Cancer Chat online community
Im a 28 year old who is in pretty good health but I've been going through a very rough patch. I've been having problems with lymph node swelling and a sensation of a lump in my throat for a long time (over a year and half). The Lymph nodes have been swollen for a very long time and after I found new ones coming up I went to the doc who just told me to stop worrying. A month later more came up so I went to see another doctor last week who sent me for the usual FBC blood tests. Thankfully these came back normal but she informed me that Lymphoma which is what Im being tested for does not always show up in the blood tests. Is this right???
She is sending me to see a Hematologist for them to give me the full examination, scan and possible biopsey but having the nodes grow and some of them have become hard like kidney bean sized rocks I am very nervous at the moment. The nodes are in my neck (2 on the left and 2 on the right), 1 under my chin and 2 in my groin area (left and right side) so in total I have 7 that are swollen and after 1,000mg of Cipro antibiotic tablets for 2 months last year they have not changed and in fact more have come to the surface.
What I am wondering is if my bloods came back as normal is this a good sign and has anyone else on here had normal blood tests with hard swollen lymph nodes but have been diagnosed with a form of Lymphoma. I have been getting night sweats, more severe fatigue than I've ever had in the past and weight loss (around 5 lbs in 2 weeks)
Any help or advice would be greatly appreciated.
It's Judith and you know where to find me. Also, there are other people here on this site who can probably help. Thought you'd sorted things but obviously time to take action. There is someone else on this site who is going through this but don't alarm yourself as if it is anything sinister then there are lots of things that can be done. Is partner OK?? E-mail me ASAP and I'll try and help. I look forward to hearing from you.
I thought things had been sorted out as well but more lymph nodes started to come up so I went to see a new doctor again and she found morelymph node swellings had come up :0(. The antibiotics that I was on havnt done anything for these and boy they were strong tablets to take. The other half is ok, Was diagnosed with Fibromyalgia at last. The other half needs to loose a little bit of weight to help with the breathlessness which in turn will help with the fibro but apart from that they are all ok.
I've sent you a little email and look forward to chatting with you again. Its been a while. I hope you are ok as well. Im going to have a little look for the other person on here in a min. I hope they are ok.
Jay - the lady is called Kim on the same subject area. I've already asked her to post to you. She has had inaction from the medics and has lost around 5 stone. I'm NOT saying your problems are the same but she may be able to help. If I lost 5 stone I wouldn't be here because I'm only 8 stone......
I've just had a little look to see if I can find her but am at a loss. Hopefully she will come through but will have another look later. Loosing 5 stone now that is not the best and I dont think I would be here either if I lost that amount. I weighed myself earlier and I've put 2 lb back on but that was probably due to stuffing my face with chocolate over the past 2 days and having a hypnotherapy session to help with the worrying thoughts. I have read that weight loss is a sign of cancer but then read with some other sufferers that weight loss has not effected them.
Fingers crossed that everything will be ok though.
Speak soon and its really good to hear from you again
hi jj08 its kim just reading what you posted ive struggled with GP's and consultants and at the minute im still fighting i started out at ENT because i had 5 swollen lymph nodes on the left side of my neck and 2 either side of my groin but of course ENT deal with nothing except ENT they did FBC and they were clear except raised white blood cell count they then decided to scan my neck which showed 2 of the lymph nodes had grown inwards through the '' cervical'' muscle so ENT decided to operate for biopsy. I went back for results and they told me they were reactive so they showed slight changes but they weren't malignant my weight loss at this point was sustained at 8lb per week and i was constantly eating to try and put weight on they decided to tell me that although one was reactive the others may not be which of course left me confused they then refferred me to general medicine because even though my thyroid was healthy on all tests they thought it was that in the meantime i threw a hissy fit with the PALS depatment at the hospital and a meeting was held regarding me on the wednesday and i had an appointment on the thursday morning. I was examined again told thyroid healthy AGAIN they were concerned by the lymph node in my groin which is 4cm they refferred me to haemotology saying worse case scenario lymphoma or leaukemia. Also had more blood tests, water samples and refferal to general surgery and for full CT scan. Got the heamotology appointmnet but nothing for the others haemotology wanted the biopsy before i saw them but general surgeon could not be contacted so after another heated telephone call threatening national papers etc i got the appointment through for CT and general surgeon within 2 days of each other. Haemotologist 'grew' urine sample and found unrelated kidney infection and also a huge lymph node