Hello everyone,

I used this website a lot during my diagnosis journey and reading other people’s stories helped. I am hoping my story will possibly help others in the same situation, as I know many people don’t post once they’ve found out they do not have cancer. Its long so settle in!

My story starts with going to the GP with night sweats, they are horrible, and they still wake me up at night, at 26 years old I figured I was too young to be getting these so something wasn’t right. The GP sent me for FBC and hormone blood tests, all came back normal, but the GP assumed PCOS (polycystic ovary syndrome) this was the beginning of December 2018. I questioned this diagnosis with a different GP (as my hormone levels were fine) for a second opinion, who then referred me for an abdominal ultrasound which was an easy examination (apart from having to hold so much water in my bladder!) and a whole raft of more blood tests for infection, deficiencies, malaria, kidney function etc he tested for 18 different things in total, all came back normal, apart from the ultrasound. The ultrasound results should have taken a week to come back (I chased almost every day, nobody likes the wait, its the worst part!) and they came back after three weeks detailing a slightly enlarged spleen.

From these results, my GP referred me to a haematologist as urgent suspected lymphoma (on the 2 week wait pathway), and I finally saw the consultant in February 2019. The first appointment was just a chat about symptoms, by this time I was still having night sweats, but I had also lost more than 10% of my body weight without trying to, and I had an almost continuous ache at the bottom of my back, and fatigue. But NO lumps could be felt anywhere, so my consultant sent for more blood tests to rule out glandular fever, HIV, hepatitis etc. and weighed me and took my height.  

It is worth noting I started to have eye trouble at this point too, which was diagnosed as anterior uveitis at a separate hospital, it is a reasonably rare condition and can very rarely be associated with lymphoma but is more commonly associated with other auto immune illnesses, but no one seemed to want to link my two issues together even after I explained.

My bloods came back all clear (again and for the third time) so my consultant sent me for a CT scan, as not all types of lymphoma will show up in blood work!

The CT scan was painless, changed into a hospital gown, a canular was fitted to me arm, I lay on the bed, dye was injected and I moved in and out of a noisy donut a few times whilst being told to hold my breath at various points….really nothing to worry about (and it is true the dye makes you feel like you’ve peed!) The worst part again is waiting for results. I was told 1 week, so I chased my haematology dept a week later, they said they had my results and they were going to be discussed at an MDT (Multi-Disciplinary Team) meeting the following Monday, so MDT had me at panic stations! As prior to the CT the doctors really didn’t seem concerned about cancer, but it turns out they discuss all cases regardless.

A week later I had an appointment (so around 2 weeks from having the CT scan to finding the results). Much to both mine and the haematologists surprise, there was a 2cm supraclavicular lymph node on my left side (we couldn’t feel it because it was unusually positioned just behind the collar bone, so had grown inwards instead of protruding out!) and a hand full of enlarged mediastinal (chest) and hilar (branch of lung) lymph nodes around 1.5cm in size (abnormal is classed as over 1cm).

2 weeks later (this brings us to the end of March 2019) im in the hospital having an ultra sound guided core needle biopsy on my 2cm supraclavicular lymph node. Only my body had other ideas, and the radiologist performing the biopsy said it was too risky to take the sample due to the positioning of the node, so he didn’t do it! I was devastated. This day also marks the first time I had been told I probably have lymphoma, and that it was unlikely to be anything else…thanks Mr Radiologist!

