Hi, I went to see an orthopaedic surgeon as I’ve had a swollen leg since the beginning of Feb, he ordered an MRI scan which showed what he thought was a bone sarcoma on my left thigh, I was referred to a bone tumour unit at a different hospital, the MDT team reviewed the scan and called to say they thought it was more likely to be a lymphoma and organised a biopsy, which I had last Tuesday, I’m still waiting for the results and I’m so so scared and stressed as I don’t know what to expect, has anyone else been in this situation
Thanks
Lesley
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Hi @Lesley1 and a great big welcome to our forum.
I think that you might find quite a few people on our forum that have been diagnosed, completely out of the blue, whilst being treated for something different.
I was diagnosed 19 yrs ago after a gynae op with a leukaemia, I can still remember my shock and feeling in a bubble with the world going on as normal around me…
Perhaps it is insensitive when medical people give a diagnosis that the patient is not expecting over the phone. I know it is language that they are using every day but it is a new language to us.
Unfortunately I have found there is a lot of waiting around and having to live with not knowing around tests, results and appointments.
Please do keep posting how you are feeling and doing on here and how you get on.
Now is your opportunity to write down all your fears, questions and practicalities for your next appointment so you make sure that you cover them all.
Really look after yourself and be very kind to yourself, you have made the first step by posting on here
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Hi Erica, thanks for your reply, I guess I’m scared of the unknown, however the hospital called this afternoon, I’ve got a telephone consultation tomorrow morning to discuss the results
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Oh @Lesley1 I am so glad that the hospital have called to say that you have got a telephone consultation tomorrow.
That will give you time to prepare yourself and perhaps be pleasantly assertive and make sure you get answers that you understand.
You know the phone will ring when you go to the loo don’t you!!
Please let us know how you get on and try and get some sleep or rest tonight.
Thanks Erica, I really appreciate your response,
I’m going to try and have an early night, and I’ll let you know how I get on
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Hi Lesley,
I’m really glad you have the appointment tomorrow.
As @Erica advised, make sure you have all your questions written down, may help you sleep a little bit know it will be hard.
Please keep us updated as and when you feel ready.
Sending lots of love X
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Thanks Nichola,
this has all been so quick and unexpected my emotions are all over the place I think waiting for and getting the diagnosis is the worst, I’m going to try and have a good sleep, and I have my questions ready for tomorrow, I will update tomorrow x
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Completely get it. I got my lymphoma diagnosis 7 years ago now and remember those feelings. You take care and will be thinking of you tomorrow x
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Thanks Nichola, I’ve had my consultation this morning and he confirmed it is a lymphoma and is referring me to the royal Marsden for further tests to see which sub type,he was very reassuring that it could be treated with chemotherapy and or radiotherapy, so I’m feeling loads better today x
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Hi @Lesley1 I am so glad that you are feeling loads better, I always think answers help such a lot.
The Royal Marsden has a great reputation.
Perhaps you can look after yourself now and try and take it a day at a time oh, and keep posting of course.
Hi Erica, yes it’s such a weight of my mind to have a diagnosis, I’ll post and let you know how I get on
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Thinking of you Lesley1at this difficult time. Time to buy that notebook to make notes on what you have been told, what you want to know, questions you really want to ask etc with dates and doctor’s names, favourite nurses etc.
It is good later to look back at it and see what progress has been made because I am sure that, although it is very confusing and tricky now, that you will have a great team working for you and that progress has been made in medicine and you will now benefit from the great strides which have been made.
I wish you the very best and your family, who will be feeling quite overwhelmed too
Know that help and support is here for you and very warm good wishes too.
Grandma Jo
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Hi Jo, thanks for your good wishes, buying a notebook to look back on progress is a great idea, thank you, I’ve heard good things about the Marsden so I’m sure I’ll be in very safe hands, it is all a bit overwhelming for both me and my family at the moment, I’m sure the ball will start rolling quickly now
Best wishes to you and yours x
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Off course it’s all overwhelming. You sound like you have a good support system around you. Take good care and be kind to yourself x
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I’m very lucky, to have a good support system,I feel better now I have the diagnosis I think it was the not knowing, I’m learning to listen to my body and be kind to myself
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Lesley1
I have been thinking of you and hoping that you are making progress and have lots of names of favourite nurses in your notebook.
If you are on treatment now I expect you are feeling a bit weary at times. With Valentines Day coming up it is time to love yourself and add a few treats to your shopping list. Know that what you feel able to do is paramount not pushing yourself to do too much. With Valentine’s Day love from us all.
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Hi jo, thanks for your message, it feels like a bit of a roller coaster ride, the sub type is nodal marginal zone lymphoma, I had a pet scan which showed a 20cm mass in my left thigh and very small nodes in my chest and abdomen, I’m on watch and wait for my chest and abdomen and I’ve had radiotherapy on my thigh which finished on Friday (yay) but has left me super tired, hopefully that will pass it’s an odd feeling that I can’t describe now the radiotherapy’s done it’s like going to the hospital everyday occupied my mind and something was being done, and now it’s a waiting game and I’m tearful at times, I have a repeat pet scan on 25th April so fingers crossed. Your suggestion of a notebook has been great, and really useful I would of forgotten so much without it, I’m trying to be kind to myself, I came back from the hospital yesterday and slept for a few hours in the afternoon something I’ve not done before but boy did it feel good, how are things with you ?
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Hi @Lesley1.
Yes - be kind for yourself. The emotional toll of going to the hospital everyday is exhausting - both physically and emotionally! However, I completely understand how that kept your mind occupied. Sometimes it’s really hard when treatment stops - that’s when you process it all.
Keep posting. We are all here for you. Nap when you need to and plan a treat or two X
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Hi @Nichola75 yes I didn’t realise just how exhausting going to the hospital would be, and I wrongly assumed that once treatment finished I’d feel ok, but I kind of feel in limbo trying to process it, hopefully it’ll get easier
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Hi @Lesley1 I also find hospital visits absolutely exhausting, for me there is an accumulation of the emotional, psychological, physical and practical aspects, it is a day gone.
Again it’s all those aspects that I think culminate when treatment is finished and everyone assumes I am OK again and I certainly don’t feel it and I feel that I have less appointments and am in limbo, abandoned and fallen off the grid.
Give yourself time and we are always still here for you, please do keep posting.
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