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i feel a bit of a fraud to be posting on here but here goes, i was just wondering if anyone can help me, i live in the uk and have had numerous health problems all starting last june, i found a lump in my neck and a lump in my groin i attended the docs concerned who told it was an infection and would go away in time the same year 2008 in dec i went back to doc as lumps had grown and i had more in my neck and groin he weighed me i was 13 stone ( about 170lb i think) anyway he refferred me to see ear nose and throat speacialist who did a scan 2 of the 5 swollen came back comcerning they biopsied i got a reactive result but told that one could be clear the others may not by this time i weighed 140lb and my symptoms were getting worse more lumps joint pain, easy bruising and night sweats adn severe fatigue. i was then sent to see a thyroid specialist who told me my thyroid was fine but was concerned by my lumps in my groin which now were 5cm and 3cm she sent me to a blood specialist who said he thought i had leaukemia or lymphoma and they biopsied both lumps and again they were reactive they have done every blood test possible and ruled out HIV, lupus etc inc infections and viruses i had a caeliac test as my weight was 100lb and that was negative they decided to do a colonoscopy which was clear for crohns disease and inflammitary bowel disease but they found white spots in my colon the specialist said he didnt know what they were and had never seen them before i googled them when i got back and can only find minimal info and mostly research. more lymph nodes are swelling in my groin and neck and i am terrified that all these other problems are linked to something more serious in my bowel. they biopsied the white spots and i am still awaiting results ( as uk takes forever to do anything health wise) I am 23 years old with two children aged 4 and 2 and i was hinging all my hopes on the fact it is almost unknown in my age group then i stumbled upon this site. the fear of cancer for anyone is too very very real but especially when i could potentially leave behind children taht haven't even grown up. i was so prepared to be told i had cancer of the blood or lymphatic system i googled everything i could preparing myself mentally for it then this gets thrown into the mix and its so concerning that this 50 year old (at least) specialist has never seen anything like it before. i am still struggling with my weight having to take in 4000 calories a day to try and maintain my weight to 105lbs but as soon as i stop and eat normally i drop 2 - 3lb a day. if anybody has any experience of this please do post and thanks for reading the essay
I've never heard of these white spots in the colon either. When I think of white spots, I think of yeast. The weight loss is really significant. Are you going to a GI specialist? Maybe someone else on here has heard of it.
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The enlarged lymph nodes, weight loss, and night sweats all point of lymphoma. You need to get these nodes removed and biopsied ASAP. The fine needle biopsies can give false negatives really easy. A lymph node should not be 5 cm and 3 cm ever. If it was a shotty enlarged node from previous infection the most it'd be is 1 cm. Are these nodes movable or fixed to some underlrying tissue? Are they rock hard or soft? Rock hard, non-movable lymph nodes are most often cancer, but soft and movable ones can be too, although less likely.
This is your health and you need to demand they get to the bottom of this. It's not their life, it's yours, so make things move forward.
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hi all thanks for your replies i had 2 excisional biopsies rare diseases specialist said he would have expected to get a 100% off a 5cm and 3cm nodes all were taken by excisional biopsy they ahve not fully ruled out lymphoma but then i think if there is something in my bowel maybe that would cause 5cm and 3cm nodes and its still worrying because more are swelling. the one they removed from my neck was not one of the 2 concerning ones and 2 weeks after that was removed another was in its place they are rock hard and fixed one on back of my neck now feels like it has attched to my spine at the joint to my beck and gead and i get shooting pains up and down the back of my head its so frustrating because UK have NHS and its free and it takes forever for them to do anything but now they ahve ruled out bowel diseases and nutrients and stuff not being absobed properly still haven't ruled out cancer and i said they cannot remove anymore for biosy til they know what they are taking the ones under my jaw are about 4cm too and thats what they were going to take next but i refused until they do something to find out if it is cancer in there or not. i asked for a PET scan they refused because of the cost involved. as for bowel i thought yeast or bacteria or something but thats fairly common surely he would ahve seen it before then i thought scar tissue but he would have said that too if it was it drives you mad because they dont know what they are taking from you and in turn i wonder and stew on it for weeks because thye want to ' grow ' the cells or something i dont know. as more lymph nodes swell the symptoms get worse the night sweats were originally once or twice a week now they are 3-4 times a night i haven't even got the energy to chase my kids. there is a family history of bowel cancer and lymphoma but members were in 50's on diagnosis god im going to drive myself mad with this im ringing hospital on monday chasing the results
thanks all for your thoughts
Just a wild guess... If the lymph nodes are negative for malignancy it means that it is an inflamatory desease and systemic since you have enlarged lymph nodes everywhere. One of the candidates would be tuberculosis. Night sweats, weight loss, inflamation - everything fits in.
Dx at 39(12/2008), Stage IV, omentum mets,
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Russian27 wrote:Just a wild guess... If the lymph nodes are negative for malignancy it means that it is an inflamatory desease and systemic since you have enlarged lymph nodes everywhere. One of the candidates would be tuberculosis. Night sweats, weight loss, inflamation - everything fits in.
hi thanks for your post everything has been ruled out no infections or viruses lupus, hiv , TB everything allclear i keep thinking back to my ENT appointment when she said although one is clear the others may not be. they have been testing me now since january 2009 all blood tests clear, i initially thought it may be abowel disorder due to weight loss but nope don't know what else to do now suppose i better wait on bowel biopsy results they took 8 biopsies so if there is anything it would be found whether it be good, bad or ugly i would gladly now just be able to take a pill to stop it all and walk away sick of having blood tests and operations and such UK healthcare is rubbish
thanks for your posts
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