So again back to still not being any closer to a diagnosis. Unfortunately for me, the only other nodes that could be tested were buried nicely behind my breast bone, this meant surgery. I underwent a mediastinoscopy (with bronchoscopy) under general anesthetic on the 17th April 2019 (unfortunately it was cancelled the week previous on the day due to a more urgent case). For the mediastinoscopy operation they make a 2-3cm incision between your collar bones and a camera and biopsy tools are placed through a metal tube through the incision to enable chunks or whole nodes to be removed, it only takes about an hour, and you can go home the same day if the anesthetic has worn off sufficiently. I woke up with a sore throat, a new attractive husky voice (haha!) and an aching neck, I only needed to take paracetamol and after and 10 days I have no discomfort at all, and my voice had returned to normal. Throat lozenges are a god send too! By the way when you’re in post op recovery, say yes to the soup and ice cream (if its lunch time) because you cant go home if you don’t eat, and the dry mouth you get from the anesthetic makes it impossible to swallow the sandwich!!

Worth noting again at pre-op I was informed it was probably lymphoma, and again when I came out of surgery, I was informed that my lymph  node was indeed abnormal, and huge, they were only able to take samples from one node because it was too big to get past in order to biopsy others and had probably grown since the CT scan in March 2019, and my lungs were clear, indicating again that it is probably lymphoma. I was told results would take anywhere from between 1-3 weeks, and I requested the results over the phone.

One week later (2 days ago 24 April 2019) my results were in…NOT lymphoma, but a rare disease called Sarcoidosis (not cancer), there isnt much funding for sarcoidosis so there are only theories as to what causes it, most commonly accepted is autoimmune, there is no cure, for some people it gets better over years, for others worse and for some fatal. It can occur anywhere in the body sometimes causing scarring and irreversible damage to organs by depositing small clumps of tissue.

A large % of people around 95% I think have sarcoidosis in the lungs so can be picked up by CT or chest Xray. In my case it appears to only be in the lymph nodes which is more unusual, I read that is occurs in around 25% (and probably eyes occurring in 15%…wish someone would have connected my eye and body symptoms with sarcoidosis earlier, but such is life) It also doesn’t have to stay in the same place, it could disappear from my lymph nodes and reappear in my lungs for example, it seems that no two sarcoidosis cases are the same. Its also worth noting that a PET scan will still glow with sarcoidosis, I think this is why biopsies are essential. Although sometimes sarcoidosis can be suggested by some blood tests that look for autoimmune/inflamation activity in order to tailor further tests, however in my case, my bloods were fine. The % figures given here seem to vary quite alot too depending on where you look for information.

I now await to hear from my haematologist, it is up to her (and the MDT) to decide if they are satisfied with the diagnosis of sarcoidosis, as they may want to biopsy some other nodes to make 100% sure that lymphoma isnt present aswell). If she is happy there is no cancer, I will be probably referred to the pulmonary department for further investigation into the sarcoidosis but will probably have to deal with my symptoms for many more moths now too.

So my main points are: There isn’t always a lump visible to indicate that something is wrong – listen to your body. Getting to a diagnosis when under investigation for lymphoma can take what seems to be a life time – nearly 5 months in my case, but it is still a lot quicker than the non-urgent pathway. Even if three people have told you that you’re likely to have lymphoma, always consider alternative diagnosis so you are prepared for every outcome, I wasn’t prepared and it left me feeling helpless. If you’re not convinced by an initial diagnosis or don’t feel like you’re being taken seriously – get a second opinion, you are entitled to do so, its a good job i did, because I do NOT have PCOS. Waiting for test results is awful! People will tell you to take your mind off it, you may not be able to, I certainly couldn’t it affected my work and was exhausting, it doesn’t make you weak you’re dealing with a lot, also be pushy to get your results if you need to be. Speak to people as openly as you can about how you feel and what you’re going through – I exhausted my self by pretending to be emotionally fine for months (even though people knew what I was going through), this was wasted energy that I didn’t have, and it was a relief when I finally had a little cry to my husband 4 months in! Remember, yes its you going through this journey, and its easy to become self-centered and that’s okay your world is spinning, but the people closest to you are going through this too, just from a different perspective, talk to each other, and help each other.

Now I told you it was long didn’t I!? If you read it all thank you, and I hope it helps someone who is searching for answers in the future.

Best wishes and good luck on your journeys,

Hazel