NHL Burkitt's... I am SOOOO scared...! :(

Mistakes by hospitals and doctors are relatively rare (I've ALWAYS been unlucky!), and if they say you are beating this and getting better, please believe them! If they took the surgical route, they did that because they were able to remove it all. You will only delay your complete recovery by worrying. So, promise me, (a) you're going to get better (b) you're not going to read anything else about me!! Just make sure that you live an extra healthy lifestyle from now on, look after yourself (and it looks like you have someone to do some great looking after you), AND STOP WORRYING. Order, OK? xxx Penny

hi celendriel, sorry to hear your news, but you will get better, your
young, you have all your life ahead of you, yes, it must be really
scarey, but talk to people and ask quistions, and most inportant
think posotive, there,s lots of lovely friends here that will be
rooting for you. keep us updated and fight the fight girl. xxxxx linda

it amazing how a day can change your life. And all those over used sayings you hear ... life is short enjoy each day , tomoorw is not promised... blah blah blah seem to be what is true for me righ now . I am not going to spend my time worried, yes I am concerned and will get all the information i can about my Uterian cancer I am having surgery on Monday and on one hand everything is happening so fast and on the other I feel like I am walking in slow motion. Last week i was surfing the Gap and Old Navy websites looking for cute outfits for my kids summer vacation,m now that is the last thing on my mind .
i AM IN A CHAT ROOM talking about MY CANCER ????!!!! Otside of my 3 prgnancies I have never been sick ( thank god) and I had nothing that pointed to this . I am going to get through this with all the things that God has promised me. It is so hard not to think of the worse but whenever negative thoughts come to mind I force my self to think of MY future in detail.. My 10 year old daughters high school graduation in 2016, the collage she will go to and I picture my husband and I taking her to her first day of classes. I think about our 3 year old son turning 16 and all the pretty girls tht will be chasing him. I don't know what your belief is but I will pray for you Linda. God is real and If you want him to he will se you through this. Be blessed

... But, yes, that scared me too. It was more based on gems249's experience with their cousin being told he had 1-3 months to live.. :s That was scary.
But I must say, so far I have seen alot more positive stories than negative, so that helps a little, and I guess I can't judge because, like the newsreader Nicholas Owen on the BBC said (he had kidney cancer) every cancer is individual, like we all are. We will all have different stages/types/responses, so what applies to one person may not apply to the next. I haven't got staging results yet, so I may have no need to panic yet anyway. And mine is a Burkitt's, and may be different from yours and gems's cousin's. If they whipped out the tumours tey found localised in my bowel, and if my CT scan shows no more tumours have formed, then I should have a good chance of shaking it even if it's in my bones.
They only removed them and were aware of it's existance thereafter because one intussucepted, and so that was the only symptoms I had shown. Besides the blockage in my bowel where one tumour had slipped into the intestine like an inside out sock (as opposed to a tumour blocking it out of sheer mass), I felt fine. Even when vomiting I still had the desire to eat, and I believe the only reason I lost weight was because they had me nil by mouth for a week and I had been throwing up. Even now (knock on wood!) I feel fine, speaking generally about my health.
I was only diagnosed after they removed and studied the tumours, but I guess they wouldn't be positive with me for no reason. I was told there are alot of positives in my case, so I should believe them. :)
Whatever happens, I won't take it lying down! I'm not going to let any of this take me over, and I WILL marry my fiancé and have a long and happy life, and I want to have children someday too (I will have to talk about the possibility of infertility with my chemo doc on wednesday, and ways I might be able to solve the problem provided I am safe to delay my treatment for a short while, etc... Something to discuss in full.) So I flatly REFUSE to die! I refused to die when my bowel was gangreneous in October through strangulated intussuception, I refused to die in childhood after contracted Scarlet Fever that went undiagnosed for ages (some quack said I had a heat rash!! Can you believe it?! :s ) and I refuse to let this dictate my future! Now, I don't want to be tempting fate here by saying all this, but I must trust the docs when they say it is curable and treatable! :)
And I must stop 'researching' on the internet! :p

That's wonderful - I'm sure you'll have that beautiful wedding and lots of beautiful children. It sounds like you have battled and won before and you will do it again. Yes, good idea not to surf randomly as you see scary stuff, and, as you say, everyone is individual. My 3-4 months was LAST May, and here I still am, debating whether to childishly ring them and stick my tongue out as they said, Most definitely NOT a year! Anyway, good luck with the rest of your diagnosis: you're going to win, and you're going to get your life back. lots of love, Penny

I found out in a letter that the doc found my liver and spleen to be enlarged... I don't know what this means now... It was the same day as I was told I had burkitt's, and he examined me before he told me all the positive stuff, but I found in the letter that I showed 'hepatosplenomegaly'... I'm scared again...

