Worrying Letter

Hello everyone, I am new here.....

I have had a gastroscopy , then an abdominal ultrasound, then urgent CT, then a liver/abdo MRI in the last month. The MRI was on Friday 30th and I received a call on 4/1 inviting me to GI Clinic on 10/1.

Today I received the appointment letter - probably it's standard but it has made me worry more because of some of the wording :

"if you are added to a waiting list for surgery, the Clinic nurse will take swabs  for MRSA"

..........I thought the swabs can only be done just before surgery, so I am wondering about the rush?

"you have been offered the next available appointment"  

..........I didnt expect it to be so quick, thought MRI results take 1 - 2 weeks? I was also surprised at how soon the actual scan was done

" It is vital that you attend your first appt and v importantt that you are ready, wu=illing and able to attend any appt made for you in the next 2 weeks."

......  I already confirmed this when they phoned yesterday.

"If you have any unavoidable commitments planned over the NEXT TWO MONTHS, please inform us immediately, so thta we can apprpriateky plan for any further investigations or treatment you may need"

...I was alarmed about the next two months...AND I amm n=booked to be abroad 8/2 to 27/2

Has anyone else had a letter similar to this?

Results so far

My Ultrasound and CT identified a "well defined solid soft tissue mass legion located in the portocaval space compressing the anterior wall of the IVC . It measures 4.6 x 3.4CM and could be arising form the 2nd part of the duodenum. associated solid round mesenteric nodes"  ANYONE IN A SIMILARE POSITION? 

TDx

 

  • Hello TeddyD, 

    Just to let you know our nurses are not online over the weekend but they will respond to you very soon. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Dear Teddy. You're in that horrible between place when you don't know what is happening. It is one of the worst times and I remember trying really hard to understand what the implications and possibilities were before my results as well.  It is like watching a tidal wave swelling on the horizon and knowing it is coming your way. But it will pass. There is no way of knowing anything right now, but the fact that your tests are being completed quickly is good news and provides the best way of getting on top of this. Not everyone has cancer when the digestive system is impacted. My poor old Mum had diverticulitis, just as an example. It turns out I did have a problem, but that was first diagnosed 12 years ago. All you can do is whatever you need to, to get through the days and hours. It is an endurance feat and very difficult, but you'll look back on it one day. This time shall pass. 

  • Hello TeddyD and thanks for posting

    I appreciate this must be a worrying time for you but hopefully you will know more about your situation very soon.

    When things happen so quickly it can take us by surprise and cause even more panic but try and keep a balanced mind for now and not let your thoughts run away with you too much.

    It sounds like the letter is standard but at the same time is trying to prepare you to the fact that some surgery is probably needed in your situation from what they have found.

    I'm afraid no one here can exactly say what the matter is and it will only be the doctor who has all your information from the tests and scans who can give you more details.

    Masses can be the result of a cancerous or a benign (non cancerous) tumour, whilst other information from scans may give further information to determine the severity of the situation. Often taking a tissue ( biopsy) sample or removing the entire mass is needed to confirm what it is and guide what the next steps are in terms of treatment.

    I do hope everything works out okay for you, do let the team know about your holiday when you see them and write down any questions you may have.

    Do get back in touch if you have more questions or if you prefer give us a call on the helpline, we're here weekdays 9-5 on 0808 800 4040.

    Best wishes

    Naomi

  • Thank you so much or your reply. I am calm on the surface, nobody else would know about what is going on inside, so it has been good to be able to put some of my concerns out there in this forum,  safely, and anonymously

    It is clinic day tomorrow s I am prepping my questions a you suggest.

    Just for background, my daughter (34) is just recovering from major abdominnal surgery. Long story short:- supected bladder infection to suspected bladder stones to  diagnosed large complex ovarian cyst then as abdomominal tumor, suspected Germ Cell Tumour. Surgery found a 21cm x 24cm tumour which was unexpectedly Benign and a Sex Cord Stromla Tumour. Consultant said could be a hereditary gene ...

    Now I've got this gong on and am wondering about GIST. I will mention to Consultant tomorrow.

     

    Thanks again for your support. TeddyD

  • Thank you so much for your reply - it's really helped, and I feel better prepared for tomorrow's appointment. The appointment letter didn't suggest I take anyone with me, so I am just taking a few written questions to remind myelf of what I would like to ask.

    Thanks again. 

  • Hi

     

    Just a little update.

    Saw consultant yesterday - he confirms an "unusual"  solid mass/tumour approx 4.5cm. Discussed at MDT meeting and decision made to  refer me  to another consultant at a different hospital where I will have  a gastrosopy with ultrasound for them to take a biopsy. Just need to wait for appointment now.

    I was asked about family and he was interested to hear about my daughter and said they had already included checking for a stromal tumour as part of plan.

    I am fine now and just going with the flow, although I did explain that I am unlikely to forego my trip 9-27 Feb so hope to work around that. 

    Thanks for your ongoing support.

     

    TDx

  • I had that same worrying letter following an MRI, although my journey is not quite the same as yours. I was referred on 2 wk pathway back in June for gyne issues and blood test picked up raised CA19.9 tumour marker(typically pancreas). Sent for CT scan - nothing found. Levels continued to rise Sept and then December so referred to Upper GI and sent for MRI of pancreas and received letter for appointment  which took place yesterday. In my case they have found no lesions on pancreas or liver but have said they still cannot rule out cancer. Like you I have been referred to another consultant at a different hopsital and will be having further tests - mentioned the gastroscopy with ultrasound - also now awating appointment.

     

    oh and I'm still under gynae as well - not cleared there yet either!!

     

    Anyway, wishing you well on this unwanted rollercoaster of a ride

  • Thank you for sharing that Leni56. That is so helpful - sounds like some of our journey is running on a parallel path. It would be great if you could continue your posts and I will do likewise.

    Wishing you well.

     

    TDx

  • Hi

    I am having Gastroscopy on Friday with ultrasound and biopsy. I have become conscious of a lymph glad on my neck for the past few weeks and then over  the last week my throat feels different too. Not sore but as if I am going to swallow a tonsil! I saw GP today just to get it checked before procedure on Friday - thought I might need antibiotics or something.

    2 doctors had a look - declared it "odd" and I am now on the 2 week pathway to seee ENT Consultant. Obvious question - is all this linked. Its got me wondering about possibe lymphoma now. 

    TDx