New diagnosis- waiting for treatment

Friday will give you the clear plan for moving this forward….. use the links I put up earlier in the discussion as they clearly highlight the questions you should be asking and looking for answers for.

We are not much further forward after yesterday. The lymph node needs further tests to determine exactly what type of Lymphoma it is. This is being done at Christie Hospital in Didsbury.

ENT have discharged my husband and he needs a PET scan and we will then see a haematologist. 

it’s unbelievably frustrating but I guess from the previous comments this is normal.

I was not impressed with the ENT consultant who did not know if they had removed all the lymph node or not. He basically said ‘I didn’t do it’ meaning the operation. We know that but you’ve got the notes! . He seemed to think they had after having a look at the report but I’m not convinced. 

We asked lots of questions and at one point he said ‘have you asked all your questions now’ as if he needed us to leave. And when we did leave the room he literally called in the  next patient straight away. Totally heartless I thought and more bothered about getting through his patient list. 

The nurse that was with him was very good and we now have her name and number now so at least we have a point of contact. 

Sorry to hear that your are still on the roundabout….. but unfortunately this happens a lot when it comes to the diagnosis of Lymphoma and it does not help when some ‘medical professionals’ are ‘pants’….. but good that the nurse was better….. this is often the case.

I think I said it took a good year and 6 biopsies before my type was confirmed but the wait made no difference to outcome….. in other cancers it would, but general unit in Lymphomas.

The Christie Hospital is as good a place for further tests to be done than anywhere in the UK.

Lets look for answers soon ((hugs))

Just from my experience, I suspect that only a biopsy would have been taken which would then be sent off for testing. The testing does take a bit of time (mine was just over three weeks). At that point, you should (hopefully) be given an idea of which lymphoma it is...at which point a haematologist will be able to give you a much clearer idea of what to expect, what treatment your husband might be in store for et.c.! Sounds like you're on your way to that point though so hang on in there!

My husband has been told they think it is T Cell Lymphoma. The consultant arranged for more tests and said he will see him in 4 weeks. That was on the 12th Nov.

He had a PET scan last Wednesday and today got a phone call to say they want him to see the haematologist consultant on Monday at 9am. No idea what for. 

I am now very worried. We were told 10-15 days for the results of the PET scan. Has anyone experience of this coming back more quickly. I am frightened it’s shown something else up and that’s why he’s been called in. 

Hi again Frankie21 sorry to hear that the diagnosis journey continues......

T-Cell Lymphomas sit in the rare side of Non Hodgkin's Lymphomas.....

(Please note that Non Hodgkin's Lymphomas are rather different from Hodgkin's Lymphomas)

Having/had and been treated for 2 of the rare types of T-Cell NHL over my 25 years I know this journey very well.

T-Cell Lymphomas tend to be rare so this is why we have a dedicated support group for these types......... you will find the group using the link below.....

      T-cell lymphomas Support Group

As for the early appointment.... the PET scan may well have given the consultant a better understanding as to the way forward so my look to start some early type of holding treatment......

I was the same back in late 2013 when my second aggressive T-Cell NHL appeared...... I had a new biopsy and another scan and my case was sent out for review to a few specialist........ but we did a soft start with regards to treatment until we had all the information and it had been reviewed at the MDT meeting then we moved to a full treatment plan.

You may have seen these links before but it's worth putting them up again....

   Top tips for getting the best from your appointments

   Questions to ask your medical team about Lymphoma

Take a few big breaths.... and a few more..... they will find a way forward.

But in way of encouragement I turned 69 yesterday. I am 9 years out from my last treatment and I am still living a great life...... always around to chat ((hugs))

Thank you once again Mike. I didn't realise they could do a soft start with regards to treatment. 

its very encouraging to know you are 9 years out of treatment.  

Ii think I worrying that they have found cancer elsewhere as well. 

its going to be a long and worrying weekend. 

in late 2013 when I started with steroids (soft start) I was stage 4…… at that time I had been living and treated for my  Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) for 14 years at times my body was 70% covered in tumours as this is an incurable skin Lymphoma…  

Then my second Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) kicked of everything and I had a brick sized mass in my neck and everywhere in my bone-marrow.

Lymphoma can show up in multiple areas in the body and basucally is one and the same thing so this is why chemotherapy is used as it reaches all the areas of the bone-marrow and blood stream.

2 months on and we are no further forward. 

My husband had another biopsy on the 18th Dec at The Christie Hospital as they can’t determine what type of Lymphoma it is - and we are still waiting for the results.

The most distressing thing in all this is the waiting with no contact from anyone.

I am so shocked that you are given a diagnosis and basically abandoned for weeks on end. Surely there should be more support than this?

I rang the Hospital this morning and they said they would get the consultant to call us back. 

I am so frustrated I could scream, but can’t say this to my husband as I don’t want to stress him more. Hence me posting on here.

Frankie

Hi Frankie - I’m really sorry to hear this. Getting my diagnosis from the ENT was SO frustrating - my wife and I basically ended up calling the ENT consultant’s secretary twice a day to push for an answer as we were desperate just to get cracking with treatment. (I don’t actually think our chasing helped speed things up though!!)

Having said that, getting another biopsy on 18th December is GREAT news but I suspect it would take 3-4weeks to get the result from there with Xmas in the way…so not all that surprising based on the conversations we had when trying to get diagnosed in July.

Keeping my fingers and toes crossed for you guys!!