Just an update in case anyone comes across this post. I will keep updating, as I know this forum has helped me so much and its always good to hear the final outcome, either way. 

So, I called the hospital and I'm booked in for a chest x-ray in a few weeks. However, the ultrasound of my neck is going to be at least 16 weeks! So I have called a private hospital and I'm going to have my scan done there to speed things up. 

I checked my notes from the GP on my online records and the GP is concerned and put the referral through as URGENT. However, there is also a comment stating 'doesn't appear to meet the 2ww criteria.' So although this is a good sign that the GP hasn't put it through as the two week referral, during my appointment he was concerned and said he wanted it done urgently. So on the one hand I'm thinking I should just wait as the GP can't be that concerned, but on the other hand, there is no way I can wait 16 weeks with this worry. So the cost of the scan will be worth it, even if just to save me 16 weeks of worry and give me some answers. Apparently I'll get the scan results there and then. X 

Hi, I am also playing the waiting game for a swollen lymph node diagnoses. My lump is in the right side of my neck and has been present for around 6/7 moths but getting bigger.

I had a GP referral (non urgent) for an ultrasound which happened just over a week ago. The Dr took two biopsies and said that my results would be fastracked and the the hospital would be taking over my care. 

I have an appointment with the haematology consultant on the 24th and the wait is really starting to get me down. I'm trying to stay busy and distract myself but it's tricky at times.

Sending you strength and support xxx

Hi ladies,

sorry to hear about your lymph node woes.. Sal, Rose and I can all empathise! You don't need me to tell you that a) there are many benign causes of swollen nodes and b) though no one wants cancer, lymphoma is often very responsive to treatment. 

what I will say is that the mind can make everything worse. Hyper vigilance will have you noticing every little twinge, and anxiety will cause you to have symptoms that mimic the very things you're worrying about! Never underestimate the effect stress can have on your body.

step away from self-diagnosing. Push for testing and make sure the Dr's are taking you seriously. They are the only ones we should be paying attention to, not the false tales that our over cautious brains tell us! Do not prod your nodes as that makes them bigger. Limit it to twice a week and just to monitor progress. Once you go a few days without touching them, the urge to do so starts to pass and you'll notice your anxiety decrease- trust me!

I have recently started CBT for health anxiety. The symptoms I have had for the last 6 months may have been very real, but my mental response to them has shocked me. I have been a mess. You will see that despite Rose's diagnosis, she is able to keep things in proportion, stay motivated to get through her treatment and keep positive to live her best life. That is the definition of being resilient and having a mindset that will see you through difficulties. I am trying to aim for that- whatever may or may not be wrong with me, I'm aiming to have the best possible attitude to keep me mentally well. I can't keep living like im dying all the time :-( 

my ultrasound went well and the dr's aren't concerned about my nodes. I struggle with having no explanation and constantly worry they've missed something. The stress then continues a cycle of symptoms. It helps to recognise this but doesn't stop the cycle completely! When I was waiting for my US I found that throwing myself into distractions with 100% effort was good. I initially shunned away from family and friends but getting out there and being social did eventually help to divert my mind. 
 

keep talking ladies! It helps us all to have these chats. Sal and Rose have helped keep me sane xx

Hi all,

I'm so sorry to hear so many are struggling- it really is such a difficult time waiting for tests, results, consultations etc etc.

I don't know much about these things in a larger sense but, if it's any comfort to anyone, although my diagnosis came as huge shock it really isn't the worst thing in the world. I'm not suggesting for 1 second that it's OK to have Hodgkin's lymphoma but I am saying that I'm choosing to concentrate on a few facts:

My lymphoma is treatable, no matter what stage it is

I live in a place where diagnosis and treatment is possible 

My doctors are specialists and Google doesn't help me

If anyone ever wants to ask me any questions please do reach out.

This little thread has been a light during dark times and Danielle and Sally have been amazing support.

My children took the news as well as can be expected and tomorrow is the day I get my dates to start chemotherapy, my final grading and full biopsy report as well as cutting my hair short! I'm shattered but optimistic, scared but positive and all of that's OK with me!

Sending you all love and light xxx

I think that's such an amazing mind set to have. Thank you for sharing this with us Rose and good luck for your final results. Please let us know how you got on. Will be thinking of you.xx

If you don't mind me asking, how old are you and what symptoms did you have? Did you have more than one lump? I'm scared as I found another one yesterday on the other side of my neck. I didn't wake up sweating last night which was good though. I just hate the waiting game. It makes me feel so sick. 

Hope you're all doing ok xx

Hi! Thanks for thinking of me - all positive vibes gratefully received xxx

I'm 41 and in terms of symptoms the only thing I had was a swollen lymph node on the right hand side of my neck. It is rock hard and about 3cm. It continued to grow over a number of months which sent me to the GP. Funnily enough the GP referred me as a possible thyroid issue rather than any thing else. It was the doctor who performed the ultrasound who first spotted something that wasn't OK and took biopsies immediately. 

The only other symptom has been losing weight (which I'd attributed to grief) and tiredness (which I attributed to being a mum!)

I hope this helps a bit but if not please do ask me anything else.

Sending you strength and positivety xxx

Hi Rose, 

Hope you don't mind me messaging! I just wanted to say your positivity is truly amazing! I just know you are going to smash your treatment! 

