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Re: Anal squamous cell cancer

8 Mar 2018 16:07 in response to Mandydk

Hi girls

i found the name of the stuff I was given it was polymemn non adhesive roll you just cut off what you needed dampened it with water and basically put it between your lady bits and bottom cheeks (sorry to be so basic!) it kept your skin from touching and had a soothing effect! 

I’m sorry to hear  you are all suffering it’s just not nice.

There is however light at the end of the tunnel - I saw the consultant today and got my MRI results - it’s gone and I am officially in remission! Have to get follow ups every three months for a year then if all good will go to 6 monthly check ups. I’m feeling so relieved and happy and can truly say when I was at the stages you are all at I never thought I’d get to this day.

Please all be kind to yourselves and know that you can and will get through the next few weeks months.

Sending warmest wishes to you all Sandra x

Re: Anal squamous cell cancer

8 Mar 2018 16:11 in response to SandsJ
Hi Sandra Excellent news! I am so pleased for can now enjoy a good holiday with family and get back to some sort of normality. The check ups can only be good...wishing you all the best and I will get some of the non adhesive roll you recommend as I feel its needed! Warmest wishes to you and a bright future. Kind regards Mandy xx

Re: Anal squamous cell cancer

8 Mar 2018 19:04 in response to SandsJ

Hiya ladies,

Haven' been on for a while.  I have finally been for my planning today. Picc line going in next Tuesday  then my treatment starts on the 19th.

Sandra that lovely news about your MRI results.

And I'm taking notes on all the advice on what to use for when things get sore. I'e got my hostel booked for the last 3 weeks of treatment. So I feel a lot happier now.

We are all getting there ladies, soon be thru it.

Sue xxxx

Re: Anal squamous cell cancer

9 Mar 2018 07:55 in response to Suzym

Hi sue

glad that you ve got a date now ,  hope you sorted out the stirrup thing! I asked my radiologist and she said they never use them! So no need to worry about that! I ve just been prescribed morphine gell and it helps but I m sure that you won't need that until around week 4 . 

Best wishes 

Gilliebean xx

Re: Anal squamous cell cancer

9 Mar 2018 08:04 in response to gilliebean

Hiya Gilliebean,

 Yes I sorted the stirrup thing, they were horrified I was told this information to the extent I almost didn' go for treatment. Everyone involved is aware now and the young Dr is going to be told.

Its' been drummed into me to tell them when things start getting painfull, I feel much happier about things now. Several of the staff have said to expect it to get really painful because of where it is, but that help will be there all along the way.

Will keep you updated,

Sue xx

Re: Anal squamous cell cancer

9 Mar 2018 08:08 in response to Mandydk

Hi Mandy , 

sorry to hear you are suffering you should have a radiographer review person ,ask to see her and explain about your soreness etc they can prescribe many things and you don't have to pay because you should have a prescription exemption for 5 years because of cancer. Also you may find a cushion with a hole in the middle helps either from the Red Cross ior go on line and see if they are available . Sorry that your chemo has been stopped have they told you what to eat to get your platelets up? Eggs and banana s are good it worked for me !  Make sure the eggs are cooked not runny scrambled is good! It it does get worse of course but you will get through it and I m sure you ll have down days ,remember it's ok to cry sometimes as it's good to let it out! 

Thinking of you .

Gilliebean x



Re: Anal squamous cell cancer

9 Mar 2018 14:23 in response to gilliebean
Hi Gilliebean I spoke to the radiographers today and they have said again only salt water. I can use something at week-ends but they have said because my skin is breaking up its prone to infection or best not to use anything during the treatment....I will definitely try the round cushion with a hole in the middle its worth trying! I haven't been told to eat anything different. She said its not uncommon at 2 week s into the treatment and likely will be ok on the blood test Monday and they will review again then to either resume or give lower dose. I am hoping will be ok. Its the platelets not the blood I would told today - white and red blood was fine. Anyone else had this problem? xx

