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Re: Anal squamous cell cancer

12 Feb 2018 08:27 in response to texasgirl
Hello everyone, I have been reading your posts about anal squamous cell. I was diagnosed early December, after going to my gp with what I thought was a prolapsed hemorrhoid. They didn't realise it was cancer until it was removed, my consultant is sure he got it all but as it was an aggressive one I'm waiting now to see the radiotherapy oncologist, which I hope will be next week, prior to my p!anning appointment for radiotherapy, I'm told I will have chemo too in tablet form. All this waiting is terrible!

Re: Anal squamous cell cancer

12 Feb 2018 08:44 in response to Suzym

Hi Suzy

I totally agree the waiting is by far the worst bit - hopefully you’ll feel a wee bit better once you’ve seen the doctor and have a plan in place. 

I was diagnosed last Aug and had 6 weeks radiotherapy and the chemo tablets - they weren’t too bad. 

I’ve got my mri scan today as that’s me 4 months post treatment in December when I saw the consultant and he did an examination he said as pleased that the tumour had gone just need to get this confirmed with the scan.

For me this is a really good site as there are so few of us diagnosed with this type of cancer its good to be able to chat to others who’ve been or are in the same surustion

i hope you get on okay over the next few days and get your plan in place - if there’s anything you want to ask me just get in touch.

kind regards Sandra 

Re: Anal squamous cell cancer

12 Feb 2018 15:02 in response to texasgirl

Hi Texasgirl

Thank you for coming back to me regarding the treatment.  All in all I just want to get on with the treatment...it seems to be forever the wait.  Everyone says the same.....weeks feel like months.. How are you feeling now? You seem to have had a difficult start but its always best to keep a positive head .....I wish you well and do keep in touch.  x

Re: Anal squamous cell cancer

12 Feb 2018 22:04 in response to Mandydk

Hi Mandy,

Yes, the wait to start treatment is grueling.  The wait for the scan results after treatment is also grueling.  

I started to turn a corner about 10 days ago and I'm feeling much better. The nause still comes in waves, but not as often.  I seem to feel better if I stick to a soft diet.  Thank you for asking.

I hope the time flies by for you.  Let us know how you are doing.

Re: Anal squamous cell cancer

12 Feb 2018 22:22 in response to Suzym

Hi Suzy,

My oncologist said that this is one of the tougher cancers due to the location.  It's often overlooked due to the location and is often misdiagnosed as hemorrhoids.  The wait to start treatment is grueling as is the wait after treatment to find out if it was successful.  The treatment is tough, but most people don't notice it for the first 2-2 1/2 weeks.  And you will start to feel some relief a couple of weeks after treatment stops.  

Hang in there.  We are with you in spirit.

SandsJ, I know your results are going to be great!  Let us know when you hear something.

Warmest Regards, Sheri

Re: Anal squamous cell cancer

13 Feb 2018 00:27 in response to SandsJ

Hi Sandra,

Thanks for the reply, I'm really pleased I've found people that have either gone through or are going through the same thing. I really worry about everything, I feel scared of everything, and I don't think my family and friends realise how much it affects you. When I had my CT scan it was clear except for a thickening in my stomach, they don't seem worried about it at the hospital, could just be inflammation as I've suffered with acid reflux for years, and I've got an endoscopy booked for next week. I'm petrified of that, and its just another thing to worry about. What side effects did you get with your radiotherapy, was it bearable? 

Sue.

Re: Anal squamous cell cancer

13 Feb 2018 00:36 in response to texasgirl

Hi Sheri, 

Thank you for your message. I really feel as though I've done nothing but wait for scans, results, appointments for months now. I had my op on the 4th of December so that was only 2 months ago, but it feels so much longer. The trouble is when eventually I do go for my treatment the hospital I have to go to is 50 miles away, that's going to be tough making that journey every day, especially when the after effects start. 

I'm sorry for sounding so negative,

Regards,

Sue.

 

 

Re: Anal squamous cell cancer

13 Feb 2018 02:06 in response to Suzym

You do not sound negative at all.  I found it really challenging to remain positive with an anal cancer diagnosis and while feeling so ill.  I was so scared of the chemo and radiation and had to fight back tears during the treatments.  And because I still have an ulcerated area which is painiful, I was convinced that the treatment was not succuessful.  Thankfully, I was wrong about that.  I think most of us tend to worry at every little pain now.

It's probably not the most ideal situation having to travel 50 miles each way for daily treatment, but they can give you anti-nausea meds which will help should you need them.  Lots of folks breeze through.  It does get painful towards the end of treatment due to the radiation burns.  But there's lotions for that, too.  I was already underweight starting out which made it a difficult fight.  

Is there a non-profit that provides housing for people that are going through treatment?  Maybe you could ask the facilitator of this website.  Or post on this website and ask if anyone has any suggestions. I was fortunate enough to lie down in the backseat of my car while my hubby drove me to appointments.  Will you be commuting via tram?  If so, I suggest that you take some sort of pillow to sit on.  Now that I'm up to driving, I position a small one under my thighs so it keeps my bum from hitting the seat.  

I was scared of everything, too.  But they have had tremendous results with this treatment. They made no changes to the treatment since 1970 so it's tough, but it works.   In the last few months the government approved funding for research on this particular cancer and they are making headway.  

I'm sure the nurses will tell you to drink lots and lots of water to flush out the chemo and to eat small amounts of food throughout the day.  It makes it much easier to tolerate.  

