Thursday, 30 April 2009

Week 7 .... MRI result and consultation

Sorry about the new Profile Photo but this looks pretty much how I feel after yesterday's news ... anxious and shell-shocked, and several years older!

Wednesday - MRI day.
This was not unpleasant, just strange, plus a little hard on the neck having to keep very, very still for 30 minutes or so. It was also incredibly noisy despite ear-plugs and padding! No word or sign regarding what they could see except to say that the images were good and clear.

Thursday - Consultation with LK, Radiation Oncologist
This turned out to be an incredibly long, long day as my appointment wasn't until 15.50hrs and the time seemed to drag intermidably. And then there was a long wait so I was not actually seen until around 16.50 hrs.

This time Mandy accompanied John and I to the meeting with LK, which also included a trainee radiologist and the radiotherapy nurse who will be looking after me in times to come.

MRI result: Meningioma at the apex of (L) petrous temporal bone extending over inferior aspect of (L) temporal lobe.

What this means is that, not content with having a fat little body cuddled up to the Internal Carotid Artery and facial nerves, Feckit has grown a trailing branch which is growing around part of the underside of the temporal lobe.

The concensus seems to be that this makes it a non-contender for treatment with either conventional surgery, one-session stereotactic radiosurgery or fractionated stereotactic radiosurgery.

Treatment:

Radiation therapy x 30 doses, delivered 5 days per week for 6 weeks. Course of treatment to begin in a month's time (this to give time for my broken front crown to be excised and the bone healed). From what I could understand the treatment may possibly include a mix of 3-dimensional Radiation Therapy and Intensity Modulated Radiation Therapy.

Three-dimentional conformal radiation therapy. Based on images from CT and MRI scans, a 3-dimensional model of the tumor and normal tissues is created using a computer. Beam size and angles are determined in a way that maximises the dose of radiation to the tumor, while reducing the amount of radiation exposure to normal tissue.

Intensity modulated radiation therapy (IMRT). Radiation therapy is delivered with greater intensity or dose to thicker areas of the tumor and with less intensity to thinner areas of the tumor. This is accomplished by placing tiny metal leaves in the path of the beam to reduce intensity and to customise the shape of the dose to the shape of the tumor.

THE GOOD NEWS

1. Feckit is a meningioma and not a malignant tumor.
2. It has not invaded the pituitary fossa.
3. It does not seem to have caused much damage to nerves, blood vessels or brain tissue as yet.


NOT SO GOOD NEWS

1. Feckit is in a difficult place to access.
2. It is not conforming to a shape suitable for FSRS.
3. Radiotherapy should kill the tumor cells but my current symptoms may not be relieved as Feckit may not be obliging enough to shrink away after treatment.

EFFECTS OF TREATMENT

Short term - possible loss of clumps of hair, mild fatigue, mild skin irritation, headache or nausea.
Longer term - likely loss of hearing (L) ear, maybe damage to (L) parotid gland, possible difficulties with other neurological functions e.g. memory, attention deficit.

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So today I have had a bit of a melt-down and felt highly emotional to say the least. Luckily I have a supportive family and some wonderful friends (at times like this you realise what a blessing true friends are) who I hope will understand that I just can't be expected to put on a brave face ALL the time.

Sometimes its good to let your feelings out.

Things will seem better tomorrow. And other platitudes.


Sunday, 26 April 2009

Worry beads ..... only 3 more sleeps

On my first visit to the radiology-oncologist it was suggested that I try Dexamethasone for a while to see if my headaches and nausea improved. Dexamethasone is a steroidal drug that is able to cross the blood/brain barrier and is useful for reducing swelling in brain tissue.

I was not very keen on this idea due to the possible side effects of steroids but LK convinced me to try a small 2mg dose at night. For the first couple of nights it seemed that I was sleeping longer before the nausea kicked in, but by nights 4 and 5 it was worse than ever and has been starting even earlier! I have also felt really lousy during the day for the past couple of days ... although I know that this is possibly nothing to do with the Dexamethasone. But as the drug takes from between 1-4 days to take effect I should be feeling better not worse by now!

The good thing is that my MRI appointment is the day after tomorrow and I will be seeing LK for the results the day after that ......... I am so relieved that I will not have long to wait between MRI and getting the results.

Only 3 more sleeps (well, you know what I mean) until the extent of the problem is revealed.

Hopefully. Whoopee!


Wednesday, 22 April 2009

Week 6 ..... first radio-oncology visit


Tuesday (John's birthday) was my first visit to see the radiology-oncologist who will be looking after me. For some reason I had expected to see a male doctor but was pleased to find that I will be under the care of a woman. I say that because, with a few notable exceptions, as a nurse I have always found it easier on the whole to talk to women doctors professionally, socially and also as a patient. Anyway it looks as if I am going to be in good hands with LK. Very important to feel comfortable about that!

