Hiya, 

Im in a similar boat to you all. On Sunday noticed a large (golf ball sized) lump behind my collarbone, and subsequently found about 3 more smaller pea-sized lumps in the area. All are very hard, not sore and sligthly moveable/wiggle-able. No sore throat etc or any other signs of infection.

Went to the doctor on Tuesday, had bloods taken that day and was referred for 2WW. 

Got my letter today saying I've an appointment at the hospital ENT department on the 7th - does anyone have any idea what to expect from this appointment? Will they likely take a biopsy? I haven't had ultrasound etc done as the doc wanted me to be seen ASAP. I've also had itchy legs for the past month and occasional infrequent night sweats so I am quite worried it might be lymphoma. The next 10 days waiting is going to be extremely hard :( 

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

Hiya, welcome to this thread! It's easy to put two and two together and get five. Night sweats and itching are generic symptoms that can happen for dozens of common and legitimate reasons. Once you become worried about lymphoma, you undoubtedly notice these things whereas you wouldn't have given them a second thought. I know that has certainly been the case for me. That said, if you do have lymphoma, know that there are very effective treatments and you will cope. As others have said, our dr's and nurses are flipping amazing! I went to see an ENT consultant and he did an examination and ordered an ultrasound. That was it for that appt, waited two weeks to have my US. I believe they can take biopsies there and then if the nodes are over 1cm in diameter and/or they want to look at them further. If they're reactive glands, they will usually tell you straight away. 
Trust the process, push for tests and the care you think you deserve and if you've read this whole thread you will know you need to keep yourself distracted to keep the anxiety at bay! You can do this. And you can rant here anytime and one of us will be here to be your cheerleader. Keep us updated 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

Rose, I hope you recognise how much of a help sharing your journey has been to everyone on this thread. Even in the middle of a challenging period tou have taken the time to reassure others, I think you're remarkable. I'm so pleased the Dr's have put a robust plan in place and you have an end in sight!

I'm not sure if I've said this before, but when I was about 10 yrs old my dad was diagnosed with stage 4 non-hodgkins lymphoma. The treatment back then was very gruelling. His Dr's told him that they were 100% sure that his remission was down to his attitude. 30 years later, he is still living his best life and taking whatever is thrown at him on the chin. I'm working every day to be more like that! 

Anyway, I should probably come off this thread but I feel invested in how you and Sally are doing so I shall check in from time to time if that's OK, and will also happily take the chat to a private message if more appropriate. 
 

Much love, Danielle xxx
 

I completely echo what you have said Danzieee about Rose. You're so kind taking the time to reply to us all and offer us advice when you have such a lot going on yourself. I am very grateful to you and to everyone else for replying. I hope that your treatment goes welll.xx

My radiologist said this morning that he didn't see anything alarming so I am very relieved! 

Judgey, I really hope the time passes quickly for you and that you get some answers soon. The waiting is the worst. xx

Thank you for sharing your story, Liz and I wish you luck with your PET scan. Really hope you get good results.xx

Thanks both for your kind words of calm.

I got blood results today that were normal except elevated ESR. Has anyone else seen this in their results? I've requested the detailed results so I can see the actual values but from some reading it seems elevated ESR = an infection, immune disorder or lymphoma... So back to worrying

Hi all, sorry for the late response. You are all being incredibly strong under really difficult circumstances. Waiting is extraordinarily hard but just remember that, however you fill them, hours and minutes still pass. If you need to sit in silence, stomp around outside, eat biscuits, knit a scarf - whatever! - the same amount of time will pass between now and your results so be kind to yourselves. And, as I always tell my children, all worries seem bigger in the dark so either try and relax before bed or write your worries down and reasses them after you've rested.

You're all too kind with your compliments - we're a team and we'll get through it together.

xxx

Hi Judgey,

in case it's useful my husband is at a similar stage but slightly earlier. He got his initial appointment with the consultant quickly after an urgent GP referral, and was then referred by the consultant for "urgent" ultrasound and fine needle aspiration biopsy of the lump, which he said should be in one week or two at most. When we got the appointment it was a full month away, in mid Feb! It felt terrible to know we were going to have to wait so much longer than we should. Anyway I decided to let the consultant know so I sent him a postcard. A couple of days later we had a call asking my husband back to his clinic the next day. We went yesterday and the consultant did a biopsy then and there, without the ultrasound. The lump is quite large, and near the surface. We're expecting the result within a week.

Waiting times for scans are very long at the moment in many places apparently so you may want to ask how long you will have to wait, and whether you can have a biopsy without the scan. 

I believe my husband's blood test results were more or less normal, and he has no symptoms except the lump which appeared about three weeks ago.

Good luck.