Is there anyone on here who has had anal squamous cell cancer x
I've had a look around the forum and found @JRose - who will hopefully stop by to say hello now and tell you more about their diagnosis now that I've tagged them in this post - as well as two discussions with members in a similar situation to yourself that you may like to get involved in which I've included here and here for you to have a look at.
I've also included a link to the section on our website about anal cancer so you can find out more about your diagnosis. If you have any questions don't hesitate to get in touch with our cancer nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m who will do all they can to help.
Steph, Cancer Chat Moderator
Yes, I was diagnosed at Stage 3B nearly 7 years ago. Not around this site much now because I have been free of cancer for some time. I had check ups for 5 years with one false alarm and no recurrances.The treatment is wearing but keep going because it works. Even though I have been left with some side issues I now feel fabulously healthy and my fear that I would never be healthy again was unfounded. What stage are you at?
I was diagnosed with T2squamous cell anal carcinoma in July this year - I underwent 6 weeks of chemoradiation therapy - it was quite tough I found the tiredness really hard and my skin broke out quite badly. My specialist nurse was a god send she helped with pain relief and grat creams for my skin.
I had my eight week follow up apt just over a week ago and although I’ve to get a scan in Feb next year my consultant was able to tell from an examination that there was no longer any abnormality. To be given this news was just amazing and although I still have to get the scan and will be monitored for three years there is light at the end of the tunnel.
I found it hard to find many people who had been diagnosed with this Type of cancer but I had fantastic support from the staff at the Beatson in Glasgow and I have been going to the Maggies centre and took part in done sessions got relaxation amongst other topics which I found really helpful.
I wish you all the very best with your treatment and if there is anything else you’d like to ask please get in touch.
kind regards Sandra
Hi Janelucia I found as the weeks went on I did get more and more tired- I’ll be honest the couple of weeks after I finished were actually the worst for me. But do sleep when you can and don’t feel guilty about it - it’s the best way for your body to recover. Also if you do get sore let your nurses know as soon as possible as they can give you pain killers I persevered for a bit too long - and as they told me you really don’t have to suffer pain.
I’m now 10 weeks post treatment and although I do feel I’m getting stronger I still get very tired but I’ve learnt to take it easy if I’ve had a busy few days and have “lazy” days! I found the driving for treatment every day took its toll so took all the help offered as someone said it lets your friends and family feel useful and able to help you in some way.
I wish you well over the next few weeks and let me know how you’re travelling- take care.
Hope you don’t mind me messaging you - really good to r ad your post and delighted that you got a good outcome.
Im now about 11 weeks post treatment and doctor pleased with my progress can I just ask you - does the tiredness go away eventually? I find if I do too much one day I’m exhausted the next - hoping to start getting back into an exercise routines be in the new year which might actually help?
Hi I hope you are doing ok I have been diagnosed and am waiting to start treatment in January I have my planning on the 10 th .its so difficult to find info on this type of cancer . The waiting is the worst!
I agree the waiting is definitely the worst bit and I was the same when I got diagnosed couldn’t find anyone else who had been through it. As you’ll see from my post above I’m now 11 weeks post treatment and doing really well I’ve still to get a scan in February but from my last examination about three weeks weeks ago there was no sign of the tumour so I am staying positive.
I don’t know where the y live but I’m in Glasgow and got amazing support from the Beatson and in particular my specialist nurse. I also went and still go to the Maggies centres they’re great.
If there is anything you want to ask me please feel free to message me as I wish I had had someone to talk to when I was starting out.
Wishing you well over the coming weeks
Kind regards Sandra
I had been thinking about you and hoping you are getting on ok - I know it’s not easy but try to stay positive and be kind to yourself rest when you can and even though I’m sure there will be days that are hard you will get through it.
I had a countdown calendar and found it good to score off every day after another treatment was completed. Anything to try and stay positive.
kind regards Sandra
Are you getting chemo and radiotherapy?
One of the best bits of advice I got was just take it a day at a time and write down any questions you have (when they pop into your head - for me usually at 3 in the morning) and don’t be afraid to ask your doctor/nurse or radiographer they are the ones that can help you most.
I hope you have lots of support around you as you can feel very lonely at times.
