Hi all. My husband was diagnosed with classical HL in Feb 2020 aged 38 and following successful ABVD treatment, has been in remission since July 2020, total metabolic response. Had clear PET scans in November 2020 and May 2021. We have found it very hard to manage our anxieties around relapse and am wondering if others struggle with this also. He has had a couple of scares caused by recurrence of original symptoms (we discovered this was due to the withdrawal symptoms he experienced when coming off an anti-depressant unfortunately being very similar to his HL symptoms- itching and night sweats) and a lump in his neck last summer. Fortunately, investigations proved these to be nothing. However, he started experiencing neck pain in January of this year. It has gradually worsened and has been accompanied by unintentional weight-loss over the past month (very unlike him). He was unwell with COVID a month ago and I'm very much hoping the weight loss has been caused by this. He spoke to his team and they were considering a PET scan but he instead had an MRI on his neck and back last week to see if they could rule out anything sinister with this. He is keen to avoid any unnecessary PET scans as he feels he's had so many over the past 2 years ( he fears the exposure to radiation). His bloods are all normal BUT they were all totally normal at the point of diagnosis so it's not providing any reassurance. Hasn't detected any lumps on examination. We are both feeling quite overwhelmed with anxiety as we await the result, fearing that this is a relapse. We have 2 young children who provide great distraction but I do find it very difficult to think of anything but the results, the 'what if....' etc. I'm suppose I want to ask- how do others in remission manage things relating to symptoms ? My husband has always had anxieties around health and finds it hard to know what's sensible in terms of contacting his team, ending up having more scans etc. Thank you!
Hi Roozie55 and a second 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 don’t have HL but I was diagnosed WAY back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.
It takes time to develop confidence in what the treatment can do, in our bodies and be able to control the noise between the ears.
Mr Anxious knows me very well and I also him so he knows my philosophy when it comes to walking the journey. It is absolutely in the human nature to worry....... but it is also in our powers to be able to control and deal with these challenges. Talking with the right people can help as if we walk these journeys in isolation we get caught up in our own little world...... but talking with others can help.
I will always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….
They run regular Regional Lymphoma Online Support Groups for both patients and Carers and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.
It took my over 15 years to get into any remission that lasted longer than 6-9 months...... but this is a testament to the developments in treatments that my years of relapses were turned upside down and I am now over 5 years in remission.
Take each day as it comes and remember, until you are actually told something is wrong..... it's not..... sounds simple but for me it makes total sense.
Do also check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family.
((hugs))
Update from yesterday , my anxious mind had already decided I was feeling rough and I must be relapsing. Forward 24hrs and my consultant has zero concerns regarding my lymphoma and said I have the best set of full bloods in the clinic. I have now been signed off for a year.
Just shows what anxiety is capable of and how wrong it can be. 
