So after what has felt like the longest 6 months, today was good news!
I had a lump removed (just outside anus) in April which was SCC and since then I’ve had scans and further procedures. Today I had a review with the colorectal surgeon and was told my recent PET scan, EUA and Colonoscopy results have all come back clear. I won’t need chemo/radiotherapy.
I am relieved as I understand the treatment is tough going but also worried. It’s like I almost don’t trust the results! Is that normal to feel like this? I’m probably being silly especially as I know so many of you are going through much more serious / traumatic procedures.
The surgeon I saw today is a man of few words and I think if he could have just said “all good off you go” he would. I’m very grateful that the consultant who gave me my initial results took time to explain things. The rest of the time I’ve felt like an inconvenience, and everything has just taken so long!
I am now being placed on the surveillance route for regular checks and scans. Really not sure what to expect - any information much appreciated.
I am thankful and grateful and all those things but I’m also utterly, suddenly feeling completely overwhelmed!
I wanted to thank all those in this forum for your stories and insight, it has made things feel a lot less lonely.
Leigh, I completely understand how you feel.Last week my PET scan came back negative, and my oncologist said I was cured! Today I had my chemo port removed after 2 years. My first thought was fear that I would need it again. Now I need to get on with my life, but dealing with this cancer has been a “job” for the past 2 years and I’m not sure how to do this. I was Stage 4 at diagnosis, so I really thought I was going to die. Now I have to shift my emphasis from being a person with cancer to being a survivor. It’s difficult not to worry about recurrence and start making some longer range plans. I don’t have to see my cancer docs for 6 months, which is scary. So I’m working again which helps and making an effort to do things that I have enjoyed in the past. Luckily my boyfriend has never treated me like a doomed person, and he is very supportive.
Stay in touch here, keep the faith and do some things for yourself!
Hi Leigh (LAR4577 ),
Firstly congratulations on your fantastic results, I had surgery as first line treatment for SCC anal cancer but due to a small portion of my tumour only having a 1mm clear margin I went on to have chemoradiotherapy as part of the PLATO clinical trial.
I think regardless of the route you’ve taken to get there & the treatment that’s been undertaken to get you to the point of being NED that feeling of being overwhelmed is the same, I’m convinced the enormity of what I’d been through from diagnosis & everything that came after that didn’t fully hit me until long after my treatment had finished & I’m sure I’m not the only one that feels this way.
I’m presuming that you’ve be placed on the 5 year surveillance pathway now that you’re NED? If this is the case then I would have thought that will look very much the same as most of us here that have gone through treatment. For me this was 3 monthly appointments for 12 months, 6 monthly appointments for 2 years then 12 monthly appointments for the final 2 years with scans throughout. My surveillance may look a little different to the norm as mine was also governed by the clinical trial protocol.
I hope this helps a little. We’re here to support you however we can.
Hi Socks02 ,
You’re completely right in what you say about a shift in emphasis from living with cancer & subsequent treatment to living as a survivor of cancer & sometimes that shift is incredibly difficult & one that unless you’ve been in that position is pretty hard to get your head around. Trying to explain those feelings to someone that hasn’t been there is almost impossible. I’m so pleased that your boyfriend has had a positive attitude throughout your journey as it’s so important & personally I think it carries a lot of weight in our response & recovery to be surrounded by hope & positivity. Congratulations on your recent clear PET scan results & in getting your port removed, that’s a big step forward. Onwards & upwards.
Oh, Leigh, I am not surprised that you feel overwhelmed. But, the thing to remember is that you are on the surveillance route and they will check you very thoroughly at your appointments not to mention scans. And if at any time you are in doubt or have any worries, call them up. Most teams are more than willing to see you if you have concerns.
Please don't ever be lonely with this cancer, we all understand only too well and can totally empathise.
I'm so glad that you get to skip the challenges of the gold standard treatment! I'm sure the surgery and recovery were painful enough.
The reaction of What? There must be more! is a common one. I think many of us have been taken aback by the slump after getting an all-clear. It IS overwhelming to go from patient to survivor!
But I'm so glad to hear that's the path you're on. And we can always come here to share our thoughts and experiences with the only other ones who really get it.