Scary Times

[looby194]

Hi, just needed to talk because I am scared about what is happening- I've had a small red mark on my neck for years but in April it became swollen and I started to feel very tired. In May I got waxed for charity and soon after this lumps appeared under my armpits. The first two doctors I saw thought these were lymph nodes but on the third inspection by a different GP (it's pot luck which GP you see) I was told the armpit lumps were folliculitis and my neck was likely swollen due to the infection. This passed but my neck has gotten worse- the neck preceded the armpits but I was initially so relieved at the doctors diagnosis that I forgot this. On returning to yet another GP I was treated very dismissively and told I could expect to wait 3 months for the swelling to go down following folliculitis- I did nothing for the next few months despite feeling worse and worse. I was referred eventually to see a hospital doctor two weeks ago and In the last week I have been fatigued and sleeping from 12-16 hours a night. I have bled from my mouth during the night and after a few days of this and a 16 hour sleep I was persuaded to go to hospital where the doctor found a lump. I have had sporadic night sweats and a feeling of discomfort if not pain below my left ribs, my abdomen has hurt a little recently and Ive lost 25 pounds since April. My armpits hurt a bit at times but no obvious lumps are there. Ive got a CT scan in 9 days, the hospital doctor who arranged this did so because he could not find a lump in the swelling at the time but was uneasy about what I told him. I feel stiff in my neck at times and alcohol causes a hot but fairly minor sort of pain. My blood results are okay but I am really scared about cancer still- any other ideas what this is because 9 days feels like forever away and sleeping for 15 hours is beginning to affect my life quite badly. This is on top of a relationship breakdown so I'm really, really low. Stress could factor but it's never done this to me before! Other funny things are a permanent bruise on my leg and cold/numb left hand, my thermostat is positively bipolar too with being both hot and cold at odd times. In a funny way Im scared of the scan finding nothing because this is so inconvenient and I can't function successfully at present. Im 31 years old and I wondered if any of this sounded familiar to anyone? Scared.

[looby194]

Hey, still waiting on scan results- doing quite well with not worrying about it. I wondered if pins and needles are a possible side effect of something, it's in my left arm and hand every day now. My GP signed me off work for another month and says they'll be looking at Post Viral Chronic Fatigue Syndrome if they rule out lymphoma. My appointment is on the 31st with the specialist, hopefully I don't get a phonecall before then. Thought I would keep you posted, hope you are well :)

[looby194]

And thank you Ken, it is helpful info- I'm mentally quite good again as there is simply no sense in worrying any more than I have too. Things have been going downhill for months but the sleep got a lot worse when I broke up with my ex, it was fairly stressful but I'm over it now and still sleeping like a stone!

[looby194]

One thing I wondered about was Vitamin D supplements, I have been advised to take them and it's worked wonders for a Chronic Back Pain condition but I have felt lousy apart from that. The weight loss happened without any change in diet or activity but for the last week I have to remind myself to eat as Im just not hungry. I think all my tests have been okay, not sure what they were really, it was just jargon to me Im afraid. Liver function was beneath average but not concerning, as with the White Blood Cell count. Whatever it is, I dont think its going away by itself- I'll find out more on Wednesday with any luck.

[Ken_PA]

"When I try to lie down and sleep my heartbeat is sporadically interupted by funny little rat-a-tat-tats"

aka 'palpitations', most are benign and are either PACs or PVCs (thought of as skipped beats, but really are premature beats followed up by a pause and then a hard catch-up beat). Heart sensations might be worse when laying on the left side. Magnesium might help, or fish oil.

But there are more serious conditions, like paroxysmal tachycardia or WPW syndrome. I'd ask on the heart rhythm group. This angle assumes that you are talking about periods of rapid beats.

Offhand, I can't think of an obvious connection between arrhythmia and cancer. Your weight loss might have brought about a mineral deficiency.... maybe.

[Ken_PA]

Hi, looby. As far as the weight loss, the big question is whether you were consuming fewer calories.

Alternatives to cancer diagnosis? Lichen planus is possibly an autoimmune condition that can resemble skin cancers. It's mysterious.

When you read about the symptoms of a lymphocyte cancer (B or T cell), keep in mind that they are immune cells and so some immune dysregulation that is not cancer might be to blame. The immune system can do mysterious things.

Did you have enormous stress before the symptoms really ramped up? Stress leading to hypersomnia and temperature dysregulation could be Chronic Fatigue Syndrome.  In England. patients have a hard time getting NHS docs to believe it is real. But without muscle pain we can probably eliminate M.E. (Myalgic Encephalomyelitis) as a possibility.

Gum bleeding and easy bruising is troubling because blood cancers get into the marrow where platelets are made and crowd out production. Did you have a CBC test and see that the number of platelets are normal? (I assume this is correct, and so that tends to argue *against* your having a blood cancer.)

There a few long threads here with people who have the classic pain-from-alcohol reaction which supposedly means Hodgkns Disease, but they don't have cancer. That might also be reassuring to you. I will find the threads for you if you can't.

How's that for starters? :)

[looby194]

Bless you too, it's not easy but good to know that I'm not alone. I get bored of people telling me not to worry- cancer seems to be a dirty word and I've been scared. Its not reassuring to be told that it's nothing when you are skinny and tired all the time! Hope it turns out okay for you, cheers for the kindness.

[looby194]

Thank you so much, I'm sorry you have been through hell by the sound of it- hope it is all going okay! Its a waiting game but if theres one thing Ive learned is that doctors arent fobbing me off again! Should get an answer soon but I hate to think how many people have been left too long.

[mystpete]

Bless your heart & damn that man!  So sorry to hear of your recent woes & I can identify with the alcohol pain...I mean darn-it, just when we could use a big shot of Jose or an IV of vodka, we somehow drew the shortstick!!  Please start keeping track of anything new, no matter how small it may seem & keep pushing to find a Doctor that like's a challenge!  Keep your chin up & please know you are in my thoughts & prayers.

[Mochadelicious]

Hello.  Sorry to hear of all you've been going through.  You do seem to have some lymphoma like symptoms, but lymphoma is not easy to diagnose and it's symptoms can also mimic other diseases.  CAT scans can look to see if you have swollen nodes that look malignant, but a biopsy of a swollen node is the ONLY way to diagnose lymphoma.  So, if a suspicious node pops up on your scan, ask if it can be biopsied.  Blood tests aren't recommended for diagnostic purposes either as you can have normal levels and still have lymphoma.

Getting diagnosed with lymphoma (or ruling it out) is definitely a roller coaster ride of emotions.  It took 3 years (yes, I said years) for myself to get diagnosed.  It took about 3 weeks from the time I had a biopsy before a final diagnosis was given.  At that point I was unhappy about the diagnosis, but happy to finally have an answer and a starting place for treatment.

Good luck and please keep us posted on your CAT scan.

[looby194]

I might add that smack bang in the middle of my chest is funny too- not sore, Im just aware of it. When I try to lie down and sleep my heartbeat is sporadically interupted by funny little rat-a-tat-tats, this is quite new. I know little about Lymph nodes but my lump is near the Virchow's node and I don't like the sound of it one bit as I have heard of that and it's not exactly filling me full of optimism. I've felt progressively worse over the last 6 months and the swelling has sort of matched this.