PET scan again clear

I forgot to mention that I was having another PET scan this morning. I have had PET scans at the initial diagnosis and at the first two check-up points (see here for a brief description). I haven't needed one since then, though asked my oncologist for one prior to leaving for Edinburgh (we depart on 4th August). I thought I wouldn't have it until mid or late July, but then I received a call just a day or two ago telling me that I was booked in (they didn't ask when would be a good time; they just said, "Here is your scan time. Be there.").

In any case, if you're waiting for me to get to the point and post the result, then you forgot to read the title of this post!

PET scan clear

My PET scan at RPA today confirmed the CT scan from a week or so ago in showing no new cancerous activity.

Some people really don't like PET scans because you get strapped in place and can't move at all for about twenty minutes while you lie encased within a cylindrical machine that measures your radioactivity (after you've been injected with radioactive sugar). If you're claustrophobic, I imagine it could be quite distressing. I don't mind it (apart from getting an itchy nose) - an extra chance for a nap.

I discovered just a minute ago that contrary to what I said in my previous post, Prof Tattersal had not been planning on my having this PET scan until he noted a tenderness in a lymph node near my clavicle. I think I had just forgotten how uncomfortable a lymph node palpitation can be and flinched when he stuck his fingers into my neck. This also happened the first time he did it, but on subsequent times I was ready for it.

Yet another scan

I wasn't sure when I went to have my recent CT scan last Friday whether I would also need to have a PET scan (the second paragraph of this post explains what a PET scan is). I thought this would only be necessary if there was bad news, but having seen Professor Tattersal (my oncologist) on Tuesday, I found that he was planing a PET scan in any case. So I've just arranged to have it first thing Monday morning. I presume I will continue to have both scans every few months for the next couple of years.

Speaking of Professor Tattersal, I've really appreciated my times with him. He is always understated, has a sharp wit and a strong desire to make it into the Guiness Book of Records. He is also very geneous with his time and has made himself very easy to contact when needed.

At my Tuesday appointment, I asked how to minimise the chances of a relapse and he made three suggestions: (a) don't lose lots of weight, (b) exercise well (Jessica and I started a new exercise program a couple of weeks ago and are - amazingly - being quite consistent with it. We're starting slowly since I've lost a lot of stamina and strength) and (c) think positively.

As I was leaving, he also asked me to have a blood test "because you're here". It was disconcerting to go back into the chemo suite, even for a few minutes. There is so much pain and anxiety in that space. Even just sitting in a chair, I began to feel a little queasy in memory of past experiences. The nurses are very caring and competent, though the one taking my blood had trouble finding a vein (which didn't help my queasiness). Unfortunately, yesterday I received a call to ask me to come back in, since my blood had been misplaced. I'm just heading off there now. Another day, another needle.

Scan and voice

Tomorrow I will have my next CT scan to see whether anything has happened since the last one. If it is different, I assume I get the privilege of another PET scan. I'm not sure whether I will get the results tomorrow or Monday. Please pray that Jessica and I will continue to trust God as we await the outcome - and that it's a good one!

I also saw the speech therapist again yesterday and learned a few more things. First, I found that my left vocal cord is paralysed in a paramedial position (partially 'on', rather than fully 'off' as I had thought) and this is why my voice has returned to the level that it has (i.e. more than nothing, less than it was). Second, she very kindly invited me to a workshop she is organising for speech therapists to watch a world-famous voice teacher work with some of her patiences (one of whom will be me!). So I get a free consultation with a lady who normally charges over $200. The only price is that I'll have twenty therapists watching me as I do so. And third, I found that if I do end up having surgery on my larynx, this would involve the insertion of a bioplastic wedge to jam my left chord more fully on (rather than a collagen injection as I had previously thought). Compared to the injection, this sounds like a more uncomfortable procedure (a local anathestic while they cut your neck open; they need you awake so you can be testing your voice as they do it!); however, the injection needs to be repeated every few months, while this procedure would be permanent. Either option might only have a marginal effect on my voice (or none at all), though if I'm going to use my voice for a living, this could be worth it.

Next scan soon

It's been over two months since I received the all-clear from a PET scan and so about time to be scanned again. I've been trying to contact my oncologist this last week, but he must be on holidays. He's usually very good at returning calls quickly. It's been over two months since my last cannula, but my wrists are still tender...

UPDATE: Just found out he is away and will be back in early July.

