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Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

Stunned

07 July 2011

During Jane's treatment, we asked the doctors to be honest with us and tell us the ugly truth if needed. Quite separate from asking for prognosis etc. we just wanted to be told what was happening. Surely this is not too much to ask for. I can understand doctors would be reluctant to discuss prognosis as there as so many variables. But when discussing the results of an MRI scan, surely telling the patient the exact result of that scan is normal part of the proceedings.

Apparently not. 

I have an appointment coming up with Jane's oncologist in Northampton who will show me her scans and take the time to explain what has actually happened to Jane. That is really kind of her and I was hoping for some closure on the matter. To speed things up, I asked for copies of all letters Coventry & Warwickshire University Hospital sent to Jane's GP in the past 3 years. 

Reading those letters took my breath away. How could what we came away with from the appointments be so totally different than the cold hard facts and scan results? Every time we went, I took notes and typed those notes up as soon as we came home. I thought we had a pretty good idea of what was going on.

I was wrong. First and foremost, we never really had an idea of the size of the tumour. I still have no idea. We imagined it was in the right frontal lobe but no idea how big it was. Doctor never mentioned this at all. When Jane had her surgery in 2005, they were unable to take enough tissue for a biopsy so from that, we assumed that must have been because the tumour was still relatively small. No mention of spreading, size, being inoperable etc. 

Then the tumour was stable until January 2008 so we still assumed the tumour was small. Agreed, this was not explicitly discussed but I think this was a fair assessment. 

January 2008: MRI shows minimal increase in size. Nothing to worry about says neurosurgeon and a scan is planned for 12 months later. 

October 2008: Emergency MRI shows further growth and potentially second area of concern. A PET scan is done and the neurosurgeon gives us the result in a letter as follows: I have received the PET scan and I am happy to report this was benign and there is no increase in size. That is the entire content of the letter.

November 2008: Jane is still referred to the Oncologist. He feels that based on the results of the PET scan, it is time for a course of radiotherapy. Tumour is inoperable due to location as it has infiltrated the Corpus Callosum and the Thalmus. Size is not discussed but how did it go from minimal change in January 2008, via 'no increase in size' in October to having invaded other parts of the brain? This suggest the tumour had already invaded these parts of the brain when they did surgery in 2005. But we were not told this then.
In the letter to the GP, the oncologist speaks of a diagnosis of a Malignant neoplasm. Malignant? He did not tell us that back then. The letter states that the tumour, albeit extensive, was still metabolically of low grade character. Huh? Is it malignant or low grade? And how did it suddenly become extensive?

August 2009: After the radiotherapy in 2009, the first MRI my notes say: Oncologist sees changes in scan that might indicate change to higher grade in parts. Wants to do PET scan to confirm but start chemo either way. The PET scan later confirms PARTS of the tumour are indeed changed to a Grade III. It might be possible to surgically remove the malignant parts. To be discussed with Neurosurgeon.

His letter to the GP however states: Tumour has undergone further enlargement compared with examination of October 2008.  More extensive invasion of the basal ganglia and considerably more in the right frontal lobe with extensive necrosis and cyst formation. Intense contrast uptake now takes place in this area. It is clear the tumour has transformed from what was formally a low grade lesion to one with a more aggressive looking appearance.  Surgical intervention thought to be appropriate. To be admitted to neuro-surgical unit in the next few weeks in order to repeat frontal craniotomy. Patient is happy about this and wishes to proceed with surgery.

Now in my mind, that is considerably more serious than what he told us during the consultation. Further more, there is a mention of extensive necrosis (dead brain tissue due to the radiotherapy) This will become a crucial thing as Jane complained long and hard of serious side effects of radiotherapy months and months later. When asked, in 2010, if this could be to any possible necrosis we were told that was unlikely. So even when WE brought up the possibility of necrosis, this was denied by the Oncologist/Clinical Nurse Specialist even though the scan report clearly stated there was necrosis.

October 2009: Chemo checkup with Clinical Nurse Specialist. He says he has still not heard from the Neuro surgeon about possible operation. Jane says she would prefer to see if chemotherapy is effective before having surgery. However, if Neuro surgeon thinks surgery is appropriate, then surgery should go ahead. Remember, we don't have the scans, nor the expertise to decide on this. The letter to the GP from the Clinical Nurse Specialist says: Arrangements will be made for Jane to be seen by the neurosurgeons in the near future regarding any further neurosurgical intervention. It must however be emphasised that, in view of her current good health, Jane would like to complete 6 cycles of Temozolomide. be re-scanned and then discuss any further neurosurgical intervention. I have put her name back on the list for discussion at the next neuro-oncology MDM.

After this, surgery was never discussed again. She never saw a neurosurgeon again and during checkups, we were almost actively dissuaded from surgery. It was mentioned that surgeons are always eager to go in and chop stuff out, even when the benefits are minimal. Remember, we had not seen a neurosurgeon to discuss this with.

