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Yesterday, I found out that ... and I'm scared.(607 Posts)
I will be brief as I feel like I've entered a time warp where my brain has frozen, incapable of long sentences:
Had hip pain and have been waking at 3am most nights with back pain (not terrible) for about 1-2 years.
Thought I needed a firmer mattress.
Finally went to consultant.
Two MRIs and an X-ray later, I was ushered into a private room having just been told that a large tumor is at the base of my spine.
They called me back in within one working day of the second MRI.
I'm now waiting for a biopsy which will be on Wednesday or Saturday of next week - to determine its 'nature'.
There was talk of chronic bone erosion in the lower back as a result of this thing. Also discussion of nerve paths and tumors, rare cases and cups of tea.
Now, lying awake as usual in mild discomfort, I'm in utter shock and disbelief.
What a shock for you.
It's ok to not be able to get your head around such big news so soon.
I have nothing to say that doesn't sound trite or cliched but am here if you want to talk. About anything that will help, even if that's just getting off to sleep.
Oh goodness me, what awful news. Wishing you the best outcome.
For sleeping, would a hot water bottle help at all?
Oh my goodness what a dreadful shock. Would a bath or a hot water bottle ease your pain and help you relax tonight?
Sending all good wishes and the hope that this is something easily fixable x
Thank you, thank you for being awake and responding, girls! (what are you all doing up?)
Thing is, I'm not in any pain. My hip aches a bit when I'm awake and stand up. Nothing searing though. My back just feels a tad achey - not painful which is why I've been toying with buying a firmer mattress. This is why I can't get my head around it all. To be called to come in the next day and then to be sent to another consultant (surgeon and rare tumour specialist) that very day, to be shown into a dark waiting room and given tea...
All very surreal when I'm supposed to be picking my son up from school.
I've googled. It's so rare that there are only scholarly articles on it (probably a good thing).
This wasn't part of my Xmas plans. Lost my temper with my obstinate 6 year old last night ;( I'm sure my anxiety didn't help.
I feel like I've been shunted down a deep, dark and vertical tunnel. I'm scared. Wanna get out!
What a terrible shock for you, I can't imagine. Do you have people around you to support you? Dh? Family? Friends?
Sounds like they are moving things along quite quickly with the biopsy dates which is great (and not necessarily a bad sign btw - there are procedures in place in which when cancer is involved they try to move within a prescribed time frame so doesn't mean anything bad or good- I know I would be reading meanings into everything trying to make sense of it!)
Do make sure you take someone with you to your next appointment to be an extra set of ears, when you are receiving any sort of medical info it can be very overwhelming and you may hear one thing and miss a dozen others.
Don't worry about your obstinate 6yr old btw (sometimes they need a cross mum, there's only so much any parent can take!) and in the circumstances you should forgive yourself immediately, I bet your dc have already!
Hope you get some sleep soon and good luck for the following weeks
[feeding baby bashed my phone argh!]
I'm sorry to hear your news. Have you been given details of support groups/ Macmillan etc for practical help?
I know from working in the area there are also groups for rarer cancers too
Don't be hard on yourself - we all get upset with our DC's every now and again anyway!
That sounds v shocking and worrying GoodnessKnows and I'm not surprised you're struggling to sleep and got angry with your DC.
I'm glad that you will be see next week and hope you'll know more soon. I think you'll feel a bit better once you have more information.
In the meantime I hope your age to stay calm and not over worry though as I type this I realise how ridiculously hard that will be. Take good care of yourself
I hope you get some answers quickly, not knowing must be terrifying.
Sorry my MN just would not load, couldn't do anything.
It's easier to take things step by step in order to help your emotions and rational brain get back in sync a bit however the initial process Does Not Help - you get launched almost from 'I ought to get this seen' to hospital, to Dr to Mr to another room, another team like a pinball. It's fast and it's furious & usually you think fuck, it must be bad if I'm being seen now. Then you get plans with a capital P & off you go. Home, to silence and an echo chamber of your own thoughts which then fills up with the normal stuff you need to get done, why hasn't that stopped so I can deal with this? But also if it does stop that's worse. You get Plans but not Information - how can that not be a bit of a mindfuck?
