have surgery, followed by targeted radiation. This will be my best shot at getting it all.

I really liked the surgeon we met yesterday. He was patient, clear, forthcoming and took lots of time to answer our questions. I've decided to trust him.

I was feeling pretty devastated yesterday. I was hoping hard that the route I wanted to go would also be the best route. Who wouldn't want the treatment that purports to have few side effects and doesn't involve having your head cut open?

But I went for a lovely walk with a friend and then slept for 11 hours last night. Today, I feel much more at peace with my decision.

Although I'm still a little freaked out.

One cool thing: The surgeon says that if you rate the difficulty level of what the kinds of surgery he does from 1-10, mine will be a 3.

Makes it sound pretty simple, for brain surgery.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

pondering options

I know that some of you are waiting for a post about yesterday's appointment. I do plan on writing a longer post but have been too busy with lots of good things to get to it.

For now, I'll just say that I'm fine. I was actually offered options at my appointment and have to make choices. This is not bad news, though, just not what I expected. We're doing lots of talking and reading and re-visiting. The radiation oncologist has referred me to surgeon for consultation. I'm still going into the Cyber queue and one way or the other will be dealing with the tumour in 3 to 4 weeks.

Stay tuned for a more detailed post in a day or two.

home!

Best news:
Clean margins. Clean MRI. Home to heal better.

Extremely tired and drugged but pain meds managing.

It was cancer. Very like original adenocarcinoma from 2006 (i.e it's breast cancer in my brain). Full pathology in a couple of weeks. 

Next treatment will be one dose of cyber knife radiation in a couple of weeks.

I have herceptin mid-December, not sure if anything will change on that front.

Writing is very hard but I am doing well.

More on whole experience soon.

Thanks to you all so much.