Ok here it goes, this may be a long post so be prepared, maybe get a drink!!

Those of you who know me, will have read that in January I had two lymph nodes removed from my neck and biopsied, the results came back positive for Reactive Sinus Histiocytosis.

My ENT hadn't heard of this before, and my consultant is fobbing me off, Nicola bless her :angel: gave me some info, I had already seen it on the internet so it didn't tell me much about how it came about.

i decided to put a file together so i could be armed with information when I face my doctor, advice given by Ails to be strong!!

It says patients with SHML (sinus histiocytosis with massive lymphadenopathy) can also have malignant lymphoma, usually involving anatomic sites different from those involved by SHML.

It is reported that only 1000 people are know to have this disease, + me and lion now :confused: .

It can involve the skin, bone and breast, we can also have immunologic abnormalities, which may explain why I always seem to catch things all the time?

The association of SHML with Hodgkin's disease or non - Hodgkin's lymphoma is rare.

I have been saying to my consultant that i think i have lymphoma, and because my initial biopsy didn't show it, although I don't think he knows that it is even associated, he just fobbed me off and said it could be ME, take anti-depressants:confused:

Any way guys I still have a long way to go, and a new consultant to seek, but I feel positive for now that I may of found my answer.

Without you my friends I would of perhaps given up by now, you are all inspirational.

From the depths of my heart my respect and love for you all.

Susie xxxx

Where is everyone today??

is it because it's a Monday? singer I hope your well, and i'm still waiting to see how you are Debs.

Ails hon how are you? long time no hear, I know your busy, I just wanted you to know that i have made an appointment today to see another ENT consultant for a second opinion, and i have an appointment on Thurs to see my own GP, I will get some results soon:confused:

I hope everyone is ok, I am really aching in my side and back, still no sleep and the weather isn't as nice today, just really humid :eek:

Bye Guys :wave:

I'm sure I've asked you this before but have you seen a haematologist? If not then demand to see one!!!

xxx

I'm with Amanda on this one.
DEMAND. Period.
Early in my diagnosis---"they" wanted me to try another "associate" of my Oncologist. I almost went along---until I thought HEY>>>WAIT A MINUTE!
This is MY life and I'M paying for it & I want to see whom I was referred to!!!!!
Long story short:
I'm so glad I stood up for myself. I realize, although the "other" doctor is probably competent, but I LOVE my Oncologist. That's why he has a long waiting list of patients--- word has gotten out that he's compassionate with people...and THOROUGH>!
My point is---you need to be as assertive as you've EVER been in your life.
Good luck. Just think of all the positive energy people are sending your way. Use it in good health (& love) :)

Fairy,

I'm here and posted in another post to you also. Wow, you have done some awesome research, now it is time to get a doctor to go with this and get you better! SOOOOO glad to hear about the other appointments you have made!
I so care about you and want you well.

I think you are 7 hours ahead of me. I saw the movie "Holiday" this weekend and it makes me want to come to England. It is lovely!

Have a good day, my good friend!

Luv and hugs to you,

Deb ;)

I'll go with you to England---there's certainly some lovely people we know there!
:) :) :) :) :) :) :) :) :) :)

:angel: You ladies are angels sent to help us through the rough times :angel:

Mada, I saw a hematologist, and nothing, he felt my stomach and that was basically it, then said to the nurse that it was really hard on the left side.

What do I need to expect from them, I don't know what to ask:confused:

You ladies are more than welcome to come and stay at mine, it'll have to be in the shed mind you (lol) Actually I can put the kids in there and you can stay in with me!!

I just want to get to the bottom of this:confused:

Englands nice, especially in the country, like any where you have the nice areas, and the not so........................

I care about you all too, thanks for the support again.

Shall we place bets as to whether or not I get any sleep? (only joking!)

xx

I have another "sleep" hint for you.
I use a fan on low, all the time ...winter/summer/spring/fall....for the "white noise." I don't know what your sleeping status is.... especially if you're sharing a bed with your husband---but, I, myself am an ultra-light sleeper, and ANYTHING wakes me up. About 4 years ago, someone got me a "sleep machine" with ocean sounds, etc... I really didn't like it, but I realized the hmmmmming of something lulled me to sleep & helped me STAY asleep.
Anyway, I even traveled with my fan. It's become a part of sleep regimen.
Also, a warm bath before bed.... cup of chamomile tea..... anything to relax...
Wow...I'm making myself tired & I just got up a little while ago! LOL!
S.

Susie

Hi - you need to get this sorted once and for all. I know what it's like to be fobbed off (it took me 3 years for a diagnosis) You kind of look up to doctors like they're the adults and you're an expectant child putting your full faith in them, feeling stupid when you suggest something and they give you "that look". Push comes to shove, the best doctor in the world does not know your body better than you. You know something isn't right and you have to demand action.

