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Lymphoma starting in groin?

20 Oct 2019 14:33

About 12 weeks ago I noticed a lump in my left groin, it was rubbery and not very mobile. I went to the doctors who seemed concerned and told me to come back in 3 weeks if it had not gone. Unfortunately it didn't go so I went back and saw a different doctor, he measured the lump as 1.5/2cm in size and told me not worry as I am young (I have just turned 23). About 4 weeks ago I then noticed more lumps on my left groin, and multiple in my neck. Another trip to the doctors and this time he booked me in for an ultrasound as he was concerned, the older lumps now felt more firm and fixed. However this was over 3 weeks ago and I still haven't heard back for my ultrasound date and now more large lumps have popped up on the right side of my groin this time. I've had blood work done 3 times over the last 12 weeks and all was fine. I have very itchy skin and extreme lower back pain also. 

How long have people waited for an ultrasound? And how soon after would they do a biopsy?

Can lymphoma still be an option of blood work is fine? 

Can lymphnodes just swell for no reason? 

 

Any advice would be great, I live alone with my 1 year old son and I am going out of my mind with worry. 

Lymphoma starting in groin?

20 Oct 2019 16:27 in response to Worried515

So sorry you've been going through this.

Im sorry to hear about your pain. It sounds very similar to me when I had horrendous groin and low back pain. They originally put it down to a ruptured ovarian cyst but when that didn't heal my GP sent me for an ultrasound and they did my whole tummy. It was then they noticed my groin nodes were increased and also my spleen had shadowy areas. I was then referred to the lymphoma team who did my blood tests and a CT scan. My bloods came back fine but the CT showed my lymph nodes were raised all over so they did more investigations. Took them a while but they did a lymph node biopsy and it was only then that they diagnosed me with lymphoma, until that point theu weren't sure if it was.

So sorry you've been having these issues but please continue to see advice until the cause of your pains can be determined.

In answer to your questions ;

How long have people waited for an ultrasound? And how soon after would they do a biopsy?

For me I had my ultrasound, then got referred, then had a CT scan and a PET scan and then a bone marrow biopsy before they did a lymph node biopsy. So for me it was about 3 months. I've been told this isn't usually the norm in terms of length, but they usually will do atleast a CT scan after the ultrasound. Every medical team is different though and I have heard for other illnesses that they do the biopsy there and then with the ultrasound.

Can lymphoma still be an option of blood work is fine? 

It won't be the answer you want to hear but yes, in my case and the case of a few others I've spoken to our bloodwork indicated nothing about the lymphoma. 

Can lymphnodes just swell for no reason? 

Not usually no reason. But there's a whole host of other reasons why they would swell up including infections and viruses. When I was referred to the lymphoma team at first they tested me for all sorts, including blood disorders, STDs, issues with kidneys and glandular fever. Apparently if you've been exposed to glandular fever even once in your life it'll always show up on your bloodwork . Essentially there's a whole host of other reasons which they want to rule out.

 

My advice to you is keep persisting. I know it feels like a losing battle at times but until you know the root cause of why this is happening you're going to be going out your mind with worry and no knowing. It's every possibility it isn't cancer but regardless, if you know Something is up then don't let them dismiss you. I knew for a fact I wasn't well so pushed and pushed. Probably drove them mad but I can guarantee the docs who saw me at the start would be so surprised at my diagnosis of stage 3 lymphoma. Some shrugged me off just because of my age yet I've seen people younger than me with it so that just seems silly.

Wishing you all the best feel free to ask anything anytime

Kind regards

Rose

Lymphoma starting in groin?

20 Oct 2019 19:19 in response to Ross2991

Hey thank you so much for your reply, it really does mean a lot and I'm so sorry to hear about your diagnosis but hope treatment is going well. 

Thank you also for telling me your story as I feel comfort in knowing other people have gone through this worry too. The waiting is so hard and frustrating! 

My son has his jabs tomorrow so I'll take your advise and pester! I'll ask for another appointment tomorrow. I'm literally scared to touch my skin because every time I seem to I feel another lump and worry more. 

Can I ask if you had any other symptoms? The doctors keep asking me if I'm feeling tired or have any night sweats which i don't. Just wondered is this a good thing that I don't have other symptoms or can it still be a late staging without any symptoms at all? 

 

All the best 

 

Xxx

 

 

Lymphoma starting in groin?

20 Oct 2019 20:12 in response to Worried515

Hi 

 

i know now this has nothing to do with you asking for help or to answer your question I am young like you I am only 21 and I have a lump in my left groin and a couple of weeks before that I felt a lump under my jaw and I get really bad pain in my lower back as well and also get very itchy skin and I am scared about going to the doctors. 

And I wonder if it’s just my lymph nodes swelling or that and hope you get your results soon and fingers crossed everything is okayy for you 

i also take night sweats and fatigue symptoms 

 

Lymphoma starting in groin?

20 Oct 2019 20:34 in response to Crystal543

Hi! Thanks for replying and I'm sorry to hear what you are going through, sounds very similar to my situation! 