Re: Anal squamous cell cancer

10 Mar 2018 23:30 in response to Mandydk

Hi Mandy,

That seems so odd to me.  It seems like they would offer a topical that would help the skin to heal.  I know it's good to just let it air (giggle).  But there is a prescription hydrocortisone lotion/cream that helps the skin to heal.  Unfortunately, it doesn't dull the pain, but it speeds along the healing process.  You cannot use it prior to treatment that day.  Is there a way you can get a second opinion without stepping on anyones toes?  I'm not sure that the radiographers would know.  I think they are more on the technical end of the treatment.  Can you ask a nurse.  Both physician assistants that supported my docs gave me misinformation or prescripted the incorrect strength on a prescription.  My doc offered the cream, but I asked about the ointment which really shields the skin and makes a huge difference.  

I had issues with my white blood count (still slightly low) and the platelets.  My white blood cell count was 0.03 when I arrived at the hospital.  They were able to stay on top of it daily.  They gave me an injection for a couple of days due to the white blood cell count and also a blood transfusion.  I had just completed my last round of chemo at the time; however, I still continued with the last two radiation treatments while in the hospital.  They said it sometimes takes a year for the white blood cell count to get back to normal.  I carry surgical face masks in my bag and if I happen to get around anyone that's coughing or sniffling I put it on.  Flu season has been really bad this year so I'm paranoid of germs.  Don't worry.  They will fix you right up.  I had an especially difficult time because I started out so ill and underweight.  You will be able to fight it.

I was supposed to see my surgeon last week and would have had an update on the success of the treatment, but her office called and rescheduled 3 weeks out.  I've had tummy issues that hit about half way through my treatment.  I get really bad stomach cramps and nausea comes and goes.  I've been unable to gain more than a pound and really need to put some weight on.  Both of my oncologists said that I should not still be having these symptoms from the treatment.  They have prescribed several different medications and nothing has helped so they referred me to a gastro doc.  The doc I have been seeing is a colon/rectal specialist.  So many doctors!  I saw the new doc last Thursday after a 3 week wait to get in and she prescribed some antispasmodic medication.  If it doesn't work (and it hasn't worked thus far), I will have the scope test (hopefully next week).  They said it's quick and they will put me to sleep.  I know the chemo had a party in my tummy and apparently they had a lot of fun.  I'm ready to feel better!  This has gone on for months and months.  

Let us know how it goes Monday.   You guys are always in my thoughts.  Sheri


Re: Anal squamous cell cancer

11 Mar 2018 14:08 in response to texasgirl
Hi Sheri Thank you for all your suggestions and I will ask to speak to someone tomorrow regarding the burns which are uncomfortable to say the least. Even if I can put some on weekends I am sure it would help. I hope the chemo will get sorted tomorrow and I catch up! You do seem to have suffered from the treatment which is taking its time to go. I hope the treatment they have prescribed works. What the scope test? You must be feeling exhausted with the continual problems. You mus also be anxious to get some results from the treatment you have had as well. I hope they sort this out for you soon and wish you all the best. Let me know how it goes. Thinking of you...Mandy xx

Re: Anal squamous cell cancer

12 Mar 2018 07:28 in response to Mandydk

Hi I have just been diagnosed with Anal cancer on 6 March, all I know is that it is early stages, don’t know what type yet. I have a PET scan on Thursday and I meet the Oncologist on the 21 March I gues they will let me know then. Although trying to be positives about the outcome as it is early stage I’m stil very scared. I look the picture of Health can’t belive I’ve actually got this! Really embarrassing place to get it, is it best just to tell people straight? Obviously close friends and family know but I feel alone!

I have read this thread and decided to join, the treatment sounds scary to be honest I don’t know what to expect but I suppose when I meet the oncologist things will be explained?

i think you are all brave

Lynne x



Re: Anal squamous cell cancer

12 Mar 2018 09:12 in response to Lyndylou67

Hi Lynne 

welcome to our wee support group.

i was the same as you went to the doc with a sore foot mentioned tummy was a bit iffy and before you know it was getting colonoscopy mri cat scan and diagnosed.

It is a really scary time and I think we would all agree it’s the waiting that’s hard. Like you say it is embarrassing but I just called it Botty cancer I don’t like the “a” word! 