I felt bad pushing as we don't pay for our doctors - but we do when you think about it. They're not charity workers, we pay through our NI payments for their wage!!

I so want to come down to the Midlands and frog march you up to the nearest haematologist and demand they test for EVERYTHING. But sadly it's not my place - only you can do this, Babes. Just keep hounding them until that they're so sick of you that they do every test on record just to shut you up!! :D :D

Ails xx

Sorry - duplicate

:D Thanks for the tips, I have tried a lot of sleep ideas, i can usually be alright but now and again when i am in a lot of pain it gets worse, I just can't get comfy etc.

I don't like chamomile tea, or green tea it's yuck!!!

Are you on Tuesday now? It's weird isn't it the time difference, debs says she's 7 hours in front, so It's the middle of the night for her :yawn:

xx

Hi Fairy…

Do not hurry up with conclusions. As I said I still don't have answer for my condition, but now I am not sure that I want to know answer. Especially if the answer would be "lymphoma". For know I have one biopsy (November 2005) and two PET scans (January 2006 and December 2006) all of that negative. Just biopsy said "hyperplastic lymph node with sinus histiocytosis". If it is really "sin. histio." it would be much, much better than lymphoma, because it is benign disease and in most cases resolve spontaneously without any treatment. If the disease stayed resistant or show some progress than the treatment is possible. In my research I found that the best treatment would be just surgery to remove problematic lymph nodes to avoid suppression of vital organs. In some cases they used radiation or steroids. But most doctors don't know anything about this disease. On my last app. my oncologist said this is not lymphoma it is something else. I said "What" and he said I don't know, something very unusual, or maybe lymphoma that is not developed well, or….

I forgot to tell about my symptoms.

May 2005 I saw enlarge lymph node on my neck - left side (no others symptoms)

July 2005 first ultrasound showed few enlarge lymph nodes left and right side of neck all of them in 1cm and 1.5cm in size. Also they find mild spleen enlargement.(no symptoms)

November 2005 first CT showed the same as previews US, and no evidence of any progress. But they didn't tell anything about lump that I fill and see above my collar bone. So far they didn't see on CT lump that I see in mirror. ( no symptoms except, some filling like process of swelling, stretching in my neck.)

December 2005 biopsy (you know results)

January 2006 PET scan - negative (the same symptoms, nothing additional)

July 2006 CAT scan - no progress, all lymph nodes the same size and spleen too the same size.

December 2006 PET scan - negative everything is the same like in first one

May 2007 CAT scan - no change.


The problem is that they do not see any change with their scanners (or they don't know to see, or they don't watching cheerfully or…) but I feel changes. Most new change is some swollen mass on my pelvic area, but this mass is soft and sometime painful. They didn't see anything on last CAT scan. They said "pelvic are normal exam".

Fairy~~~

Well....I too, recieved my Biopsy results today and can now sit with you and Lion on the bench:( I have NO idea what any of this means on my report, but It says "Left cervical Lymph Node with Reactive Sinus Histiocytosis and features of Dermatopathic Lymphadenopathy."
Not one Dr. has even called me to explain a little here. I did go to my surgeons office when they said it was in andthe Dr would look it over, well he did and all the secretary said to me, is that he doesn't see anything too much and follow up with my Pulm and internist??!! Are you kidding!! So I will call there again and ask that the surgeon please call me after hours and explain a little in lay-mans terms!!
You are not alone..There is not much at all on the internet about this stuff!!

hey lion
erm i dont know if this helps any but 'Left cervical Lymph Node with Reactive Sinus Histiocytosis and features of Dermatopathic Lymphadenopathy' literally means-
-inflammation of the sinus histiocytes which are a type of macrophage (not sure what that is) and features a disease of the skin and a disease of the lymph glands.

fairy, i know this sounds wrong being a girl but have you cried in front of a male doctor? After i had my ultrasound the male doctor who told me i had 'cysts on my spleen' and he 'didn't know what else to do with me' as soon as i started crying he ordered me a CT scan.

Is there any way we can collectively sue the NHS or doctors just for not believing us? I just want an apology. I was treated like i was wasting there time for 9 months. The mass on my first CT scan was 'overlooked' because it wasn't where the pain was! Maybe if you requested copies of the images of the scan? I know you can do that but you have to write to someone (i can't remeber who it is, maybe ask citizens advice?)

xxx

Hiya

Complaints in the UK are generally through the GMC (general medical council). I complained to the practice manager at my GPs and demanded an apology. The doctor in question phoned me (I ended up comforting her as she felt so bad - typical!!) and she also apologised in writing. I found that it helped in 2 ways. Firstly for my sanity -she was in the wrong, I wasn't going mad. secondly I knew that she wouldn't make the same mistake twice and therefore she wouldn't let anyone else with a lump down in the future.

