Exhausted and terrified

emitz · New User Joined: 25 Sep 2009 Posts: 2

Hi All,

I've been reading these boards for the past few weeks and have finally plucked the courage to write. I have to get this off my chest!!

I am a 25 y/old male living in the Midlands in the UK.

I'm not going to bore you with my full story - to be honest just thinking about the last 3 months tires me out.

Here is some of it.

I have been to the doctors a total of 12 times (I have tried 4 different NHS doctors and 1 private doc) all of them tell me I am a healthy young lad, well... I cannot believe it.

It started with a sore throat that just didn't leave (I still have it 3 months later) After much effort (pushing the system for a ENT referral) I am told by the ENT that the sore throat is from acid reflux. My blood work has come back 3 times perfect - I don’t have anything including mono / glandular fever and I've done the full vat of STD test just for good measure.
My lymph’s however have just been popping up one after the next.
I have now had generalised Lymphedonopathy for the past 6 weeks - how is that healthy.
I have swollen lymph’s on both sides of my neck - 2 each side ( hard and stuck to the neck 1cm + each) and both sides of my groin ( multiple - hard stuck to the groin and they seem to be getting fused together on the left 2cm+ - sorry to be so descriptive). I have researched everything I can on the matter and there is now very little chance it is from any other cause - I must have Lymphoma.
Due to my lack of B symptoms and the fact that these lymph’s are everywhere - it seems it could be follicular lymphoma - It's progressions hasn’t been on consecutive nodes as with Hodgkin’s my armpits are still clear.

Anyway, yesterday, I finally convinced my doc to refer me to a haematologist and his words where " we shall have to see if he will see you otherwise we will just have to accept it if he does not" what part of PERSISTENT GENERALISED LYMPHADENOPATHY did he not understand. The blood tests show I have no infection bacterial of viral and my throat is clearly not linked - I am now completely exhausted. I will wait until the referral letter comes back and it I haven’t got an appointment I shall have to try private (which I don’t have the money for) - all I want is a biopsy.

My biggest fear is not getting the attention and medical care I need now before it’s to late, if it is cancer it is definitely stage III.

Aisha - I completely second your post - the British doctors just don’t care. The Guidelines here are that is you have a single persistent swollen lymph for 6 weeks or more that is unexplained you should be referred - this clearly is not being followed.

This (cancer) has consumed my thoughts for the past weeks, I am an utter mess and don’t know how I’m going to get through this……

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Hi emitz.

Sorry you had to find your way here. My two pence worth:

1. Don't try and diagnose yourself. I know how tempting that can be, and over the past year I have had various ailments. Thanks to the wonder of Google, I have a perfect record...I have _never_ accurately predicted what was actually wrong with me! (search back through all of my posts if you need proof)

2. There are an huge amount of causes for enlarged lymph nodes, and cancer is one of the rare ones. Look back on the history of this board, and you'll see that among the undiagnosed people, even the ones that were _sure_ they had cancer, only about 2% of them reported being diagnosed as such.

3. There is debate on whether worry or stress can actually cause disease, but no debate at all on the fact that it can make you feel worse. From what I've read, you have a persistent sore throat and some enlarged, painless lymph nodes. By all means you should keep trying to pursue an answer to your symptoms, but there is no need for it to dominate your life in the meantime. Make the phone calls and yell at the people you need to yell at, but when that is done, find something to occupy your mind away from thinking about these symptoms over and over again. After all, even if this is follicular lymphoma as you suspect, very often the prescription for the early years of that is...watch and wait! Then you would just have to learn to live with it anyway, so now is as good a time as any to practice doing that.

4. Of course, getting a diagnosis is important, but if it is lymphoma, then there is always hope. We have a guy on this board who was diagnosed with Stage 4B non-Hodgkins lymphoma while in a coma, and several months later he is now in complete remission. So, even in the 1 in 50 chance that you have cancer, there's no need to worry that every waking moment without a diagnosis is a wasted moment.

5. And finally, there are two rules you need to abide by on this board. Rule number one, don't panic. And rule number two, don't forget rule number one!