Oh wow I didn't expect a response so quickly, it is comforting to know that I am not alone with this type of cancer mine had already spread to one of my lymph nodes in the groin which they have removed as they couldn't find the primary , I had a colonoscopy and a sigmoidoscopy but they missed it both times, mine was picked up on a pet scan and then a biopsy done which confirmed the site. I ve been worried about the length of treatment because the surgeon told me 6 months! Seems rather a long time I m wondering if he meant 6 weeks! Also the waiting for treatment is worrying as I keep thinking it may be spreading, I phoned the cancer nurse and she told me not to worry as the chemo would get any stray cells but I still can't help worrying. It's embarrassing isn't it being anal !
Yes I found it quite hard to come to terms with too - hate the word “anal” so it was “bum” cancer all the way for me - had to joke about it was only way I could deal with it! Can’t believe there are now three of us on here with the same thing!
I was lucky in that I didn’t need surgery and had 6 weeks chemo radiation - as I said to JaneLucia please don’t be afraid to ask questions at first I felt like I was being a Nusiance but as my specialist nurse pointed it / it was me going through it and I had every right to ask and get answers.
Mine got picked up after a colonoscopy that my doctor arranged after an examination and I was very lucky in that it was all dealt with really quickly.
Hopefully after your planning session on the 10th you will feel a bit more in control.
Take care thinking of you
Kind regards Sandra x
My first chemo was intravenously then 4 tablets morning and night on days of radiotherapy - I wasn’t good with the intravenous one but once got used to tablets wasn’t too bad. Wasn’t sick and the hair loss (below the last waist saved in expilation costs - every cloud and that )
Awh thank you so much for the reply - I’m determined to start exercising more in the new year - once we get rid of all this snow and horrible weather.
Its so good to hear that you’ve had such a positive outcome and gives hope for the future.
My best friend made me a padded ring which was a godsend I think she should go into business!
Wishing you continued good health
warmest regards Sandra x
I know exactly how you feel - totally isolated- I was the same at first and I’ll admit I did find the treatment tough there were a lot of tears and feeling sorry for myself. As the weeks progressed there was quite a fair bit of discomfort and pain but again my specialist nurse was amazing take all the lotions potions and painkiller they give you.
Six weeks felt like a lifetime that would never end but by ticking it off each day I got through it - please don’t write yourself off you’ll get through it too.
Im just home from a lovely day with family and friends which if you’d told me even a few weeks ago I’d be doing I wouldn’t have believed I’d be out and about again and even partaking of a few wines!
Stay positive and please in touch i’ll be thinking if you
Hello Janelucia, I just discovered this website. I am a 67 year old female and I live in Texas. I was misdiagnosed with internal hemorrhoids by two doctors last year. I had a colonoscopy in 2013 and we believe it was overlooked at that time. It can lay dormant for 10-30 years. By the time I got an appointment for a third opinion, the mass was quite large (T3) and into the wall. I was very ill. One lymph node lite up during a PET scan and they said the vagina was questionable. So they went after all of it. I completed chemo and radiation October 10th, 2017. I will find out if the treatment was successful in early February after a CAT scan in late January.
I have been skinny my whole life and my weight started plummeting before treatment started. I didn't have any fighting weight and had a harder time of it than possibly someone at a healthier weight and in relatively good shape to start with. I think the trick is to drink tons of water after chemo to flush it out of your system, eat small portions throughout the day and follow a soft diet. I wanted to sleep until treatment was over, but it's better to stay active. Most people don't notice any side effects of treatment for the first 2 - 2 1/2 weeks.
I'm hoping the treatment breezes by for you and is completely successful. Sending warm thoughts your way. Let me know if you would like to discuss privately and I'll send you my email address.
Ah thank you for the advice , I can't wait to start treatment as I fear it may be spreading I am having night sweats and pains in my other groin and niggles here and there ,your mind starts running away with you , I phoned the cancer nurse and she told me not to worry ,that the chemo would get any cells but I m still worried! I know the road ahead is going to be tough but it's great to know that you have come out the other side. Thanks for the support it's so nice to have someone who knows what it's like , have been thinking of janelucia also going through it right now! Planning on Wednesday! So treatment should be starting soon! GoGo
Yeah week four so back to chemo next week. Chemo makes me feel really sick but have been told anti sickness drug will be added next week. Its always on my mind if its working and i really really hope it is.......
