Waiting for treatment

Hi Willow63 ,

It seems the answer these days is how long is a piece of string & it’s just not good enough!!

My path was a little different as I had surgery to remove my tumour first before embarking on a clinical trial for my chemoradiotherapy so I had a healing period in between, I might add that this was also pre-pandemic & also pre-strikes!! 

You must be around 3 weeks on from your diagnosis now, is that right? Have you received your staging? Have you met with your oncologist yet? Have you discussed a treatment plan? Sorry that seems like an awful lot of questions but the way things are in the NHS at the minute this all seems to take a little longer than it did when I started out just over 5 years ago! Once you’ve had your diagnosis your case is presented at an MDT (multi disciplinary meeting) where a surgeon, oncologist, radiologist etc., will discuss your diagnosis & decide on the best course of treatment for you. You should then get an appointment with either your colorectal surgeon or oncologist…. If chemoradiotherapy is decided as the best treatment for you then you’ll go on to have planning scans etc., to map your radiotherapy prior to treatment starting & tiny dots tattooed to assist in lining you up on the radiotherapy machine each day but the planning scan etc., is all done at one single appointment. 

The way you’re feeling is completely normal, I think we all felt that way once we’d received our diagnosis, I certainly did, I was on the edge of my seat every day waiting for phone calls or appointments via the post! Don’t ever be afraid to chase things up with the hospital, especially the way things are at the moment! 

I hope you get news soon, let us know how you get on. 

Nicola 

Hello Willow63

The time between diagnosis and treatment starting is unbearable; I remember it well and I don't think you are an impatient petulant moaner in the least.  I am assuming you have called the hospital to find out what is happening.  I don't know who you spoke to but starting from the beginning, to the department that first did the investigations to person who told you your diagnosis, I would ring as many people as possible, and keep ringing.  The doctor who gave you the diagnosis, he must have a secretary, it will probably be on the hospital website.  Call her too to see if she can help.  You shouldn't have to be doing all this and I am hoping that you will hear something very soon.

It is all so unsettling for you and I am so sorry that you are having to wait.  Please let us know how you get on.

Irene xx

Hi Willow63 

I’m new here too and have been lurking and reading all comments which have been invaluable up to now!

I started my treatment last Monday (10/4)and was formally diagnosed from a colonoscopy that I had at the end of January.

After and MRI, CT and PET scan, there was a bit of delay as my tumour was right on the border line between being anal and rectal cancer so my oncologist wanted an investigation under anaesthetic to be carried out to ensure they were treating me right. This was carried out on 9/3 and confirmed shortly after - this is where they staged it as well.

I’ve been told I’m on a fast track because of my age (45) but I don’t know how true that is…

There were certainly times I felt that the waiting was unbearable between appointments but am grateful that my oncologist is so thorough and there are no question marks.

Treatment is fine so far - the standard chemo infusion on day one with radiotherapy and Capecitabine tablets every week day for 5 and a half weeks. I’m quarter of the way through and feeling good so far! 

I hope you get some clarification soon and are able to relax between appointments. There’s lots of support on here when you need it.

Claire x

Hi Nikki, it's 3 weeks tomorrow since my diagnosis meeting when the surgeon at my local hospital gave me the news.  He also told me I was being referred to a different health authority where there was a specialist in my condition.  I haven't heard from this other health authority yet or met my oncologist, though I have received a copy of the letter that has been sent to my GP confirming  the diagnosis and the staging. Fingers crossed I hear soo , I will be calling them again tomorrow 

Hi Ireme,  currently I am just calling my support nurse who was introduces to me at my diagnosis appointment.  I will flow your advice and call the hospital I think.  Thank you

Hi Claire, so good to hear that you are getting your treatment, you sound very positive which is great news. I think looking at your timeliness I have a few weeks to.wait, possibly so I will practise patience.   Sending you hugs and positivity for your treatment journey, thanks 

Yes Willow63 pester the heck out of them until you get an appointment!! It’s appalling that you have to do it but keep calling, sometimes it’s a case of he who shouts loudest! 

Nicola

Hi Willow, Waiting for treatment is the WORST! They hustled me along briskly, I'm happy to say, and I was in treatment only a couple of weeks after the diagnosis. 

Of course you want it out! That's not impatience, petulance or moaning, that's a good healthy reaction!

I concur with Nikki. Bother the hell out of your medical personnel until you're satisfied. 

And stick with us!

Hugs

Suz

Hi Claire, (Cavab24 ),

Just to say welcome to the Macmillan online community although I’m sorry to hear of your diagnosis. 

It’s good to hear that your treatment is underway & going well so far, as much as I was dreading the chemoradiotherapy I found it flew by once in the routine of those daily hospital visits & I used to so look forward to the weekends where there was no tablets to take & no radiotherapy! 

You sound as though you have a great attitude & this will help carry you through the rest of your treatment. 

Wishing you the very best for the coming week & beyond. 

Nicola 

Thank you for the welcome Nicola.

I’m surprised how quickly the first 2 weeks have gone so fingers crossed the rest go as fast!

I’m reluctant to post anything too positive at this point in case I jinx anything so will keep quiet for now and chip in and help wherever I can 

I’m so appreciative of all the posts to look back on and I’ve found the search function really helpful - I’m so glad I found you.

Claire x