Did you receive your final staging/ treatment plan?  Onwards and upwards from here!

I did want to ask how quickly your node grew/ was it a massive jump? I'm sure mine has gotten bigger over 7 months but not drastically. 

All the best, Chloe 

Hi Chloe, not at all! Thank you xx

It was a steady growth but it wasn't me that saw it really as I suppose you don't always notice these things yourself! It was my sister and my best friend who noticed the changes between gaps in seeing them who noticed it growing.

I did get my plan! Chemotherapy starts Monday for 2 months (ABVD) and after a clear PET scan I'll move on to radiotherapy for 2 weeks. Nothing compared to others but, in the words of my consultant, aggressive treatment for a shorter time span works best for my type of cancer.

I hope that helps but please shout up if not!

Xxxx

Best of luck for Monday, Rose. Will be thinking of you. Hope it all goes well. Thanks again for sharing everything. You're so helpful.xxx 

I have my scan at 8:30 tomorrow. Saw the consultant today who thinks they are reactive nodes. Scan will hopefully confirm this. Xx

Thanks for thinking of me xx

Good luck for your scan tomorrow. I have a new found love and respect for radiologists and radiographers! :grin: 

Thank you so much. Getting anxious tonight xx

I know it's a stressful. You could try your favourite film or box set this evening? Something comforting that you can half focus on while you try to relax?

And a nice warm drink always helps me xxx

I know it's a stressful. You could try your favourite film or box set this evening? Something comforting that you can half focus on while you try to relax?

And a nice warm drink always helps me xxx

Thank you for being so kind and thoughtful, Rose. I really do appreciate you taking the time to reply. Decided to watch The Apprentice tonight ️ Xx

Hi All

Quick history - all my life I've had tonsillitis twice a year. The doctor refused to take them out when I was a kid and told my mother they were doing what they were designed to do and would save me from other illnesses. 
Fast Track to 2020, aged 50 and after the last bout of tonsillitis my glands don't go down like they used to. I just put it down to Covid anxiety and carry on - even letting friends touch them as a party piece!! In spring 2021 my doctor rushed me in for a CT scan as she feared a blood clot after the Covid vaccine (all clear). When I went back to see her afterwards she just asked if there was anything else worrying me and I mentioned the lump in my neck. Within 4 days I had the camera investigation, then an ultrasound and needle biopsy on what was actually 2 large lumps, and then nothing for over 3 weeks until a phone call telling me I had an appointment 3 days later. After that it was a whirlwind of scans, blood tests and biopsies,  after which I was told I had Stage 2 cancer in the base of my tonsil (under tongue) and in 2 lymph glands. Surgery not an option so within 3 weeks I went into 7 weeks of daily radio + 2 blasts of chemo. I finished formal treatment at the end of October and now it's doing what it needs to do in my body until the end of February. 

My Oncologist told me she was confident of a cure but there would be side effects of treatment. As it stands the worst side effects have been loss of taste and inability to eat/drink certain foods due to low saliva levels. I am also experiencing slight lymphedema swelling in my neck which I need to manage by massage, diet and exercise. Overall I've been nothing but blown away by how clued up the specialists are on all things throat and lymph related and that has been very reassuring.  If your results show that you need their help, then I can assure you that you will be in safe hands.  

I know I'm very lucky that the medical teams involved with my case were super efficient, and if I'm honest I haven't really had the time to think about everything - until now. The worry I am going through now is for the end of treatment PET scan. Only then will I know if it worked. 
I'm obviously not sharing this worry with the family who have already been through enough. 

I am naturally quite control freaky, but made the decision at the outset that I had to step back and trust the specialists - and keep away from Dr Google. My exact words to the Oncolgist were that I would give her 80% of myself to complete the science bit, but the last 20% I would reserve for myself to fight along the way. She corrected me by saying that the numbers needed to be reversed, and in fact 80% of my recovery chances were down to me, my determination and how I looked after my physical & mental health. 

It's been hard at times because the anxiety tried to sneak in, but I would put some music on and have a boogie, go for a walk or something else that made me happy, and that seemed to help push it backwards.  

In all honesty the anxiety will never go away, whether it be the testing, treatment or recovery phases, but it can be managed so it doesn't take over your life. The most important bit to remember is that you are still YOU. Whilst you are Patient Ref X to the medical teams, it doesn't take anything away from the person you have always been. Try and enjoy the usual things as much as you can, and this might help alleviate the anxiety a bit. 

Best of luck to everyone in their tests and treatment. Trust the science, but most importantly have faith in yourself and your strength to beat whatever is put in front of you. You will be amazed at how strong you really are and it will genuinely change your life. 

xx  

Hiya, just wanted to see how your ultrasound went? Hope it has reassured you? Xx

Thanks so much for sharing your story. It's so helpful to hear from people who have lived experience to know that the worst case scenario in your head is something you can and will actually cope with. Our fears about what 'could' be are often worse than the reality. Of course no one wants cancer and I'm be no means saying that everything is fine after diagnosis, but our anxiety about 'what might be' doesn't always match with the reality. 
I think waiting for tests and results seems to be the bit that everyone struggles with! Definately a gap in the market for some sort of self help book or podcast! 
It's also lovely to hear from people like yourself and Rose about how to keep a positive mindset. Your Dr was right, it's more than half the battle. 
I wish you every success and hope for a clear PET scan for you. Xxx