Following a tonsillectomy in June to remove what i suspected was a cancerous growth, I was diagnosed with a follicular lymphoma in early August. My ENT consultant advised me of the diagnosis, and said he would refer me to Haematology as it wasn’t his area of expertise. He suggested i may get invited for a scan in the meantime. Since then, I’ve been called in for numerous scans (CT, Ultrasound, PET), but not seen a Haematology consultant at all. A Haematology doctor rang me on 10th September, and suggested the lymphoma was only stage 1 and no evidence of spreading, and the MDT team would decide what (if any) treatment was needed. She said i would be called for a face-to-face appointment in the next week or so. Since then i have been called in for an Ultrasound (which she never mentioned), and finally an appointment in mid-October. However, I’ve just had a letter (cc’d from my GP) which says i’ll be referred for chemo and radio therapy. I’m terrified, and have no idea why i need this level of treatment if its so low grade. The doctor indicated she thought treatment could do more harm than good if the cancer is lower grade. I don’t have a nominated nurse to speak to, and the consultant who rang is a locum with no contact details on any letter heading. I would just like to speak to a consultant and dfind out whats happening and why. The initial treatment with the ENT team was really quick and they were all lovely, but since its been an uphill battle to find out anything. Is this normal? (Sorry for the rant!)
A great big welcome @Cressi and so glad that you have found us, your post does sound that you are terrified mostly by not knowing what is going on, the waiting and not seeing a consultant, or having a nominated nurse contact.
I will copy your post to the Blood Cancer UK nurses for you in case they can help @BloodCancerUK_Nurses
The Blood Cancer UK support line is also there for you on 0808 2080 888.
It sounds as if you have had many tests.
I usually find that my letters are signed at the bottom with a name, and then their job title underneath.
Perhaps this will give you the time to write down all your fears, questions and practicalities for your next appointment.
Please do let us know how you get on and really look after and be kind to yourself
Dear @Cressi,
Thank you for reaching out to us on the forum.
I am so sorry to hear what you are going through. Of course you are terrified. This is completely understandable especially as you do not know what is going on. You need someone to sit down with you and explain to you in person what is going on. I hope you have support of family and friends around you. We of course, are very happy to support you here too.
The treatment for follicular lymphoma will depend on your symptoms as well as the stage of the follicular lymphoma. I have enclosed our information for you to read which I hope you find helpful. Follicular lymphoma Whilst the doctor told you that you did not need treatment, maybe following the MDT when your case was discussed this changed but if this is the case, you need to know.
As there are no contact details on the letter that you received, I would suggest calling the hospital switch board and asking to be put through to the haematology secretaries and explain to them what has happened. They should be able to tell you who your contact nurse is and which doctor has seen you and put you in contact. If this does not work please do let us know and we can help you further.
We would be very happy to discuss in more detail over the phone if this is easier for you on our support services line on 0808 2080 888.
Please keep in touch and let us know how you get on.
Take care and look after yourself.
Fiona (support services nurse)
Hi @Cressi and welcome to the forum.
I was diagnosed with follicular lymphoma 7 years ago and understand your concern and worry. I think its hard when you don’t have a clinical nurse you can contact. I can see @Fiona_BloodCancerUK has given you information on trying to make contact with the hospital. I know you shouldn’t have to do this, and it causes more anxiety but it’s definitely worth a try.
In the meantime, it’s important to write down any questions you have - however big or small - ready for you appointment.
I know how you must be feeling. It’s really scary. In here you can say how it really is for you and we will all be here to support you.
Please keep us updated on how you get on X
Hi @Cressi
I’m so sorry to hear about your diagnosis and the challenges you’re facing. It’s completely understandable to feel overwhelmed and scared.
I’ve been in a similar situation with my follicular lymphoma, and I know how important it is to have a strong support system. Remember, you’re not alone in this.
It’s important to advocate for yourself and ask questions. Don’t be afraid to ask questions and push for more information if you’re unsure about your treatment plan.
I know it can take an endlessly long time to make decisions about the best course of action and your treatments and it may seem like a sledgehammer to crack a nut having chemo - your team know what they are doing and it’s based on so many things , size , location, lymph nodes etc etc it may seem that at stage 1 it’s unnecessary , but they can explain the reasons.
I’m am pleased to say that my chemo was six years ago and I’m well 
( fingers crossed)
I’m here to listen and offer support if you need it. Feel free to reach out anytime.