Confused about Staging and Treatment

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Hi, I had an external perianal tumour removed and was diagnosed SCC. I’m now awaiting next steps and told about various appointments. At the moment they have not said whether I will definitely need further treatment, is that normal? The tumour removed was 2cm x 3cm from what I’ve been advised but beyond size I don’t know much more. How long is it usual to wait for updates and decisions? I’m frustrated and the mind just keeps ticking over with alsorts! So far I’ve had an operation to remove lesion/tumour, a CT scan and blood tests. Any advice on usual protocols would be great. Thanks so much x

  • Hello Lar4577

    A warm welcome to the forum although I am sorry to hear of your diagnosis.  We have all been there and had the shock of the initial diagnosis and know how nerve-racking the waiting around is.  Unfortunately the treatment plan won't be in place until all the results are back and an expert team will discuss your case and decide on the best course of treatment.  The CT scan will possibly show if you have any internal tumour and you may well have more detailed scans after that.  The standard treatment is chemo/radiotherapy over a 28-day period depending on what they find.

    All this can take quite a few weeks, and you are right, the mind goes into complete overdrive.  However, once you have a plan, you will feel much more in control of what is happening.  The treatment can be tough but we have lots of coping strategies and tips and the members on here are always here to provide support if you need it.

    I hope everything speeds up for you and you can find out what is happening, please let us know how you get on.

    Irene xx

  • Oh Lar, I'm so sorry about this tough, tough diagnosis. I'd for sure expect further treatment, but I think your team is probably waiting to collect all the info before they sit you down and take you through it. But oh oh oh, the waiting is SO hard.

    Rest assured that as soon as they've got their stuff together, things will move rapidly. It's a relief, weirdly, to be in the treatment prep stage because you're so busy that you don't have time to sit and brood. 

    The usual protocol, which of course may not be yours, is 5-6 weeks of radiation, 5 days a week, with concurrent chemo for a few days at the start and finish. It's a very intense, focused treatment that gets hard to live with toward the end of the treatment phase, and the beginning of the recovery phase. But it's also very, very effective.

    Hope you get the green light soon to start getting it done and behind you.

    Hugs

    Suz

  • Hi  ,

    Welcome to the Macmillan online community although I’m so sorry to learn of your diagnosis. It’s absolutely mind numbing isn’t it? We all completely understand what you’re going through right now as we’ve all been where you are now. 

    I think the next stage for your treating team will be to have an MDT (multi-disciplinary team) meeting, this is where your colorectal surgeon, oncologist, radiographer etc., will discuss the best course of treatment for your individual case. I know that at the hospitals where I received my surgery & treatment these meetings were held once a week on a Wednesday. 

    I had my tumour biopsied which revealed my diagnosis, mine was 2cms in diameter & 2mm deep so I was a candidate for a local resection as first line treatment although following this due to a small area only having just a 1mm clear margin I was entered into a leg of the PLATO clinical trial & received 23 days of chemoradiotherapy. 

    Hopefully once it’s been decided whether or not you need further treatment then the appointments will come through quickly & you’ll have a clearer idea of the next steps. 

    Remember we’re here to support you however we can so don’t hesitate to ask if you have any questions at all, nothing is taboo here. 

    Nicola 

  • Thanks Irene, Suz and Nicola for your feedback, it’s really helpful to hear other’s experience.

    A little update I had a call today from the colorectal nurse about my CT scan. Apparently it hasn’t shown anything, which is obviously a positive. I’m just scared something will have been missed or just not shown up!

    The plan they say now is to wait for the EUA and Colonoscopy at end of July.

    Do you get told what stage you are or do you have to ask? I asked but the nurse wasn’t clear and just said the scan hadn’t shown anything and things would be reviewed again by MDT after the next procedures. Feel a bit in limbo !

    Leigh x

  • Hello Leigh

    I am out of my depth here but at a guess I would say they are looking to find if there is a 'primary source' for the external tumour.  But I can't talk with any authority or real knowledge.  You have my sympathy, you are caught in the horrible waiting game which is such an awful time.  End of July is a long time for you to be in limbo and I am hopeful that it is because they don't consider you an urgent case.

    I would make a list of everything you want to know the next time you get information from the hospital.  It is so easy to forget when you get a phone call out of the blue.

    There are lots of really knowledgable people on the forum and I am hoping someone else can help you more than me.

    Irene xx

  • Thank you, it’s definitely frustrating. All I can do is focus on the now and be positive that the I had a tumour it was removed and hopefully the removal caught it all. X

  • Hi Leigh,

    Oof, that's a long time to be asked to wait. I have to assume it's for a good reason.

    I was not told what stage I had. I called the chemo nurse to whom I was told to bring my questions, and she said it wouldn't make sense to me. I was puzzled and asked if I wasn't just Stage 2 or whatever like everyone else. She sighed heavily and snapped, "You're T2N0. Does that clear it up for you?'

    I thanked her and wrote it down, but didn't know what it meant until someone HERE told me. WTF was so hard to understand? Gah!

    I'd compose a really comprehensive list of questions to ask them when you have the next opportunity and really make them be as clear as they can. 

    It's awful how mistrustful we become of 'clear' scans and so forth. The fear of something getting missed never really goes away.

    Sending hugs!

    Suz

  • Hello Suz, how awful to have a member of staff that can speak to you so rudely and assuming we are not capable of having the right information on what stage you are which I think is quite a significant piece of information. My first experience going to prepare for my treatment where a nurse had to do the tattoos, was an awful experience on how I was treated. I went home and cried. The first thing I did was complain to one of the Macmillan nurses who told me to complain to PALS. These work within the hospital for patients wellbeing and how they are treated. My team phoned me and apologised profusely and promised me this was not going to continue and the nurse (three of them) were going to be investigated. We don’t have to be rude back but we have the right to question their attitudes towards us. If I hadn’t felt so vulnerable that day I think I would have confronted her and her junior team who she was probably trying to impress with this power of treating people like they were nothing rather robustly.

  • Hi again Leigh ( ),

    This sounds very similar to the beginning of my journey, as I said before I had my tumour biopsied which resulted in a diagnosis 1 week later of SCC anal cancer, that same day I had appointments made for both MRI & CT scans, approximately 7 or 8 days later these were reviewed at the MDT meeting & I got an appointment through to see my colorectal surgeon, at this appointment he explained to me that my tumour wasn’t visible on either of my diagnostic scans which surprised me! he went on to explain that I’d been picked up very early stages & I was a candidate for surgery as first line treatment with a view to cure, the resulting letter from this appointment gave me a staging of T1N0M0.

    I personally think it’s a bit of an ask for you to wait now another 6 weeks or more for the EUA & colonoscopy! but that’s just my opinion. I’m really not surprised you’re feeling the way you are! 

    Nicola 

  • Wow, I'm sorry you too experienced that degree of dismissive rudeness, but I'm glad your team had your back and didn't gaslight you. Good job!