Newly diagnosed

Hi Coza60 welcome to the club no one wants to join. I can't remember exact time line and order but I was told over the phone initially. I saw the consultant who told me staging and treatment. I had an MRI, a CT and a PET scan. My staging changed after the scans. I had a planning scan in the radiotherapy department and my tattoo dots done. I had an appointment with the oncologist. I also had a picc line put in 2 weeks prior to treatment starting. I was officially diagnosed end July 24 and started treatment end September 24, all the above happened in those couple of months. The treatment as a general rule is highly successful and while not a walk in the park it wasn't as bad as I had expected. Everyone one on here is either going through it or out the other side and will be here for you however you need. Ask anything you want, nothing is out of bounds. 

Go and enjoy your daughters wedding.

Sending hugs. Xx

Thank you for that info, I’ve already had MRI & CT with contrast, Colonoscopy and then an EUA with biopsy so the team at Addenbrookes will have all that information, from speaking with the colorectal nurse she said that the pathologist said some of the slides were not very good either they weren’t deep enough or were unreadable, I’m hoping I don’t have to have more biopsies taken. Do you know if it’s common to have a PET scan as well? 
x

Hey

I had a very similar situation with my biopsy they said it was inconclusive but definitely cancer. They had another MDT and spoke to senior pathologist who was happy I didn't need another biopsy.  I had a PET scan prior to my radiotherapy mapping scan . I hope you wont need the extra biopsy.  Good luck 

Hello Coza60 

Welcome to the forum although I am really sorry to hear of your diagnosis.  You really have come to the right place to share your worries, all of us have been through what you are going through right now and we can share lots of tips and coping strategies.   

You are in that no man's land between diagnosis and treatment starting and we all remember how stressful that is.  And getting biopsies isn't as straightforward as we might think, mine were inconclusive too and I seem to have one procedure after another.  A PET scan isn't always carried out, it all depends on what the existing scans have shown and this will be discussed at the MDT meeting; there are a lot of those going on in the background and the treatment plan doesn't go ahead until they have all the information.

I would have thought that Addenbrookes will either call you or have a face-to-face meeting to update you as to what is going on and what happens next.  In the meantime you have your daughter's wedding, I do hope that you can put your troubles to one side and enjoy the day as much as you can, it is lovely that you don't have to miss this.

Please let us know how you get on at Addenbrookes and when you get your dates for treatment.  We are here to virtually hold your hand!

Big hug

Irene xx

Thank you Irene, I’m looking forward to the wedding as it’s something else to focus on. Do you mind me asking if you felt unwell before you started treatment, I have been feeling nauseous and not eating like I used to. My GP has prescribed anti sickness which has helped a little?

x

Hello Coza60 

I felt unwell but I think it was definitely caused by the shock of a cancer diagnosis.  I lost a lot of weight as all desire to eat left.  But once I knew my treatment plan and before it even started, I began to feel much better as at last something was being done.  I put the weight back on and my husband arranged weekends away. 

Having something else to focus on will be so good for you.

Irene xx

I think Irene the nausea is a mix of quite a few things one of which is not sleeping well as I am having to get up every couple of hours to wee, I did mention it to the consultant and he said that it could be because of the mass irritating the nerves. 
I appreciate you information and I’m sure I will have many more questions as time goes on.

Corale x

Hi Coza60 I think it's fairly common to have a PET scan. I think they use it to see if the cancer has spread to anywhere else and to help with staging, at least that's what mine was done for. X

Bungle1, thank you for that info, at least I will have some idea of what might happen once MDT has been done and they contact me 

Corale x

Hi Corale

Not all treatment hospitals do things exactly the same way but I can give you my own personal experience.

At the hospital I was treated at it was mandatory to have a PET scan, a recent MRI and confirmation via biopsy before they would even accept a referral.  Once accepted my 1^st appointment was with the Oncologist about 3 and a half weeks after the biopsy and at that appointment I was given the staging, treatment plan and potential side effects. I also met the specialist nurse and was given contact cards and emergency numbers etc. The possible side effects can be a bit alarming but they need to give you the worst case scenario so that you’re fully informed.

From there I had an appointment for a mapping scan and 3 small dot tattoos about a week later and started treatment about 2 weeks after that, the staging was adjusted in this period following review of all the available scans.  Before Treatment started I had an appointment at Maggie’s to go through what to expect with the chemo treatment.

I had 28 sessions of radiotherapy combined with oral chemo plus IV chemo on the first day of treatment, the 1^st 5 radiotherapy appointments all came prior to treatment starting and then a slot for the same weekday in the following week was given each day. Once a week they took blood and there was an appointment to discuss those and an examination and discussion with either the Oncologist or one of the specialist radiotherapy nurses.

Once treatment had finished it was 6 weeks before the 1^st check-up and 12 weeks before the 1^st post treatment scans.

I also had to get up every couple of hours to pee and poor sleep really doesn’t help but this did ease for me part way through treatment.

A lot of people report they start to feel less anxious once they have the treatment plan and especially once treatment is underway.

Hope treatment goes smoothly for you once it gets underway.

Monty xx