You might be right but the tumour on my finger happened really quickly and destroyed the connective tissue.i don't know if there was a secondary infection the biopsy didn't show much only common hand bacteria certainly nothing like septicemia.they originally thought it was orf which is viral and effects sheep and goats mainly but it's self limiting and humans along with dogs become immune after the first infection.the tumour on my hand was cut out for biopsy and that's where they found the cutaneous t cell lymphoma but failed to find it in biopsies of my finger and some of the thumb.im guessing as it's formed tumours it's beyond stage 1a? they're going to do another biopsy on the 9th January 2020.its possible that many more people across the world have ctcl but have been diagnosed as having ezecma and psoriasis and unless it progresses beyond 1a the misdiagnosis isn't so important as it's treatment is similar topical steroids,etc..I should have guessed something was amiss as when they thought it was ezecma and then psoriasis they always thought something about it didn't conform to the patterns they produce and the the doctors where always a bit mystified by it.when they did a patch test for ezecma and I didn't react to the 30 substances then they concluded it was an unusual form of psoriasis.

Hi Andy/Mori

As you both know I was diagnosed with mycosis fungoides on September of this year. After check ups, biopsy and blood test through my NHS Dermatologist I have now got an appointment with a hospital in London on the 13th January 2020. 
 

I would like some advise in what questions I should be asking to the consultant. I would be grateful for your inputs or anyone else's on this thread.

kind Regards 

jay 

Hello Jay

The very first thing I thought of was getting staged.  In my case, that involved a bone marrow biopsy (a very medieval procedure), blood tests, and a PET scan.  Staging varies from country to country.

when you have your stage, you can then ask about the risk of your disease progressing.  

I hope that you are advised that your disease will be fairly indolent, and that you will die with MF, but not because of it.

it then follows that you can make some critical life decisions.  Do you keep working, or, do you draw up a retirement plan, and a bucket list?

When you are staged, you can then ask about treatments and medications that may be applicable to your condition.

cheers for 2020.

regards - Mori

Hi Jay,

Merry Christmas!  Glad that you have been referred to London - probably the same centre I go to.  Who knows I may see you there.  If it is the same one, you will be seen by the Professor on your first visit and he will take a lot of time to explain everything to you, introduce you to others and give you papers to read.  I also had another biopsey on this first visit - quite a big one and he arranged PET scans and blood tests.  On future visits I tend to be seen by other Doctors and then by the professor every once in a while.  All the staff are brilliant and very helpful.  They also may ask you to be part of their research programme - its very easy to do, just answer a few questions once a year.

I actually enjoy my trips down there and often take time to walk along the river at Bankside and through the infamous Borough Market - great area.  I lived in London and was a student there 50 years ago so always enjoy going back.  

What to ask?  Definitely find out what stage they put you at and about disease progression.  If like most people with MF you are at an early stage, the chances are that you will stay like that for many years.  For most people this is a very indolent disease.  At the centre I have met people who have been at stage 1B for 25 years or more.  If they do not talk to you about treatment options then ask about that too.  There are different types of Chemo as well as ray therapies, but if you are at an early stage you may not need any of these. I also came away with loads of little sample tubes of different emolients to try.  

Good luck and do leave time for that walk along the river bank and through Borough Market.

All the best,

Andy

Hi Andy/Mori 

first of hope you both are enjoying the festive period! Thank you very much for your input I really appreciate it. 
 

My dermatologist has already stated that I am at Stage1B when they had there last MDT meeting. Do I still need to ask the specialist at the hospital what stage I am at? I probably find the answer to my next question on my visit to the centre but if you guys know it would be appreciated...how much of the skin do you have to have covered with patches/plaque to be Stage 2A? Is it the whole body from top to bottom with no tumour?

Andy I am definitely referred to the same centre as yours and I really hope I bump into you there, so I can thank you in person!! You and Mori (also couple of other on this chat thread) have been brilliant on here! Giving advice and reassurance to the newly diagnosed like myself. Can't thank you guys enough and I hope we all (All MF patients)  have a really good new year free of this disease!!!