I'm no expert but from what I've been told by doctors/google/other people on forums there can be MANY reasons why your lymphnodes swell. However as my doctor said they need to rule out the worst first and go backwards from there. I suggest you go to the doctor as soon as possible, not because your symptoms are worrying but instead because it's a long process to find out what is causing the symptoms whether it's lymphoma or not. And until you find out the cause, these lumps are going to worry you until you find out that they are, hopefully, in fact nothing to worry about. 

Also, I suggest you be very direct with the doctors. When I first went to the doctors about my lumps I didnt tell them I had any other symptoms or how worried I was which I think made them less concerned than they should have been and that's why I've had to go back so many times. I did this because I was scared just like you, I just wanted them to tell me it was okay and send me away, which they did, however since then it's been getting worse and made me worry so much more. So I wouldn't wait! Ring up first thing tomorrow for an appointment. 

Lymphoma starting in groin?

20 Oct 2019 20:43 in response to Worried515

Hi 

worried 515 

i think I will phone up Tomorrow as I have very sore skin around it and the lump is starting to get a little darker and my thigh is quite sore and a bit swollen and I need to get it sorted as I have a lot going on and think I need to get it checked and I will update you tomorrow when I speak to the doctor and hopefully you get your results soon 

kind regaurds 

Lymphoma starting in groin?

20 Oct 2019 20:47 in response to Worried515

Night sweats lump on neck, feeling sick and so tired all the time then a lump appeared in neck, it's quite large!

Been told it's lymphoma, also got lymphs in diaphragm. I'm devastated, being 41 with 3 children. 

I'm positive as it's treatable. 

Keep onto your GP,x

Lymphoma starting in groin?

20 Oct 2019 21:09 in response to Crystal543

Definitely ring up tomorrow, when you've got a lot on, your mind can make you easily prioritise things that aren't that important purely because you are scared. But those things can wait, your health is the most important thing. If you leave it too late you will always regret it! If you act now then if it is bad news you will thank yourself by getting it sorted as soon as you could, if it's good news then theres nothing to worry about but you will still thank yourself and you can go about your busy life without a worry then x

Lymphoma starting in groin?

20 Oct 2019 21:12 in response to Emelia123

Sorry to hear about your diagnosis Emelia123, what a horrible situation to be in. That what is keeping me going and staying positive too, if it is the worst case scenario then it is still very treatable. Regardless, I will take your advice and keep hammering the doctors until my concerns get through to them quicker! Purely for my sons sake if nothing else! 

Lymphoma starting in groin?

21 Oct 2019 00:12 in response to Worried515

Hey there

My official diagnosis is stage 3AS

 

The A actually stands for no symptoms ; the typical symptoms people discuss e.g. fatigue and itching are called B symptoms. When someone is diagnosed through a biopsy but does not present the typical symptoms then they get A put on their diagnosis.

Whilst it's less common to have lymphoma without any symptoms it is something that does occur, and they have the grading system in place for it. 

It usually makes arguing your case much harder at the doctor's though as they expect to see B symptoms.

Good luck!

Rose

Lymphoma starting in groin?

21 Oct 2019 00:26 in response to Worried515

Sorry to hear about your illness.

I am still waiting for a true diagnosis i have been in alot of pain now 24/7 for 4 months.

In answer to your question.

I was given a letter by GP who referred me for an ultrasound and I had to phone up the hospital to book my ultrasound  appointment.  This took about one month.  The hospital then send a report back to your GP who requests a CT scan if needed to get clearer images.  This was booked and done within a few weeks.  The results go to your GP and take 10 working days.  Then a biopsy maybe requested depending on your results.  Apparently this is a long journey which does not help when you are experiencing so much pain.  See your GP and ask for stronger pain relief.  

Lymphoma starting in groin?

21 Oct 2019 00:54 in response to Lulu28

Completely sympathise with your issues of pain.

I hope they find a cause sooner rather than later so you can begin the road to recovery.

Best wishes

Rose

Lymphoma starting in groin?

21 Oct 2019 11:21 in response to Ross2991

Sorry to hear this but I'm glad they've found it and progress forward.

 

I'm 29. Had node from groin removed 12 days ago for biopsy following "suspicious features" noted on a needle biopsy. I too have had no symptoms but after a long two weeks should get results tomorrow- needless to say I'm a bag of nerves!!

 

 

Lymphoma starting in groin?

21 Oct 2019 12:38 in response to Lulu28

Hi Lulu28, sorry to hear about your situation. It seems a lot of us here are having the agony of a long diagnosis, how awful. I hope you are getting close to a diagnosis if you have not received one already, and hope it's all good news! I have requested another appointment and am going in at 2:30 where I hope they will at least tell me when my ultrasound will be as the lumps and symptoms are developing as I am waiting which really scares me. But thank you for your advice on the timings as it's made me at least just realise it will take a while and it's not just my doctors as I was considering moving doctors or going private.

 

best wishes 

x

Lymphoma starting in groin?

21 Oct 2019 12:40 in response to FionaL

Hi Fiona! I bet you are a bag of nerves I would be! Let's hope and pray it's all good news for you but just remember to stay positive in this journey no matter the outcome. Let us know how you get on.

X