Another 3 month wait

Greyhoundgal · New User Joined: 23 Sep 2009 Posts: 3

Hello everyone, please, please can anyone offer advice - it is going to be a long post though!
Back in March, I went to my Gp suffering from a maddening, all over itch along with really bad night sweats. I had dropped weight from 125 pounds to just over 100. He referred me to a haematologist who said he suspected lymphoma. My white cell count at the time was showing up as 16.8 (normal range 4.0 - 11.0). White cell count in July was up to 21.8. I have a few enlarged nodes to my right neck.
A CT scan was done, which showed up nodes on the left of the aorta, near the renal hilium, measuring 1cm in diameter.
The scan also showed a mass on an ovary.
The haematologist rang to say that it was not lymphoma, but my issues were arising from the ovary.
The ovary was biopsied and all CA markers tested - everyting was benign.
I was referred back to the haematologist, who the sent me to an endocrine specialist, as there were also nodes on the thyroid. These were tested with a fine needle aspiration, which also tested benign.
No further treatment or testing was offered. I took my sister to the last meeting with the haematologist. She is a nurse and started asking medical-related questions. Her last one being "you have ruled out lymphoma then?" he replied no - we just don't know where to go with this. I have heard nothing from the hospital since.
I have gone back to my GP to ask him for something to help me sleep - the itching and night sweats are driving me insane. I am constantly tired from waking up to 3 times a night, absolutely soaked.
The GP has referred me to another trust - who say my case is "urgent", I have today received a letter from the new trust saying the wait to see a haematologist is 3 months.
My main concern is that this has now been over 6 months with still no definitive diagnosis, if it is indeed lymphoma, what is the likelihood of it spreading if it is not being treated?
Sorry for the long post - no-one seems to have any answers for me!

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

Hi Greyhoundgal

Sorry you have to be suffering with these symptoms. May I ask your country of residence? From what you've written so far I would guess that it is not the United States.

The first thing any doctor should suspect with enlarged lymph nodes and a high WBC count is an infection. Have you received any antibiotics, and if so, did they help at least temporarily? If infection has been ruled out, have you been considered for a PET or Gallium scan, that might show if there is cancerous activity in the body?

How you proceed from here probably depends on the medical procedures of your country. If it will ease your worry a bit, a few months delay of a lymphoma diagnosis will probably not affect your treatment options too greatly. We have had people here in the most dire of circumstances with lymphoma spread over their entire body go on to a complete remission, so at whatever stage such a diagnosis is received, there is always hope.

Having said that, you should definitely try to find a way to speed up your appointment if possible. But the ways to go about doing that probably differ based on your country of residence.

Good luck, and please keep in touch with your progress.
_________________
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

Greyhoundgal · New User Joined: 23 Sep 2009 Posts: 3

Hi Joepet
Thanks for your speedy response. In reply to your question regarding antibiotics - I have had 2 courses since March, neither have had an effect on either the enlarged nodes or the itching.
I just feel like I am getting shunted from pillar to post.
I am based in Wales in the UK.
I don't think anyone has mentioned a PET or Gallium scan- is this what I should be asking for?
Many thanks again
It seems that this site offers a whole lot more than our esteemed consultants here in the UK.
A little reassurance sure does go a long way!!!

ChemoMan · Posted: Wed Sep 23, 2009 4:45 pm Post subject: Re: Another 3 month wait

Hi Greyhoundgal

Joepet has said everything I would have said but I would like to reiterate his point of trying to speed this up if you can. Don't panic as there is no need and you don't know what you have but another 3 month wait will cause you a lot of needless worry.

aisha1 lives in the UK maybe she could give some pointers and maybe there are some support groups in your area that can help you speed things up. I would try speaking to your local member of parliament, in Australia this can quite often be a very productive method of getting things to happen fast.

Good luck, we are always here to help.
_________________
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

ChemoMan · Posted: Wed Sep 23, 2009 4:48 pm Post subject: Re: Another 3 month wait

Hi Greyhoundgal

RE the PET....its a bit early for that. First a biopsy needs to be done. PET scans are done after a positive biopsy to determine the spread of the lymphoma.

Good luck I hope you get to see a doctor soon
_________________
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 · Posted: Wed Sep 23, 2009 4:56 pm Post subject: Re: Another 3 month wait

Hi Greyhound Gal,

I'm not sure if you are aware of the new measures regarding the NHS system, but now you can CHOOSE your hospital that you would like to be treated in (or have appointments etc) - it no longer runs in order of postcode. That means, in short, you can refer yourself, and choose a hospital that suits you best, with shorter waiting times etc.

Sounds like you are not in Cardiff, but how far out are you? I would presume that Cardiff has a bigger NHS availability schedule and would be able to help you more right now? I think 3 months to wait for an appointment is far too long, especially if you are having night sweats that are disturbing your sleep.

I understand that you are worried, and anyone would be in your situation, that's why I am suggesting that you either; (ssshhhhh, don't tell anyone I said this!)

1) Go to your local A&E when you have a night sweat in your wet clothes and tell them that you were scared by your night sweats. They will have to see you and HAVE to start the ball rolling. Believe me, they have appointments, you just need to push for them! They like to sit back and drink tea and talk about the office party.

2) Start researching on the internet for the hospitals nearest to you with a haematology dept. or even an oncology dept. Go to your doctor, and tell him THAT IS THE ONE I WOULD LIKE TO BE REFFERED TO. In a ploite way Wink

Hoping you get some answers soon.

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

aisha1 · Posted: Wed Sep 23, 2009 5:14 pm Post subject: Re: Another 3 month wait

Before I go to bed..........

Thought that this may help?

http://www.wales.nhs.uk/sites3/page.cfm?orgid=79&pid=32036

It is a list of all the consultants in ROYAL GWENT HOSPITAL - CARDIFF. they have 3 haematologists on board, so you may find it easier to get an appointment?

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

Greyhoundgal · New User Joined: 23 Sep 2009 Posts: 3

Thanks so much for the advice - it really does help that people here seem to actually listen and evaluate the situation.
I am way out in West Wales. Swansea trust is the nearest to me, which is the one with the 3 month waiting list.
I am going to call them to ask if I can
A. Be referred on to a department where I can see someone a bit more quickly.

B. Pay for a private consultation, at least then it will get the ball rolling hopefully.

Again, thanks for all of your advice, and for just being on the PC to answer my queries.

Today I do not feel like a half-witted, hysterical hypochondriac.

I hope you are all keeping and feeling well.
God Bless

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