Hi Everyone, I was recently diagnosed with low grade follicular lymphoma mid December 2025 and was truly grateful to start R-benda treatment in the last two days of December. I have just received my 3rd round of chemo/immunotherapy 2 days ago and I am doing okay. I will be having my interim CT scan next week to see what’s what!
I know I am early on in my cancer management but I wanted to know if I am not alone as to the feeling of that although I feel very supported by the nursing team who provide my actual treatment in the clinic, I am not altogether very comfortable with my actual consultant? Is this normal and if you have felt similarly what did you do about it? Did you seek a referral to another consultant and how was this viewed?
In my case I sadly feel unsupported by my consultant they lack empathy and sensitivity and beyond providing the clinical treatment I am not sure I feel that long term they are the right consultant for me. Yes I am getting the right treatment…. but I know it’s really important to feel confident and fully supported by all members of your medical team. I think most importantly you want to be on the same page as your consultant.
I was supposed to have a meeting with them between the first round of treatment and my second. They didn’t actually organise this, in fact if the nurse hadn’t asked me if I had seen them I wouldn’t have had a meeting with thim at all after my second round. When this was eventually organised I was quite pleased to have this opportunity as I thought this meeting may give me some time to ask unanswered questions from the diagnosis meeting.. but instead I felt as though I was asking for too much when wanting to ask questions. I felt that they provided no support when I asked them about whether there was a mental health support pathway available to me and even nutrition guidance support via the trust. Instead I was told I was overthinking and should focus on my current treatment alone. In fact they were unprepared for the meeting and made it feel like I was an item on their conveyor belt for that day and had got stuck. This important first meeting post first round of treatment went from being an opportunity to just awkward and uncomfortable for us both and not helpful at all.
I have now see a letter sent to my Gp from them and it felt like we had not been in the same meeting at all and their perception of what happened is very different to mine. I know our medical team staff are stretched within the system but my gut feeling is that they may not be right for me. After all they are going to be my Dr for life. Has any of you experienced this too, I want to be sure I am getting the best chance at the management of this cancer and the consultant and the relationship with them is key to this surely?
It’s a long story but my experience with them so far hasn’t been optimal, I think I need someone more forward thinking, dynamic and most of all understanding. I mean I just had the most important diagnosis of my life…I have Cancer. Yes I completely understand it’s treatable and I am grateful for that and that treatment has started, but at present it is not curable and I need to feel I do have the right team around me. I walked out of the last meeting with this consultant feeling deflated and upset. If I wasn’t a strong person I could have been floored by my experience. I am therefore considering looking at the opportunity to be referred to another consultant I have an appt to speak to my GP next week about it all. Anyone else’s experiences of referring onto another Consultant would be gratefully appreciated 
As patients surely we have a right to have a consultant that aligns with you and has compassion as they will be our Dr for life. Importantly we need to be able to rely and trust them and it doesn’t matter how many questions we or our partners have you can be annoying, yes time is limited for each appt but the last thing is for you to be worrying about the questions you didn’t get to ask or feeling unsupported.
Thank you to you all KVB x
Hi KimVB
My name is Steph and I’m part of the team who look after the Online Community here at Macmillan. May I wish you another warm welcome to the site, I hope you will find it to be a safe place of comfort and support.
I was sorry to hear of your follicular lymphoma diagnosis. The Community is here to support you through this every step of the way.
Whilst you are waiting for members to reply, I thought I would pop in and offer you some useful information from Macmillan:
You would also be welcome to contact our Support Line to talk this through. We're here for you whenever you need us. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
In the meantime, I think it's a really good idea that you have joined the Online Community to speak with others in similar circumstances. I am sure some members will be along shortly to offer you some support soon.
Please do let us know if you have any questions or need further support using the Online Community. You can email us at community@macmillan.org.uk
Hi KimVB and a warm welcome to this little corner of the Community but sorry to hear that you find yourself on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell NHL was presenting.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. You could say I am a veteran.
I can understand your thoughts and concerns……. but I can only reply based on my 25+ years on my Lymphoma journey.
For my Lymphoma I have been under Dermatology, Oncology, Radiology, Heamatology my Stem Cell Transplant Team….. and Physiotherapy.
I am also under Respiratory for my Asbestosis, Cardiology after my Heart Attack and Urology with regards to some Prostrate issues..
Based on my experience these departments have a Head Consultant who I did see from time to time but in the hospitals I have been treated in (Inverness and Glasgow) they work as a team so at times I did not know who I would see and at times I would not see the Dane person 2 appointments in a row…… I actually preferred this as it brought a collection of minds and approaches together into my treatment and care.
Yes some of the consultants were dry and matter a fact…. but I actually found them to be the most effective when it came to my treatment…… but some of the great bedside manner consultants were great to discuss our questions with but at times came across as less effective and did not encourage our confidence……. but the good and not so good care balanced out.
Actually my various CNSs (Cancer Nurse Specialties) were the best out of all the staff as they were able to put everything into an understandable format, good at answering our questions and were the listening ear when we needed it…… we called them our mother hens.
I see that the Community Team have put up some helpful links that you can look at.
Always around to chat.
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
I come from a Construction background….. eventually landing up in Lecturing in an FE Collage.
In construction we start with a clear end in mind and the steps in-between are very clearly set out…….. then we have Lymphoma!!!!….. based my long experience (See my story) as much as you want to nail this all down at times is like trying to holding sand in your hands.
As much as these issues frustrate you the ultimate aim is to get through this with as little hassle and stress as possible.
There were times when my wife and I had to get our pointy elbows into the system to ensure everything was going in the right direction……. I will say that my teams in both Inverness and Glasgow were proactive….. more so after my first Allograft (donor) Stem Cell Transplant failed…… sending my case for a 2nd opinion….. especially to Guy’s in London.
You will see from my story I am now over 10 years out from my last treatment, my High-Grade is most likely cured and my Low-Grade is fast asleep so as my wife says - don’t go around kissing a Princess;)
Mike (Thehighlander)
It always seems impossible until its done - Nelson Mandela
