My mum has been given a provisional diagnosis of lymphoma, but hospital hasn't met the 2 week NHS turnaround for cancer referrals and mum has been told she has been 'de-prioritised'

Hello everyone, 

I'm not sure if this is the right place to post, but I'm so worried about my mum and just wanted to see if anyone else has experienced a similar situation, and if anyone has any advice for next steps. I'm sorry it is such a long post, but I'm not sure who else to talk to. 

Background: My mum found a lump in her groin area about 5 weeks ago - she left it a couple of weeks hoping that it might just be something swollen/possible hernia. About 2 and a half weeks ago she spoke to a doctor at our local GP (not her usual GP, just the one that was available that day for a telephone appointment). She described the lump (at that point no pain or other symptoms) and the doctor told her that painless lumps were nothing to worry about, probably something muscular, and to leave it another 2 weeks and call back if there was no change/any symptoms. Now my mum used to be a nurse (about 20 years ago) so she has some existing knowledge, and she didn't feel that the information she had been given was correct - mum always thought that it was the painless lumps that you DID need to worry about, and that it could be a sign of lymphoma. So she calls back a couple of days later and asks to speak to her GP specifically. GP says yes - this is a concern, and that she needs to have a scan & blood tests urgently. 

I wanted to add at this point, that my mum has a diagnosed 'phobia' of cancer (for want of a better word) and is on permanent medication for anxiety to deal with this. 15 years ago she was diagnosed with anxiety triggered by a cancer scare - basically while my mum was pregnant with my younger brother many years before, she was the primary carer for her sister who was having treatment for cancer, and who died just weeks before my brother was born. My mum didn't grieve properly at the time, but she was overall absolutely fine for the years that followed, until she found a lump in her throat and a rather callous specialist told her bluntly that it was likely to be cancer. This turned out to be false - it was a benign tumour in her thyroid, but from that point it was as if a red alarm button had been pressed inside her and every time she has had any kind of lump or bump, she absolutely and completely convinces herself it is cancer and that she is going to die - this leads to extended periods where she won't eat properly, won't leave the house, cannot be left on her own etc. 

So fast forward to the GP telling her she urgently needs a scan - because of mum's history, my mum & dad decide to pay for this privately to speed up the process. I think the first scan was an x-ray, which was inconclusive - they couldn't tell what the problem was, so GP said she needs a CT scan. So again they pay privately to have a CT scan and the results are sent to the GP the next day. GP calls my mum on 19th June and tells her that from the CT scan they can see she has a 3cm lump in the lymphnodes in her groin (this is the one she can feel), but that they can also see others in the scan that my mum can't feel. However - GP says that looking at mum's organs (spleen, kidneys, lungs etc) they all look fine, and suggests it hasn't spread, that mum has done well to find the lump. Obviously the GP cannot diagnose cancer conclusively, but she said that with all the information they have so far, they think the symptoms are in line with lymphoma and that mum is being referred immediately for a biopsy (to confirm & stage it) and an appointment with the hematologist to discuss next steps and treatment if necessary. GP said she placed the referral on the 19th June and therefore that Mum would receive information on next steps by tomorrow at the latest (the 2 week window for cancer referrals on the NHS). Also wanted to add here, that 3 years ago, mum had another serious cancer scare - she had a 19cm borderline ovarian cyst removed, and we are also worried that this new lump is on the same side as this cyst - and that it could have been slow-growing there for the last couple of years. 

As of today we still hadn't heard anything about the biopsy or consultant appt - fully appreciate that the cut off is technically tomorrow, but Mum's anxiety is through the roof and over the last week she has started experiencing pain (in her back and stomach, and persistent night sweats every day), and over the last 3 weeks has lost almost a stone in weight. My dad rang the hematology department at our local hospital to see if they could provide any update at all (or on the off chance we hadn't received the letter), and they told him that my mum is in the system, but she's been 'de-prioritised' due to Covid-19, and that the goverment has implemented an extension to the 2-week turnaround to help cope with the coronavirus. They said that my mums case would be discussed next Tuesday at a weekly consultants meeting, and that my mum needed to call them from next Wednesday to find out what the next steps are. I completely understand that we are in the middle of a pandemic and of course the NHS are doing everything they can - but somehow this doesn't seem right? Also that we have had to chase down an update, and that it could still be weeks before my mum has a biopsy and gets any kind of confirmation on a diagnosis, let alone treatment starting. We are all worrying as well that the lump has got larger (I can feel that it has) and now she is getting other symptoms that were not there before. The GP said that a couple of weeks should not make a difference, and of course there will be other people in need of the care & treatment too, but I have been reading about aggressive forms of lymphoma and now worrying that it might be spreading, and every week could count. 

