MRI results

Hello Hamfan21,

Just so sorry to hear this. I can only imagine that after 4 years of clear scans you must be reeling.

It sounds that nothing is confirmed yet and you have been given very little information at this point. It may have been helpful if they had waited until the MDT review had taken place on Friday before giving you this information as there is nothing you can do other than wait, and of course worry. 

I can’t give any helpful advice but absolutely feel for you at this time. I very much hope that on Friday you will have something more than the vague information and of course hope that it turns out not to be reoccurrence. 

Everything very much crossed for you at this time.

xx

Hello Hamfan21 

I am so very sorry to me reading this, you must be in absolute shock after receiving clear scans all this time.  And I am also sorry you had to hear it from the nurse over the phone, like PEB24 I  feel it could have waited until after the MDT on Friday as I can imagine how your mind has gone into overdrive.

I hope you hear back from the hospital with the next steps to ride you of this once and for all.  Of course I am hoping too that it turns out to be a false alarm.

Please let us know what they have planned if it is a recurrence, there are quite a few people on here who have gone on to have further treatment and who are now doing well.

Sending you a big hug

Irene xx

Hi Hamfan21 ,

I’m so sorry that you find yourself in this situation. It really is the last thing you expect when you’re 4 years down the line isn’t it?

I too will say from a patient’s point of view it would have been so much better for you if the MDT meeting had been held first with it only being a few days away rather than disclosing information that hasn’t yet been fully confirmed. I can kind of understand from the hospitals view also regarding full disclosure etc., but that won’t stop you from worrying until you’re given an appointment after the MDT meeting has taken place will it?

Once again you’ve all of my sympathy right now. Sending you a big virtual hug. Please keep us updated. 

Nicola 

Thank you all so much for replying. 4 years ago I was waiting for treatment to start and I was in turmoil. 

Update...my colorectal nurse called after the MDT. It's thickening of the anal canal that has shown up on the MRI. I was so scared they'd say they'd flagged a tumor/lymph nodes, it had come back and spread in pelvic area ...... Anyway, I'm getting booked for PET scan and also EUA and biopsy. I asked if that was all that showed up and she said yes. But they need to rule everything out. I have a stoma but also use my back passage and have done more frequently recently so I'm just hoping that this is the reason for the thickening and there's nothing else, I know the radiotherapy would have damaged tissue. I feel better than I did but I'm still worried the PET scan will show something else up. If it does come back she said it would be referred to Nottinghamshire Anal cancer MDT. I didn't ask anything else as I just want to concentrate on getting through these next appt. Sometimes I don't know if I even ask the right things. 

I'm just so frustrated that nobody had called to tell me it was going to MDT because of what was picked up. I always chase my results. I didn't in the early days because everything was happening fast. After treatment, and surveillance scans I just assumed they'd call and I've always thought 'no news is good news' I now feel that isn't the case and that I've lost the trust a little. 

I know they're being thorough but also so frightened they're keeping something from me, but they have to tell me everything, don't they? 

God, this never ends. I was in such an amazing place until this week.

Thank you all for reading this ramble x

Hello Hamfan21 

I know your mind must be absolutely racing but they wouldn't keep anything from you, I am sure of that.  But I feel for you going through this turmoil and fear, and I am keeping everything crossed  that it all turns out to be nothing.  I know that all the good wishes coming your way don't alleviate what you are going through right now and I wish I could say something meaningful.

Thinking of you, (and please keep posting, it is never a ramble)

Big hug

Irene

Hi Hamfan21 ,

That all sounds reassuring although I can completely understand that it’s of little comfort to you right now & I think we’d all feel the same in that situation & you’ll be up a height until you’ve got the results from the PET scan & EUA. 

I also understand your frustration at having to chase your results & outcomes/next steps. We are our own best advocates especially where our health is concerned but come on surely it’s the Dr’s job to make sure test results etc., are reported back to their patient!! I recently had some blood tests & after hearing nothing for 2 weeks afterwards I took things into my own hands & rang around to chase them up & sure enough the results were sat there! 

I don’t think they’ll be keeping anything from you, I just don’t think it’s the way things are done these days, they would be held accountable if something like that happened.

Try & keep your chin up (I know that’s easier said than done) but know we’re all here for you.

Nicola 

Update.....I had the PET scan on 31.10. 25 I was then called to book in my day on the surgical ward for an EUA and biopsies. Yesterday, I was admitted for the procedure.The surgeon came down to see me and asked me if I'd seen anyone about scans etc. My answer was no I just knew I was in due to the findings of soft tissue thickening on the MRI and following MDT, I'm here.  I've had no call for PET results, which I hadn't chased up as they said 2 weeks. He was able to tell me then they were clear, nothing lit up. At which point I started crying. It's been a long few weeks of absolute stress. He wasn't happy and is feeding it back that I wasn't told anything and he can see how it affects mental health, causing unnecessary stress.  He later came to see me at the end of his day and told me that during the procedure what they saw looks like radio damage. However, we need to get the results of the biopsies. I made a point of asking for time frame and who will relay this info to which he replied 2 weeks and the nurse will call unless I'm called to the consultants clinic before.

I can't believe the relief. Thank you all for your lovely support and I'll keep you updated. 

Hello Hamfan21,

What an immense relief for you. You have been through so much stress and fear and I am so pleased that it seems that you are clear.

It certainly sounds that the lack of communication could have been avoided and managed more professionally. I’m not surprised that you cried and hope that you are able to feed back the effects that this had on you. There are definitely some learning points for your team. 

Obviously very much hope that your biopsy results are clear and get fed back to you promptly. 

xxx

Oh my goodness Hamfan21 , I can literally feel your relief through your post!

I’m so pleased that your surgeon is feeding back his feelings about the lack of contact regarding your scan results, I wish there were more Dr’s like him around.

Hopefully you’ll hear something really soon, I’ve everything crossed for you for clear biopsy results. 

Nicola 

Hello Hamfan21 

Just reading this is making me feel extremely tense, no wonder you started crying.  And although I am sure that you would have rather not cried I am relieved that someone senior saw the result of what waiting unreasonable periods does to cancer patients.  There is a very interesting blog somewhere of a cancer nurse who herself was diagnosed with cancer.  And very hard realisation came to her what her cancer patients went through when they face long delays in getting results and being fobbed off.

But it all sounds so good, and I am so relieved for you.  And please please ring and pester if you don't hear when you should.

Big hug

Irene xx