My son has just been diagnosed - what questions do we ask at his next appointment?

Hi Sandra Sadbag and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

You are going to find this group slow especially when it comes to people with CTCL as it is very rare.

As you will have read in my profile I was diagnosed way back in 1999 at 43 with one of the types of Cutaneous T-Cell NHL CTCL …… my type is Mycosis Fungodes (MF) but there are a few others…… have you been told what type he has?……. MF is the most common….. but still only 7 in a million in the UK have it.

Your sons journey to diagnosis is indeed rather normal as CTCL is hard to diagnose at times….  and many people will have been living with for years and not know that they have a rare blood cancer.

He is young to be diagnosed but I have talked with others who were diagnosed in their late 20s and went on to live full and happy lives into their 80s

The treatment of CTCL manly follows a slow build up of treatment levels over the years. It can start as simple as steroid creams, UV light treatment…… but there are many other treatment as and when the conditions progresses.

CTCL is incurable but very treatable as and when required. Most people will be treated as though they have Psoriasis and that’s about it…… but some need more demanding treatment.

CTCL is what is called a Low-grade non-Hodgkin lymphoma so it’s seen in the same light as an other chronic illness…. but the advantage is we have treatments and life…… my friends with Parkinson’s and MS have not.

As I said in my profile my journey is very very unusual and as yet I have not meet anyone else who went through the journey I went through.

The initial questions are rather simple:

What type if CTCL does he have?

What will be his first line of treatment be?

How often will he be reviewed by his Consultant?

Ask his Consultant what ‘they’ recommend for skin care/hydration creams (This can all be on prescription and yes he can get free prescriptions)

Has he had a CT Scan?……. if not ask why not!

It is very important not to play around with any supplements and alternative treatments with out clearing this with his consultant as believe me the skin is very reactive especially now that he has CTCL.

Unfortunately he will have to stay away from ‘sandpaper’ cloths like denim jeans…… it’s like sandpaper on the skin. His body has to breath so cloths that breath.

A good healthy diet…. no junk food and no excessive alcohol intake. He must keep his skin hydrated so drinking lots of water and carful as to any body products he uses…… reduce the use of scented products.

He needs to keep his body fit, watch his weight….. but live life to the full and not let this define him.

I have said enough.

Do come back to me with any specific questions or just to chat….. this is why I stick around on the Community ((hugs))

Thanks for your prompt reply and kind words of support. It is so good to connect with someone who has been through this, although very sorry you have!

Can I ask, why should he have a CT scan?

Thanks 

Hi again Sandra and do call me Mike........ a lot of people, when they see my community name have a picture of  me looking like Christopher Lambert..... that I am not LOL.

Lymphoma is the fifth most common type of cancer in the UK (after breast, lung, colon and prostate cancers) and is basically a blood cancer...... and does not get the press and coverage that other cancer get.

Lymphomas main delivery motorway through the body for cancer cells to move is our Lymphatic-System.

In most types of Lymphoma (There are over 60 types and sub-types of Lymphoma) a few cancer cells can collect in an area of the body (often, but not always in the Lymphatic System) and have a party. This party then collects others and turns in a full on rave resulting in building a mass/tumour.

A healthy immune system can actually catch these random cancer cells and kill them, our T-Cells are actually called our 'killer cells' and this is their job......  but if they are not functioning correctly the cancer cells can go under the radar.

Very important at this stage to understand that unlike most solid tumour cancers like Breast, Lung....... where these tumours are solid...... in Lymphomas they are not, they are more...... 'spongy' is the best word I can think of and unlike solid tumour cancers a Lymphoma mass/tumour can't be cut out as this just lets all the cells move around the body..... so treatments are used to kill the cells where they are...... although I have talked with folks who have had operations to remove a mass as it was in an area that was an immediate risk to life..... but they still then have to have further treatments to look for the cancer cells.

99.9% of the time CTCL reacts differently from other Lymphomas and the cancer cells collect in and on the skin forming surface plaques.... but if left, these can turn into full on tumours.....

These plaques are relatively easily controlled by using the likes of steroid creams, UV light treatment etc...... this tends to stop the progression. Resulting a period of 'remission' before going back on the treatment roundabout.

Ok so to your questions...... Why a CT?

This is used to check that the cancer cells are not already having a small party somewhere.

His Consultant will most likely check over his main Lymph-nodes on his neck, armpits and groin and if there is nothing of concern they may leave the CT.....

I had a CT every year over the first 14 years but this was mainly due to me working in a very stressful teaching job.

When we get stressed our Lymph Nodes naturally get bigger.... the same as when we have an infection so my consultant was just making sure that he was not missing anything as my lymph-nodes were very reactive........ It took 14 years before a party started in my Lymphatic System...... most folks with MF don't have this but as my tumour above my eye got out of control my condition was not being held back and the rest is history (you can see all this in my profile)

Is he being seen by a Hematologist, Oncologist or a Dermatologist?

All the link I use are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos....... this is your 'go to' place for information.

((hugs))

Hi Mike,

Thank you for your detailed reply again, very much appreciated.

My son has a letter which says the biopsy shows features of T cell lymphoma and specifically some concern about large cell transformed mycosis fungoides. He has no B symptoms and also didn’t have any lymphadenopathy.

Doesn’t mean much to us at this stage.

He will be seeing a Consultant Dermatologist in the Cutaneous Lymphona Clinic next week.

Thanks again Mike 

Ok so you more information than I first thought.

I never had B symptoms.

As this is not ‘just’ MF it may not be straightforward as it could have transformed into another type of Lymphoma - you can actually have two types at the same time….. I went between CTCL and PTCL for years

This link is a very good list of questions that you may or may not need answers for.

Questions to ask your medical team about Lymphoma