Starting chemo/radio on 15th Feb, helpful advice/tips please !

Hello again, also does it affect your teeth or mouth,? I have gum disease, should I go for a check up,? I know I have some dodgy teeth.

Hi Sarah, the way you’re preparing yourself for the treatment is inspiring!  Using wet wipes was & still is really helpful for me, Andrex do flushable ones.

”My oncologist said it was the gold standard treatment and the only other option was nothing.”  Gold standard treatment usually refers to chemoradiotherapy - did your consultant mean that, or the abdominoperineal resection (APR)? 

My non-medical understanding of the reason for APR is to remove a tumour and to make pooing less painful during & after radiotherapy.  I would ask:

- why is APR “the only option” in my case when chemoradiotherapy could be an alternative?

- how much does APR improve survival rates, compared to chemoradiotherapy without APR?

- what are the risks of having an APR?

- what are the risks of not having an APR?

I practised questions like this with my brother before I faced my terror of consultants!

Good luck & remember - the odds are on your side!  Toni

Hi Sarah (Twigley),

I agree you’re doing a marvellous job of getting prepared. It’s also a great way to keep yourself busy while you’re waiting to start treatment.

You mention that your oncologist has said you’ll be having the gold standard treatment, I was under the impression that chemoradiotherapy was the standard treatment for anal cancer, I know that you’d mentioned on an earlier post about APR surgery was that idea shelved? I know the APR surgery is generally reserved for some more advanced anal cancers & also some cases of recurrence. If you’re having chemoradiotherapy then the radiotherapy will be mapped to zap you affected lymph node too. 

I’m not quite sure if you mean for treatment or examination when you say going the front rather than the back? All of my examinations have been rectal examinations but then I suppose it depends on the positioning of your tumour as I’m aware that some can invade the vaginal wall too. 

It wouldn’t hurt to get a dental check-up if possible before treatment starts, if it’s the chemoradiotherapy you’re having mention it to your dentist & they’ll advise you. 

You will get through this & you know where we all are if you’re in need of some support, advice or just a natter to someone who’s been there. Good luck with your planning scan. 

Nicola

Hi Twigley  just to add to the good advice you've already been given, I would say to get a dental check up, particularly as you have gum disease, you don't want a gum or tooth infection whilst you're having chemo. I had a gum abscess a few weeks before my treatment started. My dentist recommended a mouthwash to help during chemo.  You asked if anyone used  turmeric or calendula suppositories. I haven't heard anyone mention those on here. Your bowels could go either way with the radiotherapy although it's more likely you'll get diarrhoea so I'd wait to see how your bowels are first before using any suppositories and also check the use of anything like that is ok with the radiologists/nurses. Hope all goes well tomorrow. Bev. 

Hi everyone, thanks for your responses, I'm not very good at explaining am I ?

The new team at Guys hospital said deffo no surgery. I have been transferred from Kings because Guys is more specialist with the anal cancer. My oncologist is starting me on chemo/radio therapy on 15th Feb, I have a planning scan before that.

She said it is this or nothing, she said no point in getting second opinion.

I am not looking forward to pain and chemo brain obviously.

Will try get a check up and clean on the teeth.

Sarah.

Hi Toni, thanks for your reply, yes they told me APR at Kings just before xmas when they told me I had cancer  BUT apparently it was never on the cards really according to Guys hosp, ah well, surgeons will be surgeons eh ?now I have a radiologist and she thinks radio chemo is the best treatment. If I had a papillon person they would prob say that was the best treatment. To be honest I dont really trust them but ......

In 5 years time this will be treated with 3D lazer surgery I expect, or contact radiotherapy, meanwhile we endure the radioactive blasting and after affects

thanks for your advice, I'm hoping not to use wet wipes as they are wasteful and I'm a dead keen green person, we will see how that works out !

I'm worried about chemo brain, any tips for avoiding it anyone ?

I was smoking 2 cigs a day, I stopped yesterday. Smoked since I was a teenager.

Thanks to you for being here.

Sarah.

Hi Twigley,

Don't worry I just thought I’d clarify with you as I know things change & I wasn’t sure if I’d got my wires crossed… The lady that I buddied up with through treatment had her chemoradiotherapy at Guys too & she seemed to have really good care there. The chemoradiotherapy is mostly first line treatment here in the UK & in most cases is very effective treatment.

I remember being terrified before I began my treatment but it really wasn’t as bad as I was expecting. Any pain you experience can be controlled just make sure you make your radiotherapy team aware of any symptoms your experiencing & you should see someone weekly from your oncology team also & between them they will prescribe any lotions & potions you need. Fatigue was a biggy for me during my treatment, probably a mixture of both the chemo & the radiotherapy, I had absolutely no trouble sleeping (day or night) but the oral chemo doesn’t for most people seem to have the severe side effect that an infusion chemo would have. 

Good luck on your appointment for your planning scan.

Nicola

Thanks Nicola, that is rte assuring.

Sarah.

Hi Sarah, I like your scepticism! & it’ll be a good friend to you through treatment.

Chemo brain - as Nicola said, most people on CRT don’t get many problems with the chemo; I had none at all.  But it’d be good to have a digital thermometer handy to check you don’t have any fever.  A nurse will chat with you about this before you get chemo.

You’re right about radiotherapy, it’s a blunt weapon.  But there’s a high success rate with anal cancer so every reason to be optimistic!  You may get side effects, or you may not, I tried to hope for the best & prepare for the worst:)

By the way, well done for stopping smoking!  Toni

Thanks, I was having a bit of a panic today, you are reassuring.

I have calmed down a little.

Sarah.