We had hoped that mum being 'de-prioritised' may have been an indication that they didn't think it was as serious as other potential cases and that mum could afford to wait, but mum asked the GP this directly and she said, no you're still being treated as an urgent case, but amongst the urgent cases you have been de-prioritised to cope with other cases. I just wondered if anyone else has experienced something similar during the pandemic, or really just to get this off my chest and speak to someone about it because I don't know what else to do and I am struggling to cope with my mum's anxiety around the cancer (I am currently on furlough while my Dad is still working a full time job). Ultimately I know we just have to wait, and I really don't want this to sound like we are being impatient and demanding, it just feels so weird. 

Thank you to anyone who takes the time to read this, any words of advice are very much appreciated, thank you x 

  • Thanks for such a long n detailed post @rig221

    I am tagging in as he's the community champion- for the Lymphoma group so he can add anything.

    You can also ring the helpline on 0808 898 0000 8am to 8pm, 7:days/week.

    Best of luck,

    Sue

  • Hi and a second welcome to the Community, I am Mike  and I look after some of our Lymphoma groups.

    Your mum's story sounds so familiar and this happens a lot as the road to diagnosis is very complicated and GPs find it hard to get a clear way forward.

    I was diagnosed with a rare type of Non Hodgkin's Lymphoma in 1999. It was classed as "Incurable but treatable and I would never see any remission" But lived years with no real treatment but in late 2013 had various treatments I was told in Sep 2016 I was in remission for the first time in over 17 years and doing great so be encuraged.

    Blood cancer is very complicated to diagnose but it is very treatable and must not be seen to be anything like solid tumour cancers.

    She would be very lucky to be seen within the 2 week referral as Heamatology Clinics are very busy places at the best of times but COVID has made this even more challanging. So the time for appoitmants will always take longer. But it looks like she is in the system and yes if her initial results show a slow growing type of Lymphoma she may well be de-prioritised but it won't be long before she will get some information.

    Her GP is spot on, a few weeks, even months delay will make no real difference when it comes to Lymphoma.

    Testing, Diagnose and Staging needs some clear results and once done, a plan can be put together. The stage number in blood cancer is nothing like those used in solid tumour cancers - I was stage 4 but this just told my Haematologist what treatment to use and for how long.

    I have talked with many many people of all ages, who have come through treatment and are living long happy lives........ but you do need to know that some treatments are hard work but do-able. 

    There are over 60 types of Lymphoma so getting this clearly diagnosed correctly. We do have a few main Lymphoma Type Support Groups so you can have a look are but until she has a type you will all be a guess.

    Once you have more information you can join any of the following groups:

    Hodgkin's Lymphoma

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-Cell Lymphoma

    I am happy to help you out more at any time.

  • Dear Mike, 

    Thank you so so much for your kind and informative reply - this has been so helpful and your words are very encouraging. There is some invaluable information there as well, thank you - for example, I really didn't understand about the differences between diagnosing blood cancers vs other cancers - we were very much approaching it in the same mind as Mum's ovarian cancer scare, and it's really helpful to understand this is a different situation and diagnosed in a different way. 

    I had also assumed (and I know my mum has as well) that for example 'Stage 4' would mean the worst, and untreatable, form of a cancer, so it is wonderful news to hear that you have been treated and doing well! I can't thank you enough for sharing your experience, I really appreciate it. I have shared your reply with my Dad and we are going to discuss with my mum tomorrow to help her to try and approach this in a positive way, also to try and help her to get her head around the fact that she may not need or be able to have immediate treatment depending on what her diagnosis is. This may be difficult with her anxiety but I know she will take comfort from your experience and words, thank you. 

    I will definitely come back and visit the forum once we have a diagnosis, this is a wonderful resource and it is so nice to be able to speak to someone about this, thank you. 

