Struggling with feeling in limbo all the time....

Good morning Em44, regarding your question about the T scores are T with the number after tells you the stage/size the cancer is. For example I was T2 so those with T3 means the tumour is larger than mine and the N score means how many lymph nodes are affected. I was N0 so no lymph nodes affected but it didn’t stop my oncologist zapping them anyway. You can find information about these scores and their meanings on the cancer research site. The waiting is so frustrating isn’t it and waiting for results of the scans I think can be a result of staffing as my hospital took 8 weeks to get the results for my MRI scan. You did say that your surgeon said rectal cancer which is different with regards to treatment for anal cancer. I am glad you are pursuing the search for answers and hope that you get it sorted. People do find at the beginning it seems a long waiting game and then when you finally get your diagnosis everything seems to happen at once. Please come back and let us know how you get on.

Thanks so much Jaycee12 that's really helpful...to be honest I know so little I just know he said it was squamous cancer (so not sure what that's classified as) and since they investigated whilst I had surgery to remove the extremely painful lumps I had externally, I appear to have a mass of tissue that pushes out on having a bowel movement, again none of this has been explained to me. Guess I'll have to hold on tight & wait to see the oncologist to find out proper details. Yes the waiting is hard.  Just worried me the oncologists surgeon didn't even appear to have me on the system - ahh I'll just keep calling & hoping I'll appear on someone's system soon! Then as you say it'll probably go really quick and I'll be panicking it's moving fast ha ha.  Will try to keep smiling along the way!  

Hey Em44 ,

It really shouldn’t be down to you to chase this up but unfortunately today it’s all too common that we have to do this! Keep calling is the best advice I can offer, it’s unacceptable that you weren’t even on the oncologists system when your diagnosis was on the 8th of February!

I see that Jaycee12 has explained about the staging etc., my staging was T1N0M0 which translates to stage 1 sized tumour I believe this to be 2cms or below, N0 meant there was no lymph nodes affected & M0 means the original tumour hadn’t metastasised to any other organs. Regarding your diagnosis of squamous cell carcinoma, this is the most common type of anal cancer & the one that most of us here have been diagnosed with. 

If it were me in your position I would keep chasing it up until you’re seen by the oncologist & get a treatment plan in place. I hope you hear something very soon. 

Nicola 

Many thanks Nicola, appreciate your reply & that's really good to know. At least I'll understand when they do tell me the full diagnosis.  Yes I'll try them next week again, the oncologists secretary was quite sharp & dismissive to me when I called, so I don't think that helped either with how I felt on Friday.  But if need be I'll re-call the nurses and ask them to help.  I know they're all very busy too, think I'll feel better when I know I'm registering on someone's system at least x 

Hi Em44,

I'm sorry to hear that you are having to deal with this on top of being told you have cancer. I can feel your worry and stress. I agree with Nikki65, call everyday until you get your appointment booked. This is your health and life. One lesson I learned from my cancer journey is that you really need to be your own advocate. Its hard when you just want the health experts to do their job and follow up accordingly.

Hang in there and keeping you in my thoughts!

I am so sorry you have been kept waiting for so long, no wonder you are struggling.  I don't know where you are, but I think the time you are waiting around is the exception rather than the norm and as you have already been advised, keep ringing.  It is hard enough with this diagnosis already without the patient having to chase, you shouldn't have to do this and you are not overreacting in the slightest.  I do hope you hear from them very soon, once you have a treatment plan in place at least you will feel a bit more in control.  We are always here to listen if you need to share your worries, especially before bed!

Irene xx

Thank you all for your encouraging messages, really helped me to keep persisting this week & not to feel like I'm being a pest!  The nurses have been wonderful and done all they can their end to help find out what's been taking so long. Apparently it's likely to be as I started in one hospital but need to go to the larger Coventry & Warks Hospital who have a specialist team who deal with this type on caner.  But I did think we do live in digital society so really couldn't understand the delays. I finally received an appointment to meet the oncologist towards the end of next week - so I imagine the rest will just follow through in normal time-scales now. It's funny as part of me just wants the treatment to start & get it over with, but part of me is anxious and then worries about it all - can't win sometimes, just mix of emotions! At least there's some progression and I'm not feeling so lost in the system, thanks so much! x

I am really pleased that you finally have an appointment.  You definitely shouldn't have had to wait this long and hopefully your treatment will start very soon afterwards.  Please let us know how you get on.

Irene xx

PS It might be an idea to have someone with you, I used to get so anxious during appointments that the minute I left the room I had forgotten most of what was said, or had it in the wrong order.

Thanks so much Irene, yes you've reminded me I was meaning to ask if I could take anyone with me - I have my mum, dad & brother who'd all like to join me but I'm assuming only one or maybe two ,max would be allowed. I'll ask the secretary. I can feel I'm getting anxious already when I think of it X

Hi Em44 , I was also diagnosed at my local hospital then referred on to 2 other larger hospitals as my colorectal surgeon was at a different hospital to my oncologist (both are part of the specialist team that deal with cases of anal cancer in the North East) but having said that I was seen very quickly following my diagnosis, possibly a week & a half later. So I think you’re correct in being suspicious about the reasons given for the delays! Anyhow you have your appointment now & hopefully things will more a little swifter from here. The way you’re feeling is completely natural, I remember feeling exactly the same way, I was very apprehensive & anxious about starting treatment but also on the flip side couldn’t wait for it to start! I also agree with Irene, either insist that you have someone accompany you to your appointment (there should be no reason why you can’t now have one person with you) or ask if you can record the appointment on your mobile phone as there’s a lot of information to absorb at these early appointments. I hope it goes well for you. 

Nicola