Update following biopsy result a

Hi, just had to go back and check your profile, from what you have shared I would think the transformed disease DLBC has been wiped out and therefore its questionable if the is some FNHL showing on the scan. If it is active disease and its DLBC you will know as you will become unwell, where as active FNHL can linger for years. So guessing its sometime now since treatment then that's more reason to think the DLBC is gone.

So moving forward, was the any discussion about when you would be rescanned as another one 3 months on would be a good way to compare what is happening and is it just scar tissue, if no discussion was help may be worth asking. I had a false positive CT scan 9 years ago at the end of treatment and after 2 further scans got the all clear. Re the kidney my view would be if and until treatment is needed don't worry, as its what condition is the whole body in at that time that will dictate what may or may not be possible. 

As for being accepting of what you have been told you could ask for a second opinion from one of the top cancer centres as files can be sent electronically and reviewed. 

Why not see how it goes, discuss a future scan for reassurance and try to get on with living, its your choice as to how things move forward unless you have an awkward consultant.

my thoughts

John 

Hi John 

Thanks for your reply.

i have an appointment for 3 months hence so I guess that is a good marker of what may come.

i have no real reason to think that Consultants are missing anything. I think the treatment protocols have been followed as I would expect and there are more people looking at things than just the Consultant that I see.

I suppose I’m asking the impossible for them to be able to provide a definitive diagnosis/prognosis and it is as much a case of just sitting it out and see what happens over time.

Physically and mentally I’m in pretty could shape so things could be much worse. So I think I can manage the situation and see what happens.

Thank you very much for helping me come to this conclusion 

Thanks again

Wayne

Hi Wayne, mentally strong is good, so get on with things and see what 3 months bring

Hi John

Just a quick note to say congrats on your anniversary.

I’ve remained well over the last 3 months and Consultant is happy to carry on as is for another 4 months. I’ve managed to dismiss aches, pains & any “non ordinary” bodily feelings rather than dwell on them and think I’m becoming symptomatic. It isn’t easy but I still keep strong mentally, However i couldn’t bring myself to ask the Consultant what his thoughts were on what is happening or has happened with the DBLC, thinking one day at a time is still the best approach to managing the uncertain prognosis. Wondered if you had any insights on managing this type of uncertainty?

Regards

Wayne

Hi Wayne, first thanks for the congrats, I look forward to seeing one from you in years to come!

Re insight on your situation `I would say your approach is the right one, its not easy to dismiss the many thoughts we experience post treatment especially when FNHL is involved, however its important to live your life and not let lymphoma dominate it which can easily happen. I set targets of the first Christmas then 2 years and then 5 years and that was from the point when I got the final all clear in 2010 and when I look back setting goals and targets, especially the 5 year one did I believe hold me back from moving forward, when I look back and reflect on those first 5 years. 

Add your DLBC which is often sorted on first treatment I would say try not to dwell on that, without a full genomic profile it would be wrong to second guess whether it may reoccur or not and I would suspect your consultant would be unable to give you a clear answers so not knowing can be a blessing. To reinforce that, when I went for my check up at 4 years post treatment the consultant passed a comment that he was really pleased with my progress as I had been a challenging case, I sort of knew that but never asked him why, because it made no difference knowing, it would not change what had been or what may come, but it could have held me back mentally. If that makes sense and as someone who needs to know I have learnt at times not to ask questions on occasions. 

A day at a time is a good strategy and plan holidays, activities and events based on being in remission, that way you are in control and if you have the odd bad or off day that's ok, it happens, so be gentle to yourself on those days. 

hope this helps with your thinking and always here to chat, as is Mike

john

Hi Wayne, some great advice from John as normal. 

Being diagnosed 20 years ago with my smouldering T-Cell (Skin) Lymphoma I had appointments with my Dermatologist every 6 months with yearly CTs and skin treatments over 20 weeks every year until year 14/15 when it all went wrong so the big guns had to be taken out. 

I lived with a continual what if and it ent in cycles between CTs and Clinics.

Having gone from a condition that I was told 20 years ago would ‘get’ me in the future to being told in September 3016 that I was in remission was a testament to the progress in treatments..... then in June 2018 being discharged and told go live your life and you know where we are at if you have any issues.

My team have started discharging folks much quicker as they find that it reduces the scanxiaty and improves quality of life and aids recovery.

