Sorry to jump on, also sorry to here about both of your recent diagnosis.. 

I have the same symptoms, only had them alot longer but have been fighting so hard for tests,(kept putting it down to my hypothyroidism even tho my levels are managed) I had a USS in August but the Dr didn't check all my lumps (I know now since my 2nd USS) my lumps all grew my specialist told me he'd see me in 6 months time in December didn't even look at any of the lumps I was concerned about, so I returned to my gp after Christmas, had my 2nd USS on 10th feb, he is concerned about a lump on my left by my collar bone, I was then put on a 2WW for a CT scan which hasn't happened yet, ENT or GP cannot tell me why but it seems it was declined. ENT have put me through for another CT and a biopsy. The biopsy isn't untill 6th March though and that was my ENT Dr fighting for it to be moved from the 18th March. I feel so let down so far by them.

Again like yourselves don't smoke, drink and not a unhealthy person. 

Rambling abit but the question I have is where your lumps painful? 

The whole of the left side of my neck is really painfull today, I believe the lumps have gotten worse since my last USS. 

Don’t apologise at all :)

I'm so sorry to hear your story. That sound so stressful and the fact that it’s been going on this long can only make your ‘scanxiety’ even more worrying.

I don’t understand why people in the NHS are so incompetent. I’m waiting for a PET scan, as I can’t start treatment or even see haematology until I have it done, and the registrar from ENT, who promised me she would check the referrals, hadn’t even made the referral in the first place so everything will be delayed. It’s only by 9 days but that’s still not good enough. I’m sure you are doing this but I’ve learnt I need to be a polite nuisance in order to get things moving.

In terms of pain, there’s no pain with my lump. I have several lipomas on my tummy and they feel more painful when I push and prod them.

Please keep us updated and don’t be afraid to push for the tests and scans you need to rule anything out. I’m keeping everything crossed for you.

Don’t apologise at all :)

I'm so sorry to hear your story. That sound so stressful and the fact that it’s been going on this long can only make your ‘scanxiety’ even more worrying.

I don’t understand why people in the NHS are so incompetent. I’m waiting for a PET scan, as I can’t start treatment or even see haematology until I have it done, and the registrar from ENT, who promised me she would check the referrals, hadn’t even made the referral in the first place so everything will be delayed. It’s only by 9 days but that’s still not good enough. I’m sure you are doing this but I’ve learnt I need to be a polite nuisance in order to get things moving.

In terms of pain, there’s no pain with my lump. I have several lipomas on my tummy and they feel more painful when I push and prod them.

Please keep us updated and don’t be afraid to push for the tests and scans you need to rule anything out. I’m keeping everything crossed for you.

9 days means you could have started treatment 9 days earlier! Finished treatment 9 days earlier. Every day counts when your waiting for tests! Just horrendous at the moment. 

I was diagnosed with cervical cancer in June last year, honestly couldnt fault the treatment id receievd from them then, just had the all clear from my first smear since, now this. 

It might just be pressure pain because my neck is currently huge with these lumps. 

I hope you get your pet scan soon and can get treatment started! I think the waiting makes everything so much worse!

Thankyou for the reply 

Sorry to hear of your problems Laur12. Have no fear, you are not alone, as I have discovered on the cancer chat forum. 

My latest personal update is that I have had the PET Scan, which showed I am Hodgkins Lymphoma stage 4. Today I had a Lung/respiratory test (needed for Chemo information), Monday I have Echocardiogram (needed for Chemo information), then Wednesday upcoming meet with consultant 9.00am and the same day, first of Chemo starts. Will be 24 weeks in total. Very upset, but will look forward to early downsize of neck lump and eternal scratching elimination............

My Biopsy was fine needle 3 samples taken at neck/collarbone site. It is quite painless as there is local anaesthetic given.

The worst so far was the PET Scan as you have to keep quite still for 30 minutes, and I so desperately wanted to scratch all over.....

My experience of the NHS has been really excellent and I am sad to read that you are both experiencing delays.

I just have to knuckle down now and prep my mind for the onslaught. 

Please take care of yourselves, and I hope your outcomes are good-to-perfect.

Hi Laur12, I just wanted to see how you were getting on? I finally had all my results last week and I do have DLBCL and it's stage 1. I start treatment this Wednesday (R-CHOP, 6 cycles). I hope everything has been progressing better for you.

Hey, 

So glad you got your results and can finally move onto treatment!

I was also diagnosed with DLBCL a week ago today stage 2. I ended up being admitted to hospital before being diagnosed which sped things up, I had my first round of chemo (r-chop) on Thursday last week as an inpatient and got home yesterday.

Treatment was very long due to having to have the one lot of meds slowly. I didn't have any reactions. Everyone is different but hopefully will be the same with you. I'm currently day 5 so hibernating as I don't want to risk ending up back in hospital.

Let me know if you have any worries/questions about the unknown as my treatment is roughly a week ahead of yours. 

We will both be fine! Take care. 

Hey, I just wanted to check in and see how you’re doing? I had my third cycle last Wednesday and am beginning to feel more “normal”. After my first cycle, the lump completely went and so my consultant said they’ll skip the mid-treatment scan and wait until the “final” scan once treatment has finished. That should be in August. Anyway, I hope you’re doing ok and you’re getting to enjoy the weather - even though we are now vampire-like with our tolerance of the sun.

Hey, I had my 3rd cycle last week also(had to take a weeks break as my bloods wasn't right)

I know what you mean this time around I feel more 'normal' too, our bodies must be getting use to the medication. They also staged me wrong and I found out I'm actually stage 4 (due to thyroid involvement) I'm waiting for the results of my mid treatment ct. 

Very reassuring that your lump has completely gone! glad your feeling more normal, hopefully it continues! All the best! 

I’m sorry to hear that they staged you wrong ️ do you mind if I ask how? The only reason I ask is my thyroid was showing as slightly inflamed in my PET scan but they think it’s thyroiditis. I’m still waiting on my GP as this was first flagged up by the hospital in February. That must have been such a shock for you to go from stage 2 to 4.

Ps I’m keeping everything crossed for your CT scan results.

I think it was because they didn't get the full biopsy results back before telling me the diagnosis and shouldn't have told me a stage untill they had the full picture, unfortunately they did then I didn't find out untill I'd received a letter after having an outpatient appointment with my consultant. My thyroid/lumps in my neck where massively compromising my Airways so I think they where just rushing the diagnosis. 

Did they take a biopsy of your thyroid? 

Also try not to panic as they have told me that treatment will be the same if it was stage 2 or 4. If at all you are worried this situation has taught me sometimes you need to "nag" the GP/hospital to get answers. Trust your gut! 

Thankyou!