Diagnosis

Hi Modge and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about the journey your son is on.

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 NHL eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.

Unfortunately your son's story is actually not that unusual...... although Lymphoma is the 5th most common cancer in the UK it can be one of the hardest to be 'eventually' diagnosed with.

In England (I am in Scotland) the 'normal' referral time to a Heamatology appointment is about 14 days with the first definitive treatment within 62 days (including the initial 14 days) .... The initial Heamatology appointment would most likely trigger other tests including a biopsy with results taking anything from 7 days to up to 21 days (my longest) if specialist tests have to be done. With 60 types and sub-types of Lymphoma the Diagnosis of Lymphoma can be very complicated but has to be done to find the best way forward.

As for Treatment this can be wide and varied, from Chemotherapy, Raditherapy........ it all depends on what type of Lymphoma and where it is.

Lymphoma is basically a blood cancer and it can't 'normally' be cut out although some surgery is used where there is a danger to life from any growth areas but this has to be followed up with other treatments.

Edit after seeing your second post: It is a very challenging time for you all. As for the referral letter get back on the phone first thing on Monday and ask 'when' the appointment is........ and if there are any cancellations to move this on faster.

Always around to help more or just to chat

Hi, thank you for your reply. One of our main concerns re: times pans is that my son (his partner & 5yr old daughter) live 3 hours away from the rest of the family, they have no family/peer support at all where they live & we all (his wish too) would like him to relocate back home so that we can all support him/them through this time, we know it's likely to be a long haul. The stumbling block is that we will need to transfer any treatment to here, we don't want to cause further delays or complications. Without accurate info, it's difficult to start things moving or know when in the process is the best time for him to move.

This is indeed hard and I can understand why you are looking at him moving. I live in Scotland and had my initial treatment in Inverness where I stay but also in Glasgow and there was no problems with the move between the hospitals.

Get on the phone tomorrow to ensure the system is working for you.

So sorry you’re having to face this. My husband is currently having chemo but without a definite diagnosis. He had four biopsies over the space of a year, all “suggestive” of NhL except one which was negative. Also two PET scans and a CT which showed lots of activity and enlarged lymph nodes in his belly but apparently cannot conclusively prove it’s malignant. He had abdominal pain and was on cocodamol four times a day for three months before the consultant decided to start R-CHOP rather than wait for another biopsy. He has had four cycles now and is no longer in pain but we still don’t have a diagnosis. The uncertainty is the worst thing in my experience. If you know where you are you can make a plan. But I guess there is always uncertainty with cancer.  Good wishes to you.

Hi ElsieG abd a warm welcome to you to our little corner.

For me back in 1999 it took a full year, 6 biopsies and a few scans to eventually find the proof if my rare type if NHL…… and this was with my consultant being 99% sure as to what if the 60 types and sub-types of Lymphoma I had.

I hope that your husband is dealing well with the R-CHOP (it’s a very effective tool)

Always around to chat ((hugs))