Long intimidating word just means enlarged liver and spleen. Did he mention Epstein-Barr Virus? Think that is one factor in Burkitt's. I think you should try (ha ha - I know it's difficult) to put it to the back of your mind until Tuesday (you are also suffering Acute Bank Holiday Syndrome, characterized by morbid fears overtaking you when gps surgery closed for three days), then ring up and talk to your doctor, and put your mind at rest. Don't forget that he did tell you "positive stuff"! xxx Penny

hey
i was diagnosed with burkitt's lymphoma in october last year and i am now in remission. i too had no symptoms of cancer all i had was a swelling on one side of my neck (they also found cancer on my chest, stomach and ovaries with no symptoms at all!!) i am suprised to find somebody on here with exactly the same thing as i was told it was so rare! don't worry about them catching it in time, i was at stage 4 when i was diagnosed, i had to start chemo straight away as it was that bad and you should see me now, i have been in remission for 6 months. just stay positive and don't let it get you down. the treatment i had was called codox-m and i-vac, i had two of each, i don't know if you will have the same or not but it was supposed to have been really intense chemo and i think the worst part of it was losing my hair haha. it does get to you a bit but i wasn't as sick as everyone made out i would be and half way through it i was sleeping most of the time so didn't know what was going on anyway. i hope i hear from you and let me know how you're getting on =] email me if you like nik_88@hotmail.co.uk

keep smiling x

Hi,
My best friend just got diagnosed with Burkitts. He is a healthy 35 year old male and like you had no symptoms. I read you are in remission, congratulations! Where did you receive treatment? Where is the best place to get information about Burkitts? Any advice?

Hi,
I read that you were diagnosed with Burkitts Lymphoma. My best friend just got dianosed with Burkitts this week. What type of treatment are you getting and where? Where is the best place to get information about Burkitts? I hope you are doing well. I appreciate any information you can give me.

I had my treatment at University College of London Hospital. Very happy with the care I received there. Would definitely recommend. They moved to a new building a few years ago but I presume the quality of care would hopefully remain the same.
More info can be found on http://www.cancersurvivors.org.uk There is a problem with about us page, but I am working on it. Happy to be contacted via email as well if can be of any help.

together we are stronger!

Hi there,
I had the same treatment as you did, but in 2000. So they are still using codox-m and i-vac. Interesting

Just some hope for you, I am in remission also from B-cell Burkitt Lymphoma going on 4 years actually!! But I had a lymph node in my armpit that swelled to the size of a golf ball within 2 weeks, it started out like a little pimple!! I was treated very well at the Hope Center in Terre Haute, Indiana & had doctors in Indianapolis at the the IU Cancer Pavallion to give me a second opinion. I was 25 years old at the time & was given 6 weeks to live if not treated immediately! I of course had the lymph node removed & started aggressive CHOP/Rituxin treatments. I had a total of 13 treatments & one spinal Chemo. injected. I did have a few other swollen lymph nodes removed but they were fine, Thank GOD. Other than a few side effects from the aggressive treatments, I have been doing great!! I did lose my hair & lost quite a bit of weight but come on I AM ALIVE TODAY!!!! My doctors see me every 3 months now for a routine CT and I get routine blood work done. I no longer have my port, they removed it 2 years after I was declared in remission. My doctor & I choose to wait 2 years before removing it just in case I may have a relapse & putting it back in would suck. But don't let things worry you to much because I was given 6 weeks to live if I choose not to do the treatments and since I put them on my #1 list of things to do, I am still glad to say I AM in remission!

Just make sure you ask your doctor as many questions as it takes until you have seeked all the anwsers you have to any questions it may be, even if you think its a stupid question, ask anyways, it will only make you feel better by knowing. I also did a lot of researching on the internet to find info. One helpful site was www.lymphoma.org or Cancerbackup, just do a search for Burkitts or Lymphoma. If you need that second opinion from another doctor, then get it!!! I did and it made me feel like I could trust my doctor with my life, which I left my survivoral up to him and knowing that it just feels right is another way to make you feel at ease.

I hope you get everything you need & that I pray for you to have a speedy recovery with your cancer!! I wish you all the best and a life of NO CANCER! If you have any questions at all just ask, I will do my best at giving you whatever info. you may need!

Good Luck & Best Wishes, April