New here, new to cancer

Hi Wavedancer

I'm sorry about your diagnosis, but welcome to the forum. Everybody here is either going through it or out the otherside. We are here for you in whatever way you need, tips, advice, emotional support, doesn't have to be cancer related can be anything you need to get off your chest. 

The waiting for scans and results etc is hard but try and keep busy with things you enjoy and stay of dr google. Try and get some pain relief from your doctor. Once you get a treatment plan you will feel more in control of the situation if that makes sense.

I am 4 months post treatment tomorrow, although I don't know if it worked yet. I had the standard treatment for anal cancer chemotherapy and 28 sessions of radiotherapy which apparently is a pretty successful treatment. If you have any questions just ask nothing is of limits, people talk openly about it all on here.

Hope you sorted a cushion and get some pain relief soon. Sending hugs. Xx

Hi Wavedancer,

Welcome to the group!

I'm truly sorry to hear about the pain you're experiencing. Please make sure to ask your GP for some pain relief; once I received pain relief, it allowed me to think more clearly.

This group is fantastic at providing advice and tips, and I hope you'll find comfort in knowing you're not alone.

I”m 51, with four kids and I was diagnosed with A/C on 15/01. I live in Spain, and I’ve found that the medical teams here are excellent. They acted quickly once they confirmed it was cancer, and I began treatment on 18/02. I'm currently midway through week 3, and so far, I'm doing okay.

Spanish medical staff are very direct in their explanations. My radiotherapist told me that my tumor was enormous and was visibly frustrated that other doctors had missed it, attributing it to hemorrhoids. She even pointed out that I didn't have haemorrhoids at all!

Initially, they thought I had stage 4 rectal cancer, but further tests showed that my tumor had grown from the bottom up, leading to a diagnosis of stage 3 anal cancer.

The medical team decided on chemo radiotherapy for 30 days (weekdays only) and 2x intravenous, so far I’ve had one of these and it was quick (30 mins), pain-free and I didn’t suffer any real side effects apart from tiredness.

I now spend my days soaking in a bath of Epsom salts, I do find this helps. In addition to chemo tablets, I've been advised to take the following: probiotics (intimate flora capsules) once a day and vitamin D capsules, for pain relief, I'm currently managing with dexketoprofen trometamol (3x a day). My medication might differ slightly though due to being in Spain.

So far, I haven't experienced any side effects from the chemo tablets, except for a reduced appetite and some weight loss (3kg so far). My skin around my bottom and vagina is getting sore, due to the daily radiation so I ensure I reapply the creams after using the toilet. At home, I try not to wear underwear, and after baths, I use a hairdryer on low, cool to dry my nether regions (great hack, by the way!). Water wipes instead of toilet paper have also been a lifesaver!

I hope you get your treatment plan sorted very soon, and please know that we're here for you.

Mix 

Hi Wavedancer 

Welcome to this forum where no question..concerns of thoughts are ignored..

I'm 3 weeks today post treatment..im still in some pain in rhe bottom area but I'm hopeful that things will start to improve..

I understand your concern and anxiety at all the waiting and not knowing..its as if they say yes it's AC.. then it's the blank space of not knowing start dates , treatment, progress etc..

Think we have all had similar problems with the pain and misdiagnosed..my gp and local hospital told my it was menapause and to just get on with it..that was for a full year in constant pain.. luckily I managed to go private for a diagnosis and the doctors within 2 weeks told me on 4th Oct it was stage 2 anal cancer.. but like you it's the waiting for the mdt team to discuss my case then the planning. What I will say is once it's gone to MDT..it moves pretty fast..but if you worried maybe speak to your consultants pa.. re the pain again ask the team at hospital if they can maybe give you a morphine slow release patch.. don't think you gp would but maybe the hospital will..

Your not alone in this.. we will all help you get through this.. this forum has literally gotten me through some very dark times and still is..

Sending lots of positive thoughts..you can do this 

X

You all have already eased my anxiety quite a bit ~ thank you.

I have a PET scan this afternoon and just took my last dose of Oromorph until after the scan. I've named my tumor 'Sicily' because I was trying to come up with a silly name and that stuck. I know that probably sounds so weird, but I didn't want to 'own it' as in 'my tumor', so there you go. Anyway, she's really pissed off today. My husband, bless him, bought a huge dog bed and has put it in the back of the car (we have a Yeti) so I can do the hour and a half journey lying down. Illegal, probably, but I can't sit for that long (no cushion so far).

I just wanted to thank you all for your replies and advice... and wish you a day with some smiles.

Hello Wavedancer

These days when you first get a diagnosis are the worst, and we can all empathise with how you are feeling right now.  I walked around in a bubble of terror and couldn't even answer if the hospital rang, my husband had to take over.  The unknown is just awful and once the doctors (and you) know what you are dealing with, the relief of having a treatment plan in place is enormous.  I am sorry that the surgeon used such emotive words to tell you too, that really can't have been easy to hear.

The final MDT meeting to discuss your treatment won't be heard until they have all the results (PET scan included), so I hope that the results will be rushed through in time for Monday's meeting.

You already have had a warm welcome from some of our members and just to underline, nothing is off-limits for discussion here.  You are amongst others who really do know.

I am so glad your husband is supportive - a giant dog bed sounds like a brilliant idea.  I would suggest when you next go to the hospital to push very hard for additional pain relief, what you are going through sounds excruciating and it sounds as if you are having a lot of breakthrough pain.  There is a slow-release morphine capsule that can help prevent that.  And it would be a good idea to make a chart and take the morphine regularly and not wait when the pain gets unbearable.

Big gentle hug, Wavedancer, we are here to support you all you need if you wish it.

Irene xx

I bought the memory foam cushion ring on Amazon and it’s been a god send! 

There are quite a few... can you tell me which one?

Hi Wavedancer ,

Another warm welcome from me although I’m so sorry to hear of your recent diagnosis & for all that you’re going through right now.

The waiting for a firm diagnosis, tests, scans, MDT meetings etc., is truly awful, it’s so difficult & feels like forever but hopefully it won’t be long now & you’ll get a definitive answer  as to which diagnosis you’re facing. 

I was diagnosed with anal cancer in February 2018 & I’ll be 7 years post treatment this June. I was diagnosed pretty early so I had my tumour removed via local resection with the hope that I’d escape the chemoradiotherapy but because a small portion of my tumour only had a 1mm clear margin 8 weeks post surgery I embarked on 23 days of radiotherapy alongside oral chemo. I remember being so scared going into treatment but along with the surgery it’s the reason I’m here today so I’m very thankful & I’m doing well. 

Regarding oramorph, it did absolutely nothing for me other than cause me awful constipation! Mention to the MacMillan nurse that the pain relief you’re on at present isn’t cutting it & insist that you need something more adequate, I hope they’ll be able to help you get something that offers you better relief. 

If you feel able keep us updated on how things are going & let us know if there’s anything you may think we’d be able to help with. We’re here to support you however we can. 

Nicola 

THANK YOU!