Timescales

Hi Jaycee12 and welcome to the group. In my experience of the early days of diagnosis and scans it would be about 14 days for an appointment to come through. Could your nurse at the original hospital make possibly make enquiries with the Addenbroke Hospital to check the timeframe for your scan? Failing that you could contact PALS (Patient Liason Service) at the Addenbrole Hospital, they can make equities on your behalf. I have found the PALS service excellent. This is a very stressful time and it’s not acceptable to be kept hanging around. Once you have a date for your scan that should alleviate the pressure slightly. I would definitely chase this up, at the very least this will make you feel more in control of the situation. Bev 

Thank you for your reply. I will contact the nurse and ask her about the timescale. 

Hi Jaycee12, 

I’ll second 1in1500’s welcome to the online community although I’m sorry you’ve had the need to find us. It sounds as though you’ve really been around the houses since December! I would agree that someone from your original hospital should be able to chase this up for you. As for your GP not seeing you that just wouldn’t sit right with me, my specialist nurse & my GP both made it clear that they were there if I needed them anytime. As Bev has said if you get no joy please use the patient liaison service. Don’t be afraid to be assertive & chase it up you need to know what’s going on & sometimes I don’t think it’s appreciated how stressful the waiting around can be.

Nicola

Again thank you very much for your reply. Yes it’s been very stressful and I felt the original surgeon has finished with me and moved me onto the hospital who will be dealing with me from now on. The lump I have is really uncomfortable and just want to have it looked at again as I feel it should be tucked inside. I’m worrying that if I have treatment with this sticking out it will cause problems. Oh dear!

Hi again Jaycee12,

I hope you don’t mind me asking but have you been told you’ll be having further treatment or is the appointment you’re waiting for to discuss your options? I had similar surgery to yourself prior to diagnosis, I had an external polyp removed & an ulcerated area on the anal verge biopsied, 7 days later I received my diagnosis & went for CT & MRI scans later that week & was transferred to another hospital to discuss further treatment, this resulted in my tumour being removed surgically as I was very early stages & then although the tumour was completely removed a small area only had a 1mm clearance & I was referred again for a reduced course of chemoradiotherapy. Following my surgery I also had a pretty heavy bleed that took me to A&E mine was due to burst stitches which I was warned may happen & stopped whilst in A&E & didn’t require admission thankfully. I’m thinking like me your original surgeon was possibly from the lower colon team & you’re now being referred to a colorectal surgeon &/or oncologist. I hope you make some headway chasing things up. 

Nicola 

Hi Nicola when I read your profile I thought your symptoms were pretty similar to me. I had the sigmoidoscopy first and they identified the polyp on that one but the other area they said was difficult to access. They said it was an abnormal area extending from the anal canal to the very low rectum with possible adenomatous tissue. I then had the MRI and CT scans before the surgery. They then decided that due to this area they would remove under anaesthetic. The first op which I will add I thought it would involve the polyp and the anal area, he just removed the polyp. Before the operation he came to see me and said they are going to remove the polyp and I said what about the other area. He said we will deal with that and left. After this operation I discovered they just removed the polyp which wasn’t that painful. Two weeks later they said they were going to remove the other area and that the polyp was benign and from the scans it had not spread to the lungs, liver or other areas. Then I went in for the excision near the anal area and I went home feeling completely sore and bleeding. This time I did not see a doctor on discharge and did not receive any discharge notes of what they had done. There was a lot of swelling and I had a bulge coming out and spoke to the specialist nurse after my GP said he would not not know he was looking at and it was the responsibility of the surgeon. She managed to get the surgeon to look at me which was about five days later. He said it wasn’t a prolapse which I think they were worried about. They said it should go down. It hasn’t and it protrudes outside the spinchter. He then said he cut an area out plus a margin and wait and see if it was cancerous. He told me they did not stitch as it was near nerves and blood vessels. I went in hospital after losing masses of blood clots as big as saucers and you could see a stitch poking out. After 4 and a half hours waiting in A and E continuing to loose blood they said there was a stitch at a six o’clock position! They gave me something to clot the blood and I stayed in hospital expecting a blood transfusion. After several blood tests they decided that I was okay to go home. The surgeon said on the 11 March that I was being referred to addenbrookes for a pet scan and should hear from them in the next few days. On the 12th March the nurse said addenbrookes were discussing my case which was actually before I was rushed into hospital. The surgeon just said I think I removed it all plus he took some extra but I may have to have chemoradiotherapy to make sure. I had a booked appointment with him on the 23rd which they cancelled and that was because he saw me earlier after the suspected prolapse. The lump that protrudes is not red or swollen but looks like it belongs inside the anus. I am surprised that the biopsy that had cancer would show if they had all of it but then I don’t know. I am worried that when I go for a pet scan this lump is not being looked at. I rang the nurse to see if I can have it looked at as it is difficult to walk outside feeling it bearing down. I hope this explains things as everything gets confusing.

It doesn’t sound as though you’ve had very good support from your original surgeon or your GP & that’s such a shame! It also makes me realise how lucky I’ve been. Any cancer diagnosis is awfully difficult to deal with without feeling like you’ve been cut loose & not having clarity on what’s happening next & when. I agree that this lump needs looking at soon especially if it’s giving you mobility issues. I was entered into the Plato Trial which involved slightly reduced strength radiotherapy over 23 sessions opposed to the regular 28. I really hope you hear something soon, there’s nothing worse than being left in limbo! Please let me know when you hear anything. 

Nicola

Hi Nicola I have just heard from my specialist nurse who informed me that Addenbrooke’s hospital are experiencing delays with the PET scans due to problems. They are supposed to be calling me to ask if I am prepared to go to another hospital just to have a PET scan so they can progress. The problem with the lump she said will be seen when I have the scan. It may be the Norwich & Norfolk hospital which is about an hour and a half away. I am prepared to travel just so I can get this done. Fingers crossed. 

That’s great news that you’ve had an update Jaycee12, yes I would be like you & I’d definitely travel if possible to get the PET scan done sooner. Fingers crossed they contact you very soon. 

Nicola