    Have a good evening, stay safe, R x 

  • Dear Sue, 

    Thank you very much for reading my post and putting me in touch with - Mike has provided some excellent insight that will be really helpful over the next few weeks with my Mum. I am so glad that I posted, thank you so much for this wonderful community. 

    Very best, 

    Rosie

  • Hi Rosie  I am so pleased that this has helped put some order into this in some way.

    People can be living with blood cancer for years and not even know until some other medical investigations highlight it and even then, some folks can go on for years again without treatment but it is all about how aggressive it is as there are various categories.

    In 1999 the only thing wrong with me was a small developing rash on my back..... my great GP tried everything for a year then admitted defeat and passed me over to a very respected Dermatologists but even then - it took him a further 9 months, 2 CTs and 6 biopsies to find out that I had a very rare skin Non Hodgkin’s Lymphoma, not to be confused with skin cancer.

    Yes, I was stage 4 off and on for 14 years, it was basically like a chronic illness, but late 2013 it became aggressive so we had to treat it aggressively use some very strong treatment (hit my Community name to see my story)....... but I am doing great and living a better life than I did during those first 14 years.

    The link I gave you takes you into the Lymphoma Action Site. There is some great information about blood cancers for you to have a look at.

    The one thing to understand is that blood cancer on the whole can not be ‘cut out’ unless it is endangering life..... it’s like a blocked drain!!! cancer cells build up and forms a mass and this has to be broken down, it has to be unblocked and the normal treatments used would be chemo and/or Radiotherapy...... sometimes hard work but all do-able.

    I don’t know how old your mum is but I have talked with folks in their 80s who have successfully went through treatment and are doing good.

    Been encouraged.

    I am always around to help out, answer questions and do come back once you know more.

    Highlander ((hugs))

  • Hi you should keep asking for tests to be carried out I went to the doctor with swollen painless lymph nodes and sent to the hospital and after being told there was nothing to worry about as it was nothing sinister I was finally diagnosed with stage 3 lymphoma 9 months later 

  • Hi and welcome to the Community.

    We do have a number of Lymphoma Support Groups.

    Hodgkin's Lymphoma

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    T-Cell Lymphoma

    Follow the link I've created above to the group for your type of Lymphoma, join the group, then hit ‘start a discussion’ and you are ready to go.

    Will keep an eye open for you.

  • Hi - sorry to hear that you had to wait a while for your diagnosis, I hope you are feeling okay now and getting the treatment you need :) Do you mind me asking - was it a biopsy that ultimately diagnosed you with the stage 3 lymphoma? 

    We have had a little bit of progress in that the consultant is due to ring my mum on Thursday to discuss next steps, but we are concerned that her scan results are now almost a month old, and that instead of getting a biopsy he might order another scan - which will delay the biopsy again by weeks. My mums stomach and leg are now very swollen, and she is complaining of pains in her stomach and now under her armpit as well (that she did not have before), and the lump is quite clearly larger to feel than it was before, so we are worried this is indicative of something growing quite rapidly. We are really hoping that the consultant will press forward with a biopsy to hopefully help with a diagnosis, but understand things are very difficult in the current climate and I imagine waiting lists are quite long. The waiting really is the worst part... 

    Thank you again for your reply, 

    Best wishes,

    Rosie

  • Hi,

    I am so sorry you and your family are going through this. The waiting is horrendous and especially so when you are already very anxious. I don't know how much I can help but all I can say is I can really relate to that. I pretty much have a panic attack every time the phone goes off now so I can only imagine how horrible it is for your mum sitting around waiting, hearing nothing and having so much pain. 

    I was diagnosed last week with Hodgkin lymphoma but it took a very long time for them to get to that diagnosis. Mine was definitely more than a 2 week wait time and I appreciate that everyone is very busy because of covid-19 but it really is agonising having wait times like that. All I can say is that once they do a biopsy and you have those results they should know more and be able to work out a plan. Never think you are being impatient or demanding, it is perfectly okay to ring up and ask. I have a lot of anxiety around them thinking I'm being impatient but every time they tell me it's okay to check progress. 

    I really hope you hear news soon. Wishing you all the best,

    Lily