Some reassurance and advice please...

Taddyj · New User Joined: 12 Aug 2008 Posts: 2

Hello to all! I've stumbled across this forum while searching the net and read some of the posts. I'm a Mum to 4 young boys and my 2nd Son who is 6 has been ill now for 11 1/2 weeks. Basically he started with 3 bouts of vomiting, 2 days of a fever, then we all got gastro for 3 days and from then on he has had constant tummy pains. He has been having night sweats to the point where I have had to dry his hair and turn his pillow over, a rash which is starting to settle now, but it has been to itchy that he has scratched to the point of making himself bleed and he has recently started complaining of sore legs. He has had a numerous blood tests, all of which only showed a slightly raised ESR. His LDH was normal at 169. He has had 3 ultrasounds a CT scan and a colonoscopy and grastroscopy. The findings of all of this are that he has reactive nodular follicular lymphoid hyperplasia. They found this when they did the colonoscopy. They have not done a node biopsy. Before he got sick he weighed 18.2 kgs, he got down to 15.7 and has now managed to get back to 17kg. We have seen a Heam/Onco and he does not seem concerned and says it's viral as there is nothing in his bloods to say otherwise. He has quite a few mesenteric lymph nodes up to 1.8cm and also has a nice one behind his ear. I'm not asking if people think it may or may not be lymphoma because I know there is no way of knowing that. What I would like to know is can you have lymphoma without having a definite tumor of mass that would stand out on a CT. I'm not normally a neurotic parent, having 4 boys you learn pretty quick how tough kids are, and I don't stress and take them to the Dr for every little thing. This has just got me really worried. He has always been well and really never complains. Even when he broke his foot he barely said a word. I just dont know what to do? How much do you trust the Drs? Thank you for reading, a very stressed Mum!
Tanja

ChemoMan

Hello Tanja
I feel for you Tanja, the stress this is putting you under is awful. Try not to panic as there is nothing to panic about really. First off swollen nodes particularly in children are very common. Lymphoma in children is very rare as it becomes common in the 5th decade on. The scenario you painted sounds very much like swollen nodes due to infection, which is what your doctor is saying.
Answering your question is a little more difficult as there are more than 30 different types of lymphoma and they present in different ways. Swollen nodes are common in diffuse large B cell lymphomas, but even in these cases you can get extra nodal disease. Also glands which are deep in the body will not show on the surface and there presence is detected by secondary effects like pain, abdominal discomfort, etc.
Tanja try real hard to put your mind at rest. The doctor may just want to wait and see what happens to the nodes over time, don't be afraid of this because it is standard practice to "watch and wait" This is because as I said earlier, swollen nodes are common , lymphoma is not.
Try and look after yourself at this time Tanja as stress can cause all sorts of problems to your health. Follow the cues of your doctor, in other words if he is relaxed about this , you can relax as well Smile

Try and occupy yourself with something totally unconnected and stay away from medical sites on the internet while you are going through this. I found that the more you read when you are in an uncertain situation , the worse your stress becomes.
My thoughts are with you and your family Tanja, all the best and here's wishing it's all good
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

Taddyj · New User Joined: 12 Aug 2008 Posts: 2

Thank you ChemoMan. You are so right! I guess the main reason I am concerned is that we were first seeing a gastro specialist and just before the 3 ultrasound he had organised an appointment for a surgeon to do a node biopsy, but when the ultrasound showed that the nodes had not gotten any bigger over a 9 day period he decided not to refer my Son. I guess I don't understand why he would change his mind as it was only 9 days between ultrasounds. He was put on steriods which I was told should help settle them down but it didn't, he has now got new ones as well. We go back in 2 weeks for a review at the Heam/oncol so I guess for now we just wait and see. It's hard not to worry though when your little one is complaining every day of pain.
I'm very happy to read of your remission! Thank you again for the reply and I wish you all the best! From down under too! Melb!

ChemoMan

Hi again

The reason the doctor is relaxed is probably because he gave steroids to your son and nothing happened. If your son would have had lymphoma, the nodes would have shrunk with the steroids. prednisolone is one of the Chemo agents in R CHOP ( its the P in CHOP).
I know the waiting is terrible it almost drove me crazy. At the end of the day all you can do is wait and try and be kind to yourself. I'm glad to hear you are in OZ, as we are very good at treating cancers in this country, mainly because of the clinical team approach and the fact that you don't have to pay through the nose to get treatment. Count yourself lucky there Smile

Onya Tanja hang in there look after yourself and have faith in your medical team.

my thoughts are with you and your family
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

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