Non-hodgkin's Lymphoma Support Group

Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...

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Terrified and not getting answers!

madzeejoyxx
madzeejoyxx

In 2008 I was diagnosed with Non-Hodgkins Lymphoma Stage 2 B cell and I went through treatment and luckily got through it and now In 2017 I have a lump in the same place that my last large lump was and its giving me all the same symptoms.



  • Enlarged lymph nodes

  • Fever

  • Sweating and chills

  • Night sweats

  • Weight loss

  • Fatigue (extreme tiredness)

  • Swollen abdomen (belly)

  • Feeling full after only a small amount of food

  • Chest pain or pressure

  • Shortness of breath or cough.


I have also been to the doctor and ended up changing practices as the doctor I first saw and bought up reoccurance, laughed at my face and basically disregarded everything.


I have now moved doctors and they still arent taking me very seriously, i get that "you've had treatment and its not common for it to come back" They try and use the arguments that my bloods arent showing huge spikes even though before getting diagnosed last time my blood work, and fine needle aspiration biopsies came back CLEAR!! it wasnt until my mother pushed them to remove the large egg sized lump behind my ear that they found it! my body hides alot! and my bloods are always going up and down showing immflamation and infection etc then going normal and then coming back. Now my last blood tests have come back with a High ESR level which I have read and talked to people who have also had a similar experience as me (clear tests) and they had their ESR come back high and then they were diagnosed again. I am tired of battling with the doctors when something wrong is going on I can feel it, I have a hard time getting through everyday. its been pain and issues and effects from chemo 10 years every single day and no one is taking me seriously or looking into it. 


i was hoping someone out there has had a similar expereience and can give me some advice and tell me their stories. Please. I sit up researching other peoples reoccurence stories and they all seem similar all tests come back clear and by the time the doctors listen and actually help they are in stages 3 and it is advanced. 


Thanks guys sorry for the long winded post!

YvetteK
YvetteK
I am so so sorry you are going through this. I had large B cell lymphoma 10 years ago also, and I still suffer the effects of the chemo today. I haven't had a reoccurrence, but something similar happened before I was first diagnosed. I was losing weight rapidly, I had horrible chest pains, had a hard time breathing, just problems all around. I kept complaining to my doctor for months, and he just kept saying that my chest muscles were tight and weren't loosening up. (He was a D.O. who actually did manipulation on me....so he was all about muscles). Finally, after months of complaining, a huge lump popped out of my neck. I went to see him, and he told me to go to the ER. After 8 hours in the ER they told me I had a tumor in my chest. I was so incredibly angry at my doctor.

From that point on, I realized that I had to be my own advocate. If one doctor won't listen to me, I'd switch doctors. I actually have twice. And I'd keep switching until someone listened to me. The LEAST your doctor could do is give you an x-ray.

Do not give up. Keep INSISTING for more tests. INSIST on x-rays. And if this doctor won't do it, find another one. And if that doctor doesn't do it, find another one. Time is of the essence, and you can't wait around for doctors who won't do anything until a lump pops out of your body. You're right, by that time, you could be a stage higher. So keep advocating, keep fighting. Only you can look after you!

Please keep us posted. I wish you the best of luck, and I do hope everything is ok.

Yvette
madzeejoyxx
madzeejoyxx
Thank you for leaving a reply Yvette I am so sorry to hear you experienced some horrible treatment from doctors as well, its unreal how many seem to just be in the profession just for money rather than helping people. I am heading to the doctor again on Friday this time I am bringing support (my parents haha 23 years old and still need my parents by my side) I am going to try push really hard for her to do more than just shrug at me and not do anything. I need to get in a scan and possibly look at getting this lump removed as they didnt find my last cancer until they removed the lump. I am done being shurgged off and ignored. I wont give up till I find someone who helps me.
Please let me know how you go! I wish all the best for you x <3

Maddie
YvetteK
YvetteK
I'm not making any kind of excuses for the doctors, but I think in my case, because I was only 30 years old when I was diagnoses, and you are so young at 23, cancer is not the first thing that pops into their mind. Again, that is not an excuse, especially since anyone at any age can get cancer. But I don't think they see it often.

Please let me know how your doctor's appointment goes. I will be on here to see how things are going with you.

Yvette
madzeejoyxx
madzeejoyxx
Hi there, I can understand why some may think because of my age cancer isnt the first thing that pops into doctors minds but I have had lymphoma before and had gone through treatment. As I said to my doctor at my appointment last week its not like I am a first timer random coming in saying "Test me for cancer I have this lump and these symptoms" Ive experienced this all once and I understand how to read and listen to my body and all the signs are the same as before and the type of cancer I have happens to be the type to possibly reoccur later in life. I went back to the doctor last week and now blood tests are coming back 5X the normal readings and my symptoms are getting worse and at 23 I had to bring my parents in with me once again to get anything done from her. Finally I am being referred to ENT ( which is where I was referred to last time and they were hopeless and found my cancer by accident after telling me for a year that all my lump was, was a cyst.) however I am happy I am finally being referred somewhere for once. she said something about me also being referred to get this lump removed as they didnt find my cancer the last time until they removed that one. Also she is going to talk to haematology regarding my test results and my history and see what they think the next steps should be. I am going to keep pushing this and fighting for more because something is not right within my body and I am sick of always having doctors tell me its nothing when they have been wrong so many times and caught stuff to the point where things are progressed more than they should have been. Just a lot of frustration here at my end. The lack of consideration I have experienced with so many different doctors is unbelievable. I have been in and out of hospital for half my life and I have only ever come across a handful of people who are in the job purely to help people. But fingers crossed this is all going to be resolved and things are going to get done! Im not giving up now! :)

Maddie
YvetteK
YvetteK
No, you can't give up now! I'm glad you brought your parents with you. And it's not about you needing your parents (but when you feel sick, who doesn't, right?) it's about having support. And if it takes the presence of other people to get your doctor off of her ass, then at least it worked.

I'm really sorry your blood work was not normal, but at least things are now moving, and things are going to start getting done quickly.

I am going to keep checking this post. If you need to talk...want to vent...anything...I'll be here.
madzeejoyxx
madzeejoyxx
Hey! progress! I fought and got the lump removed yesterday! I was sent to the ENT and the first doctor didnt even listen or anything he was so rude i couldn't believe it! So i asked politely for another doctor and I ended up getting his supervisor and top doctor where I am! he looked right at it and acknowledged my history and said yes we need to get it removed asap and Bam I got a phone call not too long after and yesterday I had it removed! Apart from the pain and stitches etc I am doing heaps better mentally! they want me to come back to see them regarding results in a week! I am so happy things are finally getting looked at more seriously! I will update with any news next week :)
YvetteK
YvetteK
That's great! And I'm so glad you asked to see someone else. Like I said, never settle, and you WILL find someone who will listen to you. I'm so happy you had it removed and are going back for results in a week.

Definitely let me know what the results are when you get them. I'm keeping you in my thoughts, hoping you get the best news possible!

Yvette
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