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Author Topic: Primary connective tissue tumour  (Read 2942 times)

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Offline Julia C.

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Primary connective tissue tumour
« on: August 18, 2005, 05:26:32 PM »
Has anyone any knowledge of a diagnosis of a "primary connective tissue tumour"?

I saw my GP because my knee suddenly became very painful, impossible to bear much weight and inflamed when I was picking rasberries (of all things). The inflamation had gone down by the time I saw my GP (about 4 days), and a soft lump was popping in and out from behind my knee cap, when I bent my leg. I could walk OK, but the sensation was odd, with some pain on going up and down stairs and if the knee got at all twisted in any way.

The GP didn't know what it was and referred me to a Physio, he didn't know what it was either (never seen anything like it before). The GP then referred me to a diagnostic centre for an MIR. He got a verbal report the next day and referred me to an Orthopedic Consultant. I saw the consultant today who also does not know what it is, but has referred me to a cancer specislist. He said his choices were to open up the knee to see more clearly what is going on, (he didn't think the little scope thing (my words I can't remember what it's called) would help because he'd only be able to see a bit of the growth at a time) or risk "getting egg on his face" and refer me to the cancer specialist. He did say that it was extremely unlikey that it is malignant but he didn't want to operate just incase.

Right now I am feeling really sh*t. I have no idea how long I now have to wait, I feel very unconfident about the consultant I saw, it's becoming increasing awkward to walk properly and I'm sure the lump has grown since I saw the GP in mid July.

I have booked an appointment to see my GP to talk this all through on Monday.

The only diagnosis I have is from the MIR report which describes the lump as a primary corrective tissue tumour and I was just wondering if this meant anything to anyone? 
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline kath

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Re: Primary connective tissue tumour
« Reply #1 on: August 19, 2005, 01:19:22 AM »
Hi Julia...I can only guess from breaking down the words...primary, meaning originating....connective tissue, meaning the supportive tissues such as ligaments, bone, cartilage, & muscles.

Your GP should be able to shed some light on the diagnosis.  If indeed they are trying to rule out cancer, no doubt you will probably have a bone scan.  If you aren't confident with your Orthopedic Consultant, then by all means ask for a referral to another one.  However, I would ask for guidance from your GP who may want you to keep the appt with the Cancer Specialist as well.

Good luck..please let us know how you fare...kath
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Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #2 on: August 19, 2005, 09:29:36 AM »
Thanks for responding Kath.
Re-reading through my post I can see it's full of typos, I was pretty upset yesterday and it helped to type it all out.
I'll certainly see the cancer specialist - sooner the better and take my GPs advice.
I do have a bit more information from the MRI report and I understand most of what it says, it just doesn't give the what, how, now what information.
"There is a soft issue mass arising from the fermoral synovium anteriorally (front) and medially (side) and this extends into the supra (?) patella pouch. The signal pattern is rather heterogenous (mixed?) and this mass can not be separated from synovium in places. There is a moderate joint effusion (leaking?)."
It goes on to say that everything else appears normal, with no bone abnormality. (My words in the brackets.)
If anyone else has had any similar diagnosis I'd really like to hear from them or if anyone has any knowledge of this type of thing.
The waiting for appointments and the not knowing I am finding really difficult, anyone got any tips on coping?
I forgot to say "Hi" and thanks to the site owner(s), it's great to find a place like this.
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline kath

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Re: Primary connective tissue tumour
« Reply #3 on: August 19, 2005, 05:12:30 PM »
There is a moderate joint effusion (leaking?)."

Hi Julia...the moderate joint effusion means some swelling due to excessive joint fluid.