Did your bottom get sore and if so what did you put on it.
Hi I know it’s such a worrying time and it’sall you can think about but I’m sure you’ll get through it.
Yes my skin broke out badly I was told only to use what the hospital gave me which was proctosedyl ointment, morphine gel and also a pad type think called Polymem which really eased the pain - I was also given oral morphine ask your nurse or radiographers what you can get - I persevered for a bit too long thinking I was being brave - it was daft as they told me you don’t need to suffer pain and they can help you manage it.
hopefully the anti sickness will help I was lucky and didn’t feel too bad.
Youre on the home straight
Gilliebean, I worried about the same exact thing and couldn't understand why it took so long to start the treatment. I did not want to do any of it and I hate people messing with my bum, but I was also anxious to get treatment started. It took 6 weeks to get an appointment with the surgeon and another three weeks before treatment started. The surgeon told me that waiting 6 weeks did not cause the cancer to spread or worsen; however, I waited too long to seek a third opinion and I deteriorated pretty quickly (so it's my fault - not theirs). My docs work in different locations, but coordinate as a team. I didn't know that they weren't in the same location when I made the appointments.
I cried the first time I walked into the chemo room and some days shed a tear or two during the radiation treatment. I felt silly for crying because everyone around me was so brave. I had portable chemo, but I could hear the pump as it worked throughout the day and night. The radiation equipment makes a noise as it circles the body. I kept my eyes closed and held my fingers over my ears and tried to sing songs in my head for distraction. For some weird reason it freaked me out to see the machine in action. I would only allow myself to cry briefly because it only made me feel worse. And there were so many others in much worse shape than I was. Most of the patients in the waiting room were well dressed and well groomed. It took everything I had in me to shower and get dressed and get to the treatment center. I have a surgeon, a chemo oncologist and a radiology oncologist. I'm 5 days short of being 3 months post treatment. I am feeling much stronger and can actually clean my house now. The pain when going to the bathroom eased up around two weeks after my last treatment. It was/is still painful; however, the pain is tolerable. I'm forcing myself to eat throughout the day up until I fall asleep at night. I'm determined to put the weight back on. The nausea still hits (the docs say I should not still be nauseated); however, I have found a system that seems to be working. I take a pain med and an anti-nausea med as soon as I wake up. I lay perfectly still for about 20 minutes giving it time to work. This has made it easier for me to tolerate food. I'm sure your docs will suggest small meals throughout the day, drink tons of liquids, and avoid meat, sugar and diary which is hard to digest. I agree with SandsJ that using a topical lotion and ointment helps tremendously. I asked my doc about the ointment after researching on-line. The lotion helps the skin to heal and the ointment helps with the pain when going to the bathroom.
There is a huge movement towards THC being used for medical purposes. I am not brave enough to go with non-tradtional treatment, but if I had easy access to it I would be willing to try as a combination treatment. Marijuana is illegal in TX and I have found that synthetic marijuana, which can be prescribed to cancer and HIV patients, is not the best route for me.
I have a friend that was diagnosed with stage IV lung cancer two years ago. He will be on chemo for the rest of his life, but he has never been sick from the chemo and has continued to work on his land. Everyone reacts differently.
I know if I had done things differently from the beginning I would have had a much easier time with the treatment.
I hope the next few days fly by for you. I will keep you in my thoughts.
Hi Texas girl
thank you so much ,I had a few tears reading your message it's comforting to read your account and gives me hope as it sounds that yours was a similar stage to mine. I think thet waiting and the build up to treatment is a nerve racking time and yes why does everything take so long! I had my lymph node out in September and they found the squamous cell however they could not find the primary , as I said missed it twice in tests and then pet scan picked it up ,then biopsy in November confirmed it , it just seems such a long time from when it was in the lymph 4 months!! Incredibly long time with cells not knowing where they are going to next! I do hope that you will get good results in feb will keep fingers crossed that all will be good for you and thanks for taking the trouble to reply it is really helping me ,love gilliebean.