swollen under right side of my jaw and under my left armpit but said he could do nothing until groin biopsied and CT scan had been done. General surgeon decided to operate to remove all lumps in groin for biopsy which i have next wednesday and he found another lump under right armpit and 3 more lymph nodes in right side of neck. I know its hard to try and advise but im showing weightloss, severe fatigue ( to the point i nearly fall asleep driving) and hot sweats and chills. Can i ask the night sweats are they to the point of windows steamed and bedding as though you've wet the bed? its just i thought i was having night sweats because i wake up around 3 am every morning absolutely pouring in sweat to were i think im going to collapse but they ask about bedding being soaked etc. i bruise easily and my gums bleeding alot and i must say i have googled everything i can regarding lymphoma and leaukemia and it doesnt help and because of the way the consultants are you think your losing your mind and its hard to fight them but if your getting to the point you need to be hypnotised to sort out your thoughts you need to push them i had to tell them that if they didnt find the cause of the weight loss i would die anyway within 12 weeks i would have weighed 5st. i dont mean to scare you at all so please dont think i am ive hit a brick wall at all corners my lumps started around 9 or 10 months ago and the ones in my groin i got told by GP they were fatty lumps. my post is called terrified about cancer ive been though what i presume to be all the phases of dealing with the prospect of what it could be but ive got to the point now that i have to let my life take the path is supposed to and deal with it as it comes i strongly believe that everything happens for a reason and if its meant to be its meant to be i really do feel for you at the minute but you really need to fight for the appointment if your really concerned the PALS departments are usually quite helpful. As you rightly said weightloss is one of the signs of cancer but it can also be a sign of other things viruses etc usually a sign of extreme weightloss is over 10% of your overall bodyweight i have lost 35 % of mine i now weigh 8st i know ive rambled on a bit but i really believe that you have to strengthen your mind because the consultants are evasive with results and possibilities they dont understand that we have all googled what it could be and are terrified of it but if your terrified of it and it turns out for the worst ( which it wont x) then its won whatever it is you cant let it do that please please fight for the appointment if just to put your mind at rest. im currently under 4 differant departments at the hospital and i know for a fact ENT suspected cancer and i now know thats what she meant when she said they might remove another its so frustrating but the people on hear are a great help with support and advice goldenbird is fantastic along with a few others. Can i ask how old you are? you see im only 22 and you get told you're too young for any kind of cancer which of course is wrong i have lymphoma, cancer of the tongue and cancer of the colon on both sides of my family and afetr seeing my grandad go through it when i was 11 i was terrified for my kids then i realised i needed to be strong for them i think my youngest was starting to pick up on my feelings he was clingy etc and my eldest cried when he saw the stitching from my first biopsy its an awful awful process to go through and do so hope you can have an answer sooner rather than later please if you want to ask me anything just leave a message on my post
sorry i can see youre 28 i had the feeling of a lump in my throat more so when i lay down i felt i was being choked and it turned out to be nothing it seems to have disappeared since they removed the lymph node for biopsy xxx
Blooming heck it really does sound as though you have been through hell and back with your health concerns, appointments, seeing specialists and everything else. Why doctors and the so called specialists dont pull their finger out to get things like this sorted sooner rather than later I will never understand. I really would like to say that my thoughts and prayers are with you and I hope that very soon you will get the answers and any treatment that is needed.
I must admit that the weight loss that I have had is not as severe as yours but I am looking more thinner and tired which the doctor picked up on when I went to see her. Cheek bones showing and you can see and feel my rib cage and my collar bones and spine can be felt which my partner doesnt like at all. I had my appointment though for the Hematologist thing morning and its for Monday 16th so only a few days left then I will be up there like a bull in a china shop demanding that they tell me what is wrong and give me the tests that I need to get this sorted.
Im also waking up nearly every night sweating like I have wet myself. I change my pyjamas, put a towel on the bed so im not laying in a damp area then fall alseep again only to wake up with the towel drenched in sweat. Its driving me mad. The tiredness is also something that I never normaly have but since last September/October time I have been feeling more drained of energy and all I want to do is sleep. I get the usual 7-8 hours on and off sleep every night and will get up at around 8am but by midday Im shattered and start falling asleep infront of the laptop. I work from home so its not so bad if I do nod off for half hour or a little longer.