Initially it was like someone hard taken away my security blanket so it has taken some adjustment to get in the way of thinking no more appointments. 

I have often said that the post cancer journey is rather like driving in a car. The future is wide open in the front windscreen and the past continues to only be viewed in the little wing mirrors. Focusing on the past makes you crash and I have now started to understand this more clearly.

Yes, taking each day at a time is a great starting point but you will find the days start to merge together and the more you you will not be thinking about the what ifs?

Hi John & Mike

So i'm nearly 8 months post my inconclusive biopsy and wonderfully remain well. My wife and I have been travelling and generally getting on with things in a positive frame of mind. I finally decided to retire, I hadn't envisaged leaving work at 54 but considering everything that has gone on it feels the right thing to do. As I said my health has been really good, there have been a couple of visits to my GP for reassurance when a cold refused to budge and I developed an ache down one side of my groin but all OK.

I'm due to see my Consultant at the end of the month and feel my anxiety levels starting to rise. I have managed to remain steadfastly positive throughout the last 8 months and hang on to a firm belief that it isn't yet my time. With the appointment looming however I'm concerned that my bubble may burst if the Consultant wants me to have a scan which may show progression despite my good health.

I guess my concerns are natural but I'm pretty sure I would rather be ignorant of any progression and carry on as I am rather than have to deal with bad news. On my previous appointments my Consultant has been really pleased and somewhat surprised to see how well I have been and not felt the need to poke around, he has said that he would like a scan when he sees me next however. After RCHOP, RDHAP and Radiotherapy left me still with positive scans and impaired kidney functions I think my treatment options are probably limited so having a scan only feels like a route to bad news and as I said I would rather not know. 

Do you think I should let my lack of any symptoms be the guide that says leave well alone or is there any merit looking further? As you can see from previous posts the Consultants was pretty convinced that I would encounter problems again at some point but I have been hoping that some point is at least a few years off yet.

Generally I have been managing the psychology of all this pretty well and my good health has obviously been of great assistance in keeping positive. Starting up on that Scan,Wait and receive bad news cycle again feels pretty daunting

Hi again Wayne, good that you are getting on with life and good on you taking early retirement, I went when I was 55 and never regretted doing it.

I lived for 15 years with no symptoms (apart from my skin issues) so you never know. See what your Consultant says and take if from there, but being positive does help to cool the anxiety down.

Hi Wayne, good to see you have retired even though not planned like Mike and I its the best thing I did, reread some of the advice above as I think that still stands in your case and your consultant may be treating you/coming to conclusions based on stats and expectations rather than you and where you are. I get your worry based on what your consultant has said, however scar tissue is often an issue that confuses and consultants always want to play ultra safe. Based on the facts as presented, you appear to be disease free with both lymphomas kicked into touch and no signs of the FNHL becoming active. Is it a PET or CT scan thats being proposed? each tells different things and as I found in my case the third scan post treatment confirmed no active disease, that could be your outcome as the consultants worries and the way they talk to you may be on unfounded judgements they have made, just sharing my thoughts. 

I know others who have had transformed disease and are still clear of both on a different forum for at least 2 years plus. 

As for treatment options if you do need to have that discussion your age and fitness will be factored in and they will look at the risk the kidneys present and it may be a SCT or harsh treatment may not be an option, the flip side may be they would still do it.

Interestingly today I received a notification about none chemo based treatments for DLBC, so new protocols are being developed and tried all the time.

So whilst appointments often raise the stress levels try to overpower it with that positivity and and maybe go armed with some questions about false positive scans and challenge the consultants thinking, no reason why you cannot be disease free for some time.

let us know how things go

Thanks both for responses. Positivity does in my case at least seem to be the best medication. I don’t exaggerate when I say that my health as gone from strength to strength since treatment stopped. I continue to improve on my P.B. times on my regular walks and even broke out in to a run Yesterday! I take these as good signs and only temper the optimism with the recognition that save for a couple of days of backache I was pretty asymptotic prior to being told I had a 11cm tumour in my Duodenum. Based upon these observations and inconclusive biopsy I think it’s reasonable to propose leaving well alone at least until the New Year which ,if all continues as is, would see me being 2 years post the last time that the Consultant gave us any positive news which was a mid RCHOP  CT scan that showed the tumour had reduced significantly in size from that at diagnosis.