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Panic over urgent appointment - Carers UK Forum

Panic over urgent appointment

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Hi guys,

I'm in a bit of a tizzy at the moment! My husband, who I care for for his multiple conditions, has a history of brain cancer and gets annual scans. I chased up his MRI result from earlier in the month and was told they just got the results, along with his old scans from previous hospital, on Friday. They said they wanted to see him soon so they have made an appointment for 2.5 weeks time and said that they were going to call tomorrow to let us know anyway. I'm a bit freaked out because never been seen so quickly after a scan before (he's had no recurrence in 6.5 years) and they seemed so keen to get him in asap.

I'm probably just being silly. But I worry so much about him.
Jess, 'scanxiety' is a well known affliction! And whenever the docs say 'we NEED to see you' it's even worse. Can you think through the 'worst case' scenarios so that you know what is the worst that can have been shown up in the scans?

I take it you fear a recurrence of the brain cancer? What would recurrence be? Was he operated on the first time around and was he given the all clear? Or has the tumour simply 'gone quiet' in the meantime? Did he have any radiation, and was this Whole Brain Radiation, or the more specific Targetted Radiation (also called Gamma Knife, or Cyber Knife, where the whole brain is not irradiated, but only the actual tumour.)

I'm not very up on primary brain cancer (my husband had secondary brain cancer), so I don't know how easily treatable it is, either first time around, or second (IF that is what had shown up).

I don't know what the usual time is between a scan and a hospital appointment, when one is only having 'check up' scans (ie, when the cancer isn't active), but you know, waiting over two weeks for a consultation after a scan doesn't to my mind, argue that they have found any recurrence particularly? I mean, wouldn't they have asked him to come in straight away, the moment the radiologist found anything suspicious, so they could get your husband into treatment immediately (eg, either surgery, or radiotherapy - don't know if there is chemo for primary brain cancer??)

The basic trouble is that all waiting to hear results is agonisingly painful! This is only a thought, and it may be financially impossible for you, but could your finances stretch to a private appointment I wonder? It would cost something like around £150 to see the consultant privately (usually exactly the same one you'd see on the NHS!), but appointments are usually available within a few days - less than two weeks certainly. Sorry if it's not financially possible for you.

If it is, then the thing to do is check which consultant your husband wil lbe seeing, and then google him/her, and/or google Bupa or BMI or Nuffield (that covers most private hospitals across the UK), and see which private hospital he does private work at. He will have a secretary for his private appointments, and you just phone her up. (They will speak to you, unlike NHS secretaries!) (it's what you pay for, sigh!). (The phone call is free by the way).

She should tell you what days his private clinics are - they will very often be after work (ie, when the consultant has done his NHS clinics). If you say you are self-pay (ie, haven't got private health care insurance) she will tell you how much the appointment will be. You need to say you are there to get scan results, as they will need to get the radiologist's report from the NHS hospital your husband is at. But it's all doable.

Would it help at all if you asked on some of the brain cancer forums (eg, Macmillan) (they have all the cancers, with a subforum for each) to find out what is likely to be the treatment plan IF there has been a recurrence. DO remember that new treatments come on stream all the time. What was not possible six years ago with the original diagnosis may have changed completely in that time.

I do hope that your fears are unnecessary, but completely understand how worried you are.

kindest wishes at an anxious time, Jenny
PS - forgot to say, if you see the consultant privately to get the scan results, he/she will then pass you BACK into the NHS to get the actual treatment! It's just a way of speeding up getting the results, to stop you fretting for two weeks!

Thanks so much for your reply! I am worried about a recurrence really as the main thing. Also the rare disease he has, IgG4, can cause lesions in the central nervous system (basically it can in any organ/tissue).

When he had surgery they said they got all visible parts of the tumour (he had grade 4 medulloblastoma ) and then he had 6weeks of targeted radiotherapy to the cerebellum area. They said he had the 'all clear', but I have always been confused by the different language different oncologists use. When I have asked directly if he is 'cured' or 'all clear' I get all sorts of answers. They say he needs no treatment and is essentially fine and there is 'no change' to his scans, and he needs no treatment, so that is reassuring. it's just frustrating not getting a straight answer.

2weeks is a weird one, it seems pretty quick, but probably not quick enough to be a major problem. Just has my 'scanxiety' up!

Unfortunately we can't really afford private right now. I may look into it, but don't want to get my hopes up.
Oh, Jess, the weasel 'cured' word! No, oncologists never use it, and never should use it. The only time you could say any cancer has been cured is if EVERY SINGLE CELL from the original malignant cell that started the tumour in the first place (years and years ago) was eradicated from the ENTIRE body (including the bloodstream and any other organs!).

And no oncologist can say that! Because they can't know if there aren't a few tumour cells 'lurking'...

What they CAN say is if the cancer is 'active', rather than dormant. If it's active, it's on the move again, ie, the cells are dividing again (not necessarily rapidly), and are no longer dormant (ie, not dividing).

Sometimes, though, it's a question of 'definition'. If you define cancer as 'an actively dividing tumour' then you could say that if it ISN'T actively dividing, then it's 'cured'. BUT, the problem is that it could, at any time, start dividing again - ie, any of the cells that derive from the original tumour, any 'shreds' left, any cells washed into the bloodstream, whizzing round and round, or being 'caught' in the walls of the blood vesells, or in any other tissues.