Update: 13th April

PET scan next week
Just got a call to say that my PET scan will be on Monday morning 9 am. I fast for five hours beforehand (so that I'm ready to go really slow for a few hours...). This scan is to determine whether the residual mass revealed in my most recent CT scan is still active or is merely scar tissue. I get an injection of radioactive glucose (sugar) and sit very still for an hour. Sugar is picked up by cells that have been active (which is why I sit very still - so that as little as possible goes into other muscles), particularly the brain and active tumour cells. I then lie inside a large tube that functions as a 3D Geiger counter, measuring where radiation is coming from (i.e. which cells have been picking up the glucose). I probably won't get the results for at least a couple of days. I'll post an update here as soon as I know.

Speech therapy
In other news, yesterday I went to my first session of speech therapy proper and have been given a variety of amusing sounds to practice. I would have been really good at being a speech therapist before I lost my voice - I used to love practising silly noises.

Update: 22nd March

Taste and see that the LORD is good;
blessed is the one who takes refuge in him."

- Psalm 34.8

God is faithful in times of prosperity and adversity. We continue to be so thankful for all the good things we receive from his hand.

CT scan
Yesterday I had my first post-treatment scan (a CT scan) to begin to determine the effectiveness of all the chemotherapy and radiotherapy I received in January and February. The results were very encouraging. There were no secondary growths (i.e. the cancer has not spread) and the primary tumour had shrunk to about a quarter of the volume it was back at the start of December when I was first diagnosed (the only other time it was measured in a scan). On 1st December, it measured 35 mm by 30 mm by 25 mm but yesterday it was 25 mm by 17 mm by 16 mm - a very impressive reduction. The radiologist who reviewed the CT scan was also impressed at the comparatively minimal damage done to the surrounding area (esp lungs) by the radiotherapy.

However, yesterday's scan does not reveal whether this residual mass is merely scar tissue or active tumour. To find out, we need to wait another month to continue to allow the radiotherapy to have maximum effect and then I will have a second, different scan (a PET scan) to measure cell activity. More waiting - no wonder they call us 'patients'!

Side-effects
After finishing radiotherapy just over a month ago, I have been recovering from the various side-effects and feel as though I am well past half-way (though not yet 100%). I still have less energy than I used to and am still expanding the kinds of food my oesophagus can tolerate. For much of this month, I have been on a liquid diet but have recently been enjoying food with more substance.

Voice
My voice, though a little stronger than it was a month or two ago, continues to be quite different to what it once was. It is likely that this will be a permanent issue since the damaged nerve that controls my left vocal cord may never recover. However, with some speech therapy over the next couple of months I might continue to gain a little more volume. I am able to preach and give talks using microphones, but conversation in noisy contexts is very difficult, as is singing - a loss I frequently mourn.

Church
Apart from these factors, Jess and I have been well. We are both enjoying our work, as well as the extra time we've had to rest and recover while both being part-time. We are settling well into our not-quite-so-new church at Leichhardt and have started a couple of small groups for people our age, which have been very encouraging.

We have really appreciated all the generous support from so many: gifts, practical help, people willing to listen, and a constant supply of food and prayers. God has given us all we need and so much more!

Prayer
For those who pray...
Give thanks:

• for God's generosity towards us all: giving us life and every good thing, especially his son.
• for the love and support we have also received from church, family and friends in a variety of forms.
• for the good result on yesterday's scan, and how far we've come on this little adventure since the start of December.

Pray:

• that the remaining mass will be all scar tissue and not contain any active tumour cells.
• that while waiting for a more definitive result next month, we will be patient and thankful for each day, without anxiously grasping after an answer or deferring our lives.
• that I might continue to regain strength and would use this to serve the God who loves life.

Update: 19th March

It has now been about a month since I finished treatment. This Wednesday I have my first post-treatment scan. It will be a CT scan to determine the size of the remaining growth (if any). In another month I will have a second scan (a PET scan) which will give the other half of the picture: whether what is left is still active. Thus, while there may be something left, this could just be scar tissue and it will be another month before it is possible to tell. However, Wednesday's scan will also (hopefully) rule out the worst case scenario of there being secondary growths indicating that the cancer has spread. More on Wednesday (or possibly Thursday), when I will send out another group email (and post it here too).

