PET scan tomorrow

Hi Prettypinkroses,

You're in the worst possible place at the moment, diagnosed but still having tests etc., it’s a worrying time but once tomorrow is over & done with your team will hopefully have a complete picture & be able to give you a firm staging & get a treatment plan in place for you. I should imagine the PET scan is more to do with the shadow you’ve mentioned as this will determine if this is indeed cancer or something benign. 

I felt nauseous the whole time in the beginning, I had little to no appetite etc,  in hindsight this was mainly down to stress though I think. If you’re experiencing pain this too will possibly be causing you to feel nauseous. 

Squamous cell carcinoma anal cancer is generally a slower growing cancer & although there can be exceptions the new pain you’re experiencing may possibly be nerve pain, the area where your tumour is & the rectum are both packed full with nerves. This could explain the ‘electric’ type of pain & the numbness too, if you’ve been given a number for a specialist nurse or you know the name of your consultant just give them a call & I’m sure they’d be happy to talk you through your worries. 

Please be assured you’re not going slightly mad we’ve all been & are still sometimes terrified when our thoughts get the better of us & I know it’s difficult but the best thing you could do right now is not to Google. 

I hope things go well for you tomorrow. 

Nicola

Thank you Nicola!!!! 

You’re absolutely right, my appetite is non existent which in one way is good as my system is finding it difficult to process food and physically cannot face more Movicol and other laxatives! But I’m making sure I get enough of the right things and nutrients. 

I wish I knew more, like how long it’s been there and why? I have none of list of causes, no HPV etc. I guess I’ve gone past the stage of shock and appear to be angry! 

It’s so unfair! I’m only just 51. No normal symptoms. My children are only 8 and 10. What will this mean for them? Hey ho, I understand cancer is not picky. It does just happen. But my life will never be the same again. I suppose that you have to go through this, almost a grieving process for what your life was. 

Thank you again for your unfailing kindness , support, wise words and information. It’s a lot to take on board and today will be the start of my new life…

I need treatment to start so I can get rid of this constant pain (if only to take on another one!) like I will explain to my young children - I will have to get a bit worse before I can get better. 

THANK YOU  

It is a such a difficult time emotionally  Prettypinkroses, it’s like you say very similar to the grieving process & you will go through a whole range of emotions including sadness & anger, I certainly did! I’m still not aware even 3 years down the line whether my cancer was HPV driven or not! As far as I know the only way to tell is if for your biopsy is tested, I vaguely remember asking right at the very start was mine HPV related but everything was such a blur & moving so fast that I can’t even remember if I received a definitive reply! 

If your finding it difficult to eat etc., maybe you could ask your Dr to prescribe some meal replacement drinks as you want to go into your treatment in as good a shape as possible & they’re a quick & easy way to make sure you’re getting everything you need. 

I was 52 when diagnosed & although my 2 girls are older you do worry as to what this might mean for them but kids are incredibly resilient & especially when they’re younger take a lot of things at face value. My eldest daughter has Down Syndrome & has her own home where she lives with her friend with some support, I told her the bare minimum of what was going on, I didn’t mention cancer to her as she would have clung to that word & would have had me dead & buried bless her lol, my youngest was in her GCSE year at school & actually took her first exam on my first day of treatment, I don’t know how but she did me proud with her results as always. 

I didn’t present with the range of symptoms that are seen as pre-cursors for anal cancer either, mine presented externally with a polyp on the anal verge that ‘seemed to be tracking inwards’ my GP reported! I’ve recently had a conversation with my oncologist regarding earlier referrals by GP’s to try & get earlier diagnosis as so many are passed off as haemorrhoids for so long which obviously leads to later staging & he said my presentation was rare! I class my self incredibly lucky though as a change in shape of this polyp took me to the GP & I’ll be forever grateful that she took this seriously, gave me an internal examination & although that felt normal at the time she referred me to my local hospital to the lower colon team to have further investigations as she wasn’t sure what it was & because of this I was picked up early, stage 1. 

You may have to come to terms with the fact that you may never have answers to some of the questions you’ve got, as in why & how but please hold onto the fact that you will hopefully get your life back on track after you’ve had your treatment. Yes cancer does leave its mark, you lose trust in your body for a while, but that can return with work, there are counselling services out there if you feel you need some help in coping with the mental scars this disease can leave behind,

Good luck again for today, I hope all goes well, please let us know how you get on. 

Nicola

So glad you were picked up early, I know you’ve still had a long and difficult journey but here you are helping all of us. THANK YOU!!!!! 

Hi Prettypinkroses,

I just wanted to say hello - and to hang in there! I was diagnosed in November 2020 with Stage 3 anal cancer, with potential spread to two lymph nodes. I finished my treatment in January, and I've slowly felt better every day. The radiation is gnarly and does a number on squamous cell carcinoma. When I was diagnosed last year, I was 49 years old with three boys - the youngest was 12. I was most gutted worrying I won’t see my boys grow into adults, and like you, I've grieved for my previous life. But we are strong, we heal, and life moves on. You are and remain the same wonderful person as before.

Our diagnosis feels like a damn nightmare, but kicking off treatment will help you focus your energy on the fight. Right now, you are in a waiting period, which is the worst.

Stay strong and I hope you are given a kickoff treatment date.

Sending warmth and sunshine,

Sarah   

Dearest Sarah, thank you so much  I so needed to hear this. How kind and wonderful are you guys on here???!!!!  I don’t feel nearly as daunted now. Thank you so very very much XX