Lymphoma

[Loopyloo43]

Hi I was told today ihe lump in my tum was lymphoma what happens now will the dr refer me or not how will I know what type or what’s causing everything is so vague with this and played down so not sure what am supposed to expect any advice thankyou !

[Shar0n Volunteer]

Hi Loopylou43.

I have follicular lymphoma, diagnosed in 2014 after a lump was removed from my neck and biopsied. It is an indolent or slow growing lymphoma which does not always require immediate treatment. I have not yet had to have treatment and attend an oncologist 3-4 times a year for check ups.

So, the first thing you need to ask is what kind of lymphoma do you have and whether it is indolent or more aggressive. An aggressive or fast growing lymphoma would require more immediate treatment.

Your doctor may order blood tests and a scan to get a better picture of what's going on. Also, if you have any extra or 'b' symptoms (e.g. night sweats), that would be a factor in treatment decisions.

Many people on this forum are living full lives with a lymphoma diagnosis - some have had treatment and some, like me, are on "watch and wait", being monitored for any changes in our condition. Here is a link to a page that explains the different types of non-Hodgkins lymphoma :

verywellhealth.com/types-of...

[Russ70]

Follicular here too. I have had a couple of visits with the doctor and I have no symptoms, so I am on watch and wait. Have changed my diet a small bit with veggies and fruit but not too much. Biopsy is usually the first step.

[Lizard28]

Hi, I have lymphoma and I'm half way through my chemo treatment, I would think your doctor would have to refer you to a Hemotologist next. They will have to do a biopsy to determine which kind of lymphoma you have. Once they have results of that they will tell you what grade it is. Your ct scan will tell them what stage it is at. Please get in touch with me if you require any more info. I also have MCTD and I honestly thought my symtoms were related to that, it's quite a shock to hear you have lymphoma, but as others replied a lot of people go on watch and wait but I think I waited too long thinking it was an auto immune problem. Take care loopyloo.

[Loopyloo43 in reply to Lizard28]

If this is so serious why do I get the impression from the radiologist and my gp it’ nothing to worry about and was told it’s quite common . I quite puzzled by this. I went to my gp about a week ago telling him I feel quite ill so he said then if your blood come back fine we will look at reducing some meds but don’t for one minute think it’s my meds at all ??

[Felix_2010 in reply to Loopyloo43]

I think they don't want you to panic, and honestly, I'm with them, please be reassured that Lymphomas can be treated and you will likely be fine 😊. I too had a lump on my tummy, and was initially told it was a cyst. I wasn't convinced so I pushed to have it removed. I was called back two days later and was told it was Lymphoma. I had a CT scan the next day and was so scared, I really thought I was going to die. I saw the Haematologist three days later and was told I have Extra Nodal Marginal Zone Lymphoma. This is indolent (low grade) and slow growing and often doesn't need treatment. Because I had quite a few areas affected I had a course of chemo, R-CVP. Again, very scary but it wasn't as bad as I expected it to be. I wasn't cured, because it's hard to get rid of an indolent Lymphoma, but two years later I'm well and with regular check ups I know I'm going to be fine. My Haematologist told me it's the easiest cancer to treat. I would suggest that you read up as much as you can before you see your consultant and write down any questions. Good luck xxx

[Andilynn]

Sorry to hear this Loopyloo. I started off with a mass in my abdomen too, which was a football sized spleen. I was treated for splenic marginal zone lymphoma and I’m in remission. I will keep healing thoughts going for you. Please keep us posted and know that we are here for you.

[Lizard28]

Hi, I'd go back to your doctor, it may be common for them but it's not for us who have it. I had been seeing my doctor for over a year with stomach problems, my rheumy doc referred me to a gastro doc a year ago and I have been for all his tests and one year on I have finally got another appointment on Saturday with him so I hope I get a favourable result. On a positive note, I'm having RCVP chemo, I was diagnosed the nodal marginal zone B lymphoma which is a rare form of lymphoma. I am doing ok on the treatment, half way there, stay positive Loopyloo, I would honestly wait for Hemotologist to tell you what you have, your doctor has no positive proof of this diagnosis unless they saw cancer on your ct scan but they do need the biopsy to say what kind of lymphoma you have. Fingers crossed he is wrong x

[Russ70]

Yes i agree with waiting to see the hematologist as well. My doctor thought the lump in my groin was a hernia (obviously it wasnt, thats why i asked to see another doctor in a hospital). Good luck

[Onedayatatime2]

Loopyloo, waiting is difficult and nerve wracking but energy spent on worry is wasted. It took doctors at 3 different hospitals 9 weeks of fever of unknown origin and WBC/bilirubin numbers horribly high to diagnose his Non Hodgkin Lymphoma and when they finally did they originally told us it was Hodgkin Lymphoma. They can’t tell you much without biopsy and full radiology results/report. 15 months after diagnosis my husband is in remission.

Use the time of unknowns to focus on positive things, relationships and activities that encourage and lift you up. Surround yourself with people who you can count on to stand in the gap and hold you up when you get your results and know you are not alone because we’ve all been there and will continue to be here.

Don’t lose hope, there are many avenues for treatment.