However, it was quite disconcerting to find the LK has some reservations about the CT scan as she thinks the tumour may be affecting bone as well as nerves and blood vessels. Its actual location involves the Left Cavernous Sinus and may extend further.

I have been searching for images that make sense of this for me!!! Not easy. This one gives an idea of where in my head the tumour is .... the dark areas under the part labeled 'sella turcica (bone)' are the blood filled
cavernous sinuses which pass through the sphenoid bone which is shaped rather like a flying bat when seen straight on! The sella turcica is a depression in the sphenoid bone and is where the pituitary gland sits - in the pituitary fossa). As you can see this area lies in fairly close proximity to the back of the throat, nose and optic chiasma.




So having got to grips with where the cavernous sinuses ARE the next question for me to get clear in my own mind was where my dear little tumour (which I after Tuesday I have decided to christen 'Feckit') actually IS in relation to everything else .......




So looking at this diagram from the lower right there is a purple line labelled 'Dura and Arachnoid' - if one follows this purple line this is exactly where Feckit is growing, and it is encircling the blue area (one of the cavernous sinuses) and possibly the floor of the pituitary fossa. The diagram clearly shows the difficulties in treatment decisions due to the positions of the nerves, arteries and other vital structures.

The next image is a similar view as the diagram above but is from an MRI with diagrammatic explanation of structures.



The big question at the moment is how far has Feckit managed to affect the cavernous sinus and its contents and whether there is any infiltration into the sphenoid bone or elsewhere.

But fear not, Lesly, all will hopefully be much clearer after the MRI next week. Fingers crossed!

Sunday, 12 April 2009

Worry beads ...... brain tumour radiosurgery


Understandably enough, I suppose, I have been finding out all I can about the management and treatment of meningioma, particularly regard to radiosurgery, which the neurologist has told me is the most likely course for mine due to its location at the base of the brain. All I can remember from the CT pictures is that it is on the underside of the cerebellum and pressing on part of the brain stem. The MRI scan due at the end of the month will show its exact shape and whether or not it is encroaching on any major blood vessels or other vital structures.

My initial understanding was that my treatment might be by Gamma-knife as I had assumed (wrongly as it turns out) that this was the form of radiosurgery used at Dunedin Hospital but, having researched the subject a bit further, I find that this is not the case and Dunedin uses a different machine and method to that of Gamma-knife.

It certainly can all become very confusing due to the various terms used for describing different forms of cancer treatment, such as radiation therapy, radiotherapy, radiosurgery!! But I think I have got the gist of it now!

RADIATION THERAPY:

Whole brain radiation therapy (WBRT) can target large areas of the brain resulting in neurotoxicity to healthy brain tissue as well as tumour cells. Side effects may be acute (occurring within hours or days of treatment), such as hair loss, nausea, vomiting, severe cerebral oedema (swelling of the brain), or chronic such as brain atrophy, necrosis, neurological deterioration and dementia.

WBRT is the most damaging of all types of radiation treatments to the brain and causes the most severe side effects in the long run. Major studies and research are increasingly demonstrating that alternative forms of therapy, i.e. radiosurgery and stereotactic radiotherapy, can be as effective as WBRT but without the side effects.

RADIOSURGERY:

Radiosurgery is generally taken to mean the delivery of a single targeted radiation treatment to the tumour using narrow beams of radiation delivered from multiple angles. This limits radiation to healthy brain tissue to little or none and takes place in a one-session treatment. It is also called Stereotactic Radiosurgery.

The most common machine for this type of treatment is the neurosurgical instument called Gamma Knife which severaly restricts radiation to the tumour bed with negligable overlap to healthy tissue. Gamma knife is used specifically for radiosurgery to the brain.

Stereotactic radiosurgery can also be undertaken using Linac technology.

Linac is short for the term linear accelerator. Linear accelerator machines produce radiation that is referred to as high energy X-ray. A linear accelerator machine is designed to be a
general purpose radiation delivery machine and in general requires modifications to enable it to be used for radiosurgery or IMRT (intensity modulated radiation therapy). Often, the modification is the addition of another piece of machinery.

Linac machines may be dedicated or non-dedicated. Dedicated linac machines have the additional equipment to perform higher level treatments permanently attached to the radiation couch. This is the preferred method.

Non-dedicated linac machines may be used for conventional radiation therapy in the morning and after adding the attachment, are used for higher level treatments in the afternoon. Non-dedicated linac machines are unable to acquire the same degree of precision and accuracy that dedicated machines may have.