I hope someone on the site can help you out with your diagnosis.  Please be sure to let us know what your GP has to say about all this on Monday!

kath
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Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #4 on: August 22, 2005, 02:33:26 PM »
Hi Kath,
Thanks for the meaning of effusion.
The visit to my GP went well. He thought that the consultant he sent me to would need to refer me to another one. I'm in the UK and apparently we have a tier system in the NHS, a GP being first level and they can only refer up to the second level so he could not refer me directly to a third level consultant. Seems a bit ridiculous really.
Anyway, he was very reassuring and has told me to phone him if I don't hear about an appointment by Friday. He said I should get an appointment within 2 weeks. He also signed me off work for the time being which is a great relief!
He offered me a prescription for pain and inflamation and access to a crutch as and when I need them. He took another look at my knee and confirmed that the lump is now visable and has moved its position.
It is becoming increasingly uncomfortable to move my leg from straight to bent so I'm walking with a straight leg and doing stairs one step at a time, but I am feeling better in myself for having spoken to my GP.
I'll keep updating - particularly after I've seen this next consultant.
Julia
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline Layla

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Re: Primary connective tissue tumour
« Reply #5 on: August 24, 2005, 06:24:23 PM »
  Hi Julia,thank you so much for directing me to the bone breaks around the knee site,I fuond it very helpful,I do not know much about your knee problem,but do know what nhs is like Iam also in the UK,I will be thinking of you and hope all goes well   Layla

Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #6 on: August 24, 2005, 09:42:22 PM »
My pleasure Layla and thank you for your good wishes.
I have got an appointment - next Tuesday! So not too long a wait (though it can't come soon enough).
I'm seeing a Consultant Orthopaedic Surgeon whose special interests are listed as orthopaedic oncology and knee reconstructive surgery, so hopefully he'll know what's wrong and how to put it right (fingers, but not knees, crossed!)  :)
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline kath

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Re: Primary connective tissue tumour
« Reply #7 on: August 30, 2005, 08:13:09 PM »
Julia...how did your appointment go today?  Any news?

kath
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Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #8 on: August 30, 2005, 08:53:10 PM »
Hi Kath - thanks for asking and remembering.

It all went very well indeed. I saw two OSs, both really helpful and ready to answer all my questions as best they could.

They really don't think it's malignant. They are going to make smallish incision (11/2" - 2") and it should "pop out like a piece of soap"! One night in hospital - two weeks off work and driving - possibly in the last two weeks of September. They'll biopsy it after they've removed it. They don't know what it is or why it's there, but maybe they'll know more once they've had a look. They remove loads of similar things all the time (20 in a day) and soft tissue cancerous tumours in the knee are very, very, very rare.

I'm really relieved and happy about the decision to go straight for removal rather then biopsy then operation. One less procedure - same outcome - as the thing has to come out.

They want me to go for another MRI scan before the op. It's weird neither of the consultants I've seen seem to trust an MRI scan done elsewhere and want their own done!?

Here's a pic of it. It's the slug like looking thing on the top right of my femur.

I hope it's OK to post a pic?

I'll update on this thread as I go - just incase anyone else comes here with something similar.

Now I think it's time for a celebratory drink. :)
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline kath

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Re: Primary connective tissue tumour
« Reply #9 on: August 31, 2005, 12:30:54 AM »
Hi Julia...so glad to hear that your OS's are optimistic about the surgery and end result...you must be so relieved!  It makes so much sense to have the removal and then biopsy rather than the other way around.  Chances are they want their own MRI as they have confidence in their own radiologist's reading of them.

Glad you posted the pic....it's so interesting to see what the tumour looks like!

Keep us posted!

kath
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Offline Layla

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Re: Primary connective tissue tumour
« Reply #10 on: August 31, 2005, 10:06:52 AM »
Hi Julia, just been reading your post,so pleased to hear that everything went well for you on Tues it all sounds really positive and must be a great weight off your mind.I have had some good news as well,saw consultant last Friday and he said I can begin to part weight bare not too much but it,s a start,he thinks when I see him again in about 4-6 weeks I will be able to weight bare fully,how cool is that?good luck with every thing,  Layla

Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #11 on: August 31, 2005, 02:37:44 PM »
Hi Kath
Chances are they want their own MRI as they have confidence in their own radiologist's reading of them.
Yes, I think you're right.
One funny thing that happened while I was at the hospital yesterday. I was sent for some xrays of my knee. When the guy called me in for my turn he took me into a little changing room, asked me to remove my necklace and then take off my top clothes and put on one of those gowns that do up a the back. It didn't seem necessary to me and not being the sort of person that will readily put on one of those gowns or take off any more clothes than is absolutely necessary, I asked "Why do I need to do that - it's my knee that's being xrayed?" "Really?" was his reply as he looked at the papers he had. Turned out my paperwork has been muddled with someone elses! ::)
Moral: Don't hesitate to question medical staff, especially if they want you to put on one of those gowns *shudders* :D