The hardest thing to do is to try and get to a point of putting aside all those thoughts and deal with the now, being kind to yourself by short term just staying in the present and trying to ease worries by trying to make plans on unknowns is a difficult line to tread.
Even if it doesn't feel like it writing it down helps get things processing. Being scared by something scary is ok, being shocked, angry & hit with disbelief and unfairness is ok. Because that's what everyone feels. When I was struggling I was surrounded by the heroic, the person in a worse situation than mine was in the media changing the world or climbing mountains and I just felt sick getting out of bed. When there was a possibility I wouldn't make it it felt like I should be presenting this grace and acceptance, I had a good life & it was OK. Well it fucking wasn't, I was scared, sad and I wasn't ready to float to my end on a lavender scented trail of benevolence actually! Bollocks to anyone else's idea of how you should be feeling until this is sorted, you call the shots.
You are brave. Bravery is being scared and still putting one foot in front of the other. Only the foolish are fearless. Anxiety is difficult as it nips in & gets you from behind but grounding exercises can help, feel the big things, let it wash over you. Then it's one step, two steps. Support from the experienced can be a huge weight lifted, whether it's Macmillan or another service if you can get it give them at least one try.
I hope you have dropped off and things are more approachable after a bit of sleep & in daylight. And with a cup of tea that isn't the peculiar brand of piss that finds its way into hospitals
Thank you all again. Managed to get a whopping three hours more of sleep. actually woke DH up - just to tell him that I was scared. Not nice to be awake to know that the niggling back pain is actually a lump that appears to be getting everyone into a right old flap.
Anyone heard of the Royal National Orthopaedic Hospital in Stanmore? That's where I'll be going if/ as and when it's finally operated on. Heard from an acquaintance, who I had coincidentally contacted to wish her well with her back op, that night time care is abysmal- her words. Hey ho.
Hey ho seems to be a fitting expression at the mo.
As does que sera.
Prefer it to 'chin up' or 'stay positive'. I AM being positive in the midst of my disbelief and self-pity, would you belief. Because, to consider negative outcomes would be nightmarish.
Thank you for your advice people. I don't know whether I would be 'allowed' / eligible to contact Macmillan since we don't know , as yet, whether this is cancerous. It's all very confusing though as the report I was given a photocopy of says it's appearance in MRI is a benign (never had to spell it so haven't a clue) tumour with a super long name. Bit at the end they recommend that I'm referred to a department specialising in rare (VERY) cancerous tumours... and why else hurry with a biopsy? But then again, why write it's appearance was benign if it wasn't? But then again...?
I hope I don't come across as too self indulgent or pitiful. I know there are a billion worse things people are diagnosed with every day. It is helping to offload and go through the process swimmingly less alone. So thank you to those who've responded. Means a lot. I will tell a few RL friends. Don't want to be a pity case though. I've plenty for myself for now. lol
And they'll be upset and have enough to do anyway.
DC up and ... resisting getting dressed.
What do I tell mums at school who casually ask 'How are you?'
And people I work for.
Mufti day - didn't know. Time to text-a-mum.
What a shock. You don't come across as pitiful at all. It must be so strange to suddenly know that this 'thing' is inside you, and so unnerving to have to wait to find out the nature of it, and what this means for you.
It seems all the possibilities are going around and around in your head (totally normal), but I think it must be a positive thing that it says appearance is benign. I reckon focus on that. They'd have to hurry with a biopsy anyway just to find out what's going on as it's a rare case. Benign is good. I think if I were you and I was starting to get overwhelmed I'd just start chanting 'appearance is benign, appearance is benign' in my head, just to give myself something to hold on to
If the long name is non-lymphoproliferative, I think that means it will not have the capacity to spread and therefore is not a threat to life.
This is indeed very rare - far more spinal tumours are metastatic than present as this.
So it would be OK if it's this sort. Rare doesn't mean worse in this instance, it means better. As far as I can figure out.
A family friend recently had one of these removed from the base of her spine, hers was a Schwannoma.
The biopsy showed it was not malignant, but the PET scan suggested it was suspicious. She went to see various consultants around the country in order to find the best one. Some had stories of incontinence after surgery and at worse paraplegia. In the end she found a surgeon in London she was happy with, a Mr James Allibone. She had the surgery and luckily the tumor was not malignant. She is completely well physically, but mentally had a tough time coming to terms with it all.
