Newly diagnosed, just saying hello.

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Hello, I'm AdaJay [actually my grannies,  I'm just yet another Maggie]. After an urgent GP referral I had an op to fit a stoma and take biopsies at the beginning of October.  Apparently a lot of scarring from previous ops caused problems so I had a transverse colostomy.  It has/is taken some getting used to but not feeling like I'm sitting on knives all the time is worth it. Last week saw the surgeon for the biopsy results and I  have a basal cell cancer and need an APR. They'll probably move my stoma too. I don't yet know what other treatments I might need. I did have questions ready beforehand,  but I blathered on about the stoma issues and, having forgotten to bring my list, completely blanked and didn't even ask what stage the cancer is or, well anything. I daresay I can ask at the next appointment, which will presumably be sometime after this Friday when they've had chance to discuss it. Apparently it's an unusual kind and the surgeon may be sending me to another surgeon in another hospital with more experience of it. Trust me to be awkward?!  Feeling a little bit in limbo. Joining here is me trying to be proactive and not wibble. Up until now everything seemed to happen really fast , with little time to overthink. 

Update 

Finally got some more information from the Bowel Cancer Nurse.  I am T2 N0 M0 but they will be checking out my chest again sometime in December/January because of 'a few nodules ' - this is the first I've heard of them. Apparently the results of the team meeting were that I should have radiotherapy and chemotherapy first... no update on the surgery as yet.

The only relevant study I've been able to find on this kind of cancer is a meta-analysis from Taiwan which found no difference in outcomes between those who had radio/chemotherapy to those who had surgery alone, which I found reassuring at time of reading, despite it being still based on only around 124 patients, so not generalisable. More fool me. 

I'm pretty scared now. Some people here seem to suffer terribly from these treatments. A big part of me wants to refuse, but I know that's foolish, I'm just scared. It helps so much to just be able to admit that.

I'm more grateful to all of you and this site than ever. 

Thank you xxx

  • Hello Adajay

    Welcome to the forum although I am sorry to hear of your diagnosis and that you have had the need to find us.

    We all remember only too well getting the diagnosis and being utterly overwhelmed and forgetting a lot of what was said and missing questions, or being too scared to ask them.  You have come to the right place, there are quite a few forum members who have had an APR and I am hoping that one or more of them will pick up your post and share their experiences with you.  Well done for having a list of questions (bad luck that you forgot it) but I am sure the team treating you will be happy to answer any questions that you may have this Friday.

    I am in awe of how proactive you have been so far, please come back and share how you get on on Friday.  And we are always here to support if you need it, even if not everyone has faced the same surgery as you are facing now.

    Irene xx

  • Thank you  it really does help to hear other people's stories,  know we're none of us alone.xxx 

  • Hi  ,

    I’d like to offer you a warm welcome to the Macmillan online community although I’m really sorry to hear of your recent diagnosis.

    I think you’re the first that I’ve heard of here that’s been diagnosed with basal cell carcinoma anal cancer, the majority of us here have been diagnosed with squamous cell carcinoma with a couple having adenocarcinoma & many of us have been through chemoradiotherapy although we have a few members that have also gone on to have APR surgery that hopefully you’ll be able to connect with.

    I completely sympathise with the whole situation of going blank when you have questions at those early appointments, it happened with me also, there’s so much information to take in & you’re still trying to get your head around your diagnosis, it’s a lot! 

    I’ve had a couple of basal cell carcinomas removed, one on my back another on my shoulder, I was told they’re usually contained & rarely spread from the location that they grow. 

    Anal cancers are still quite rare, although numbers are unfortunately on the rise. I hope things continue moving quickly for you, it’s way easier to deal with when there’s no delays with appointments etc., I also hope you’re referred to someone with experience in treating anal cancers. Please keep us informed on how things are going. We’re here to support you however we can.

    Nicola 

  • Welcome Adajay, just to say you are not alone and we are with you all the way 

  • Thanks  yes, I was told its an unusual one which, unfortunately has made it tricky to find information on  - but then so did forgetting all my questions.  So far, I seem to be stuck somewhere between numb and perpetually on the verge of tears that never quite fall. The consultant,  the whole team right from the get go have been wonderful, calmly matter of fact. It has helped a lot. It being unusual is why I may be sent to another hospital  I think,  thoughthat will makeitdifficultfor my son. I really appreciate the support here. My son is also my carer, bless him, and works f/t too. I can see he's struggling,  for all we both tend to joke through tough times and really don't want to dump anymore on him, you know? Thanks again.

  • Bless you, really appreciate it.  Thanks so much x

  • Hi again  , I completely understand where you’re coming from, I sometimes think it’s almost even more difficult for family members to deal with our cancer diagnosis than it is for us that have been diagnosed. I felt very much like you describe in the beginning, stuck between disbelief that this was happened to me & wanting to cry bucket fulls but not quite doing it! It’s hard trying to describe that feeling to someone that’s not been there isn’t it? I flipped from that to getting my methodical head on & thinking ‘ok this is the situation I’m in, let’s get it dealt with!’ This is the way I tend to deal with things that are beyond my control (not sure if it’s healthy or not but it’s got me through difficult situations in the past). 

    Regarding your son, being a caregiver sometimes isn’t easy, you make sacrifices, but we do this from a place of love, I know from personal experience, if you think he would benefit from it we have a group on the Macmillan online community especially for family members & friends living with someone else’s cancer diagnosis. It would be a safe space for him to connect with others in a similar position to himself & somewhere that he could get a little support also, anyway should he want to I’ll post the link here Family and friends forum . My youngest daughter was about to sit her GCSE exams at school as I was diagnosed & sat her first exam the day I started treatment, she still did amazing in her results, our kids are born of us & reflect us so I can only hope  that I’ve shown her determination & strength when she’s seen me at my lowest. 

    We’re here for you. 

    Nicola 

  • HI Adajay,

    Wow, you're on a roller coaster and no mistake. No wonder you derped on the questions. Please keep us posted- I haven't read about anyone having anything quite like this yet. Joining this forum is excellent self-care, 

    Hugs

    Suz

  • Thanks  'methodical head' yes, that's my go to too. Maybe that's part of the stuck feeling,  not having given myself enough information to go there with. I have suggested that my son could take a look here for support too, thank you for the link. I hope he'll use it but he's also ADHD and stubborn.  Can't think where he gets it from. 

    Well done to your daughter,  that's quite an achievement! I'm sure she does appreciate your determination every bit as much as you do hers; it's so hard to watch them struggling isn't it. I think you're right that it is harder on them. xxx

  • Thanks   I'd guess the roller  coaster effect is something we all share and yes, a good description.  More information would help I think, but there's very little available so far, at least on the Internet.  Still, hopefully I'll know more after the doctors meeting on Friday. Thanks again,  it helps just to be able to talk about it with people who understand xxx