thank god you are ok have been worried about you !good luck with the next lot of chemo !ask them if you can have andansatron it is the most expensive of the anti sickness drugs but one of the best! In all my operations over the years I have been great with that one where as others tend not to work or make me worse. I know they don't usually give that one unless you ask for it . Haven't put anything on my bottom I think sands is the best one to answer that . Just got my exemption certificate for prescriptions as I m sure I m going to need it . Keep strong only two more weeks for you!! Love gilliebean
will be thinking of you and hope you get through this next week ok ,you re almost there and I have my planning on Wednesday! how long did it take from your planning to when you started my nurse reckons it's very quick so I would hope to be started by Monday! Good luck anyway hope all goes well x
Hey there Gilliebean,
So was the squamous cell not the primary? Or did it just get overlooked twice? I read last night that the amount/strength of the chemo is based on the size of the tumor. My guess is that they hit it harder the larger it is.
I had to wait about the same amount of time as you are waiting for treatment to start. Maybe that's a good sign. It seems like they would jump on it quickly if it were an agressive cancer. It is hard not to worry with every ache and pain.
You are in my thoughts and Janelucia as well. I'm thankful to have found you guys for support and ready to feel as good as SandsJ.
Big hug, Sheri
they found the squamous in my lymph in the groin as it was the size of a duck egg but they couldn't find the primary then they picked it up on the pet scan in my bum so it had already spread to the lymph which they removed in September then they operated on my bum in November so now I have to have the chemo and radio for any cells that are still there so will have radiotherapy to my pelvis bum and groins and 2 rounds of chemo each lasting 4 days ,so I bring it home in a pump attached to my picc line. I ve now got to wait another 2/3 weeks because they don't have enough chemo nurses available for the ammount of patients needing chemo!
Thanks for being here
Hey thinking of you hope your sickness wasn't as bad this time and that you have managed to get through the week I bet it's been tough and have been thinking of you and hoping that you are as alright as it's possible to be! You re nearly there! Sending hugs your way .
That sounds like a nightmare. I'm so sorry you have to wait to start treatment. I was scared of the treatment, but I was also scared it was spreading during the wait. Apparently that is an unfounded worry.
We had similar experiences except the docs wanted me to have chemo/radiation first and are hoping that surgery will not be required. No promises since it was quite large and in the wall. I still have an ulcerated area so I'm constantly worried about surgery. I will probably be bombarding you with more questions if that happens.
Keeping you in my thoughts and sending warm wishes your way.
Hi Janelucia hope you are ok been thinking about you and wondering if you ve finished your treatment ,haven't heard anything since you were going to have your last lot of chemo do hope you re ok any way just to say you re in my thoughts ,Gillie x
Sorry to year you are having a hard time- have they prescribed oral morphine and the gel for you I found they helped also they gave me polymed pads which I found helped.
I think you’ll have finished your treatment now - I found the two weeks following that the hardest but then seemed to turn a corner,
Im sending you warmest wishes and if you can persevere for the next couple of weeks I’m sure you’ll start to feel better.
take care Sandra x
Hi Janelucia , have been worried about you and so sorry to hear that you are suffering pain from the radiotherapy just wanted you to know that both me and sands have been thinking of you and wishing you well. As sands says the 2 weeks after treatment were grim but then hopefully you too will turn that corner as she did. Wishing you a good recovery and hope that your pain eases soon . Love and best wishes Gilliebean x
This is really weird that I have just found you. Its Mandy. Like you I have just received my diagnoses. I have also been diagnosed with anal cancer and will be starting treatment within the next 2-3 weeks. Its all very scarey but just found this site and it helps to read all the positive responses and people going through similar experiences. Do get in touch if you wish I would like to see how the treatment goes and I wish you well. I believe positive thoughts are a must. xx p.s. I do like to message friends so if you want to get in touch I would be happy to give you support from an old friend! x
Hello, radiotherapy finished last Thursday but was not prepared for the radiotherapy burns that continue after treatment. Have we chatted on another site or do I know you from somewhere you seem familiar. Picc line is due to come out Monday as long as all goes well x
Glad to hear your side effects have settled down now and your treatment has finished. Like you I have been diagnosed with anal cancer. My treatment starts in 2-3 weeks so its early stages for me. I have been on the site for the first time today to try and get some feedback of what to expect. Its all very daunting. Like you I have a good family helping me along this road. It would be nice to keep in touch and give each other some encouragement. This site is wonderful and gives information that you otherwise wouldnt have. Wishing to all the best for the future. x