Possible Follicular Lymphoma

This is a long story, so do bear with me . 

This is weighing heavily on my mind, and may be something or nothing - I hope you don’t mind me sharing .

Recently ( in the last month) I have had to undergo numerous invasive biopsies and tests - some very unpleasant, all started because of post menopausal bleeding - that started 6 months ago. I was on the fast track cancer pathway . An initial biopsy taken during hysteroscopy thank fully  proved benign,, however at the time the uterine lining was noted to look suspicious and vascular. Because the biopsy was benign I was signed off. The bleeding however continued . I went to my GP two months later to look at how this could be treated. She referred me back to the hospital, who then said they wouldn’t see me , but would if it continued in 6 months. She then referred me to the private hospital under the NHS as she was concerned . 

I under went a transvaginal infrasound - because the consultant was a little concerned this was then followed up with an MRI . 

 The most surprising and unexpected discovery were suspicious enlarged linguinal lymph nodes around 2.8 cm and quite round. Because of this the consultant arranged a meeting with the MDT at the local NHS hospital I saw the original Gynaecologist - who was brilliant .  They called me in for an urgent lymph node biopsy, and another hysteroscopy again urgently . I had these - and was awaiting results.

 I had the second hysteroscopy at a treatment centre the consultant there went through my history, and I mentioned the lymph node biopsy - he checked on the results, and asked me if I had been contacted yet . I looked at his computer screen and saw the words Follicular Lymphoma ( I didn’t have a clue about it)  .but couldn’t read anything else . I asked him if he could tell me what the results were and he said no, that it was being sent off for more tests. But that I would definitely be contacted  i got an appointment letter for the 10th , the following day recieved another  letter cancelling my appointment at the hospital on the 10th and giving me a new one on the 3rd, I rang the appointments to say that I couldn’t as I will be in Paris for a few days, so speaking to the appointment clerk I remade  an appointment for the 17th.

The next day this past Wednesday I got a phone call from gynaecology oncology  (  ) to ask if I could come in on Tuesday 3rd as they wanted to see me sooner. I had an internal meltdown at the word oncology - and told them I was away. ( They were very nice )- but that I could still come on the 10th if that was still open. Wednesday afternoon was a mess. I spoke to my partner and said though it may not be anything I felt really anxious  - he suggested we cancel Paris, I then thought that I would ring back and ask them how urgent it was , and would a week make a difference- as we could cancel the trip. Lots of toing and froing, and the lovely nurse rang me back in the end and spoke to the team and consultant and said it was ok to leave it a week. 

Sorry this is such a stream of thoughts and anxiety. I know that it may not be anything and that they may have just they found an earlier gap, or that misread and maybe it said ‘does not have’ before the words follicular Lymphoma . Or that I may need more tests. But this is weighing heavily on my mind. As I would expect them not to ring /‘and not to be oncology and if they had to reshedule would it not usually be a later appointment?

I am over thinking, but would love some feed back on this, something to calm me down . I wish I knew the facts - then I can deal with it, but not knowing and having to wait another 10 days is challenging. 

Thank you so much for your thoughts. 

  • Hello caromen

    I wanted to reply to your message but I'm also aware that you're currently away in Paris and so I hope that my message doesn't cause upset. 

    I'm sorry to hear that you've been dealing with some ongoing health concerns and that, despite multiple appointments over the last few months, you've been left with a lot of uncertainty and unanswered questions. It's understandable that you've been feeling anxious about things. 

    It's good to hear that you now have an appointment with the specialist next week. Try not to worry too much about the wording of the letter and the type of specialist you're going to be seeing. It's likely that this was a generic appointment letter that was sent and hopefully when you see the team next week, they will have all the information needed at hand to be able to give you some reassurance about your symptoms. 

    We know that for many people this period of waiting and uncertainty can be really difficult. Hopefully while you and your partner are away now for a few days you'll be able to keep busy and distracted and enjoy your time. Worrying won't change the outcome of the appointment but it will impact your trip so have an extra croissant and soak up Paris. Next week will come soon enough and whatever information you're given we'll be here to offer any support you might need. 

    Have a lovely trip caromen and keep in touch. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thanks so much for your kind message Jenn, 

    I am having a lovely time in Paris, back tomorrow.

    During the day today I did receive a phone call from the hospital. I didn’t pick up, but then got a letter from Heamatology Oncology and they want to see me on Monday. And then Gynaecology oncology on Tuesday, so I know the results won’t be benign. But at least I am gettigg by my head around it, and will know more then,

    Will report back then.

    C

  • I'm sorry to hear that, Caromen. It sounds like the specialists are being proactive now, which is positive. 

    If it would help to chat with one of our nurses before your appointment on Monday for some advice and support, you can call them on 0808 800 4040, Monday to Friday, 9am to 5pm. 

    Enjoy your last evening and safe travels home tomorrow. 

    Keep in touch.

    Best wishes, 
    Jenn
    Cancer Chat moderator