Newby- hi

Hi Pastyum and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your partner.

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

For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) so I most definitely appreciate the challenges of this journey rather well.

Back in 1999 it took a full year and 6 biopsies before I got a clear diagnosis……. even with my second T-Cell appearing in late 2013 it took a good 6 weeks as like your partner, my case was sent round a few hospitals for specialist testing.

The time this is taking is unfortunately how it is when you have one or more of the rare 60 types and sub-types of Lymphoma…… it does feel as if he is a sample but until there is clear information it’s hard for that plan to be put in place…. but once all the information is put together things will start to move quickly.

As an encouragement, when I was first diagnosed our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now 3 months away since my last treatment 9 years back and we continue to look forward to what else life has in store first us to enjoy.

Any questions just ask and we will do our best to help you out ((hugs))

Thank you Mike, what a journey you have had! Am concerned the delay will affect prognosis & god knows what the cancer is doing while we wait! Only had a ct scan so far & because he isnt under one department no one seems to want to order a pet scan! Feels like he falling through the gaps- lack of communication - no point of contact either! Sorry its overwhelming! 

Honestly the wait will not make much difference in the long run…… but it’s not good that you don’t have that point of contact yet….. if you have any names or phone numbers you call them as the system needs to be pushed especially at this time if the year (holidays) 

In all my years I have never had a PET scan……

I was not in a good way back in 1999 (See my story) but they had to get the information correct to get the best plan in place….. so I had to push though even although I was stage 4 then and by the time I went for my first chemo it looked like I had swallowed a brick!!

It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.

I had an initial 15min blast of chemo and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

As for the Staging in Lymphoma…… it is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.

Remember I was stage 4a and it made no difference to my outcomes.

Staging in Lymphomas identifies….

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation.

3) How long your treatment needs to be.

Take a breath….. and another ((hugs))

At point of diagnosis we met a cancer nurse- havent seen or heard from her since the day after when she called to ask how he was! We have rung the number and left messages- had different responses from different people every time- they dont know him or us or his case and its repeating ourselves again! The site of cancer (lip) means he getting bounced to dermatology and back again! From the scan 2 small nodules found elsewhere but they seem to ignore those!

thank you for responding, much appreciated!  

This is not great….. unfortunately at times you have to be your own advocate and keep putting your pointy elbows into the system and keep pushing until someone speaks to you…… it’s hard work but it has to be done.

If you are just not making progress try the hospitals PALS (Patient Advice and Liaison Service) for any further help.

Interesting that Dermatology has been mentioned as I was under Dermatology for my first 14 years…. I never seen an Oncologist or Heamatologist until 2013.