Worried about Lymphoma - advice needed

Apologies if this sounds at all ridiculous or overly anxious, I just feel that this may the best place to ask for advice concerning recent health worries. 

Over two months ago I noticed a slight dull pain in my chest, which gradually got worse and predominantly stayed on the left hand side and travelled into my left arm, causing numbness and muscle aches. Understandably, I was sent to A&E on two occasions by my GP for this pain where blood tests, ECG and chest X-Ray almost completely ruled out any cardiac issues. Alongside this pain, I am somebody who frequently suffers with fatigue and occasionally shortness of breath. I have also had night sweats on several occasions (drenching) but they have occurred less frequently over the last few years. I usually assume they occur when I’m feeling unwell or anxious, ajough sometimes they just occur without any reason.

I’ve found during this time my symptoms gradually got worse, with my GP not seeming concerned as they primarily wanted to rule out any heart related issues. Despite this, the chest pain has become much more frequent (sharp/stabbing pain or dull ache) and can occur down the left ribs and towards the armpit too. Within the last two weeks, I have also began to feel sharp pains in my flank on both sides and my joints have become particularly painful (namely knees and elbows). After once again visiting my GP, they put it down to something ‘viral’ that could have lasted for almost three months, or an illness such as costochondritis or fibromyalgia. I’ve been prescribed naproxen for the pain which hasn’t really helped... 

Now, the almost three month episode of ill health has left me feeling both mentally and physically exhausted and unfortunately quality of life has dropped dramatically. Wanting to try and find more information on my pain did sadly lead me to Doctor Google, which brought Lymphoma to my attention. The chest pain, night sweats, unintentional weight loss, fatigue etc. being what greatly worry me. I have also developed a slight rash on my chest and abdomen in the past two days, although it doesn’t itch. When I raised the big C concern to my GP, she said based on my bloods (good lymphocyte levels) and X Ray being clear that she “didn’t think it is lymphoma”. 

Rather than to feel comforted by this, I have opted to fork out for a private ultrasound tomorrow or my abdomen and kidneys (where recent pain has been), and will look if the clinic is able to offer an ultrasound of the chest area. This may be a foolish act of anxiety on my part, but I just felt at best it’ll be able to put my mind at ease if things look clear (at which point I can look into alternative causes for my recent ill health to hopefully find a remedy, as the pain is becoming particularly unbearable).

Apologies that this went on a bit, I just have a few questions for those of you that may have more first hand experience at being in my position

• Are my symptoms anything that should be taken more seriously? My GP seems to think viral... but says so without certainty or much explaination. 

• Are the bloods and x-Ray at all an indication for lymphoma? In my reading I’ve seen that both are not accurate, which is why I’m surprised my GP is relying on those for clear indicators.

• Is there anything I can ask at the ultrasound that could help to see if lymphoma is causing my issues? Or would the nodes even be visible on a chest/abdominal ultrasound?.

thank you to anyone in advance for this, and sorry if my worries seem exaggerated! 

  • Hi [@JPH1997]‍ 

     

    So sorry you've been going through so much pain recently. It sounds like you're you're in a horrible situation. I can sympathize as I had horrendous pains from February through til August/September in my right groin and pelvis and lower back that just seemed to get worse.

    I would definitely push for more investigation if the pain seems to be getting worse. While it may well be a viral thing, the fact it seems to be lingering really should be something where the cause needs identifyinf specifically. Your quality of life is only going to suffer if the pain can't be kept under control and managed and a treatment found for it, so it's in your best interest to get it seen.

    It's a shame you've had to pay out for an ultrasound but I understand where you're coming from, and the desire for more certainty when your gp can't give you it.

    My lymphoma was first picked up on by ultrasound. I was having it done of my groin and abdomen because of the agony I was in, they thought it might be a kidney issue or a ruptured ovarian cyst or something. When they did the ultrasound they saw shadowing on my spleen and a load of enlarged lymph nodes which is one of the main indicators of lymphoma. Of course, after that was identified they had to do lots of other scans and tests to diagnose me, as they can't diagnose by ultrasound alone.

