Another person with enlarged lymph nodes

konti · Regular Joined: 01 Sep 2009 Posts: 20

hi,

I'm 21 y/o female an i have enlarged lymph nodes for around 6 months. I have 3 in the neck(2 on the left side and 1 on the right) and 1 under my chin. I was seen by 7 different doctors and had many blood tests done, which were all fine except that they found toxoplasmosis positive, however, the infection is not present i had it in the past. i was seen by 3 different hematologist. First one was useless and he didnt think that it was lymph nodes in my neck, he tried to convince me that it was a bone. the second visit to hematologist was better Smile

the docotor felt the nodes and said they were really small( which i dont agree Rolling Eyes

) and he just wanted me to come back in a month, however i managed to get a referral for ultrasound. The nurse who was doing ultrasound didn't say much, she only mentioned that the lymph node on the right side is 7mm by 11mm, but she didn;t say anything about the one on the left side although they are bigger that the ones on the right side. so couple weeks ago i went back to hematologist to find out my ultrasound results and guess what? The nurse wrote a report, but it wasn't checked by the radiologist, so my hematologist couldn't see the results! I'll only get them at the end of september, in my next appointment. In my last visit, hematologist said that he didn't want me to come to the hospital so often,because he doesn't think it is cancer, so i should only come back in 3 months! That was where i got really angry Evil or Very Mad

I'm under so much stress and i just can't wait another 3 months, so after a really long discussion i got referral for FNA, which i'm going for this thursday. I'm extremely scared and can't sleep, because i always have the same dream that my lymph nodes are getting bigger and i'm taken to some dark hospital Embarassed

Every morning first thing is to check if lymph nodes are still the same size Smile

Sorry for such a long story, but i don't want to scare any of my family members, so trying to keep everything for myself which is really hard. I only told my fiance and he is great, however, just wanted to talk to people who went through all this hell.

P.S. Sorry if i made any mistakes, but my first language is not english Embarassed

aisha1

Hi,

I feel your worry, and I think you are doing pretty well so far. To have enlarged lymph nodes is worrying, whatever the doctors tell you, then for them to say that they have been messing with your results id not easy either.

I don't know where you are, but this sounds like a London mistake! I had to push the junior doctors to go and see what lymphoma and its symptoms really were! They also told me that my blood pressure (after my operation) was normal at 82/43!! I told them that it WAS NOT normal for me, but they insisted that I had an 'atheletes blood pressure'. That got me annoyed, because they obviously had not read my notes before coming to see me. My blood pressure is usually 125/63 or around that mark, so I had to tell him to go look at a person's notes before coming to advise them on their condition.

Looks like you have similar problems. Write all of your questions down, along with your concerns and address them in a way that is 'matter of fact' or else no one really takes this all seriously. GP's are usually the best person to talk to in this way, as the hospitals think they know what they are doing all the time, and don't like to listen much.

Keep us updated. Leaving things for 3 months does sound a bit long, so if I were you I would ask to be referred to a different hospital (they all have reputations for a reason).

Take care of yourself.

Aisha

konti · Regular Joined: 01 Sep 2009 Posts: 20

Thank you for your reply Aisha. It definitely is one of the hospitals in London. At the moment I'm waiting for FNA, so hopefully on 23rd September I'll find out what is wrong with me and if not I'll ask to be referred to different hospital. It is also really frustrating when doctors are not taking me seriously because of my age.

By the way I was following your story Aisha and I think you are incredibly strong person!

aisha1

Wow! Now how did I know it was a London Hospital? Laughing

There are now new measures in place with the NHS. You can tell them which hospital you would like to be treated in and you can base this on WHATEVER you like. It could be on nearest to your home, cleanliness, waiting times, place you most trust, nurses or staff you trust etc. So I would use this to my advantage if I were you.

Hospitals get money from Central Government depending on how many they treat, waiting times etc. The more people that choose to leave, the less money they can have in the next years budget, so they get scared when you say that you would prefer a different hospital - just say it in a nice way. This is your health. If you took your hamster to a vet, you would expect to know what was going on, wouldn't you? You mean more in life than that hamster! Laughing

Just say everything in a polite way. You will get through in the end. Good luck and just keep on their case. If it is not too execsive, I would recommend getting a soliciator involved. Maybe even talk to PALS (Patient Liason Service in the hospitals).

Aisha.

konti · Regular Joined: 01 Sep 2009 Posts: 20

Thank you, Aisha! I'm going for needle biopsy tomorrow, a little bit scared but can't wait to find out why my nodes are enlarged as the last 6 months were very stressful.

ChemoMan

Hi konti

Just to let you know I have read your posts and am thinking about you. I will leave it to aisha to guide you through this as she has experience of your situation

Good luck and don't panic it could be nothing Exclamation

_________________
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

aisha1

Hey!

I'm glad you are prepared for your biopsy. You must also know that a FNB (fine needle biopsy) is quite a good thing, but doesn't always return the conclusions they would like. In my case, the FNB was a failure. They didn't get the node, and took some lung tissue instead - even though they were guided by the CT! I ended up having to have a proper operation to get into the nodes. Let's hope that your FNB is able to draw conclusions. Don't want to scare you, just thought I would prepare you. Shocked

I hope that you will have some results soon. I have a feeling you may have a cat? If you do, try not to get any infections at the moment. If you have a cat litter tray in your house, put it out on the balcony, or get someone else to change it.