Do your own research and ask for second opinions. The is also the Rare Cancer Foundation for support, www.rarercancers.org/.
Best of luck and PM me if you need further details.
I would try and be cautiously optomistic. Benign look is a good sign. Biopsy is because it is a tumour so could be cancerous - needs checking. Specialist happen to be cancer specialists - but they are the people who know about tumours in that area - so best people for the task.
Question (if not cancerous) is what can or should be done and what are the implications of doing that, or doing nothing.
So many what ifs - hard to not be stunned. Be kind to yourself.
Sorry to hear about this, I think you sound really brave and amazingly calm I agree try to stay positive and deal with each thing as it comes along as much as possible. Sending you lots of love and
Hoping things become clearer soon, and its nothing sinister.
What a shock
Hope you get some answers soon. What a terrible shock.
Stanmore Orthopaedic is a bit (very) run down but is one of the leaders in spinal care in the country. Don't know what the day to day care is like but dm had some treatment there last summer, and said the clinicians were excellent. The reason everythings v rushed at the moment is probably to fit in with the NHS/government standard on accessing care within 2 weeks if there's any possibility of cancer. It makes it all a bit frightening as it quite often feels like there MUST be something dreadfully wrong for the NHS to be rushing around but by referring everyone with possible cancer, they pick up a lot of people who don't have this diagnosis. Hope you get the answers you need and the outcome is a good one.
Callow. That's what's written on the report. I'm being referred to a specialist place for shwannoma in the base of my spine. Exactly those implications were vaguely covered at my two appointments yesterday. Please could you ask your friend whether I could contact her. It might help to speak to someone who's been through it. Feeling lost.
I had a molar pregnancy only four years ago. Shitty.
Sending you very warm hugs. What a shock.
At your next appt do indeed take someone with you and a pad and pen.
Write down all your questions AND the answers (other person could do this),
Ask for written information, copies of any letters and scans.
If you're near London it would be worth asking about the National Hospital for Neurology and Neurosurgery. Neurosurgeons are typically rated for this kind of surgery.
I would tell a couple of close friends and allow the word to spread very slowly. Some people are absolute leaches, a woman you've met once will likely come and start hugging you and weeping. Just to warn you so you can prepare.
Any offers of help accept. Friends will genuinely want to help but may not know how. Friendship can be measured in who will step up here.
Very best wishes. Let us know how you get on.
I know a lead researcher and her team from Stanmore - she is world renowned and v good. I also know someone with a rare Chordoma tumour treated in London.
Take everything a step at a time and write down what you don't understand and what you want. Fast is good -
Much better to be clear as soon as possible than faced with questions than answers for a long period.
Hope you've been ok today
GoodnessKnows, what a shock.
It's probably helpful to know that tumours aren't as clear cut as 'benign' or 'cancerous'.
You can get 'cancerous' tumours (malignant) which are so slow growing that actually, most patients die of old age before the cancer 'gets' them. A notable example is prostate cancer in men - if a man is of a certain age when diagnosed, they are often offered 'watch and wait' rather than active treatment.
You can get 'cancerous' tumours (malignant) that are either massively rapid in growth or very invasive and the tumour itself causes decline in the person.
You can get 'benign' tumours which are in big body spaces and merely cause discomfort or pain, but have no real effect on the health of a person. For instance, growths in the abdominal cavity which has quite a lot of space around it.
You can also get 'benign' tumours which aren't cancerous, but because of their location they can cause problems or even death in a person. Tumours in confined spaces, especially the brain, can be very problematic because there simply isn't the space to spare for anything 'extra' and the brain gets crushed by the tumour.
In your case, if the tumour is in your spine, then the fact that it is benign isn't the only consideration. It may need treatment to reduce or remove it, to prevent further problems.
I know someone who has been treated recently and Stanmore and they seem happy with their care.
Very sorry to hear that you're going through all this worry. A few Christmases ago a friend had a lump in her leg that her consultant thought was likely to be cancer. Stanmore was suggested but she ended up at Birmingham as closer. She spent an anxious Christmas waiting for results convinced she had cancer but was told on New Year's Eve it was benign. She's now totally fine. I pray for a similar outcome for you.
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