    As for bloods, my bloods came back normal even for my referral to the heamatology department, and the lymphoma specialist himself said he doubted heamatological malignancy but there we go!

    I don't say any of this to scare you, I'm just being open and honest about my own experience. That by no means makes yours the same!

    Chest and abdomen nodes will definitely be visible on an ultrasound, it's where mine were first picked up. Might also be worth them scanning the spleen and liver area as these are on the left side and can be affected by lymphoma - also other diseases and problems too so would be interesting if they can spot anything there.

     

    Your worries are definitely not exaggerated or silly, I totally get where you're coming from. After all you want answers!

    I hope the ultrasound goes well but that you are able to take the next steps regardless of the ultrasound results. If necessary ask for a second opinion from another gp and write your concerns down prior to your appointment so you don't forget to mention anything. I'd also start keeping a symptom diary.

    Sending best wishes

    If you need a chat feel free to @ me and I'll do my best to help.

    Rose

     

     

  • Hi Rose, thanks so much for your reply! 

    Your honesty is greatly appreciated and don’t fear that in any way it scares me. Whilst I know those in my personal life are trying to be supportive to me in this time, it’s greatly frustrating when they try to blame pulled muscles or lack of eating for this widespread pain.

    It is comforting knowing that the ultrasound does seem to be what could point me in the right direction (albeit scary should it suggest major health problems).  

    Hopefully I’m able to update with some results in the coming days, and be closer to sorting whatever has been causing such discomfort for the last few months! I’ll also be sure to start keeping a symptoms diary, as it’s been frustrating having to go through months worth of changes to each doctor I see from memory.

    All the best to you and hope you are doing well,

    - J

  • [@JPH1997]‍ 

    Hope all went well with your ultrasound, I don't know how private appointments work so I don't know what info you'll have been given there but I hope you get results swiftly. The waiting part is never very fun!

    All the best

    Rose

  • Hi Rose,

    So thankfully the ultrasound did seem to go well, as the report noted that liver, kidneys and spleen all looked fine. However, since the report my condition has worsened in that I’ve developed quite bad migraines, abdominal pain (just below the sternum) and night sweats have become more intense. After being assured by the doctors that I was likely fine, a more detailed blood test was performed which I just received the results of. My liver levels were slightly abnormal but they believe it’s too mild to be or any concern (and likely genetic), and that my CRP levels were also raised. Of course the worry here is that I’ve heard from a few individuals that often high CRP levels are often the only blood indicator of something such as lymphoma. The new GP I saw today admitted that with the symptoms and continued weight loss that she wanted to do tests for lymphoma alongside heart scans and other blood tests. 

    I’m a little confused as it seems the first ‘lymphoma test’ I’m going for is another blood test that’s more specific... as I keep hearing/reading that the only sure way to get a clear indicator would be a CT scan.

    I’m likely going up to the hospital today to have these tests done, and I’ll continue to try and update. Hopefully with positive news eventually!

    - J

  • Hiya [@JPH1997]‍ 

    I'm glad your ultrasound seemed okay, however I think the doctor is probably doing the right thing by referring you if a few things just seem a little 'off'.

    As for the bloods it might have been all sorts, when I was referred they tested me for all kinds of blood problems including STDs, hiv, glandular fever contact history and lord knows what else. Just to cover all bases. I think they also test for lymphocytes count? 

    I guess you've have the tests done by now so I hope you have a bit more clarity around what they were testing and hope someone explained the next steps and gave you a sort of overview summary of what it entails.

    I wouldn't be surprised if you're also asked to get a CT scan done at some point soonish so they can see what's going on with your lymphatic system. They put a dye in and take a scan - takes about 30 seconds! They dye makes you feel warm but only lasts about 15 seconds.

    Hope you're doing okay though,

    Sending wishes

    Rose