Personally, I think it's wiser and less ambiguous to use the term NED - no evidence of disease. Some 'purists' would add NVED - no VISIBLE evidence of disease (ie, nothing that shows up on a scan). (one can have 'micro-tumours' that are all but invisible, which may or may not be active, but hopefully not. Remmeber, odd though it sounds, if one has hundreds of micro-tumours, they won't kill you - it's the BULKING effect of tumours that make us ill! Pressing on essential organs, or poisoning out bodies with their secretions. 'Small cancer' doesn't kill us!)

Any relapse, or recurrence (same thing) means that some of the 'left over cancer cells' that HAVE been dormant, have started to become active again, and are dividing again (and will eventually form tumours)....but they ALL 'descend' from that original tumour. (If not, then they are a 'new primary' - ie, a second occurrence, rather than a recurrence)(this is HIGHLY unlikely unless the person has a familial cancer, ie, one that runs in the family and is usually associated with a specific genetic inheritance - these are MUCH rarer than 'ordinary' cancers which are, by and large, just sheer bad luck)

What makes any left over 'dormant' cancer cells become active again is still mysterious. The researchers currently think there is an association with inflammation that can 'kick-start' them again. (It's one of the reasons that former patients are sometimes advised to take a daily aspirin, to reduce overall inflammation, which can therefore reduce the chance of the cancer 'flaring up' again).

I'm afraid the bottom line is, though, that ANY diagnosis of cancer ALWAYS means that there is a finite possibility that there may be some of the original cells 'lurking' which MAY 'flare up' and start dividing again.

And that is why oncologists never talk about being 'cured'.....only about being 'clear' (ie, NED/NVED). In a way, once a cancer patient, always a cancer patient - but not always an 'active cancer patient'.

I do very much hope that your husband has had a 'false alarm' (if even that), and all that is showing up (if it is!) are some harmless 'scars' or anything else that is not 'active'....or only 'slowly active'. Remember, we can keep going with a LOT of cancer in our bodies - it's only when it finally tips the balance and starts seriously interfereing with our vital functions that it becomes dangerous.
Jess, I just wanted to add that the general 'rule' is that the longer you go without recurrence the longer yet you are likely to go! ie, the odds on having a recurrence DECREASE with time. And to be recurrence-free after six years plus is VERY good - so, again, that too is adding to the UN-likelihood of the scan showing any actual 'nasties'.

I know that isn't definite 'proof' but it all adds to what I hope is a little more reassurance for you.
PS I'd be tempted to go into the surgery and SCREAM MY HEAD OFF to 'prove' I needed something to calm me down!

What morons run your surgery?????????????????????
Agree on the terminology used. Not to sound negative but its misleading and raises expectations throwing terms like "cure" around when really you go into remission, monitor it closely for an unspecified number of years depending on how effective the treatment was then continue to have your regular checkups/scans to make sure its remained inactive.

Can completely relate on the scanxiety, it is somewhat of a trigger, the few people that have managed to get to know me well enough over the years usually followed their introduction sharply with "everythings Ok" as they can practically hear the gears turning when they contact us.
I think the problem is that so few people really understand what cancer is! I was totally, completely ignorant of SO much basic info about it until my husband was diagnosed. I had no idea, for a start, that when you get secondary tumours (mets/metastases) they are actually derived from the SAME primary, spread in the bloodstream.

We long to think of diseases being 'cured' - possibly as a result of the modern ability of antibiotics to 'cure' us of an infectious disease etc - but it really doesn't apply to cancer, and can't (for the reasons I outlined above). (That said, a 'cure' might be in sight given the latest generation of immunotherapy drugs now in trial and just coming into mainstream use - they stimulate the body's own immune system to 'seek and destroy' all the cancer cells - or that is the hope, so maybe they will become as effective as ABs have been??)

Increasingly, though, the realisation is that we don't actually have to 'CURE' cancer - we just have to 'not die of it'.

In the same way as, say, diabetes can (hopefully) be managed by treatment, so that we can live a fairly 'healthy' life, but staying in treamtnet 'all our lives' so the similar hope is that cancer is becoming a 'manageable' disease that whilst we may never rid our bodies of it completely, that it may be 'kept down' below dangerous levels.

Again, diverting slightly, similar to the weasel word 'cure', is the weasel word 'cancer mortality'. The problem is NOT 'cancer mortality' - all this obsession with 'saving lives' etc that we read of in popular articles and hear on the TV etc etc - it's with the AGE at which cancer can kill us. It is PREMATURE mortality from cancer that is the problem. Not actually 'dyng of cancer'. If we all died of cancer at 100 we'd not consider it a problem!
Thanks for your replies. I do feel reassured :D I feel silly for getting all confused by the terminology and what they say about how he is doing. I appreciate they can't really say 'cure' just they use such different terms sometimes it can feel confusing! It's just once they did use it, rather nonchalantly, and then didn't say it again. Weird. I guess they shouldn't have.

They were amazed he survived to be honest, even the surgery let alone anything else. I know recurrence goes down over the years, just we were gravely warned about it because he had such an aggressive tumour. I think I am over thinking things really!

Thanks for letting me vent and giving me advice!