Scared

  • 10 replies
  • 57 subscribers
  • 447 views

Hi I just need to write all this down. I was diagnosed with anal cancer T2 one lymph node possibly two on 23rd July, it had taken since February for the diagnosis and I had probably had it for a year prior as I didn't go to the doctor. They have told me it's curable which I have to go with and I start treatment on the 30th September. Chemo at the beginning then radio for 5.5 weeks then  repeat chemo, i can only have 50% chemo as my dpd levels are low. The scans also showed I have an adrenal gland tumour which at the moment they are saying is probably benign but having to have more tests, they also found an issue with my shoulder which again they have said they think will be fine but more scans required. I am petrified of the treatment and the side effects even the ones they told me I won't get which makes no sense. I feel very alone, everyone around me thinks I'm handling it all well which most of the time I think I am but I do put on a front. 

  • Hi Bungle,

    Yes, it is pretty scary to get that cancer diagnosis, but you have come to a great forum for advice and supprt, it really helped me when I was newly diagnosed and didn't have a clue what was happening.

    The radiotherapy/chemo treatment you will be having is the same as I had, although I had the full chemo dosage, but my understanding is that it's the radiotherapy that does the work on your anal tumour. There are a few of us here who have not had the full chemo and it has not made any difference to their final result. It is a very effective treatment although can have some side effects, which I found were dealt with really efficiently by the medical team who worked with me.

    When I had my scans, the oncologist talked about congestion in my lungs, some small lesions on my liver and something in my pancreas. By the time he had finished, I thought I was on the way out! In actual fact I had the radio/chemo treatment and no more was said about all these other things; I asked him at my check up and he just said 'No, no, everything is fine', so I don't know what was going on there but it scared me at the time. 

    Once you get started on the chemoradiation you will feel you are making some progress and the medics will be monitoring the other areas.

    Best wishes

  • Hello Bungle1

    I am really sorry to hear of your diagnosis, it is a very frightening time but once treatment starts you will feel more in control of what is happening to you.  One of the oncologists told me that if every person was scanned various harmless spots would show up on everyone, and they are just being extra careful given your diagnosis.

    The treatment is tough but doable, and yes, there are side effects but not everyone gets them really badly, and in the grand scheme of things it is a price worth paying to be cancer-free.  There is a lot going on behind the scenes at the moment, a team (multi disciplinary team) has weekly meetings and once all the information has been collected from the various scans and tests a treatment plan is made specifically for you.  The waiting around is awful, I know.

    Please don't worry about putting on a front here, we have all been through it and have lots of tips and coping strategies that we can share.  And we are always here to give support along the way, should you need it.

    A big hug from me.

    Irene

  • Hi  , 

    The uncertainty surrounding a cancer diagnosis in the beginning is awful, your head feels like it’s constantly spinning & you seem to be surrounded by what if’s! Your team seem as though they’re being really thorough which although it can feel really scary when they start checking other things too this is a good thing. Hopefully once your treatment begins like many of us have experienced you’ll begin to feel a bit more in control & your emotions will settle somewhat. My advice would be just to take each day as it comes once you’re in treatment, although there are some common threads in the way of side effects we’re all individuals & so is the way we react to the treatment. Try not to be concerned about the chemo side of things, there’s others that have come through our group that have had radiotherapy only due to different factors to do with the chemotherapy & they’ve had great responses to the treatment. As has already been said please don’t ever feel like you have to put on a front here, sometimes during this journey our emotions are very raw & this is a place where we all understand this. We’re here to support you however we can. 

    Nicola 

  • Thank you Mrs Vanilla, Irene76359 and Nikki65 for taking the time to respond. I have my tattoo and planning appointment tomorrow which is making me feel like I'm getting somewhere and treatment as such is kind of starting. X

  • Yes, feeling things are under way really helps. 

    You might find it useful whilst you are waiting for the treatment to start to begin preparing things. This helped me feel I was in a sort of pre-treatment phase rather that just waiting around.

    Think about planning and buying in food, drinks and snacks you enjoy since you might not feel like preparing and eating big meals, and start moisturising your skin, especially around your undercarriage, but be careful what you use - ouch. The radiotherapy team will give you some proper cream but I'm not sure when you'll see them. Oh, and don't put any on before any radiotherapy sessions. 

    Good luck with it all and keep in touch.

  • Feel a bit better about things after today, although I am never having a tattoo. I've been looking ahead at nutrition, lifestyle etc to give myself the best possible chance of staying cancer free once I'm through this. X

  • Hi again Bungle, 

    Glad you're feeling a bit better today.

    You might also want to look at buying yourself a sitz bath, it might be handy later if you end up with a sore underneath. You can go to the loo into the water which some people find helpful, and it can be soothing just to dip your bottom to clean it rather than scraping away with dry loo roll.

    Oddly enough, I didn't get tattooed. Never found out why, suppose it must depend on site of tumour.

  • Thank you, I've seen those mentioned on other posts so will look into them. Had good news today my shoulder is just a ripped tendon so it's one down two to go. Hope you are ok. X

  • That's good news about your shoulder, tendon should heal on its own in time.

    Let us know how you get on. ;0)

  • Hi again  , it’s good to hear you’re feeling a little better & that’s good news but not good news about your shoulder if you know what I mean! One less thing to worry about right now. Fingers crossed your adrenal gland issue will turn out to be of no concern too. Let us know when you hear anything. 

    Nicola