So sorry to hear about what you've been going through.

Ultimately you know your body and the symptoms you've mentioned definitely point to something being out of whack, even if it isnt cancer - there are many things it could be.

I'm very surprised they didn't go through with the biopsy though, given your other symptoms.

I have Hodgkin's lymphoma and they only managed to diagnose this through a tissue biopsy - all my bloods and everything else was within the normal ranges, so I would definitely push for a biopsy if you can or at least further tests. For example, I had a PET CT prior to having my biopsy, essentially makes any potentially cancerous cells glow like mad on a scan. This would give them a good indication of if something else is going on at a cellular level but I'm surprised they decided against the biopsy. Most of my nodes were tiny so they just took a try from three different spots to make sure they got as much potentially testable material as possible.

I don't say this to worry you! Just to say, you know your body, and obviously these symptoms you're having are unpleasant and so of course the sooner you can find a cause the sooner you can get on the road to recover , whatever the outcome.

In answer to your question, I didn't actually display any of what they call B symptoms e.g. sweating, fever, itching. My investigations started as I had groin and pelvic pain which they thought was a ruptured ovarian cyst but they did an ultrasound of my entire abdomen and found lesions on the spleen and a couple of the groin nodes enlarged- not enough to feel them mind you! It seems having lymphoma without the b symptoms is quite uncommon, even the specialist the first time he saw me said it was highly unlikely I had malignancy but here we are! :D

Also out of interest did the person doing the biopsy look in different areas of the body or just the one? It's quite normal to have lymphoma as I do and still have over 90% nodes presenting as a normal size.

Sending best wishes

Feel free to message if you need a rant

Rose :)

Hi, Rose. Thank you so much for taking the time to reply. I'm sorry to hear your diagnosis, I hope you are on the road to recovery very soon.

The lady only scanned my neck. She said they all look textbook. She said if I had a biopsy and then caught an infection, she wouldn't be able to justify giving me the biopsy. It's all a bit rubbish really.

You haven't scared me - if anything, you've given me the fight to keep pushing this. You're right - I know something is off. I just wish I knew what it was. I'm waiting for a call from a doctor (hopefully tomorrow) to advise me on what will happen next.

The doctor had told me at the hospital he was sure it was just going to be glandular fever, and that even though they wanted a CT scan, the radiologists wouldn't until it was ruled out. As I went with splenic pain and elevated liver enzymes I asked why a CT scan (thinking he would say something about my spleen or liver) and he said, there's a possibility it could be lymphoma. But not to worry, I'm certain it will just be glandular fever. You can imagine when he rang me to say bloods had come back negative for glandular fever and to go in for a biopsy I was upset. Now I feel like I'm just stuck in limbo!

Thanks for listening to me rant xx

Limbo indeed! Isn't it just the worst when it's over a weekend too? Even more days of waiting. I hope you've managed to get out and/or do some thingsto take your mind off of it even for just a bit.

Let's hope your doctor calls tomorrow so you have an idea about what their next steps are.

If I were you I would write any questions you have down now whilst you have time to think about them. I've found the mix of emotions and being 'talked at' during doctor appointments makes me forget everything I've been thinking and feeling and meaning to ask prior and I end up walking away more confused. My consultant now knows to expect my little blue diary to come out at the beginning of every appointment now haha!

A few ideas about what to ask could include what tests they are looking to do next, possible other things this could be, and time scales. This info might atleast help you find some structure to things moving forward e.g. 'next scan is in 2 weeks... I will plan one nice thing a day/every few days to keep me looking to the short term future'. I dunno just an idea but it worked for me! 

These things are lengthy. From my GP suspecting lymphoma to being diagnosed it took me 4.5 months! Luckily lymphoma is a slower grower most of the time and if there are delays in diagnosis I've been told by many specialists this does not negatively impact prognosis much if at all.

Sending you best wishes and I hope that call goes well tomorrow.

Rose

Hi, Rose. Thanks again for replying, and for your kind words.

That's a really good idea. At the moment I feel that is the thing that is worrying me the most. I don't feel in control of what's happening or whether I'm coming or going! I've wrote down some questions as you suggested ready for when I get a phone call.

If you don't mind, I'd be really interested to hear your story, what symptoms you had and how you managed to get your diagnosis. My mil is currently going through cancer herself, so I feel I have very limited people I can talk to about this. I've just looked at your profile and can see you are only 26, I'm 29, so not much older. I'm sorry you're having to go through this at such a young age. X

So sorry to hear about MIL going through cancer at the moment, it's a nasty thing this cancer business :(

I completely understand though,m grandmother also had a rough time with cancer and so that made me hesitant to tell people about my investigations, it was only once I got my confirmed diagnosis did I really bite the bullet and discuss it at any length with family. Also until I was referred to clinic I hadn't even heard of lymphoma!

My story is a rather long and arduous one so I'll try and keep it as concise as possible!

In February/March I started developing a really bad pain in my right lower groin and abdomen area. It would almost always be at night and wake me up and keep me awake for hours despite taking cocodamol. I visited the A&E when it first started for fear of it being my appendix, and  they said it had all the symptoms of a ruptured ovarian cyst that would resolve. Unfortunately the pain got worse through to April when I visited my GP, and the pain was now radiating into my lower back. He said an ultrasound was required as a simple ovarian rupture should definitely not be persisting this long. 