January 2010: Another MRI scan. My notes about the results say:  Results of MRI are positive. No sign of malignancy and tumour area looks to have shrunk, even the benign parts. Chemo to be continued for another 6 months. The Oncologist's letter says: In comparison to the previous MRI from July 2009, there was a degree of signal change and mass effect is now considerably less than was the case at that time. Clearly Jane is delighted with the results. 

No mention anymore of possible neurosurgery.

Between January and June 2010, Jane continues to complain about worsening cognitive problems. Memory, lethargy, extreme somnolence etc. This is all put down to late side-effects from the radiotherapy. No mention of the necrosis observed in the scans. Jane is told to learn to live with it. 

June 2010: My notes say: MRI scan is clear (i.e. no change from last scan). I noticed recurring problems with concentration and lethargy but told this is likely to be from radiotherapy.  Another scan is to be done in 6 months. The Oncologist's letter to the GP however states something slightly different. The current imaging suggests increased signal change which is spread across the Corpus Callosum into the left hemisphere. There is however nothing to suggest increased contrast enhancement on the current study.
To me, this means the IS a change, however small it might be. To me, it seems something is brewing.

September 2010: I pressed for an emergency MRI because Jane had suddenly become incontinent.We were told things had taken a turn for the worse and from then on, you know the story. The oncologist's letter talks of gross cognitive deterioration. And he was not wrong. The MRI scan results say:  Further progression in the extensive infiltrating tumour and its associated mass effect. It continues to cross the midline and is now seen to extend inferiorly into the midbrain and posterior Fossa. Also progression in the amount of enhancement with some modules of enhancement in the right frontal lobe and Corpus Callosum. There is thickening enhancement of the hypothalamus and pituitary stalk.

So.....

In conclusion... my main gripe with all this is that from the start, the tumour was MUCH bigger than we thought and in the entire 6 years, nobody showed us the size of the tumour. Had we know the size, we would have had a much better idea of what was happening. In our case, we felt the tumour was smaller than it really was and so we were surprised when things turned bad. For us it was very sudden but for the oncologist, who knew the size, it made perfect sense. 

Further more, if they had explained better which parts of the brain became affected as the tumour progressed, we would have understood better what was happening with Jane. In another post, I will explain how Jane's cognitive deterioration makes perfect sense if you read the oncologist's letters to the GP. Shame he did not bother telling us which bits of the brain were involved and how this would affect Jane. 

Sorry for this very long post. I am surprised you are still reading, to be honest. This is clearly part of my grieving process, trying to find out what actually happened and then be angry at someone. 

7 comments:

Kirsten said...

Well of course I'm still reading, right to the end.

Bugger.

I'm devastated for you. Your comment on my blog this morning makes more sense to me now.

This is EXACTLY what has been on my mind. It's what I took from the New Yorker article by Atul Gawande on end-of-life care. And, it's what I took from How Doctors Think by Jerome Groopman.

Maybe you would have made the same decisions. Maybe nothing would have changed. But you could have made informed decisions and you could have better understood the changes.

I am going to work on my question list now.

HB said...

I know from experience (not connected to my husband, but other instances) that not all the information is given out by the medics. Personally I feel that you need all the facts to make decisions and that this 'nannying' does no good at all in the long run.

Hugs. HB (from PG) xx

Dutchcloggie said...

Kirsten: yes, ask anything you couldpossibly think of. When Jane's treatment was moved from Coventry hospital to Northampton, it was such a relief to have an oncologist who did not make me feel stupid for asking "silly" questions. That was the problem with the other bloke. He was probably nearly 60 and really was of the old garde: his treatment was brilliant but he seemed to think that asking questions was a bit of a nuisance. So I was a bit scared of him.

And how can you ask questions when you don't know there are things you don't know?

HB, I think patients should get copies of all letters between medical specialists, unless patients explicitly state they don't want that.

HB said...

I remember being with someone in a consultation. We'd printed off some material from the internet and the consultant sneered: "Oh your one of those net people are you?" and completely dismissed any of our fears or concerns, which, as it turned out, were very valid.

HB

Dutchcloggie said...

Yes, he was like that. He was very much like Jane's dad (who was an older man and did not like being questioned) so Jane was not likely to ask him for clarification as she had similar problems with her father. I tried a couple of times and felt like he thought I was a bit of a nuisance, you know, a partner getting too involved.

Anonymous said...

I just wanted to let you know that I've spent the past hour reading Jane's blog and it really touched me.

The vast amount of sheer love that you had for Jane is so clear.

You are a remarkable person and an inspiration.

Dutchcloggie said...

Thanks. That means a lot to hear. I did love her a lot. And I still do. Caring for Jane was the best thing I have ever done and most likely will ever do in my life.

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