Hello,my husband has just been diagnosed with T cell lymphoma,after a large abscess 10inches was removed from his small intestine.he has an appointment next Thursday to see the specialist.I am worried s
ck ,I don't know what to do,or what's involved ,any advise please
Hi Scared17 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (Incurable) but treatable type of Low Grade T- Cell Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your husbands I do appreciate the challenges of this journey rather well.
Do you actually know the 'exact' type of T-Cell Lymphoma he has......as there are a few different types....... or has he found out he has a T-Cell Lymphoma as a result of having the abcess removed and has still to meet a Hematologist.
Happy to chat.
Good morning Scared17 how your husband has found out he has the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) is rather normal..... and most people just don't know about Lymphoma..... but even although there are actually over 60 types and sub-types of Lymphoma these are all on the whole very treatable...... yes some treatments are full on like Chemotherapy, Targeted therapy, Radiotherapy to name a few but these are very effective and yes, life goes on.
T-Cell Lymphomas are on the rare side and as I said my type is very rare. I had a lot of treatment over the past 23+ years...... but my last treatment was back in Oct 2015 and I remain in remission to this day, turne 67 last Nov and living a great life..... so please be encouraged.
You need to 'get' that Lymphoma is just not like solid tumour cancers as Lymphoma is basically a blood cancer so develops very differently.
If we were talking about a solid tumour cancer like lung, colon and prostate we would be having a very different conversation. I was stage 4a back in late 2013 but this made no real difference to my outcome...... but in solid tumour cancers a stage 4 diagnosis is a very poor prognosis.
In Lymphomas Staging is a tool that tells consultants where the condition is presenting....... Lymphoma can show up anywhere in the body but this is how it develops, this is not seen as secondary cancer..... it's all the same thing. Staging will also identify the best treatment options and for how long.
This link Questions to ask your medical team about Lymphoma take you through the questions you may want to be looking for answer for....... get a notebook and start to put these questions down on paper in preparation for your appointment.
Look to get your questions clearly answered, ensure you get contact information (Name, email. phone number) for his designated Specialist Cancer Nurse (SCN) as they are your go-to person when you want to ask questions or need support.
All the links I have put in my reply are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc........stay away from random google searches.
Lymphoma Action run regular Support Platforms with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than 'talking' with other who are walked this journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey and also a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
This group is also here to help you out as best as we ((hugs))