I think for me it was the unknown once you get your diagnosis and then your planning session done and a start date for treatment I felt a bit better. 

Weve all had slightly different treatment plans on here - I had one intravenous chemo followed by daily chemo tablets and 28 radiotherapy sessions - compared to some of the girls I didn’t suffer too badly from the chemo but I think we’ve all suffered from the radiotherapy side effects but there’s lots you can do to help - for now just take it one day at a time, be kind to yourself, let others help you and stay as positive as you can. 

Im now 5 months post treatment and got my MRI results last week and was given the all clear - so there is light at the end of the tunnel.

For me this is a great wee forum as you’re able to talk to be people who know exactly what you’re going through definitely helped me feel less alone. 

Hope you’ll keep in touch and let us know how you’re getting on and if you’ve got any questions sure one of us will be able to help.

Take care 

Sandra x 



Re: Anal squamous cell cancer

12 Mar 2018 10:07 in response to Lyndylou67

Hi, Welcome to the forum. I joined here for advice and support and I think it will really help you. I am currently having treatment, 20 sessions of radiotherapy out of the 28 done and will have my second round of chemo today. It is all very scary when you get diagnosed and my mind was going ten to the dozen. The side effects you read about are not the same for everybody, I found the chemo manageable, no mouth problems, I was sick mid cycle but they gave me new meds and that was sorted. Only now on my 5th week are my bits getting sore but it is “doable”. I must admit when the dates were set and I got started I just kept thinking each day was then another day closer to the end. Sending my best wishes xx

Re: Anal squamous cell cancer

12 Mar 2018 10:19 in response to Lyndylou67
Hiya Lynne, Welcome to our group. You will find lots of help and support on here, these ladies have all helped me. I was diagnosed just before Xmas, after I went to Dr with piles and had surgery. My treatment starts next Monday, having a picc line inserted tomorrow. I found the embarrassment thing an issue, I still do to an extent but everyone I have seen so far have been wonderful, I tell them how I'm feeling and they do their best to put my mind at rest. My hospital did an open evening the day before my planning which we went to and found it very informative plus I got to meet some of the staff beforehand. Keep in touch , any questions don't hestitatte to ask, one of us will see it and answer as best we can. Sue x

Re: Anal squamous cell cancer

12 Mar 2018 14:00 in response to Lyndylou67
Welcome to this small group Lynne, Don't worry! Having been on this site for the last couple of months I feel it has helped me enormously to come to terms to it....its also given me huge reassure and helped me understand that although this is a fairly rare cancer there are others out there and you aren't alone. I am half way through treatment and although everyone is different so far not too bad. Its all manageable. Once you have your dates to start the treatment is moves by quite quickly and you feel that something is being done and this in its self helps. I, like you, have told close family and friends - its one of those things that we all deal with differently. Its not that I was embarrassed - more like I didn't want to be looked at differently.. As it happens this isn't the case and everyone that now knows just wants to help you. Regarding the 'healthy look ' - well just like you I felt healthy, looked healthy and still do - apart from a sore bum! The chemo hasn't given me any side effects yet although only 1/2 way through could still give me something further down the line.. The assumption is that generally someone with cancer looks ill and feels ill. Unfortunately ..this isn't the case. I have made some good friends at the hospital that I sit with you prior to treatment and they all say the same...all shock with their news and are feeling well - apart from the diagnoses. I am sure once your treatment starts you will have had more time to come to terms with the shock. Do keep in touch and any questions please don't hesitate to ask. Wishing you well on your journey and lots of love. Mandy xx

Re: Anal squamous cell cancer

12 Mar 2018 21:44 in response to Mandydk

Hi Lyndy Lou,

it is scary and the wait is grueling, but it should be smooth sailing with an early diagnosis.  Without my knowledge my hubby told our friends that I had colon cancer because he felt like it was a private matter.  So when I talked to the same friends about my cancer, they were very confused.  It is a bit embarrassing, but it shouldn't be.    

The radiation treatments are tyipcally quick 15 minute sessions.  Most people don't have any issues with treatment for the first two - two and a half weeks.  

I hope the time flies by for you and you have this behind you realy soon.