Cancer Research UK main site
  • Replies 3 replies
  • Views 535 views
  • Users 0 members are here

I don’t know what to think..

tonkie18
Offline

Hi, I'm new here. I have read some posts on the forums and you've all been so supportive and I guess I'm just worried and need to speak to someone.

So it's a little complicated. I have various health issues but just wanted to see if anybody had the same symptoms before being diagnosed with cancer? I'm trying not to read up on the internet as it all says cancer.

I may as well start from the beginning.

3 years ago I had my 3rd child. Shortly after this I started bleeding after sex, bleeding between periods and bleeding from my vagina after bowel movements. I've always had torrential, painful periods (mum and sister have endometriosis but I've never been investigated). I was referred to Gynae. I was on the waiting list for 2.5 years. I was finally seen a few months ago and awaiting hysteroscopy. 

A year ago.. I had an operation on my Achilles tendon (they're too tight). Months after this I started experiencing coldness in that foot, pins and needles and numbness. I put it down to nerve damage from the op.

4 months ago my hand started swelling up. I assumed osteoarthritis (I have it elsewhere and my mum and nana are very bad with it). In the last year I have multiple joints that are incredibly painful I feel like I've aged 30 years.
 

About 3 weeks ago my hand swelled up again and this time I lost the feeling in my fingertips. I saw the GP who gave me steroids and did an urgent referral to rheumatology. I started the steroids, the swelling improved but my hand turned purple and was frozen. The GP was concerned about rheumatoid arthritis. 
 

The rheumatologist saw me within 10 days and sent me straight to A and E. My hand was 'dusky' and they were concerned it was cardiovascular. A and E didn't really know what to do, ended up with a CT scan on my arm checking for blood clots which they said would be unlikely due to my leg doing the same thing for the last 8 months. There wasn't a blood clot and I was let go.

Monday I was put on Nifedipine to try and help my circulation as my hand and foot are purple, I have pins and needles in all my limbs and I'm freezing. I took one tablet and the hives started an hour later. The next day my eyes were swollen closed. 

Rheumatology called again and took all my history. For the last 5 years I've been having numerous allergic reactions, my face swells up, my eyes swell closed. I'm now allergic to every antibiotic but one, countless other medications, latex, anti inflammatories, sunlight I think and god knows what else. I also suffer with eczema and asthma. I get pneumonia whenever I catch a cold.

Weirdly in the last 2 weeks I've had heartburn which I never normally suffer with, indigestion and incredible bloating. I've noticed whenever I don't take my painkillers I get a temperature and I get this weird butterfly rash on my face. I have had night sweats on and off for the last 6 months where I wake up drenched.

The rheumatologist sent photos of my flare ups to all her colleagues and made me go in. They took 11 vials of blood, 4 bottles of urine, ordered an urgent CT scan on my stomach, nerve conduction tests on my fingers and toes, sent an urgent referral to immunology and chased up my dermatology referral. 
 

She said that my immune system is naughty and she wants to believe there's something up with it and now maybe it's attacking my joints, tissues and other things. But she's also ordered the CT scan to rule out something more sinister. She hasn't said the C word but I'm terrified that's what they're thinking. I have 3 children, 2 have additional needs and my 5 year old son especially relies on me so much. I'm just in a state of limbo. I have all these worrying symptoms, i feel terrible every day, so ill and everything hurts.

I can't stop crying and I'm so frightened they're going to tell me something that can't be fixed. I feel like an imposter writing here, but I'm sending myself into such states keeping it all in. I don't want to talk to my family as I don't want to worry them. 
 

Has anyone had similar symptoms? I'm probably being irrational but I'm terrified I'm going to die and the children won't have their mum anymore. 

  • Offline

    Hi

    I didn't want to just pass your post without a message.  I have no medical training or knowledge, but do know how much we worry about 'strange' symptoms and that Dr Google is an addictive nightmare, and rarely gives good (or accurate) news!