I've suffered with aniety for a long time and am currently getting over Agorophobia so the thought of going to the hopital does fill me with dread and fear but I am determined to do this as my health is more inportant to me than a litlte panic attack getting there. I must admit that the thought of having an OP on these nodes also worries me due to a phobia about operations and the fear of not waking up but again I will fight this if I need to have it done but will ask if they can do a needle biopsey and scan before going under the knife.
These lymph nodes on my neck are driving me mad though. There are so many of them on my neck (left and right), 1 under my chin and 2 in my groin (left and right) with 2 of them being pronoinced that you can actually see the lumps when you look at the upper side of my neck (either side of upper side of my adams apple). I dont know if this is related but I have also had pain in my knee that has for the past few months migrated up to my hip on the same side. Arrgghhhhh its just driving me mad with no knowing whats going on. All I do know is that I dont feel right and have never been this tired in all my life. I will get this sorted though and Im going to stop there so I dont end up writing a novel lol.
Thank you again Kim for sharing your experiences and I relly do hope that you get this sorted out soon.
hi jay dont worry if they opt for biopsy then can do a fine needle aspiration its called where you are awake under local and they do the needle thing. they may well do that if your concerned or have phobia's about being put under im so soft when it comes to doing things whilst im awake i refused c section with both my kids unless it was necessary wouldnt touch the needle in the spine thing i hate needles so i was relieved when general surgeon changed his mind about doing it under local lol the weight loss is awful especially when it hurts to lie down because your ribs are sticking out i was at one point a size 8 before i had kids but i was normal my ribs didnt stick out and i still had a double chin lol i also strated getting pains in joints but starting at my hips and spread all the way down to my toes it is a horrible feeling but i have 500mg co codamol to ease it they great like horse tranquilsers lol i dont mind the ops its just walking down to theatre with a gown that is tied at the back but im still flashing to all and sundry because it's too big lol bet the trainee who was watching op got the thrill of his life or maybe the fright of his life seeing my backside lol oh and i think every trainee in the hospital has felt my groin, neck and armpits they all have a go embarrasing they always seem to be lads lol anyway good luck for the 16th i go in for op on the 18th i thought i may have made you panic with my babbling lol but it was early hours lol i'll be thinking of you on monday im sorry to hear about your anxiety and agrophobia but im glad to read your willing to fight not only them but yourself to get in for the appointment you seem to have been through the mill yourself with regards to your health sorry im rambling again,
thinking of you on monday
If they can do the needle aspiration I will be a lot more at ease than going under. I dont like needles or anything to do with invading my body but I think in times like this we all have to bite the bullet and do what is needed to get the answers we need. Sorry if this message is confusing. I fell asleep again and have not been up long. I just hate feeling this way and wish it would stop. If I had an infection, the flu or something else that was causing all of this I wouldnt worry as much. Its just horrible not knowing whats wrong.
I wonder what can cause the pains in the joints. I try not to take any pain killers as they always upset my stomach and this is the last thing I need when going to appointments. The worst thing with all of this is the job I do. Im a spiritual teacher and spiritual healer so I feel like banging my head against a wall at times, wondering why I cant heal myself with whatever I am battling with. Maybe this is a lesson that I have to learn or something I have to go through. I just dont know. What I do know though is I will fight this, whatever it is and will win.
I've also had so many doctors prodding me and poking every part of my body and had to have a very embarrasing examination last year when I was diagnosed with Prostatitis but thankfully the antibiotics I was given cleared this up but the examinations were horrible. I hoped that the lymph nodes were part of this condition but they were swollen for a long time prior to this diagnosis and are still swollen with the others popping up after it had been cleared. arrgghhhh its just a nightmare.
Whoops, Im mumbling again lol. Kim thank you again for your message, It really does help and I will also be thinking about you for the 18th when you go in for you op.