 

Re: Anal squamous cell cancer

13 Feb 2018 10:48 in response to Suzym

Hi Sue

i know exactly how you feel it’s so frightening and all the waiting g doesn’t help - I found that once I actually started the treatment I felt more positive.

The actual radiotherapy and chemo tablets weren’t too bad and I had weekends off - did me it was the tiredness after about two weeks so you just have to accept it and get as much rest as possible - after about three weeks maybe skin did break down quite badly but I got good pain relief and good cr and that helped - don’t wait until it gets unbearable don’t try to be brave take all the meds and help you can get.

i normal fed that you’ve got a fair bit of travelling to do that’ll be hard if you’ve got family and friends that offer to drive you let them - at first I wanted to do it all myself but then my nurse pointed out that your friends and family can feel quite useless so if you get them to drive you they feel that they are helping in some small way.

I live in Glasgow and was treated at the Beatson the staff there were amazing and also pointed me in the direction of the Maggies centre not sure if you havd one near you - they are amazing so supportive and thx one here is a wee sanctuary to relax in.

i hope you get on okay over the next few weeks keep in touch and ask anything at all 

take care 

warmest regards Sandra x

Re: Anal squamous cell cancer

13 Feb 2018 11:04 in response to Suzym

Hi Sue

Like you it does seem such a long wait ......I start Monday for the 5 1/2 weeks treatment. I was diagnosed early January but first symptons were mid-November when I went to the Dr. I am feeling apprehensive but can't wait to get started as the wait does seem forever. I was told the treatment is so complex that it needs lots of planning prior to starting - in this particular area.  I guess the only way of looking at it is - the time being taken by the hospital in planning the treatment...which is taking weeks to do will treat only the area affected and it won't harm any other parts that maybe near by ... I am sure you will be starting soon like me.  I think everyone on this site is encouraging and have explained their treatment well which helps  to understand and manage your concerns/thoughts prior to the treatment. I wish you well and do keep in touch. x Mandy

Re: Anal squamous cell cancer

13 Feb 2018 11:36 in response to Mandydk

Hi Texas girl, Sandra and Mandy, 

Thank you all for your messages, it does help a lot. I've received my later this morning to see the oncology doctor next Monday, so I at least feel as tho things are on the move. I know I'll be OK once I've met the radiotherapy team, one other thing that is worrying me a little bit is how much of your dignity do you loose, are you left half naked while having treatment. They do offer transport here if you live a long way away but it could mean you would spend all day waiting around which will be hard going from about half way into treatment, so I'm going to drive there every day, or my daughter and son in law will. Apparently they do offer a room to stay during the week for the last 2 weeks of treatment if it gets too much. So ey do try and help. I feel better today and a bit more positive. Can I ask you all did you invest in clothed.... Natural fibre pants and the such like?

Mandy I hope you get on OK with the start of your treatment, let me know. 

Thanks again everyone, I look forward to your messages.

Sue x

Re: Anal squamous cell cancer

13 Feb 2018 12:09 in response to Suzym

Hi Sue

Good news regarding next Mondays appointment - good luck!  I will be thinking of you.  Regarding dignity....so far I haven't felt embarressed as they do seem to cover you up well...not sure what to expect when treatment starts but maybe Sandra or Texasgirl can elaborate on that... i'm planning on driving myself the 35 mile to the hospital and back for the first 2 - 2 1/2 weeks and then I have a son, sister and husband to take the wheel.  Its best to think of a back up plan - just in case you don't feel like it.  I am sure all will be fine - its always best to go with a positive outlook - we are here to give each other support.  All the best Mandy xx 

Re: Anal squamous cell cancer

13 Feb 2018 12:35 in response to Mandydk

Hi sue and Mandy 

good luck with your treatment , I m now in my second week glad that I m finally being treated , it is tough and chemo seems to have different effects on people , for me I had waves of sickness although I wasn't actually sick! Make sure you take your anti sickness through chemo as I m sure I would have been a a lot worse had I not taken them. I have a very sore mouth and lips and a bit of a swollen throat but I m glad to be chemo free for a couple of weeks!  Aparantely it's still working in your body with the radiotherapy so the tiredness some days really  kicks in. I seem to have a good day and then a couple of tired days but just take each day at a time. All the waiting to start is a nightmare for everyone it seems but I started feeling much more positive once treatment has started . 

Wishing you both best of luck it always helps having others that you can relate to.

love Gilliebean x

Re: Anal squamous cell cancer

13 Feb 2018 16:55 in response to gilliebean

Hi Gilliebean

That all sounds positive and at least you are underway.  Only another 3 1/2 weeks to go! I will be glad when I have started.....keep me posted with your treatment and I will with mine.

 

Wishing you all the best.  Mandy xx

Re: Anal squamous cell cancer

13 Feb 2018 22:39 in response to gilliebean

Hello Gillibean and Mandy,

Mandy so you have a bit of a track too. I think I'm going to drive myself for as long as I can. Then I'll lean on my family a bit, the trouble is I live in north wales with my youngest daughter and her little family, the rest all still live in Birmingham, so I'm a bit limited on drivers, but I'm going to stop stressing about it and just get on with it.

Gillibean I'm glad your treatment is under way, it won't be long until we've all done it!  Can't wait to get back to being boring and mundane lol.

Do you all work? Your not trying to carry on working while having treatment are you?

I love this site, I'm so glad I found you all.

Sue x