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.

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.

the best laid plans

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

Not a practical option

Earlier this week, or maybe it was last week, I saw several articles on this new intraoperative radiation for breast cancer. This is when a radioactive probe is inserted into the breast during surgery and allows the patient to skip traditional radiation. Of course, they may still need chemotherapy and other treatments.

The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.

The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:

"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.

The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."

"...The initial price of the treatment is expensive, with each probe costing £500,000.

The procedure is performed during surgery.

Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."

That is when I fell off my chair. Am I understanding this correctly? Each probe costs  £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.

If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.

the best laid plans

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

Not a practical option

Earlier this week, or maybe it was last week, I saw several articles on this new intraoperative radiation for breast cancer. This is when a radioactive probe is inserted into the breast during surgery and allows the patient to skip traditional radiation. Of course, they may still need chemotherapy and other treatments.

The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.

The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:

"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.

The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."

"...The initial price of the treatment is expensive, with each probe costing £500,000.

The procedure is performed during surgery.

Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."

That is when I fell off my chair. Am I understanding this correctly? Each probe costs  £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.

If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.

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?

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.

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.