STEREOTACTIC RADIATION THERAPY (also called FRACTIONATED RADIOTHERAPY/SURGERY)

Radiation is delivered with the same precision as in stereotactic radiosurgery but is divided into small, daily fractions over several days or weeks using a relocatable head frame. The intent is to reduce radiation injury to nearby brain structures while maintaining tumour control. The machines that do fractionated treatments are linear accelerator based.

According the International RadioSurgery Association:

"It should be noted that with daily treatments over time there is less accuracy than with one session radiosurgery as the skull cannot be targeted in exactly the same place (repositioned) and manner with each subsequent treatment as it was in the first treatment. IGRT (Image Guided Radiation Therapy) allows for each session to be reimaged before the treatment that can provide more accuracy than without the imaging. All high level linac machines are considered high-level and provide IGRT imaging including the X-Knife, Trilogy, Synergy, Novalis and CyberKnife. These machines would be considered comparable in effectiveness of treatment and outcomes.

However, the most precise, lowest cost and accurate treatment is still with one session radiosurgery."

So my little worries at present are:

a. It would seem that Gamma-Knife is the best method of radiosurgery but this is not an option (nearest Gamma-Knife unit is in Sydney).
No good wishing for the moon then!

b. Dunedin Hospital offers linear accelerator radiosurgery using X-Knife. From the literature it would seem that this is not quite as good as, but is next best thing to, Gamma-Knife.
How lucky that there is a treatment available. However, is it a dedicated or non-dedicated machine?

c. Will the team decision be to go for stereotactic radiosurgery (one session on one day)? Or might they feel that fractionated radio therapy might be more effective?
This might depend on the position of the tumour and what other structures are involved, so I must wait until after the MRI to find out.

d. An IMMEDIATE worry is that my temporary crown repair is falling away and the whole thing is threatening to fall out! .... and I don't see the orthodontist for another 3 weeks!!!!!

HELP!


Tuesday, 7 April 2009

Week 4 ..... triage and teeth!

Triage

On Saturday I received a letter from a department called the Blood and Cancer Unit, Dunedin Hospital (a title enough to put the F.O.G. up anyone!) to say that they had received my referral from the neurologist and, after discussion (triage) my case has been graded as "semi-urgent". Semi-urgent cases are expected to be seen within four weeks of referral according to Government recommendation/guidelines.

Having got over a rather 'hoppity-skip' heartbeat on seeing the words "Cancer Unit", I quickly realised that this department is where the Radio-Surgery is carried out. So I shall expect to see the radiology-oncologist sometime around the MRI scan due at the end of the month ............ I wonder whether the 4-week guideline will be adhered to!

On Monday I woke up with nausea about 4.00 a.m. as usual but, having got up and played on the computer for a while, was able to go back to bed and sleep a bit longer. It was a nice sunny day and I actually felt energetic enough to get out in the garden and do some pruning and trimming - this is the first time for a very long while that I have felt 'normal'! The same on Tuesday and today!!!!!

Its really amazing to suddenly feel 'well' ..... I hadn't realised just how bad I was feeling until I stopped feeling bad. C-R-A-Z-Y!!

Don't know what has changed or whether it will last but by golly its nice.

Oh yes - must not forget the tooth!

..... as I was feeling A1 yesterday I had arranged to meet a girlfriend for lunch and a chat. Over lunch I became aware of a little rough patch on my upper front tooth. This tooth is a very old crown and has had a crack in it for a long time. As soon as I got home I whipped into the bathroom to check in the mirror ..... and the front of the crown promptly fell off!

Luckily I was able to get an emergency appointment with my dentist for 9am this morning. But the news is not good expense wise! First off antibiotics for root infection, next must go back tomorrow for impressions for a temporary plate, after that must wait to see orthodontic surgeon for removal of crown, broken pin and root. Then will come the big decision ..... to go for a plate with one tooth (moderate cost) or an implant (mega-bucks).

Mega-bucks looks favorite at the moment .....

"because I'm worth it"!!

Well, if Jane Fonda can say it ...............




Thursday, 2 April 2009

Week 3 ...... being a patient

It really is quite hard .............. while I have been 'A Patient' on other occasions this time around I find I have much less inclination to be 'Patient' about it! Although it is only 17 days since ThePhoneCall it seems like a month at least, and of course I was waiting quite a while before that (for the referral letter to go off, for the CT Scan appointment to arrive, for the scan to be reported on, etc).

I am not hot on waiting.

Still I suppose things are moving along ... time waits for no woman after all. And yesterday the appointment arrived in the post for the MRI. End of April.

Bad thing - its 26 more sleeps away.

Good thing - I am not an emergency .......... I think I rather like that!

Meanwhile I must continue to keep busy but also remember to take the odd moment to smell the roses and look at the view ....



Our house - a work in progress (patience needed)



The view from our lounge (instant therapy)