New diagnosis- waiting for treatment

Hi Frankie21 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but 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) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The wait is unfortunately normal when it comes to getting clear information in place with regards to ‘typing’ Lymphomas…… but it is indeed a source of stress.

I have had multiple biopsies over my 25 years and the time frame for results was between 2 weeks to 6 weeks….. then another wait for an appointment. But after a few years I agreed with my team that they should call us once results are in…… 

In these early days consultants look to have all the information in place and a clear plan in place and this is given at an appointment…… but do be prepared for the possibility of further tests to be done - this can unfortunately be a complicated process.

Way back in 1999 when I was first diagnosed it took a full year and 6 biopsies to eventually get the truth even although my consultant was 99% sure as to the actual rare type of Lymphoma I had.

I think the most important thing I can say at this point is that when it comes to Lymphoma….. timeframes from Diagnosis of Lymphoma to treatment starting is completely different from sold tumour cancers like… lung, kidney and many others.

Lymphoma is very treatable and even when it showed up in multiple places it is still very treatable.

Always around to chat.

Thank you so much Mike. That helps settle my mind a bit. No doubt I will be on here again over the coming months.

You may want to check out Lymphoma Action website…… this is you go to place for information.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Any questions do get back to me….. controlling the noise between the ears is important….. 

Thanks again Mike. I did phone Lymphoma Action last week. I’m trying to avoid reading things at the moment as it’s not helpful and may scare myself unnecessarily. The appointment is not that far away now and I feel better about waiting after the comments in your first email.

Hi again Frankie21 …… the main thing to remember is that Lymphoma is very treatable.

You may find it helpful to look through these two links in preparation for your appointment…..

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Hi - Sorry to hear about your husband. This is very relatable to me and so I feel like sharing a little bit of my personal experience just so you know what to expect in terms of timings. Sorry it might be a bit long.

My 'biggest' lymph node was on my groin area which means it is not as obvious when it is enlarged and I didn't feel anything when I was having other symptoms (fevers, sweating, fatigue). Many doctors explore your neck, armpits and check your abdomen for an enlarged spleen, but they stop there. So until I did a CT scan we didn't discover the enlarged nodes around the inguinal and retroperitoneal areas. 

The waits were awful and by far the worst part of this journey. You have to deal with the uncertainty while also keeping an eye on appointments, making sure your phone is not on silent, check that you take it with you to the bathroom when you are showering in case they ring... Then check NHS app for updates on the referral, updates on the appointment, etc. While the people who work in the system are generally nice, the system itself is not nice to the patient. You are told to wait as if you were a robot with no feelings of worry, anxiety or despair. 

My timeline was:

- CT scan (Christmas 2023) after months with fevers, doctors trying to find infections, doing blood tests, inflamation markers... so 5-6 months of not knowing what was going on. 

- CT scan results -> urgent referral to hematology. Aiming to respond within 2 weeks. After 13 days I rang the GP and another doctor said the referral was rejected because there were no CT scan images or report attached... The new doctor submits a NEW referral again which restarts the whole process. 

- Call from hematologist after ~10 days (late Jan), need for biopsy. Technically would get appointment within 7 days.

-  I reach out to the hospital after 6 days because noone has given me an appointment. I get one for 5 days later. 

- Biopsy done 2nd week of Feb. Results from biopsy can take 3 weeks.

- F2F appointment with consultant 2 weeks later to confirm Hodgkin diagnosis. Need to do PET-CT to determine where else would I have cancer cells. Aiming to do within 2 weeks. 

- After 1 week without getting calls for appointments, I ring the hospital and they say the PET-CT machine is broken and they need to get it fixed... I laugh now about all these issues but at the time you can imagine how much I was freaking out. 

- I don't know who pulled the strings, suspecting it was my consultant, but they get me a slot to do the scan in a private clinic in London which had some sort of agreement with NHS.

- Results discussion with consultant 2 weeks (!!!) later. Since the results of the scan lead to the diagnosis, they have to discuss the treatment plan within the medical team, hence why it takes so long to get the full set of results. I had Stage 4 so I just went for the suggested chemo as it had the best chances and I was fit to take it.

- Chemo started about 10 days or 2 weeks after my consultation. At the time my fevers were getting so much worse and my bloods were not looking good so there was no room for waiting any longer. 

So. Waiting was awful, and it was so much worse for my partner than for me I believe. Once you have a plan, it is great. You follow a protocol and you know what's going to happen. But the waiting times are awful, from end of December to mid March I was in a limbo not knowing what was going to happen. Talking to a therapist might help, I didn't explore it personally. I was too tired and getting sick to do much exercise, but other people set a goal to get 'fitter' before starting the treatment, this could also help if the consultant recommends it.

I think some of my issues were a bit exceptional and don't happen in most cases (i.e. my GP forgetting to attach a scan to a referral...), but biopsies and diagnosis take some time. Multidisciplinary teams (MDT) meet once a week I believe, so say the results are ready on a Tuesday but the MDT happens on a Wednesday, they probably won't discuss the case until the following week, then writing down stuff and agreeing on treatment will take a few more days. 

Good luck with everything. Once the diagnosis and the plan is set, you have access to the specialist nurse teams, you have a contact number 24/7, you can talk about your symptoms with them... but until diagnosis unfortunately it is all very dehumanizing.  We are in a queue and wait and don't get much support.

Like Thehighlander mentions, lymphoma is treatable. There has been a lot of research and development onto it and there are different plans and doses available for each case. 

Thank you so much for your reply. My husband has no symptoms at all so it seems this has maybe been picked up early by the scan which was for something else entirely. 

The waiting as you say is dreadful and so feel we’ve just been sent away and left to our own devices to just wait. It’s terrible really. 

The appointment is next Friday so we should know more then and I shall have a list of questions ready as suggested by The Highlander.. 

I've recently been through this - the ENT stage was really frustrating(!!) and you do feel like you're stuck in limbo! My understanding is that the diagnosis of lymphoma by biopsy is particularly complicated and so it does take a bit of time. Mine took just over three weeks to come back and once the ENT knew it was Hodgkins Lymphoma he literally just palmed me off to my Haematologist.

I was panicking about the length of time each stage took in case it meant I was slipping away from Stage 2 to Stage X but none of the haematologists I spoke to seemed concerned by the idea of the chemo starting weeks later than it could have done (and due to various (quite boring) reasons, I ended up having to go through no less than three haematologists). Currently around 50% through treatment and can confirm that I don't think the long wait to start has affected anything...

Hi MJ Hodgkins Bloke

Thanks for sharing your story so far.I’m so grateful for the info thats been posted on here. Without it the last 3 weeks would have been so much worse.

I now know what is more likely to happen on Friday, and I will be able to ask more questions this time. The first meeting when we got the diagnosis we were a bit stunned so asked very little. 

Glad to hear you are now halfway through treatment and hope all goes well. 

Good luck on Friday. I went to my appointment with a big list of questions and got response to all of them. 

It's a time to be selfish and get the doctor/nurse to spend time answering all your doubts, don't worry about using as much time as you need. I probably spent an hour on my main appointment and after all the time I had to wait for diagnosis and didn't feel bad one bit for using as much time for an appointment that was supposed to be 30 mins.

The CNS (nurse) will probably give you a few leaflets and contact details for any doubts, and that is also reassuring if for whatever reason you forget to ask something you will find info on the leaflets and you can always ask by email or on the phone