Fast track to my ultrasound about a week later and the lady did not only scan my pelvis but also my entire abdomen- something which I am grateful she did now! The results were sent to my GP who sent me a message to come in urgently- cue panic of course. He said there were shadows on my spleen and some ever so slightly raised lymph nodes in the groin so he wanted to refer me to a lymphoma consultant for a review.

I met with the consultant two weeks later who examined me and reviewed my bloods. They tested for all kinds of things, including aids and HIV! and all my blood work was normal. To quote him 'i suspect no heamatological malignancy'. However because of the spleen he requested a CT scan as apparently my spleen was also slightly enlarged and he wanted to know why.

I had my CT scan about two weeks later, and then met him two weeks after that with the results.

He said the CT scan did show abnormal areas of cells and that there were also lymph nodes in my tummy and chest that were marginally above normal size.

After this he sent me for a PET scan - the one I said where they put radioactive glucose inside you and you light up like a Christmas tree where there's any cellular activity.

For reasons beyond my knowledge he had suggested I would be getting a lymph node biopsy at the same time however I was called and told I would now be getting a bone marrow biopsy instead - quite a shock.

So off I went, had this nasty bone marrow biopsy and had to wait 2 weeks for them to process this as they have to grow it in a lab or something.

Fast forward two more weeks and  I went back for these PET and marrow results, and by now I had assumed something had been located due to the fact they had changed from a tissue to a bone biopsy. So I went in on that day fully expecting to be told a diagnosis. Frustratingly - but also positively really, I shouldn't complain too much - no cells had been located in the marrow. This meant he then had to send me for the tissue biopsy i was originally going to have some 4 weeks prior. However at this meeting he did say that my PET showed a lot of activity and that they were expecting to get some cellular information from my lymph nodes, which is why when I went in for the biopsy the lady took from my groin, neck and armpit just to be sure - i appreciated that very much despite the jabbing at the time!

Though they suspected lymphoma at this point there's about 70 types and two categories, Hodgkin's and non Hodgkin's. How you treat it can vary hugely depending on what type it is so until they know what cells are involved treatment can't happen.

Two weeks later I came into clinic and was finally given my diagnosis, Hodgkin's lymphoma mixed cellularity stage 3AS (s for spleenic involvement apparently and A for the lack of other symptoms).

And then..the next week i started chemo ABVD - yeah that last part they managed to get up and running considerably faster! XD

Cor blimey sorry for the life story there. Hopefully this helps you figure out what tests they might be asking of you in the future.

As I said, all the specialists I've seen said the delay in diagnosing me hasn't negatively impacted my prognosis and it's more than likely I've had this for atleast a year if not longer.

That was a pit stop tour of my life the last 5 odd months, but feel free to ask anything in particular if you want.

Again, i hope that phonecall is useful tomorrow and don't be afraid to say you've got questions.

Best wishes,

Rose

Hope your chat with the GP went okay today.

Sending wishes

Rose

Hi, when I went for my biopsy and ultrasound, the doctor checked all round my neck where the glands were, he pointed out where the glands were. The rather large lump in my neck looked solid on screen and they took three biopsies from it. After he said to me not to worry as it prob a thyroid problem. 3 weeks later I got the call from the ENT specialist to say it was lymphoma. My bloods were all ok so the biopsy is the only way to tell what it is. After that I had ct scans etc. I had B symptoms of losing weight, no appetite, and itching skin on my head, night sweats and a little short of breath. You are young and that could be a good thing also if you have been not well it could be a reactive gland doing it’s job. I think they have a good idea what’s wrong but got it wrong with me. If you are still worried and it’s not going away, go back to your doctor. Worrying and not knowing is the worst feeling. 

Hi, Rose. Thanks for sharing your story with me. You've really been through the motions. I'm glad you finally have your diagnosis and treatment has begun. Hope the treatment is ok.

So I actually rang the GP in the morning as I still don't feel well. The doctor who I wanted to see, who has seen me at the hospital wasn't available, so I spoke to another. Thank god I did. She asked if I could come straight in.

She listened to me, comforted me when I got upset and empathised with me. She was surprised how I'd been left. She explained that they're still waiting on one result for glandular fever, so they've not ruled that out in its entirety. She also agreed that the fact I'm sore and achey around my chest and left side needs further investigation. She asked what the results were of my chest x-ray as she couldn't see them. I explained I hadn't had one and she sent me straight up to the hospital for one. She said how surprised she was I hadn't had one and to start there. She told me she would ring me at 8am Wednesday as blood results should be back then. However as I teach and it will be my first day back I'm thinking of changing to have the call when chn have gone and I can get home if I need.

So mixed really, still feel rubbish but I'm glad she listened to me and this x-ray could show something, if not to rule something else out.

X

It sounds like this doctor was one the ball and I'm so glad she got things moving with the chest x-ray.

I know it still feels like limbo but hopefully she sounds like she might be a bit more proactive in her approach and it's great she's said she will call you to discuss results.

Yeah I would see if you can get the call changed to a more convenient time if you need it to - there's no point having that extra worry if you can reschedule it to a better time in the day.

You're on the path to some answers - and hey it could still be glandular fever at this stage!

Thinking of you, sending best wishes

Rose

So glandular fever has now been ruled out. So I've had previous exposure to EBV but no glandular fever in the last 2 months. She didn't volunteer much information about x-ray just that lungs and heart looked fine, and no broken bones. She wants to order and pelvic abdominal CT scan. She's speaking to radiology and then will call with more information.

I asked what she thought it would be, she just said, we will get to the bottom of it.

Hmmmm, not sure what to think still. Hopefully CT scan shouldn't take too long to come through x