Take care and I think it will be good for both of us to try to relax and to have a blessed and restful weekend.
i know what you mean i was so worried about my biopsy results i actually tried to read my own tarot cards lol needless to say it didnt work lol im sure people think im going mad i once got told if you have a problem ask a loved one a question before you go to sleep ( of course that is dead family) and you would dream the answer so i did every night for two weeks and got nothing lol just dreams about tidal waves lol but seriously dont worry your in the best hands with a haemotologist i thought ' what the hell can a blood specialist do for me '' when it turns out he was an expert in lymphoma shot me down in flames lol. It may well be a test as i said on my post ive done tears, depression and now ive realised it cannot change the outcome good or bad so what little energy i do have i cant waste on my own self pity because it wont help me either way we've just got to roll wiith the punches as they say and hope and pray for the best although it never looks good when we look at it ourselves and it always looks worse still when you get told nothing by a consultant and you start to get paranoid as to why they haven't told you anything. stay positive it will help you mentally anyways and if it doesnt help just ring the complaints department throw a huge hissy fit and vent your frustration it always helps lol
i always find if i sleep during the day i dont wake up until the following morning lol i could sleep on a washing line lately lol
Hi i am in a similar situation i have enlarged/swollen lymph nodes, 1 under my right ear on my neck and 1 along my collar bone on the left side. The lumps have been there since the begining of January. I have had 2 blood tests over the last month, first one came back normal but then when i phoned gp to talk to him he said my white cell count was slightly raised and said i might have some infection. I have been so tired and have had itchy skin on and off leaving a rash. I went to visit gp and discussed my blood results and told him i thought it should be investegated further as the lumps were still there and i was feeling really ****. My gp then said i should take another blood test to see if my white cell count had come down and he has referred me to see haematologist, my second blood test showed my white cell count had come down but i had some c reactive protein showing some imflammation. My gp said it was best i see the haematologist to get him to have a look at me. My appointment is Monday the 16th of March. I really hate not knowing what is going with me and i feel that finally seeing the specialist on Monday may provide me with the answers i am looking for. I hope you also get the answers you want and hope that you will begin to feel well again soon, i think that the more you worry about something the worse it will become. Take care and Goodluck for Monday.
Sorry to hear about all your probles with the Lymph nodes and slightly raised white cells and c reactive protein. I feel like a fraud at the moment as my own blood tests came back normal with no problems but saying that the doc only tested me for my FBC, Bone density, Kidney, Liver and a few other things. I really dont know what to do at the moment and might do what Kim did and will pull some tarot cards to see what they have to say although I must admit that im having a bit of a spiritual crisis at the moment with asking the question "WHY". All I want to know is what is going on and why all these lymph nodes are swollen, wont go down after such a long time, constant tiredness, fatique an pain in my knee and hip that is running down my leg tonight.
I've only had the 1 blood test since seeing the doc about these Lymph node swellings and I wonder if the Haematologist will want more but what I am hoping for is that he will want to take a biopsey to get to the bottom of this problem. I know it sounds strange to want something like this but if he does the test I know that this will be the 1 wy to finally know whats going on and if I have something wrong that needs treatment then the sooner it is caught the better.
Right I had better stop there as Im thinking about things even before I've seen him but wanted to say thank you for your message and I will also be thinking about you on Monday. I will leave a little note on here Monday night to let you all know what happened at the appointment.
Take care and wishing you a blessed evening and a restful sunday.
I think we've said stuff before on another thread but just wanted you to know that I'm glad something positive is going to be done and I hope that eventually your mind will be set at rest or some positive action will be taken.
I've talked with JJ08 several months ago and he is a good bloke.
Hi Judith and Kim.
Sorry for the delay in getting back to messages. I lost all internet access for a few days but everything is back now. I HOPE.
How are you Kim?
Well, I went to see the haematologist on Monday and felt like I was banging my head against a brick wall. No answers given even though he gave me a full examination, chest x ray and im waiting for a scan on my stomach and pelvis now. He really manipulated the 2 large nodes in my neck and the trainee doctor had a feel as well comenting that they were firm but not hard then he found some more lymph node swellings in my armpits and a few more in my groin but didnt say anything else apart from the MMMMMMMMM sound.
I just dont know what to do now apart from wait the 6 weeks until I have to go back to see him and hopefully the scan will have been performed by then. What Im wondering is should I ask for a second opinion as I really dont feel happy with the explanation or lack of that I got from him. Sorry for the short message but I dont want to maon and groan as I know there are lots more people out there who are really suffering with a lot of stuff than I am, I just wish I knew what was going on.