Update: 19th Feb

End of radiotherapy
Praise God - I have reached the end of this treatment cycle! I have just returned home from my final day of radiotherapy (#33) and last Wednesday received my 7th and final doses of chemotherapy. I am exhausted and in many ways at the lowest point I have reached physically, but remain filled with hope and feel great relief, since the next few weeks should involve gradual recovery. Since radiotherapy will continue to affect my body for the next couple of months, it will be many weeks before the effectiveness of this treatment cycle can be determined. I will have a full CT scan in a month (which will reveal how much of the growth remains) and then another full PET scan in about two months (which tests whether it is still active). We are praying that the growth will have entirely disappeared . However, it is more likely that a scarred area will still show up on the CT scan. If so, we're praying that it is no longer active.Side-effects
As for side-effects, the radiotherapy has really overtaken the chemotherapy in the last couple of weeks. Not only am I even weaker and more tired than ever, but recently it has become increasingly difficult to swallow due to radiation burns to my oesophagus. For the last week or so I have been limited to fluids (water, juices, thin soups, melted ice-cream (thank God for small mercies!), special dietary supplement drinks, yoghurt and the like) and even then require painkillers and an oral anaesthetic (which I gargle before meals) to get things down. It's not much fun. But this level of discomfort is only likely to continue for another week or two. I am now glad that I put on so much weight in December!

God is good
Each morning, Jessica and I wake up and remind each other "This is the day that the LORD has made", to which the other replies "Let us rejoice and be glad in it!" (Psalm 118.24). Despite not being able to do all that I once could (and might, God willing, one day be able to do again), life is good, very good. We are so blessed by the generosity and support of family, friends and strangers, by having a beautiful new church family at Leichhardt where God is clearly at work, by living in a country with a (largely) functioning medical system, and by having a sure hope that as we have died with Jesus to our old lives, so we will also rise like him when God makes all things new.

Work update
Jessica continues to enjoy her social research position at St Leonards and the occasional continued support she can offer to the EU Graduates Fund (where she was working for the last few years). Our time at All Souls, Leichhardt has started well. We have met many people, welcomed a number of newcomers even more recent than us and started a weekly small group for 20-30s. I have also preached twice (sermons can be downloaded here), led some services, done a little reading, begun planning a few outreach events in coming weeks and attempted to keep the church and many of you in my prayers.

Prayer
Speaking of prayer, here are some suggestions for those who pray.
Give thanks:

• For reaching the end of this treatment cycle and for its apparent effectiveness.
• For Jessica's thoughtful concern and love as primary carer. Also for the many others who give their time, energy, friendship, food and prayers in support.
• Because our Father is faithful, because Jesus' blood never fails, because the Spirit blows with the promise of a new age.

Pray:

• That the treatments will have been effective, that God will have used it to bring complete healing, that the test results will show only scarring and no active cancer anywhere in my body.
• For patience with eating difficulties and that I'll be able to maintain adequate nutrition despite limited options and little desire to eat. Also for patience and peace as we wait the next few weeks for results.
• For energy when I need it and the ability to rest at other times. For Jessica to also have good rest during this time of stress.
• For the new small group at All Souls, that it will be a place of life and peace, where we speak the truth in love to one another, welcome newcomers and care for those who are struggling.

Update: 14th Feb

Final Chemo
After waiting for three hours for blood results that usually take 30 minutes, we ended up back in the pack today rather than being one of the first. This made for a long day: 8 am start and just got home at 5.30 pm. But it's over - at least the chemo part (3 more days of radiotherapy). I've really enjoyed getting to know some of the nurses and their quirky sense of humour. Don't think I've overcome my needle squeamishness, even after so many (I lost count weeks ago).

Our oncologist was again positive today. Once all treatment is over, we'll wait a month and then I have a neck-to-toe CT scan. He said he would be surprised and disappointed if the news is bad, but since he's still unsure of the cause and nature of the growth, there are certainly no guarantees. After the CT scan, we wait another month and I have a PET scan to confirm there is no unusual growth activity (God willing). If that is also clear, then I'll keep having checks every 3-6 months for a few years before the all clear is given. If the growth is still active in a month or two, then the question of surgery will again be asked (which depends on how much it might have shrunk and in which directions. When I first presented, surgery was ruled out because the growth was inside my left bronchial tube and too close to my oesophagus and aorta). If the news is very bad (new growths), then that is a whole new ball game, probably involving a shift from curative to palliative treatment, but he said he'd be very surprised were that to be the case. We continue to trust God for the outcome, whatever it may be, though are very thankful for the positive indications we've been receiving so far.

