Newly doagnosed

Hi HighlandGirl and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your partners CTCL diagnosis.

I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 at 43 with my rare, incurable but treatable type of CTCL - NHL (Mycosis Fungodes)

I eventually reached Stage 4a in late 2013 when a second, also rare type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so I do appreciate the challenges of this journey rather well.

Do you know the exact type of CTCL he has?

To encourage you……our daughters were 14 and 18 when I was first diagnosed. I continued to work for 12 years in a demanding teaching job and yes had various treatments over the first 16 years including a second more aggressive type of NHL come along taking me to stage 4……. but all very treatable.

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 68 last Nov being 8.5 years since my last treatment and we continue to look forward to what else life has in store for us to enjoy

((hugs))

Thank you for your reply. That all sounds very reassuring. And I’m very pleased for you 
We don’t know what type? I didn’t even know there was subtypes. We just got told over the phone. We have a phone call consultation with the dermatologist on Tuesday so I assume we will find out then and could ask any questions. The consultant did say that he wouldn’t be able to cut all the lesions away so that radiotherapy is a likely treatment choice.

Hi again.... it's important to understand that CTCL is nothing like skin cancer....... it can't be cut out........ CTCL is a small group of Lymphomas (blood cancers) that shows up in and on the skin. 

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available.... but getting a clear diagnosis is important as there are 60 types and sub-types of Lymphoma

Radiotherapy is often used... I have had 45 zaps over my 25 years...... but it did take 14 years before radiotherapy was needed it as we used other treatment to keep things under control.

It's important to read good information so do not do mindless google searches...... so stick to the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment....... and more specifically this link > Skin (Cutaneous) T-Cell Lymphoma

What hospital is he being seen at?

You may want to have a look at these two links...

     Top tips for getting the best from your appointments

     Questions to ask your medical team about Lymphoma

Thank you for your reply. We was told that one of the lesions/lumps/tumor (bigger than a 50p) could be cut out? Other than this we haven’t been told anything else. Literally nothing. Just the name of the cancer. 
it really is a lot to take in, so thank you for this information.

We are being seen at Raigmore Hospital in Inverness. 

So I assume he had a biopsy done ?

I was also treated by the Dermatology Team at Raigmore Inverness (I am in Smithton/Culloden area) from 1999 to late 2013 before I was moved to Oncology then Heamatology....... so I know most of the staff rather well but the consultant I had is now retired...... but your partner is in very safe hands.

CTCL is on the whole seen as a life-long health condition, it is slow growing and can be treated as and when required.

The next time you are up at Raigmore do go in past the Maggie's Centre (the funny green building as you drive into the hospital grounds) as these folks are amazing and give support to all the family.

Any question just ask.

Yea he had 2 biopsy’s done. I’m assuming he will have to have a scan of some sort also in the near future. Lovely. We are in Castleheather. 
Yes I know the building lol I call it the boat.

thank you for all your advice. It’s comforting to know we are not alone and can be treated. 

It will be interesting to hear if they do actually cut out any tumours (as this is what they are) as in reality that does not solve the CTCL as it lives in the lymphatic system and the blood stream.

Yes they may well do a CT scan with contrast (a dye that shows up in scans highlighting any areas of concerns).

I had CT scans every year for the first 13 years and nothing showed up.

Yes the Maggie’s Team are great and would give you great support.

My story is rather complicated as I had 2 types of Lymphoma but you can you can click the following link to See my story….. but I am 8.5 years out from my last treatment and I was discharged by my clinical teams back in June 2018 (19 years after my first diagnosis) and I am getting in with living as good a life that any 68 year old can be living.

Hey! I hope you’re keeping well!

we found out the type, it’s lymphoma papulosis. The plan is to have a big tumor cut out, steroid cream for the smaller ones and radiotherapy. But we need to wait for the bloods to come back from Leeds and for an appointment for CT scan

Hi again HighlandGirl .... in all my 25 years I have never heard of this specific type of CTCL...... every day is a school day when it comes to skin Lymphomas.

I had a look through the Lymphoma Action website and found THIS LINK to Lymphoma papulosis..... also known as Lymphomatoid papulosis (LyP)

You can read the information yourself but the main things that jumped out to me were.........

"LyP is known as a ‘lymphoproliferative disorder’ but it comes under the umbrella of T-cell skin lymphoma. This is a benign (non-cancerous) condition where lymphocytes collect or grow abnormally but their overall behaviour is harmless. LyP does not spread, it does not affect life expectancy, and it often clears on its own or with very little treatment. It is very rare and it is still being studied"

..... and also

"People with LyP have a higher risk than other people of developing some types of blood cancer, especially primary cutaneous ALCL, mycosis fungoides or Hodgkin lymphoma. However, most people with LyP do not go on to develop cancer"

So on the whole this looks positive although you may not see it like this at the moment.

The extra tests will be looking to see if there are 'other' cells that would indicate that there is one of the blood cancer types there ((hugs))