Hi Angie,

These are a relatively new innovation - they were set up to "deliver a better, personalised diagnostic experience for patients by providing a series of coordinated tests and a single point of contact."

The idea is that rather than going into various hospital departments for different diagnostic tests, scans etc. with weeks long waits between the different parts you get everything done in one day.

I hope things go well for you.

Best wishes

Dave

Thanks Dave, that's helpful. It sounds like a great idea.

I've already had various scans and been waiting since October so perhaps I'm not quite their target patient, but hopefully they will be able to do something with it.

Best, 

AK

Hi Angie,

It is hard to say what tests you are likely to have when we don't know what part of your body is involved. If you can share this with us, one of us should be able to clarify this for you. There are different scans that can be done too, so it would be helpful to know what tests you've already had and whether or not you've had any results yet?

We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine,

Thank you for the kind message. Sorry, I should have said. I have a soft tissue mass at the top of my leg. 

It's been very slowly growing for I think about seven years, and is small - about 1.5cm. It's superficial and my previous consultant said it feels benign but it has a lot of vascularity, according to the ultrasound, so they want to take it out because that makes it suspicious.

There's a few benign things and a few malignant things it could be, I think, but I had an mri a few weeks ago and they still don't know what it is. Everything I've read says that they probably won't be able to tell until it's excised, and a biopsy on a small tumour isn't easy or safe (I have visions of the needle going right through it!) so I am expecting they will just be trying to plan how to do it and how much of a margin to take.

Bit worried I might lose some function in my leg cos it's in such a weird place and he said it might be joined to a tendon or something. 

Sorry I'm rambling, have been reading a lot since Oct as I got pretty scared, though I know other people have much more scary symptoms and I'm lucky to have had some time to process it. 

Thanks for your help again, 

Best wishes 

AK 

Hi Angie,

This explains why it has taken so long to get a diagnosis. I am surprised that your MRI didn't  highlight what the problem is. I am a breast cancer patient, so don't know much about tests for this. They may try to get a biopsy guided by an ultrasound. This is what they call an ultrasound guided biopsy and, because it shows the exact positionn of the lesion, there is no fear of the needle going right through.

It sounds as if they are going to remove it to prevent any further worry. The tissue sample taken in surgery is sent to pathology and this will determine whether it is benign or cancerous. Your leg might be a little tender for a while, but you should still be able to walk on it. Sorry that I can't help any further than this.

Please let us know how you get on. We are always here for you.

Kind regartds,

Jo;lmine xx

Please 

Hi Jolamine,

Thank you so much for replying. I think with the features it's got there is a lot of crossover between benign and malignant soft-tissue tumours so apparently they are never sure till they take it out, because a lot of them look very much alike on MR. I was hoping the centre in London would look at it and say Oh yes it's one of them, or whatever, and I guess they might still do that, they must see loads of them all the time.

But if not it raises the question of how much of a margin to take around it which ought to be about 3cm for the worst thing it could be to none at all for the benign things - so bit of a dilemma as I think they don't want to take out a huge chunk of someone only to find it's an innocent lump, or not take enough surrounding tissue and then find the histology comes back as malignant!

I'm really grateful for you being there and listening so please don't apologise for not knowing more. It's just nice to talk to someone and I imagine you have been through the system and will know a great deal about how things work, even if it's a different kind of cancer, so your thoughts and wisdom are very much appreciated. I've sent the hospital an email and they said a clinical nurse specialist will be in touch to explain what will happen so hopefully that will provide a bit more clarity.

Thank you again for writing back and I hope all is well with you. I will update in due course, appt is on 21st so a couple of weeks yet

AK

Hi Angie,

There are always a few lesions which crossover the two divides and this makes them difficult to diagnose. This makes it all the more frustrating for you. Is your referral for the centre in London? If so, I hope that they can recognize it for what it is.

I imagine that they will know exactly what margin to take when they're inside your leg and looking at the actual lesion. You're better to have a reasonable margin rather than taking too little and, needing to repeat the process. I put my second cancer down to not having had a clear margin after my lumpectomy. My surgeon told me at the time that he wasn't worried about the pathology result, as he was aware of this at the time and had taken an addituional sliver away.

I had been told that I had a very rare, but less aggressive type of cancer and, that if I had to have cancer, this was one of the best types to get, so why did I get another cancer in the same breast less than a year later? Still, there's no use crying over spilt milk.

Most of the tests for cancer are the same - Ultrasound, CT scan, MRI scan, Biopsies seem to be fairly universal. I am glad to hear that you sent an email to the hospital and that they are getting a nurse specialist to contact you to explain what will happen.

