Follow up appointment

Hi Squeak. 

I was told I would have scans every 3 months for 5 years so far I've had the 3 and 6 month ones waiting on appointment for 9 months. My oncologist did say they might increase the time between scans and i have read on here of that happening. Im sure the cream will take care of your skin cancer. If you are worried about anything re the anal cancer and scans give your specialised nurse a ring, I ring mine and they are more than happy to help. Sending hugs. Xx

Hello Squeak

As Bungle said I don't think you are done with scans just yet!  They will keep on checking you , they may add a bit more time between each scan (ie more than three months) and some hospitals, if everything is clear at the three year scan, totally sign you off any more treatment.  Others carry on for five years.

I also had a skin cancer diagnosis not long before my treatment started; basal cell carcinoma (BCC), a very small lesion on my chest which would refused to heal.  I had the cream too, and although it looked a bit angry for a while it did the trick and I have never had any problems since.  If you have BCC please don't worry, it really is easily treatable and absolutely nothing like anal cancer!  In fact, my father-in-law had them crop up all his life and used to go to hospital and they would burn them off (painlessly).

We all sometimes block things out when talking to the oncologist, I know I did!

Irene xx

Hi Squeak,

I had one scan at six months, and after that just regular (3 months then 6 months) appointments with oncologist and he just has a feel of my groin for lymph nodes and the lovely DRE. 

I think it must depend on the hospital you are treated in. I have two more appointments to go and then I am five years clear, but after that three month scan the oncologist told me I was done with scans and there has been no mention since. You could ask someone from your medical team - I remember when I was told how the treatment plan would go I was just overwhelmed, and decided I would just wait for each appointment as it came, so the staff understand how confusing it can be for us and I'm sure they'd be happy to clarify this to ease your mind.

My only experience of skin cancer like the one you have was a friend who developed a patch on her nose. When she told me she had been given chemotherapy cream I was amazed but sure enough after a few weeks it was completely gone. I believe it is the same chemo drug that we have (5FU/capecitabine) which I guess is logical enough.

Do stay in touch with your medical staff, they are there to help and will be more than happy to reassure you and answer any questions.

Take care xxx

Hi Squeak , 

I had MRI and full body CT at 6 months , then I think I get seen every 3 months for DRE . Oncologist said I’d have another full body CT after a year but no more MRI’s . 
I also have to have yearly colonoscopies or Sigmoidoscopy as they removed 2 polyps at my pre treatment colonoscopy which had highly displasic cells . So that is giving me anxiety and I’m trying to get my gut as healthy as possible .

i feel more anxious now than I did during the treatment .

Hope your skin heals up soon with no problems .

best wishes

Sharon  

Hi  Squeak. 

I know what you mean about going cold turkey, I’m half not yet half way to my 3 month scan and it’s a stressful wait.

Looking through the posts it seems there can be a difference in follow up scans etc so I looked at what my hospital say about it to get an idea.

I found that follow up after chemoradiotherapy may differ between hospitals but it will likely depend on your initial staging and specific treatment.

I’ve checked the protocols at the Christie where I had treatment and for standard Chemoradiotherapy they have an MRI and clinical assessment for all at 6 months, clinical assessment for all at 9 months and 12 months, CT for all at 12 months, but not everyone has an MRI at 12 months, basically they put you into low and high risk groups

The main difference is for MRI scans after the 6 months scan and for clinical reviews after the 12 months review.

Bothe groups have an MRI at 3 and 6 months then the high risk group should have and MRi every 6 months after the 6 month review up until 24 months and then one at 36 months. The low risk group may have one more MRI at 36 months or the last one is at 6 months.

Both groups have a clinical review every 3 months up to 12months but then the low risk group have one every 6 months up to 36 months and then every 12 months up to 60 months. The high risk group have one every 3 months up to 24 months then every 6 months up to 36 months and then every 12 months up to 60 months.

Both groups have a CT every 12 months up to 36 months.

There’s also a note to say that some surveillance for late effects may continue beyond 5 years.

Easy to see why they wouldn’t give you the full detail of it all but if you speak to them they should be able to provide you with a good idea of what to expect.

Monty x

Hi Squeak. ,

It seems that surveillance schedules vary slightly between hospital to hospital/consultant to consultant, having said that you should definitely be scanned again at 6 months. I cried the day of my last treatment, that was the first time I’d got upset in from of my team but it’s like you’ve said you go from the security of seeing medical professionals every day to being on your own until your next follow up appointment & I for one found that pretty scary even though I knew they were only on the end of the phone. 

I was also diagnosed with 2 basal cell carcinomas on my back a short way into my recovery & there’s also been another couple of members that have had the same issue, it’s strange isn’t it? Mine were dealt with at the dermatology appointment that they were diagnosed at, just numbed & scooped out, a small dressing put on each & no follow-up needed. I’m back to dermatology on 1st August to get something else checked on my arm this time, hopefully nothing to worry about but they couldn’t decide from the digital images sent over from my GP. 

Nicola