09th Oct2011

Astrocytoma: 6 years in 8 MRI scans

by Dutchcloggie

So here they are: Jane’s MRI scans that show how this all went down. They can no longer find the scans they did first, in 2005 so the first view of the tumour is from 2006, a year after surgery. It is difficult to compare scans exactly as they have been taken by different machines, at different times and with different contrast substances. So when something lights up really bright in the picture, that does not always mean the tumour got a lot worse.

January 2006
Diffuse Astrocytoma MRI January 2006

There is a clear grey area on the left of the front (the MRI is mirrored so the left of the picture is the right of the brain). It is clearly visible that the tumour is diffuse. There are no clearly defined edges. It is not crossing the midline of the brain.

January 2007
Diffuse Astrocytoma MRI January 2007

Although some areas light up more, it is clear the shape & size of the tumour has not changed much since the last scan. Indeed, Jane is still happily living a normal life, forgetting about the tumour, free from any symptoms.  The difference in contrast can sometimes be as simple as it being a different machine (or me not using the exact same slide).

January 2008
Diffuse Astrocytoma MRI January 2008
A year later and the tumour is still roughly the same size. At this point. the doctors were discussing a possible tiny tiny change. However, the change was so small that some said there was no change at all. It is difficult to judge from the scan how big the actual tumour is and what is swollen healthy brain tissue.
October 2008
Diffuse Astrocytoma MRI October 2008

Now things have changed. Jane had been complaining of headaches and double vision. The tumour is clearly larger than previously. It is also obvious there is a lot more swelling and the tumour is pushing against the midline, bending it out of shape. This is called mass-effect. The tumour has invaded the Corpus Callosum and this means it is now inoperable. The swelling of healthy tissue is once again difficult to separate from tumour tissue. Based on this scan, Jane has radiotherapy.

July 2009
Anaplastic Astrocytoma MRI July 2009

After the radiotherapy, the tumour has shrunk a little in size. Unfortunately, as is very clear from the 3 bright spots, the radiotherapy has caused extensive brain necrosis (death of healthy brain tissue) and the bright spots are cysts filled with fluid, where brain used to be. Further more, the centre of the image shows the tumour has crossed the midline and has taken on the appearance of a much more aggressive tumour. It is now no longer a benign tumour but an Anaplastic Astrocytoma Grade III. In short: radiotherapy has not worked and caused brain damage. No cure is possible after this. Chemotherapy is started.

January 2010
Anaplastic Astrocytoma MRI January 2010

After 6 months of chemotherapy, the tumour has shrunk somewhat. It no longer presses on the midline of the brain. There is considerably less mass-effect. The grey area is smaller, although the cysts remain. They will not go away. This is a positive result compared to the previous scan and there is hope that the chemotherapy will continue to contain the tumour.

June 2010
Anaplastic Astrocytoma MRI June 2010

Very little change in the scan. Some slight change in the grey area but I can not tell if this is just because it is a different scan or if this means something. Although Jane’s symptoms are getting worse, the scan offers no proof of further progression. Just like there can be a tumour with no symptoms for a long time, it is possible to have symptoms longs before the scan shows any change.

September 2010
Anaplastic Astrocytoma September 2010

2 months later, the story is completely different. The chemotherapy is no longer working. The scan is not as clear as the previous ones but it is obvious that the tumour now stretches much further in to the brain. It has now reached the brain stem and affects both sides of the brain. There is no sure fire way to distinguish between diffuse tumour tissue and brain swelling but it is clear a larger area of the brain is now affected. Jane is admitted to the hospice and large doses of steroids help reduce the swelling. Symptoms improve for a few months.

A final scan is done in January 2011. I don’t have that scan (yet) but that scan shows more necrosis and new tumours in different parts of the brain.

So that is what it looks like. A relentless march towards death. It never really got much better, no matter what we tried. Looking at these scans makes me angry, it makes me sad. But it also gives me a strange sense of acceptance. It shows in very clear images that nobody could have done anything.

26th May2011

Prolonging life

by Dutchcloggie

For months and months, JD has been on a high dose of steroids. These steroids reduce the swelling of healthy brain tissue around the tumour. The healthy brain gets irritated by the tumour and swells up, causing more pressure inside JD’s head.

Keeping the swelling down obviously reduces the chance of headaches. It also reduces the chance of the swelling putting pressure on vital parts of the brain, thereby preserving brain function as much as possible.

Ironically, the same steroids that made her life bearable are now making her death hard. Without the steroids, the pressure in the brain would be greater, thus more vital functions would be affected, possibly resulting in a quicker, more peaceful death.

So this morning the doctor and I agreed they were now probably prolonging JD’s life and thus doing more harm than good. So the dose has now been drastically reduced. If this results in severe headaches etc, we can simply increase the pain relief. Perhaps by letting nature run its course, we can limit JD’s suffering.

