Hello all, my story begins in December 2016 when I was diagnosed with malignant melanoma. Treatment was quick and involved surgery of the tumour area and lymph nodes removal from my groin.
All was good until late 2022 I began to have some skin irritation and some new growth on my back. As I would have a different doctor every other appointment I did not have confidence in them. I was diagnosed with hives for 9 months even though treatments were not helping. Then I noticed a lump on my side below my armpit. Only then was I sent for further tests.
A doctor then called me and said chest x Ray is clear but you have lukemia. Remember I was told this by phone call. She told me I would get letter to attend hospital for further investigation.
When I met my consultant at hematology I told her that I was informed I had lukemia. Well , she was confused and rather angry as I had actually been diagnosed with t cell lymphoma which we now know is a rare type called sezary syndrome.
Wow.... anyway following ct scans they have also discovered a shadow/ mass in my left lung. So I have melanoma metastases which is stage 4 as it has reached vital organs. Double whammy.
That all happened in September of last year. But only since last week things are moving in the direction of treatment. I had a lung function test last Friday to assess my ability to under go surgery to remove the area of my lung as a surgical biopsy of the area is to difficult. They only have my various ct, pet scan pictures to go by. So I have the green light to have this surgery done. I have no idea of what is involved as to be honest I feel like there is without doubt a lack of communication as I have two different consultants dealing with the different cancers.
Sezary syndrome is so rare that the doc I was speaking to on Friday had never heard of it. My lymphoma consultant can't tell me much either as I am the first case she has seen.all I know is what I have researched myself online.i know that it is not curable but can be managed to a certain degree. So it's chemo for sure and some kind of blood cleaning process that pumps my blood via some machine that uses high intensity uv to attack the cancer cells in the white cell of my blood. Still don't know when any of my surgery or treatments will begin.
So to be honest I am still far from having all the information and knowledge of my future which is kind of worrying. This causes my mind to think things that make me very confused and concerned. Anyway this is my story .
I look forward to further discussion with anyone that feels the same and knows how and what I am going through. Be strong and carry on folks.
Hi Chappie and a very warm welcome to the Community but sorry to hear about the journey you have been on.
I can’t talk about your Melanoma but I was diagnosed way back in 1999 at 44 with my type of T-Cell Non Hodgkins Lymphoma.
There is a group of Lymphomas called Cutaneous T-Cell Lymphoma (CTCL) and your Sezary syndrome (SS) and my Mycosis Fungoides (MF) being very similar.
My MF is 7 in a million rare so I am not surprised that your consultant will have not treated your SS.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……
…….support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with a group click on this links above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community……. but I will keep an eye open for you in the T-cell lymphomas Support Group.