    Like you, the last 6-8 months have seen me experience lots of symptoms prompting numerous GP visits - where before this I was never there! I've had a CT scan, abdo ultrasound, colonoscopy, mammogram and still have severe joint/muscle + back pain, skin rashes, intermittent swelling ear + armpit nodes, and still no answers.  I'm going through menopause so hormones are haywire too, which makes anxiety ridiculous.

    You mentioned seeing a rheumatologist - I knew a lady when I was younger who had lupus and that caused some of the symptoms you mentioned, it took a long time, and lots of worry to finally get her diagnosis. She lived a very long life with it, so don't jump to worst case scenario as lots of conditions can be cause.  Believe me, I know that's easier said than done - but you/we are doing what we can by keeping on pushing for answers.

    Good luck - I hope you get answers soon and can begin to move forward.  Xx

  • Offline in reply to CLCAC

    Hi

    Thanks for your reply. I know I shouldn't jump to worst case scenario.. it's just gone from 0-100 miles an hour and I'm so frightened now. I've suffered with all the allergies and joint issues 5 or so years.. but the circulation issues are new and they seem very concerned. 
     

    I think she's doing the CT scan because I've been getting heartburn and bloating recently.. but the bloat could be due to women's problems I guess. Thing is im worrying about every last symptom now. I have one purple hand and one black one from all the bloods - my arm has bruised horrifically. My face is a mess from the allergic reaction and I look terrible. I feel terrible. I have no energy. I do one job and im exhausted. I'm only 35. 
     

    Yes I think a lot of my symptoms do fit with lupus and I think the doctor might be thinking it too from the questions I've been asked. If I'm honest that would be a relief because my head is going to all sorts of sinister places now.. and it would allow me to consolidate all of my illnesses - as there is so many! I have felt like such a loser for the last 5 years being Ill constantly with this or that. My daughter has an autoimmune condition so they are hoping it's something like that rather than something life threatening.

    it was only last night I made the connection between my gynae issues and all of this going on and I really started to panic. My GP's fought so hard to get me seen to but I didn't meet the criteria for an urgent referral so I was waiting for nearly 3 years and they still haven't done any investigations on me.

    im sorry to hear you're struggling too. 6-8 months is a long time looking for answers you must be so frustrated. I feel silly I haven't been getting checked out sooner and just diagnosing myself to avoid a doctors trip. I have to call the doctor almost weekly for more steroids it's embarrassing at this point. Good on you for sticking at it and trying to get the help you need, keep fighting. Although they're rushing me through these tests at the moment, it's been such a battle getting referrals for the last few years for anything - just keep chasing and pestering.
     

    The menopause has a lot to answer for it wreaks havoc with your body. It must be a comfort that they haven't found anything worrying though, but it must be hard not getting answers. I really hope you get some relief soon.. my test results will start to filter through next week. I have to have more bloods and the scans should be soon too. Think I'm having a doppler on my arms and legs to check my arteries as well. I'm just so scared. My dad had awful cardio issues so I'm scared it's something like that. I'm scared it's something like cancer and I've left it so long. I want to feel better but I don't think I want my results. I think lupus would be a relief. 

    I'm so sorry for ranting, my head is full. I feel awful and im really worried about how bad im starting to feel each day. Thankyou so much for letting me get it out. X

  • Hello and thank you for your post.

    I can see from this and your other post that you have a lot going on. I'm sorry to hear about your symptoms and the worry it is causing you.

    Your symptoms are not necessarily anything to do with cancer and I do think that if the rheumatologist was worried you had cancer that you would have been told this and possibly referred to a specialist cancer team.  Some health conditions can be difficult to diagnose but it does seem that your rheumatologist is doing everything to find out what is the matter.  Also, please be mindful that the symptoms of cancer can be caused by other health conditions. 

    It's good to read that you are not searching too much on the internet, as this is likely to frighten you and won't tell you what is the matter.  But as Cancer Chat is a cancer forum, it is probably not a good idea to spend too much time on here either as this will keep cancer at the front of your mind when your symptoms are more likely to be caused by something else. 

    Hopefully you will know more about your situation soon and get a diagnosis.

    Take care,

    Caroline

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.