HPV related anal/rectal cancer

Hi Kateskins03

Another welcome from me. I won't repeat what others have said just know you can ask anything you like nothing is out of bounds, everyone will support you in whatever way you need. Sending hugs. Xx

Hi Kateskins,

I would only add to the other posts here start preparing for your treatment - like you were going into training for something. Keep your skin down below moisturised with something gentle, start planning easy meals and snacks to eat in case you can't be bothered cooking or don't feel like eating much. think about books you might like to read or TV you could watch whilst you rest. You might want to invest in a sitz bath if you don't have a bidet - lots of people here found it really useful for cooling, cleaning and even using as a toilet; it can be easier to 'go' into water if it's painful.

I wish you every success; it can be quite a harsh treatment on your body, but very effective. xxx

Hi Kate,

It seems we're on a very similar path. I see my oncologist for the first time on the 30th April... been having symptoms for a couple of years, but eventually had a sigmoidoscopy on 6th March and shortly after had my diagnosis. 

I've been told (after PET scan) that it is still 'localised' to the area, but it has spread into surrounding tissue, pelvic muscle and and a couple of lymph nodes. Like you, it seems HPV is the likely cause, of which i had no idea! Had a positive smear a couple years ago, but was never made aware this could happen and no health professionals connected my symptoms. 

We are told this form of cancer is slow growing and highly treatable. That is definitely something to hold onto! I wish you the best and will keep a look out to see how you're getting on xx

Thank you, Bungle1! I appreciate it! I am a TMI girl with all of this, so I’m glad I found my people who don’t mind a little TMI

Thank you for that helpful information, Mrs Vanilla! I have been seeing a lot of people say that a sitz bath has been a lifesaver! I am definitely going to purchase one! What did you use to moisturize down there? I want to make sure I am stocked up and ready to go with all the important necessities.

Hi Jen! Thank you for reaching out. I am sorry to hear that we are in this not so fun boat together, but it is comforting knowing I have someone going through this with pretty much the same time line. I am happy that yours is localized! You will have to keep me posted on what your oncologist says on the 30th. I was definitely relieved when I heard it is highly treatable. I am definitely holding on to that. Thank you again! Xoxo

Hello sweet one of many! Thank you so much for sharing your journey with me! You have given me such helpful informatio and reassurance. I am very happy to hear that you didn’t lose your hair! I hope I have the same turn out as you. Even with the public hair loss! I will be very happy with that part! Haha. I am very interested in the cold capping and have read a lot of good things about it! I am going to add that to my list of necessities to buy!

I am looking forward to the day I am in your position looking in the rear view mirror. You all have given me so much hope and faith that this is all going to be okay! 

Thank you again! I hope you have an amazing night and I will keep you updated on my journey

Hi Kateskin 

I was given aveeno by the radiation team for moisturiser, which was really good. If you start using it before you have side effects, your skin will be well moisturised beforehand.

Best of luck

Sarah x 

Hello Kateskins03

Another big welcome to the forum although I am sorry to hear that you have had the diagnosis all of on here have had.  I am sure that you are still in shock and full of trepidation about the treatment - the first couple of months are full of scans and checks but once treatment starts you will feel a lot more in control of what is happening.  It is tough for most of us but it is for a only a short time and with luck leads to a cancer-free future.

We have lots of tips and coping strategies so please let us know when your treatment starts.  And even if you just want to let of some steam, that's fine too!

Big hug

Irene xx

Hello friends. Just a little update. I met with the colorectal surgeon on Wednesday, and both the medical oncologist and radiation oncologist on Thursday. I am very happy with the team I have been paired with. Everyone was so caring and I felt very comfortable with the treatment plan ahead. There is no start date yet because I am pending a PET scan which is set for the 14th and they need that as a baseline scan before we can start. My treatment regimen will be 6 weeks long and it will be a combination of chemo and radiation. I will be taking pill formed chemo called Xeloda (3x in the am and 3x in the pm) mon-Friday along with driving to radiation therapy mon-Friday. On days 1 and 29 I will name Mitomycin via IV (not sure if I will have a port put in or not yet) I’m getting close to the starting line and feeling very anxious and excited in a weird way. Lol. I am also going to take a disability leave from work for a few months, so I am getting ready and looking forward to that as well! Did you guys work through it? Or take a leave? I have my Amazon cart ready with some necessities, but if anyone has anymore tools that worked well for them, let me know. I hope everyone is doing well! That’s my update for now