lost, need direct answers

dlh · New User Joined: 06 Feb 2008 Posts: 4

hi
well where do i start, am male 36
november last year i was having abdomen pain middle right, went to doctors on 7th, muscle pain she said due to job carpet fitter, so i carried on was really busy, pain coming and going, dec 12 in agony scared me, went back doctors next day, still muscle pain she said, then she wieght me i had lost 11kg since my last visit, she asked about my appetite ect, told her i eat when meal times, never felt hungry, hungry, so she did some blood tests come back on 31st dec. (did blood test on 19th dec)
after my visit i got worse couldnt work, the following evening i felt cold then hot, went to bed and sweat, i was drenched had to keep drying myself with towel all night. didnt have another night sweat as such, just a couple of mild ones at tea time as i was always going to bed as i felt so tired all the time, also started to notice lymph nodes in groin 2 on right 1 on left, 1 under my armpit all enlarged, the ones on right of groin i have felt for over 3 years but not as big.
then came the 31st sat down and doc told me the blood test came back ok
i told her about the nodes and she felt and said i also had some in my neck, sent me straight for xray, and that she would speak to other doc after surgery to see if to refer me straight away or wait for xray, she felt it might be lymphoma but was not sure, was no shock to me as i had already looked up my symptons, she phoned back same day see oncoligist on 9 jan
went he asked of health history, family ect felt nodes in all areas, told me to have blood tests before i left hospital and he was sending me to see ent surgeon to take one out, come back to see him on 6 feb.
saw ent surgeon 16th sent me for scan neck,
went back to see him on 29th put 3kg back on in the time between 9th to 23rd, he said nodes in neck had gone down, bigger than should be but not big enough to take out, blood test did on 9th jan shows virus due to white blood cell count, so i asked why the blood test in dec, when i felt my worst and nodes were swelling did my blood test show clear, but test on 9th when i was feeling better, and neck nodes had gone down, virus he said threw out body.
so came the 6th feb oncoligist again, lost 2.5kg since 29th and i had noticed days before another node under arm before going, shuck my hand sat me down so what we going to do then, send me home i said, i got a sort of smile, he looked at the bloods he had asked for on 9th, and i told him what the ent surgeon had said, he said my lymphocetes was high i think, and went on about scan, hard man to get anything out of, then is words, sooner or later we have to take one out, we will have to wait till one gets bigger, come back in 8 weeks, at this point my dear lady jumped in, hes found another one under is arm, he took a look, or more a feel, and said we could go for that one, or do you want to wait, cya in 8 weeks i said, but now back at home i just wished id said yes, its just at times they make me feel like theres nothing wrong.
but i feel there is and think he does also, first time i met him he said indolent lynphoma, but could be something else, my partner who i love dearly thinks its all nothing, and i should not be reading about it on internet, which i have done since middle of dec, i thought lymphoma before gp said anything, the internet as made me feel stronger and wiser for what i might be in for.
thank you for reading, and sorry its longgggg
your views would be greatly recieved
darren

umbleweed · Regular Joined: 22 Nov 2007 Posts: 25

Similar circumstances with me, Although the nodes in my neck have being swollen for about 5 years, I didn't start getting symptoms until a year ago. And there is still question in what is going on.

Could you answer me a few questions?

How big are you're lymph node swellings? Do you know the particular kinds of lymph nodes in the neck are swollen? What is the texture and feel of them?

I too have lost allot of weight, Almost a stone. I dont seem to be dropping at the rate i belived anymore. I have had nightsweats, But these were durigng the summer months, which i had started getting the previous year (before i fell ill). I generally feel lethargic and hungover every day. My appitite comes and goes, But i certainly still have it and i eat as much as i can, But unfortuently don't gain any back.

You're doctors seem to be working hard to get to the bottom of you're problems. I have been told i have a anxiety problem for the past year and most of my concerns have being overlooked because of this.

I too had blood tests near the beggining of getting ill which all came back normal, More recentley i had blood tests which showed a drop in my platelets, And a drop of my neutrophils making me now mildy netruopenic.

I wish doctors would take me as seriously as they are taking you. I find it very insulting to be told these problems are in my head, Of course i am anxious/depressed. Of course i am acting like a lunatic when i visit the doctors, Only because i don't get answers, arrogance, and malpractice from the medical field. It isnt unreasonable to assume someone would secondly develop these problems because of feeling so terrible everyday.

I have seen a ENT doctor who sent me for Ultrasound of the neck, his report shows more lymph nodes inside my neck, But very small. And according to the scan they appear to be re-active, They refuse to remove a lymph node. But they are planning a FNA biopsy. I had a chest x-ray but i dont have the results of this yet. I also have an appointment with a neurologist because allot of the most diliberating symptoms i have are in that area. I have had to be the advocate for my health in this situation, I have had to push hard for these out-patient appointments.

Its the weight loss that scares me the most, I have being losing weight for a few years, Thinking back when my friends starting adressing it, Thought nothing of it until i became ill. I dont look healthy anymore, I have bags under my eyes. I look like a prisoner of war. My legs and arms are so boney and viens are popping out like rivers everywhere. It feels like im just watching myself deteroiate.

Playing the waiting game is the hardest part about all this,

I sincerely hope you get to the bottom of you're problems. Please keep us updated.