As for side-effects, the radiotherapy has certainly overtaken the chemotherapy. The main issues now are still tiredness, but also swallowing and reflux. In particular, I am basically now on a fluid diet: soup and tasty dietary supplement drinks. Occasionally, I put in the effort to have something very soft, but it is quite painful, even using an oral anaesthetic (Xylocaine) that I gargle before some meals. The reflux is more a constant dull feeling of burning as the lower end of my oesophagus, weakened by the radiotherapy, fails to keep back the acids from my stomach. I take antiacids to reduce the effect, but it's particularly annoying at night and I still sleep propped up in bed (and with our bed propped up on some bricks) to get what help I can from gravity.

My second sermon on Sunday (on the two natures of Christ in the Apostles' Creed) was enjoyable to write, though due to tiredness, I ran out of time to cut it back as much as I would have liked. It can be downloaded here (or it will there soon, depends on the volunteer who manages the website). Here is a taste. Last night, we also started a new Bible study for 20s/30s and got off to a solid start.

Update: 31st Jan

Just a brief post to say that chemotherapy today was not affected by my food poisoning episode yesterday. I still received both the usual drugs (I will soon continue to extend the FAQs to discuss my treatment), and again had no reaction, thanks to the 20 mg of Dexmethsone that will probably keep me up tonight! Finding good veins for the canula is getting more difficult as some of the ones they have been using in the past are hardened from the treatment.

Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.

Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).

Diagnosis

What do you have? What's the story? How big is it?
I have a primary squamous cell carcinoma of the upper aero-digestive tract. For those less medically inclined, let me explain each part. It is a carcinoma, generally known as cancer - a malignant tumour measuring 3.5 by 3.0 by 2.5 cm in size (or at least it did on 4th December. Hopefully it has already begun to shrink with treatment).

How many growths are there?
It is a primary tumour, which means that this growth is the original one. Left unchecked, it would spread to my lymph nodes and then to other parts of my body through a process called metastasis. Fortunately, we seem to have found it before this deadly self-reproduction had really got underway. However, in late December before I started treatment, my oncologist did find some a small tender lump in one of my neck lymph nodes. This seems have disappeared with chemotherapy. Similarly, a PET scan in mid-December discovered a few other possible secondary growths, though these were inconclusive and too small to treat with radiotherapy. The hope is that chemotherapy will have mopped them up.

What kind of cancer?
It is a squamous cell carcinoma, which refers to the kind of body cell in which the growth originated. Cancerous growths are normal body cells gone wrong, which start to reproduce themselves much faster than they ought and without reference to surrounding tissue. If this happens in or near a vital organ, it will eventually be fatal as that organ is taken over or crushed by the new growth. Malignant growths are those that also send out more cells into the rest of the body and begin to reproduce themselves elsewhere. By definition 'cancer' means malignant. Some tumours are 'benign', and just stay in one place (this can still be dangerous or deadly in some locations), but they are not generally called cancerous. Squamous cells are the cells that form linings inside the body, particularly in the oesophagus (food pipe) and trachea (wind pipe).

Where is it?
It is in my upper aero-digestive tract. This is a deliberately ambiguous classification since they are still not sure if the tumour began in my oesophagus (more common, but less likely in my case, given biospy results) or trachea (rare for a 28 year old non-smoker). The growth is located between these two tubes and grows into the base of my trachea, in my left bronchial tube (connecting the trachea with my left lung), partially obstructing it (this had been making breathing difficult until recently). It is a few inches above my heart. If you draw a horizontal line between my armpits, it is located on the left side about a third of the way across my chest. Please note: despite my voice being affected (and how we first discovered the growth), it is not a throat cancer, nor is it a lung cancer.

Can they operate?
No. Or at least not for now. Not only does it presently impinge upon two vital tubes already mentioned, worst of all, it is snuggled under a loop of the aorta (main artery exiting the heart). It is also hiding behind a rip, blocking clear access from my back. There may be some chance of surgery once it has shrunk from the combined chemo-radiation that forms the core of my medical treatment.

How serious is it?
Very serious. The rapid onset of symptoms seemed to indicate that it has not been around for long and was acting very aggressively. The speed with which I was given treatment indicated the pressing need for action. The possibility that it was already spreading (see above) also shows that it meant business. No one has given me a definite prognosis, as the rarity of my age and condition means that statistics are too scarce to make even an estimate. We just live each day as a gift, with hope in the God who raises the dead - and who also sometimes heals the sick.
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