Kind Regards 

jay

Hello Jay

I found the following definition on this US page:

www.cancer.gov/.../mycosis-fungoides-treatment-pdq

'Stage II Mycosis Fungoides

Stage II is divided into stages IIA and IIB as follows:

Stage IIA: Patches, papules, and/or plaques cover any amount of skin surface. Lymph nodes are abnormal, but they are not cancerous.

Stage IIB: One or more tumors that are 1 centimeter or larger are found on the skin. Lymph nodes may be abnormal, but they are not cancerous.'

So while stage IA and IB deal with patches, stage IIA refers to plaques (raised patches, where the T-cells  are proliferating and creating a thickish paque).

stage IIB is the skin tumour phase.

Spot radiation is very effective for getting rid of tumours.  Nukes 'em.

Mori

Sorry to hear about what happened to your mother.in 2006 I was diagnosed with ezecma and then psoriasis but about a year ago a huge tumour ballooned up on my finger and smaller ones on my thumb and palm and it turned out to be a form of cutunous t cell lymphoma probably mycosis fungoidis but they haven't narrowed it down yet.i almost lost my life to it as the finger and thumb became infected leading to the amputation of the finger and the thumb won't bend and needs radiation treatment.i think that most people who underestimate it are commenting on the stage 1a part of it but they have to accept it may not stay at 1a and it becomes life threatening at any level above 1a,well so is 1a because it has the potential to move up a stage.infact most people with 1a probably don't know what they have and think that they have ezecma or psoriasis.

Hi Andy/Mori

Update on my appointment with the specialist at the London hospital...

I have been told I'm at stage 1B and I will be under going Narrow Band UVB treatment at my local dermatologist department. Andy I know you mentioned previously that you had Biopsy and PET SCAN done at your first meeting but I didn't have a PET scan nor biopsy taken , only blood test done (report will be given at a later date) is that ok? Or should I have requested for PET Scan?

It was all quite overwhelming so I couldn't ask all the relevant questions I just listened to her. She examined my skin and told me that I am at stage 1B and it is most likely indolent as I have had the cancer for many years. 

even though I got a lot of answers I still came out with more questions in my head but I did get contact number of the clinical nurse which have been appointment to me for further information or questions.

I will have another appointment with the specialist after I've gone through my initial treatment to discuss how the treatment is going. So I'll still have the opportunity to get answers to my questions.

Is that all they do or should they have done more? Just want to get your opinion guys!

Kind Regards 

jay 

Hello Jay

PET scans are expensive, and you are mildly radioactive for 3 days or so afterwards.  You can't hug babies. The protocols for using PET scans to diagnose and stage MF vary from place to place. 

My dermatologist had to ask the teaching hospital 2 or 3 times to stage me, and eventually they did, using a PET scan, bone marrow biopsy, multiple blood tests, and a thorough physical examination.

What I'm trying to say is that PET scans aren't essential for staging.  However, if you had skin tumours visible, they probably would have given you a PET scan.

It is weird that a punch biopsy wasn't done though.  However, it sounds like you are in the hands of a capable specialist, and since you are IB, more than 10% of your skin area has patches. 

I would ask about skin biopsies next time you see the specialist.

The key thing is that it sounds like your condition is classically indolent - which is good.

NB UV light will initially show-up skin patches that you didn't see before - so don't be alarmed when the patches seem to get worse initially.  The UV will send the mutated T-cells to their doom (and you will end up with a rediculous sun tan :-)

Since I didn't have any patches on my head, when I had NB UVB, I ended up covering my head with a white pillow case.  Males are often advised to cover a part of the male anatomy with a sock.

Cheers - Mori

Hi Jay,

This all sounds like good news. You have been classified as 1B - welcome to the club - and been described as having a indolent form of this disease which is also good.  I am a little surprised that they did not do a biopsy, but perhaps your local dermatologist had done them and got clear results.  Although I had several punch biopsies at the local hospital over the years, their results weren't clear and it was my dermatologists suspicions that made her refer me to the specialist hospital.  There they did a large biopsy with a scalpel requiring 4 stitches afterwards, to get a definite answer.  PET scans are expensive and maybe they felt it wasn't necessary in your case.  Good luck with the UV treatment - everybody will tell you how well you look with the tan!

Andy