There are others here who can help you with the specifics of pushing around the UK medical system. I just want to wish you luck with getting to the bottom of this, as I'm sure you will, and I hope that your assumption proves to be unjustified. Please keep in touch with your progress, we'll always be with you! Smile

_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

emitz · New User Joined: 25 Sep 2009 Posts: 2

Hi Joepet

Thanks for your reply - You are right, I know you are, yet it is still very hard to think of life as I knew it (no medical worry's)

I know me analysing my own symptoms is nuts and I know I should leave it to the doctors - but well, when it is your life it's very difficult and I think to myself, hang on, this is my life, if they wont save it then I sure will - and this is what i've been doing - everything in my power to bring about some diagnosis.

I know this much, what ever the outcome - I will fight and I will win - now it is just a matter of getting a diagnosis, I just want to know what the reason of all these swollen lymph nodes is, whaterever it may be...

Saying that, I think I have finally surpassed the panic stage, I am set to persist untill my answer is found

On a nother note, i would like to say a thank you to all who post here and I'm particularly thinking of those of you who post often to clam people like me down, what you do is very humane and I think you should be commended for your great work - you have shown a lot of simpathy / kindness / caring to many people that have come to this board in peices and I have found it quite calming reading your posts

SingleDad · Posted: Fri Sep 25, 2009 2:58 pm Post subject: Re: Exhausted and terrified

There are worse things than lymphoma especially at your age but I sympathize having to dig into the medical system as hard as you have been.

It's very different in Canada but then my diagnosis and treatment was straight forward and very rapid.

Try your network to see if someone knows an oncologist

I notice that specialty is not used very often on this board.....
Question

_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

aisha1 · Posted: Fri Sep 25, 2009 3:44 pm Post subject: Re: Exhausted and terrified

Hi Emitz,

Well..........lots of things going on here (I'm saying that in a doctor's voice!) Wink

Seriously - you have lotsof stuff going on. Half of it is medical, the other half is personal (because of the medical!). Start with the medical...........

You have lymphnodes in your groin and your neck, and cannot feel them anywhere else. If you go to a private doctor, he will send you for an x-ray, then for a CT scan, THEN for a biopsy. He may try an ultra sound then a biopsy, but in any case, it will be expensive. You are right that it will be faster, but it will be expensive. I suggest that you see what happens with the referral. What part of Midlands do you live in?

On the personal side of things. I know that this consumes your thoughts, and the longer it goes on, the worse it gets until one day you reach a point where it has consumed your thoughts to such a degree that you end up just not giving a s*** anymore and you just start preparing yourself. That is probably the stage you have come to now. The 'don't panic' stage is over, and you are now at the 'come on, give me the bad news stage' - BUT it is too early for that! So I guess I am putting you in a transitional stage of 'every week returns more answers'. That is what I had to go through.

You may or may not have cancer. No one knows yet, but you will get to the bottom of this, believe me. You just have to take every few days and attend your appointments, make a list of all the things that have happened to you (even the small things, sometimes they make a difference). I'm hoping you get a referral letter soon.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan · Posted: Fri Sep 25, 2009 4:58 pm Post subject: Re: Exhausted and terrified

Hi emitz

Sorry this is bothering you so much. It is impossible to diagnose yourself over the internet and you really must stop doing this. Normal nodes can be felt and are about the size of jelly beans so if what you are feeling is smaller, then I really think you are worrying for nothing. Also FL is an indolent disease and takes a long time to develop and also it is common in the over 60 age group and uncommon in someone your age.

There are over 300 causes of enlarged nodes and only a few are caused by cancer, so the likelyhood is, if indeed you do have enlarged nodes, that you have an infection which is causing this. The sore throat you had would seem to make this more likely.

You are the best advocate for your own health so by all means go and see a doctor and progress this. In the meantime relax a bit and for your own peace of mind stay away from the internet trying to diagnose yourself otherwise you will drive yourself crazy.

Good luck Smile

_________________
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
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

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