Wishing you all the best. Chemoman also knows a lot about the biopsies and the return of results etc. He is also very good at calming people down that are worried! He'll keep an eye on you.

Aisha. x

konti · Regular Joined: 01 Sep 2009 Posts: 20

So I am back from the hospital and it didn't go as good as I wanted. The doctor could not feel my lymph nodes properly!! He tried to put the needle in one of them, but it wasn't successful... And it hurt soo much! He said he hit the bone by accident.. Ouch.. So I will have to come back next time and they will try to do with the guidance of ultrasound.

Unfortunately i will have to wait at least one more month to find out what is wrong with me..

aisha1

I'm sorry to hear that you are having all of these difficulties. It is so annoying when you prepare yourself for something, but that something doesn't reurn anything! You have to through the whole thing all over again. I have been in this position as well. It's annoying.

Waiting another month is not good enough. I suggest that you go to your GP and tell him to send you to have an open biopsy. Thsi will have to be done in the end anyway, so they can admit you as a day patient and get it over and done with.

All of the hospitals in London can be found on the internet. They also have a number of stars that they have been given. These stars are a little bit like the stars they give to hotels (2 star, 3 star, 4 star etc). Go onto the internet and see what each hospital says. Then ask to be treated in that hospital. Ask the GP to push it a bit, this shouldn't be hard because you have the experience of a failed biopsy, so you should be able to get your GP to speed it through again.

A month is too long to wait. They have slots, believe me. Just put some polite pressure on them. This is the only way you will be seen. You could even tell your GP that it is worrying you and you can't sleep etc which is true anyway.

I really feel where you are right now. I hated it when they told me my biopsy had failed. They had taken lung tissue instead of the mass in my chest, and I don't know HOW that happened because they were guided by the CT scan! I just told them how let down I was with that. I also told them that I was going to write a letter to the head of the hospital to see what had happened and if I could have another one asap. That seemed to work. I just said it in a polite way.

I hope you have some movement in all of this soon.

Aisha. xxx

konti · Regular Joined: 01 Sep 2009 Posts: 20

Thank You for you advice. I'll try to talk to my GP,actually going to email her right now Smile

It's just when I went to her first time, she didn't want to send me for biopsy,because she didn't think it was something serious as the lymph nodes are not that big and mobile that is why she gave my referral to haematologist 'who have seen many people with the same problems and know what they are doing'. Anyway, I'll go and have a chat with her, she knows that I'm really concerned about it, so hopefully she will be able to speed it up.

I also need to call to hospital AGAIN as my ultrasound report hasn't been done yet Evil or Very Mad

I don't understand why are they taking so long!? Don't want to go to my next appointment and don't get any news.

Aisha, is it OK if i ask you which hospital are you going to?

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

Hi konti.

I'm not a doctor and thus I am unfit to diagnosis anything, and I certainly don't wish to trivialize your suffering. However, if the doctor was troubled because your lymph node was too small to find, then I would consider that good news.

Good luck!
_________________
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

konti · Regular Joined: 01 Sep 2009 Posts: 20

I know... Even doctor said it is usually a good sign, however I hate having those 3 lumps in my neck and they are scaring me, because I don't know the reason. Maybe everything is fine and they are just reactive, but just in case something is wrong I wouldn't like to feel sorry later for not pushing them to do the right tests.

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

Of course, it is good to be proactive. I'm just saying that, with lymph nodes that small, there's probably no need to panic, as even if it is lymphoma it will most likely be quite early along, and thus easily treatable. So no need to waste time and energy about worrying before the results come back.

Schedule the tests you need, then forget about it until it's time.
_________________
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

aisha1

Joepet is correct in what he is saying. Don't panic. I was just saying that you should push these people because they have lost your documents or report and that is jsut silly. Now they are giving you a long waiting game again, when you are obviously distressed.

Don't panic and think too much about your nodes. Just get it sorted out with the hospital. If you just get the report that was written for your ultrasound, then that should at least give you some insight. You have a right to look at that data and all data that is kept about you.

When you do things - do it politely. Don't get angry with doctors, because they are trying to help. Very Happy

Aisha.

konti · Regular Joined: 01 Sep 2009 Posts: 20

As my appointment with heamatologist is getting closer(next week) I am just trying to go through all the things I want to ask. I was wondering if I should ask for chest x-ray? I checked couple websites and it looks like it is one of the first test to be done,however,no one ever mentioned it to me. I also think that the biggest lymph node on my left side got a little bit smaller,which would be a good sign, but not really sure. I still want it to be taken out, so I can move on with my life,which is great at the moment. For the first time I have everything I want: we just bought a house, I finished University,just got a new job, going to Oz on holiday in few months, but all that stress which I'm getting because of the lymph nodes does not let me to enjoy all of that. Hopefully I'll get some answers in the next few months.

I feel really bad, because every single time I am writing here I am moaning and all of you are so positive Embarassed

Sorry

I also wanted to thank you all once again for your support! This forum is great. There is lots of information and people are really friendly, warm and helpful. Aisha,Joepet,Single Dad and ChemoMan you cannot even imagine how important your stories and your experience is to people who are going through 'waiting for diagnosis' period.

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