I didn't take it any further as the NHS is in dire straits financially as it is and the rest of the team at the RVI more than made up for her short comings.

Ails xx

I don't know anything about this so I'm just sending you a {{{HUG}}}. I'm so sorry you're going through all of this....all of you.

I'm not going to try and sue the NHS!!! I meant that as a joke. Can you imagine me sueing them and then asking for a job in four years time! haha! My mum says i should write directly to my GP practise. All i really want is an apology from my old GP, she was really awful to me. Who knows what the case would be now if i hadn't changed my GP when i did. Scary thought

xxx

Hi Mada

It would make for an interesting interview!!:D :D

All I wanted was an apology too - I wouldn't judge anyone who would seek compensation as you can really be put through the wringer. It just didn't sit comfortably with me in my case.

It was a change of GP for me too - went to an emergency appointment for something else and saw another dr at the surgery (who is now my doc, funilly enough). You're right it is a scarey thought!!

Ails xx

I wonder if our old GPs have ever been told? The GP i changed to was a locum and moved in march so now i don't have a GP. I just call the ward if theres anything wrong with me. I'd never been to my GP since i was a child until last year so if anything's wrong with me i blame the chemo.

xxx

Hi Guys

Thanks for your support.

Lion I didn't mean to up-set you if I did?

I have had different symptoms from you, night sweats, ithching tiredness body aches etc.

My spleen is enlarged, they say this isn't usually infected by what we have.

My family are fed up with me, and I feel like I'm going down hill, I think I should stop coming on here:confused:

Sorry guys xx

Don't even think about it, Lady!!!

You come on here and you get some answer and you buoy people up and help them

Ails xx

Fairy.

Please stop this. You know you are not well. Compare youself now to how you were 5 years ago. This is not in your head. What is going on????

:dizzy: Deb

Thanks peep's I know it's those horrible doctors telling me what they tell every one they can't find an answer for!!

love you allxx

I have been on the dreaded internet:rolleyes: looking for answers, info really to ad to my case load, I feel like a solicitor :D apparently saggy's (star sign) are meant to make good barristers :p

Anyway!! Sinus histiocytosis and lymphoma can look very similar, I know I keep repeating myself, more so to convince myself to get another opinion.

I want to know if they have made a mistake:confused:

Off the track now, but does anyone ever feel as though their bowel is being twisted when on the toilet, or being sick or meerly bending over etc?

Mine does, and now it really hurts when it happens I can't move, and then it feels as though it has popped back in:confused: Yuck:dizzy:

I don't even though if it is my bowel, I just don't need anything else to add on to my list of things right now!!

Any way, I will try again to get to see the Ent and my doctor, not been able to get an appointment yet, but I will.

love and best wishes to you all from me xxxxxxxxxx

I think you should come to Edinburgh and see my haematologist!
xxx

Fairy---is that possible for you to travel?
It might be worth looking into. It sounds like "your team" is letting you down.
Where I go (my Oncologist) I hear people travel from miles around to see him. I'm just lucky, he's close to me.

Thank you Amanda and singer

I have made an appointment for wed to see my Gp, and an appointment on Fri to get a second opinion from an ENT consultant.

I will ask their advice:confused:

I will back later if I can't sleep!!

Take care, mada how are you hon, not heard about you for a while?

love to you both

Susie xxx

Susie,
I haven't spoken/written with you but I've been following you. I am glad that you are finally getting to the bottom of this whole ordeal.

Write back soon.

D

Hiya Susie

Glad you're still pushing.

Ails xx

Oh I'm fine thanks, been a bit busy, schools finished and i still have a couple of essays to hand in!!! Have treatment tomorrow, just three more to go! woohoo! Let us all know how your appointments go
xxx

:wave: Thanks ladies as always.

Ails are you alright? are you really busy with your training etc? I feel out of whack, one day we can have a good old gas, catch up!! xx

Hi D, lond time no hear, i hope that you are feeling a bit better than you have been, I am sorry for not posting, I still think of you often. I am really not any closer to finding out anything new, I feel as though it may have to conclude, and be like the x-files some strange disease that no-one will ever discover:confused:

No I haven't given up yet, one last try(yeah!!)

Amanda, I saw your post to singer, you go girl, I am proud of you how you stood up for yourself, sorry that it made you feel like that.

Not trying to sound nasty more intrigued, as to what peoples reactions would be if you were to wear a top with this is what cancer looks like, as you stated?

People think by holding out a tin asking for donations is helping and it is, i have done it on many occasions, but being faced with it is different.

I would have probably taken that guy rant further and called up the cancer organization, asked for his ID and complained, that's how horrible I have become at the moment, I feel as though I have turned into the incredible hulk, just not green:rolleyes:

Well ladies you know you all have a place in my stone heart!!

I love you all hugs Susie

Ps I am in my body somewhere trying to beat off this demon (lol)