You've still got a while before 21st, but I hope that whatever they do then will elicit some answers for you. I am more than happy to talk to you as you wend your way through this process. Hopefully, someone else who has had similar problems to you will come along soon. You can always phone the nurses here for advice about what your visit will entail. They are available Mon - Fri, 9.00am - 6.00pm. Their number is 0808 800 4040 and it is a freephone number. You can also send an email to the ask the nurses section on this forum. It will take a little longer to get a reply to an email, than it will if you phone.

I look forward to your update, but am here in the meanwhile if you want to chat.

Kind regards,

Jolamine xx

Thank you Jolamine and I am sorry to hear what happened with your cancer. It's odd how someone will tell you something then it turns out to be completely not the case, or very different to what you had expected. (I got told mine was a cyst the other day by a secretary on the phone - nope! She had read the report wrong. But my fault for being impatient and asking her to look!)

It must have been very difficult to have it come back. I hope that it's all in the past for you now, do you still need to have follow-up? I've tried to get used to thinking about it as though I do have cancer, over the last few months - well, as much as I can without actually experiencing that, because I'm sure it's very different when it's real - and I suppose I'm getting used to the idea of it a bit, or trying to in case it is. Still I'd almost rather not have any answers, unless they are the reassuring sort...! It can't be helped; I think it'd got to be removed anyway or it'll get slowly bigger and be more difficult to remove. But I do not feel very brave.

Thank you for your kind reassurance, it really helps to hear these things, hopefully you are right and they will know what to do once they are in there as it were.

Thanks again and I will come back and post again when I know more x x

Hi Angie,

I am amazed that a secretary gave you any results over the phone, and even more so that they were the wrong ones.

I suspect that the fear of recurrence is something that anyone with a cancer diagnosis learns to cope with. It was a shock when it recurred so quickly with me, but I’ve come to terms with it now. Yes, I still have an annual check-up at the breast clinic and, can call my breast care nurse any time throughout the year if I need to. From a management position, it is probably best to think that it might be cancer at present. That way you are prepared for the worst and can still hope for the best.

I know that I thought that I was prepared for cancer, but it hit me like a sledge hammer the day that I was given my first diagnosis and, it took quite some time for me to get my head around this news. None of us feel brave. We are all afraid of the unknown – and there are so many unknowns. It is perfectly normal to feel anger, fear, worried for partners, children and parents and, to cry continually. We can experience a whole host of emotions in the space of just one day. This eases a little once you get a diagnosis. Whether it is good or bad, you begin to see a path ahead which is more positive than where you are at present.

I had 3 suspect melanoma last year and the dermatologist advised me to see a plastic surgeon with the one on my face, as it was just under my eye. When I saw him he noticed another lesion on my leg and he did an excision biopsy on both straight away. Fortunately, all three were clear, which he wasn’t expecting to be the case. My face healed beautifully without any grafting, but my ankle took a lot longer, although it didn’t hurt after the first few days. I had to keep the stitches in my leg for 2 weeks by which time they were getting tight and, it was quite a relief to get them out.

It sounds as if you do need to remove the lesion whether it is benign or malignant, so it is not so bad when you know that it needs to be done and, you know that it is not being done unnecessarily, or just to determine from your pathology report what your diagnosis actually is.

Kind regards,

Jolamine xx

Dear Jolamine,

Sorry for the late reply. It's been a week already, I read your reply but got lost in thought and have been trying to prepare myself for what might happen next, so I neglected to write back.

I'm really touched by what you wrote and much of it resonates with what I have been thinking and feeling, and makes a lot of sense. It sounds like you have had a lot of things to handle and yet you seem philosophical and balanced and very calm, even if you don't always feel that way.

I'm relieved for you that the suspected melanomas weren't melanomas after all. My best friend died from it ten years ago, which my mind always goes back to of course. So it is really good that you haven't got to worry about that, on top of the other things.

I think you are wise about how to think and prepare and will try to take your advice, because you really know what you are talking about.

Anyway, now I've said all that, I've had some good news I think. The Marsden doesn't want my tumour. They've looked at the MRI imaging and decided it doesn't look very malignant, and is unlikely to be - though I don't think they were sent the ultrasound, which looked like a big burning Christmas pudding, which made it seem a *bit* more likely to be malignant! - and they said they haven't got the capacity to take out all these small, indeterminate things and basically what was he thinking referring me there. So I'm supposed to have it done here instead, and then if it is malignant, they will have to take me on at that point, they suppose... (I am being silly, I'm very grateful to them in fact - to everyone who has tried to help).

So I hope that is a good sign, because I wasn't sure if they would have reviewed it yet and obviously they have now. I'm cautiously celebrating not having to go to London, anyway - I have got three children and was worried about the logistics of it. Which seems silly when people have much more awful things to worry about.

Anyway thank you so much once again for all your kindness and for sharing your insight. You have helped more than you know. I've got to go and try and look up local MSK surgeons now, will update once things progress - especially if it is good news, I think, because there is nothing nicer than reading stories from people who are doing OK.

Lots of love,

AK