Thanks Layla - glad to hear you're making progress. :)
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #12 on: September 13, 2005, 01:08:47 PM »
Just an update.
Got a letter from the hospital yesterday, my admission to hospital is tomorrow and the operation on Thursday! Much sooner than I expected and not much notice, though I've since found out it's normal not to get much notice. Anyway it threw me for a bit as there are things I wanted to get done before the operation! ::)
Anyway the sooner it's out the better. :)
I'm hopefully going to be home again on Friday.
On the advice of friends I'm taking a couple of homeopathic remedies one called a "SurgeryMix" which helps with recovery from an operation and one which helps fight infections. I'm a bit skeptical, but they won't do me any harm.
Any other tips on really useful things to take with me to hospital?
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.

Offline kath

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Re: Primary connective tissue tumour
« Reply #13 on: September 13, 2005, 08:44:35 PM »
Julia...wow, they really don't give you much notice!  But it's great you can have this taken care of sooner than later.

In all honesty, I would be leery of taking ANYTHING prior to surgery that your specialist hasn't authorized.  Sometimes homeopathic remedies have plants or herbs that may not be suitable for someone undergoing surgery.  Sorry, with all respect to your friends, I would be very hesitant on taking the "Surgery Mix"

As far as going to the hospital, chances are you will simply need your personal items and whatever you need to come home with.  Will you be on crutches do you think?  Bring something to keep you entertained...a good book or magazine, pen and paper.  I was in the hospital for 5 days and though I brought nice pj's and slippers, I never wore them at all...just wore the hospital gown and lovely paper slippers!

Good luck...let us know how it goes!

kath
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Offline Julia C.

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Re: Primary connective tissue tumour
« Reply #14 on: September 17, 2005, 01:25:04 PM »
All seemed to go very well. I had the operation on Thursday mid morning and was able to use a normal loo by the evening getting around with the aid of a walker frame. Thank goodness as my one experience of a bed pan wasn't very sucessful. :-[

They removed the tumour (about the size of a plum, they said), incision about 3 1/2 inches and found no other problems in the knee. Biopsy result will take some weeks but the consultant thought it was probably pigmented villonodular synovitis, or PVNS, the nodular form (which is good news as it's easier to get rid of rather than the diffuse form which is more difficult). I had wondered if it was this, having done some research on the web when I first had the diagnosis from the MRI. One of the sites I found about PVNS is here - http://www.kneeandshoulder.md/pvns_01.html
I have to go back to the clinic a week on Monday to see how I'm doing.

I have a bandage over the knee, two crutches and a leg brace for when I walk. The consultant said not to bend it, but then later the PT said I should start to do little bends and lift my leg straight when lying down to strengthen my quadriceps. Lifting it hurts like hell and I expect this is because they had to cut through a tendon (vertically not across). I'll do a search later on on this site about safely strengthening my quads. Apart from when I lift my leg the pain is minimal (though it's amazing how often I accidentally lift it.) They gave me three different types of pain meds, Ibuprofen, Paracetamol and Codeine phosphate (and some other drug to protect my stomach), but I've not had to use anywhere near the max doses on any of them. Sleeping is a bit difficult as I never usually sleep on my back and I have to at the moment.

I did take, and I am continuing to take the homeopathy remedies. Thanks for your words of caution Kath, but homeopathic remedies really can't do any harm. The solutions they use are so dilute that none of the original substance is scientifically detectable. Rather the remedies have what they call a "memory" of the original substance. I remain skeptical and the only way I could test to see if they are helping is to go through the whole procedure again without taking the remedies - something I won't be doing! But I was suprised by how quickly I recovered from the general anaesthetic and how generally well I feel now. :)

I took my nice pj's but I wish I'd taken short trousered ones as I couldn't wear the long trousered ones until they removed the drain, I hadn't thought that through! :D

Julia
Sept 2005 - Benign tumour removed from right knee, diagnosed as localised pigmented villonodular synovitis.