Potential lymphoma - just worried

Hey,

Not really sure if I should even be posting here, but I actually have nobody at all to talk to and I just wanted to hear some personal experiences or any advice... 

 

I’m a 28 year old female and in around February this year I started to get a cough (normal everyone gets coughs) however it didn’t and still hasn’t gone away, it got so bad at one point that I lost my voice on March 12 (I remember the date as it was my sons 3rd birthday lol) and ever since I have just had a constant cough, sometimes it’s so bad I struggle to breathe. Being a smoker I just put my constant cough down to that. 

 

Fast forward to April this year (still have the cough) and my skin was itching so so badly that I was covered in bruises and blood spots under my skin, it was so bad that I actually visited the doctor (I don’t really like to go to doctors etc incase they think I’m a drama queen) and she did blood and urine tests, the bloods came back normal and urine had slight raised protein levels. She also prescribed me cream and antihistamines to help with the itching but they’re not really any use. I also have the tiny red blood spots on the roof of my mouth. Doctor referred me to a haematologist for suspected Leukemia  but as my bloods came back as normal my appointment was not until yesterday 23rd May.

 

between the doctor appointment and hospital appointment yesterday I have still had the persistent cough, I get occasional heartburn, I am often sick in the morning if I get up too quickly (no possibility of pregnancy) I have tiny red dots on the roof of my mouth still (have been there since at least April I didn’t check before then) my skin was itching so badly yesterday I’ve come out in more of the bleeding under my skin that doesn’t disappear under a Glass on my arm and on the back of my thigh, bruising has also come out on my thigh and on the tops of my feet by my ankles (strange not had bruises there before) I am very tired but that could just be because of the amount I’m stressing, I get night sweats that are not necessarily drenching but I am wet, my hair etc, I occasionally get a weird like numb achy feeling in my shoulder (very strange so hard to explain), I have sore areas under my jaw and what feels swollen glands under the jaw too, also the hematologist yesterday felt my lymph nodes but didn’t say anything to me, and felt my abdomen and when she applied pressure on my right side below my belly button it really hurt, still hurts now... she ordered lots of blood tests (7 vials, I actually have a picture of the names of the tests she wrote down) said that she needed to check my thyroid,and has referred me for a PET scan telling me that she doesn’t want to frighten me but it could be lymphoma , I’m just wondering why sh would straight away refer me for this scan telling me it could be lymphoma, if my blood results were not back and she didn’t comment on the lumps under my jaw, she didn’t say they felt fine but she didn’t say they weren’t fine either....

 

I’m just a bit worried, I do feel as though I have something very wrong, I have done since symptoms first started, I just don’t feel myself... has anyone else had these kind of symptoms or experience? 

 

Sorry for the long long post.

Ashleigh xx

  • No haven’t asked for anti sickness think I might though cuz it’s horrible! It’s not constant tho haven’t been sick today which is good, although did wake up wet from night sweats gross.

    oooo the itching! I get that really badly and it causes bruising and blood spots under the skin where it’s so intense! I had a doctor at my local office and he was just awful I actually had to ask for another doctor as he just brushed me off like I was crazy! And I’m glad I did now otherwise I wouldn’t be having these tests etc. 

    Yeah my original bloods showed everything was fine but I did have more done, haven’t heard from the hospital but I suppose they can’t do anything until I have the scan anyways to determine what this is. I’ve read that Hodgkin lymphoma doesn’t show on blood tests so it could be down to that, which has a very high survival rate so that’s a positive!

    i definitely think waiting is the worst part because you just sit doing your own head in about the what ifs! 

    Hope you’re feeling okay today xx

  • To add to my jourey, 

    Had to go up to a&e yesterday due to bteathelessness, chest pain feeling my neck was swollen. To have the doctor there tell me it was anxiety all because my oxygen was 100% and he off hand told me in his opinion my ct scan waa fine....im was fuming...for start i dnt think it was anxiety, he only did an ecg because of my dad having a heart attack two months ago, made me feel like rubbish for being there and in his opinion i didnt need a chest xray because id had a ct scan 2.5 weeks ago......even tho things can change a spread fast, he made me feel i was wasting his time, the ecg showed st changes but he said it was normal when i dont normally have st changes on my ecg (i have to have yearly ecg because of meds im on). And what right does he have to comment on my ctscan when he is not haem! He was like well that should make you feel better that he doesnt think its lymphoma....left the hospital crying my eyes out because i feel that there is something wrong and he wasnt listening, wouldnr do blood tests or a chest xray to make sure it wasnt a blood clot. Sorry for the rant. 

    I hope you are having a better day x 

  • Further to my other post, i was up again at the hospital today through my gp because they couldnt believe that the doctor on friday decided that it was anxiety withoit doing bloods and a chest xray.....i was seen my the chest team for query pulmonary embolism which thank god it wasn't and also it wasn't heart issues either and oh wait it wasnt anxiety either!!! The resp team dnt know whats causing the breathlessness/chest pain but im now waiting on a lung function tests because even they could see it wasn't anxiety!! I hope you are doing ok x 

  • Hey honey sorry I haven’t replied for ages, I’ve been so up n down with my emotions, I’m struggling atm I don’t have family or anything either. 

    Wow oh my gosh I cannot believe the doctor treated you in that way!!!! That is absolutely shocking! At the hospital aswell is even worse! I had an extremely bad and nasty doc that made me feel I was wasting his time and I wouldn’t even be getting tests if I’d of listened to him! I really don’t understand how people with no empathy or compassion manage to be doctors, you need that side. 

    Im glad that you are getting further tests now though! How are things with you now? Any more news?

    my pet/ct is booked in for Tuesday. Follow up 27th June so not long till a diagnosis now. I’ve got a big lump under my armpit that I can feel inside the armpit doesn’t hurt at all. Still got the cough and red dots and now red patches on roof of mouth too. I’m definitely expecting a diagnosis of something as I know I’m not right. It’s just the waiting that is so long!! 

    Hipe you are okay xx

  • Yeah doctors can be horrible!! I am complaining to PALS because i've had enough of doctors doing thay saying its just your anxiety! I've had 12 years of abdominal pains that are only now being actually looked into. I was trying to argue my point but he was having none of it. 

    I've been feeling pretty rubbish myself tbh with breathlessness getting worse with the chest pain aswell, i keep thinking that my neck is swollen but the doctor can't feel anything! Waiting for our appointments need to be sooner !! Driving myself mad now haha!

    I hope your pet scan goes as well as it can. I have been reading about a condition that might fit similar symptoms other than cancer which is easier to research called Lupus has simialar symptoms to take my mind off things. 

    Keep in touch, you can always vent here if you need someone to talk too x :) 

  • Hey, it’s just a waiting game for me at the momeny, had my pet/ct on Tuesday but my follow up isn’t until 27th so just gotta wait and see now...

    still got my cough, still got hard painless lump under my armpit, still got the red dots in my mouth, still bruising easily and getting blood spots under my skin from itching. 

     

    Hows things with you? Xx

  • Yeah pretty much the same, more exhausted as the weeks go! 

    Hoping work keeps me busy this next week. 

    Take care xxx 

  • Thinking of you today, hope its good news xxx

  • Heyyy just wanted to pop by to see how everything went? 

    Sending hugs xxx