3 month scan

Hi Ian,

I had similar to you after my 12 month check up. I ended up in hospital & had multiple biopsies. It was a really difficult time, especially the waiting. It turned out to be scar tissue, what a relief. I really hope yours is the same. Your mind will be concentrating on the worst! 

Very best wishes, good luck! 

Pam

Cheers Pam

The oncologist tried to reassure me that its possible the tumor will shrink over time and it's not uncommon. 

There are no guarantees though of course and the alternative is life changing so its tough not to worry.

Will do me best though. Will be a long three months if I lose it now.

Ian x

Hi ,

 I’m really sorry that your follow up didn’t bring you the news you were hoping for. Your response & feelings concerning your results is perfectly normal though, I think we’d all feel a little unsettled. 

I’m really pleased that Lady Tourelle has replied also & hope you find a bit of reassurance in this. Hopefully as the radiotherapy continues doing its thing your next appointment will carry more positive news for you. 

You’ve done so well staying positive throughout treatment & supporting others too. I have everything crossed that it all comes good for you over the next couple of months & you’ll be able to look back on this as a minor set back. 

Sending lots of healing thoughts your way. 

Nicola 

Hi 

I’ve just sent you a DM.

It sounds like you have a stubborn tumor that’s going to take a little longer to melt away!

I know this is not the news you wanted and I’m sorry, after everything you’ve been through. The treatment HAS worked and will continue to work. There is still every chance you will eventually get a total response.

This can happen, I remember my oncologist saying to me “don’t panic if there’s still something there” easier said than done I appreciate. I’m sure other people who’ve had similar experiences will come on to share their stories.

Take time to process then carry on, one day at a time and don’t give up hope.

Sx

Cheers Nic

Didnt you have a similar experience? Forgive me if I got  that wrong. 

Ian x

I had the same after 8 months.  Panic stations!  Turned out to be scar tissue!  5 1/2 years later the panic was unnecessary!  But I understand how you are feeling. Deep breath and look to the future.  It can only get better!

Tbh what worries me is the flare up after 8/9 weeks. I've read that others had experienced it. But what concerns me is the area that is causing concern is sorer than it was a month ago and had similar symptoms to pre treatment. 

This makes me worry that the tumor is aggressive and has got worse over that time.

Any twinge I get now of course sends me into a bit of panic.

I think by the end of this 3 months I will be thinking of the APR as a cure rather than something to fear.

Ian x

Hi Ian,  

Yes I had many flare ups throughout my recovery at regular intervals, they would settle then happen again, then just gradually just got further apart to the point where it very rarely happens now. 

My situation differed from yours slightly though in the way that my tumour was completely removed surgically prior to treatment, this is quite rare & it was only offered to me because of a few different factors, I was caught pretty early, the position of the tumour & the fact that it had only very slightly began to invade my muscle. I had to go through the chemoradiotherapy (Plato Trial) as mop-up treatment as the clear margin achieved during surgery was only 1mm on a small area of my tumour which is cut off for further treatment. 

It’s going to be a stressful wait for you understandably but just try & keep it in mind that the radiotherapy does keep working for a long, long time after your final treatment & this sore spot may be exactly that & this is probably why your oncologist is prepared to wait a little longer, although I completely appreciate the anxiety that this brings! Also SCC’s are known to be slow growing cancers but this doesn’t stop us all in our dark moments imagining it rampaging through our bodies does it? but this is rarely the case.

Also remember you have lots of support here from people that truly understand your concerns & anxieties & if you’re feeling particularly anxious then remember you can explore some of the other facilities that MacMillan offer such as the helpline etc., (I can’t seem to post the link at the moment!) Try & take comfort in the likes of Lady Tourelle &  as they’ve both voiced similar experiences & as Sarah has said one day at a time & don’t give up hope. 

Nicola 

Cheers Nic

I won't lie this has knocked the wind out of me. 

I'm managing to avoid wallowing in self pity. I tend to be more terrified by the idea of life changing surgery and the complications and recovery time associated with it. 

I'm trying to.stay positive. 

Ian x

Hi Ian, I'm so sorry that the news wasn't what you'd hoped for. However, as has been said above and from recalling other posts I have seen on this site, it seems to be the case for quite a lot of people that the tumour hasn't completely gone at that first scan. The radiation does keep on working so that's why they are not rushing in and doing an APR on you now.  Alternatively, the explanation could be that this is scar tissue. Either way there is still every possibility that the results from your next scan will be what you're hoping for. As you know from other threads I have also had that 9 week 'backwards step' and like you have had the same symptoms I had pre-treatment.   I know from my own research and from my medical team that these squamous cell anal cancers are not aggressive tumours so please take some comfort from that.  I have my first scans coming up and am already becoming a bit stressed about them. The biggest challenge for us is to try to avoid panicking and keeping as optimistic as possible (definitely not easy!). The key for me to achieving this is trying to stay as busy as possible to avoid less thinking time. I'm also considering trying meditation and yoga. Another  thing I think is talking to people about how you feel and in particular seeking advice on this site from people who have actually been through the same thing. Our cancer is rare so there's not the opportunity to talk to people you actually know who have had the same type of cancer. Honestly, out of all the places the Big C could have popped up why does it have to be in our backsides?!  I've now lost count of the amount of people who have seen my a**e.    x