Anthony.

dlh · New User Joined: 06 Feb 2008 Posts: 4

well my oncoligist finally said it low grade adolent lymphoma, whatch and wait, i was a bit shocked as he just came out with it, thought he would say come back in another 8 weeks, but at least i know where i stand now,
thanks darren

umbleweed · Regular Joined: 22 Nov 2007 Posts: 25

im terribly sorry to hear you're diagnosis, was the biopsy eventually performed to come to this conclusion? atleast you now know whats going on and you can begin treatment when the time is right. how old are you by the way?

take care
umbleweed.

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 18 Location: New York

Hi DLH and umbleweed.

Seems like we are in a similar situation. Here's my story:

Current symptoms -

Swelling in back of knee for at least 2mths (ortho has diagnosed benign Baker's Cyst but MRI has just come back negative when it SHOULD clearly show the cyst)

Unexplained weight loss - from 189lbs in mid-Feb, to 175lbs now

Hard, swollen lymph node beneath jaw (submandibular) for 6+ wks. It feels about 2.5 - 3cm long, flatish, and very hard. Definitely different from the other side of my neck, although you can't see it you can definitely easily feel it.

Night sweats - have tried cooling the room, using only a thin blanket etc, wit no luck. Don't get them every night, but 2-3 times per week for the last few weeks.

Tiredness / breathlessness - ok, I'm not the fittest guy in the world but at 35 I shouldn't be out of breath climbing the stairs!

Cough for 3+mths - I have a low-grade persistent cough, which my doc has said is associated with acid reflux for which I'm currently taking pills (having seen an ENT doc). But haven't had a chest x-ray.

Problem is that I've had two cancer scares in the past three months (testicular lump which turned out to be a benign cyst, and suspicious looking mole which turned out also to be benign). I'm starting to feel like my doctor just thinks I'm a hypochondriac and is therefore not looking closely at my other symptoms...

...but it was precisely those 'other' symptoms which made me so concerned about having cancer in the first place!!

Anyway, more docs appointments tomorrow, and I'm going to see if I can get:

1) blood work
2) a chest x-ray
3) a referral to an ENT who will do a biopsy of the neck lymph node

Just wanted to connect with people who also appear to have similar symptoms and who struggled to get a diagnosis. DLH - what was it that finally convinced your docs to do the biopsy? did you have to insist on it?

cheers

Euan

dlh · New User Joined: 06 Feb 2008 Posts: 4

hi umbleweed
no he said the biopsy could wait till i return from holiday in a 4 weeks,
my bloods are still clear no infection but my lymphocetes was high.
my partner still thinks everythings ok, ive stopped smoking and go every 2 weeks to docs, my last visit two days ago, i noticted on computer screen dr paul my oncoligist had wrote back to gp .i was sent by gp 6 months ago, this is first time he as wrote back to confirm . its the pain in my middle abdomen thats doing me in, at min. had it for a longtime but comes and goes but recent allday.
also the tiredness but its strange a feel as though im going to pass out so tired, but half hour relax little nap, then better but couple hours or so after doing something tired again

darren

ps shuggy 1972 sos euan i hope things workout for you plerase stay in touch, biopsy like i have said in posts he new all along just wanted to wait.
if you have swollen lymphnodes in one or two sites, have had blood tests that show no infection for over 6 months, then like my oncoligest said , you look to have a low grade adolent lythoma, we will whatch and wait.
i hope everything works out in your favour darren

umbleweed · Regular Joined: 22 Nov 2007 Posts: 25

Hi shuggy1972 try asking for a SED rate blood test aswel, its a non specific test that measures the amount of inflammation in the body. I would also push for the chest-xray / ct due to the breathing issues. I think going down the line of requesting biopsys is the only way to settle your mind on this matter though, Im sceduled for a biopsy soon, but the waiting times in the UK are ridiculous. Keep us updated on your results, i hope all goes well.

dlh, atleast your oncologist has prepared you for the worst, i pray that when the biopsy is performed that it turns out to be something benign. how much have your lymph nodes grown since you started getting these problems? and what kind of size are we talking here?

best wishes,
umbleweed.

shuggy1972 · Regular Joined: 31 Mar 2008 Posts: 18 Location: New York

Darren - let us know how you are doing once you have a definite result. And try to enjoy your 4 week holiday if you can.

Umbleweed - cheers for your support. Yes, as far as I understand it an open biopsy is the only way to be sure. But for now, my doc has prescribed a one week course of antibiotics, plus a chest x-ray (which I had done today), and has also taken bloods (Complete Blood Count with differential, LDH, and one other one I can't remember!). I go back on Thurs next week for the results of all that, and if things are still looking worrying then I push for the biopsy.

Fully understand the situation with the NHS - I'm actually from the UK, so I know how it works! That said, stuff is scary in a different way here...like if my wife loses her job (say, because I'm seriously ill and she has to look after me) then we lose our health insurance and therefore have no access to care...

Anyway, am thinking of both of you and hoping for some positive news all round.

cheers

Euan

dlh · New User Joined: 06 Feb 2008 Posts: 4

i had nodes swelled in my groin for over 10 years, then under aem since xmas, started with one now theres two grown feel hard but a wood not say fixed about i can place three fingers on the lump, geroin ones seem fixed but not growing darren

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