19th May2011

Deciding on the impossible

by Dutchcloggie

JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if re-hydrating would make JD more comfortable. So she wemt to the hospice and spent yesterday on a drip. After a night of seizures, vomiting and bed wetting, I think the answer is clearly NO. Her body is strongly objecting to the fluids. By doing this, I have probably prolonged JD’s life by a few days (the fluids did make her more alert, even if also more uncomfortable) but also prolonged her suffering.

I sat down with the consultant (and a host of medical students) to discuss options. He understood how hard I found it to make decisions when everyone keeps saying that it needs to be good for both JD and for me. Since these two things are not always the same, that makes deciding almost impossible. The doctor was lovely and he asked me if I would prefer him to make the decisions in my place or would I like his opinion and decide myself? In the end, he gave his opinion on what he felt should happen and I said: then that is what we’ll do. And then I cried. Not just for JD, but because finally I made a decision with clear input and opinions,based on facts and experience, not just on emotions, hopes and wishes. This has been so lacking in the past few weeks where the responsibility was all mine. I made decisions based on gut feelings, rather than on experience or medical knowledge. This has meant I never felt sure about having done the right or wrong thing, something which has proved extremely stressful.

Decision was to stop all treatment, other than pain relief. So no fluids, no food etc. This is effectively the same as it was at home. But this time, I also decided to keep JD in the hospice. I know this is probably better for JD and me as I would most likely panic every time JD vomits or moans in the night. But I still feel like I failed her at the last minute.

So the waiting begins. Or rather, it continues. For as long as someone can live without fluids. This time, it really does feel like I can cross off the days.

Is it wrong to already be wondering which one of her friends would like to speak at the service?

18th May2011

Hospice

by Dutchcloggie

JD is in the hospice. Initially to try and give her some fluids but if I’m honest, I think we are already too late with that. Am already regretting the decision to take her there but after changing my mind a million times a day, I just could not face making yet another different decision.

12th Aug2009

More misery

by Dutchcloggie

So, the result of JD’s PET scan was not a happy one (Not that we expected that).

Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.

She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we’re off to France. Yay.

JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let’s be honest, she will die of this sometime (assuming she doesn’t walk under a bus before then). If she’s lucky, it will be 10 years, rather than 1 but that is still not good enough!

I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.

But apparently that kind of thing is only acceptable once things get ‘really bad’.

Might go home now and have some booze and a good cry.

05th Aug2009

Temozolomide

by Dutchcloggie

JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, even though she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.

So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.

Hmmm….not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.

They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the radiotherapy was not able to do.

I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won’t get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.

Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.

Radiotherapy: they said it was nothing serious as yet but just to be safe, let’s do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn’t kill it and it looks like it changed grade but it might not have but either way she’ll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour….something else we were never told before.

Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?

My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn’t anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.

They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don’t really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now ‘officially’ incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was…

Does that make sense?

I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn’t such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus callosum and thalamus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?

There. Rant over.

Feeling better now. Now where is that bottle of Scotch I bought.

On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy…:-( I am SO upset about that, you won’t believe it.

14th May2009

High grade or low grade tumours?

by Dutchcloggie

Yesterday JD & I went to another brain tumour seminar in London. Informative as it was, it focused too much on high grade tumours and not enough on low-grade ones. I understand high grade tumours are more ‘sexy: they are aggressive, they kill real quick (in a few weeks sometimes) and they are mostly incurable. It is much easier to get sympathy and funding for such a terrible disease.

With a low-grade tumour, people can live for decades. In fact, they can even be cured in some lucky cases. But that does not mean they do not kill a lot of people. And just because you can live with a tumour for years does not mean it is not cancer or invasive. Low grade tumours are called low grade because they grow slower than high grade tumours. They may be dormant for years before growing at all and they might grow at such a slow rate that many people with low grade tumours are on a ‘Wait and See’ treatment plan, meaning nothing is done about the tumour until it grows too big.

But there are plenty of people with low grade tumours that have radiotherapy, chemo therapy, multiple operations to remove tumour tissue and resulting brain damage from removing healthy brain tissue and so on.

So although they may not kill as fast as high grade tumours, they are still a nasty thing to have and they can still seriously wreck your life, if anything because of the constant fear of having a time bomb in your head that might go off at any moment.

There is not a lot of research done in to low grade tumours. Treatment that works on high grade tumours does not have to work on low grade ones. They are different animals.

And so it means we just don’t know much about it at all. Not much info on life expectancy, not much info on treatment, not much info on quality of life. Not much of anything really. But a lot of pain, trauma, hospital visits, crying, hair loss, illness, anger, fear, loss of independence, loss of self esteem, loss of quality of life.

People with low grade tumours get all that. But nowhere near the (media) attention they and their loved ones deserve.

14th Apr2009

So what is it exactly?

by Dutchcloggie

The doctors tell you what it is. A tumour. An Astrocytoma. It is difficult to distinguish between tumour and healthy brain tissue. I never understood that bit. A tumour is one of those round things, right. You can see it clearly on a scan. Or at least under a microscope, it should be clear that you are looking at tumour cells. But apparently in JD’s case, this was not possible. The biopsy was inconclusive and the Astrocytoma diagnosis is based on ‘best guess’.