New warrior - scared

carylanne
carylanne Member Posts: 3
edited March 2014 in Anal Cancer #1
I am so glad to have found this board.
I have just had my first exam and consultation with the Cancer centre team for squamous cell cancer in anus and vulva. I'll be starting radiation therapy in 2-3 weeks (five days a week for 6-7 weeks they say). Meanwhle having tests for other underlying health issues (lungs and liver) to see if chemo will be thrown into the mix too.

I am terrified and will be reading all the back posts here for insight and, hopefully, some calming influence.

Thanks for being here and sharing.

Caryl

Comments

  • lemonade
    lemonade Member Posts: 63
    #2
    what to do
    I am offering some of my suggestions, having finished 6 weeks of radiation in October '09. It was very uncomfortable and painful for me the last 2-3 weeks. I had to resort to urinating in the shower with the handheld showerhead spraying on me because the urine was painful on the burns. I used silver sulfadiazine cream. It was very soothing. Ask for the 400 gram size because you will need it. The first few RX's I had filled came in a tube and I used them about 1 per week. The 400 gram jar lasts much longer and it was the same co-pay for me. Domeboro (you can get it without a RX at the drugstore) soaks helped some with the burning.

    I also had a complete rotator cuff repair in April 09. I had to do a couple of months of physical therapy immediately post surgery so scar tissue wouldn't build up and to heal the shoulder.

    I go back to my doctors in March. I am having problem with pelvic pain - it is hard to sit cross-legged on the floor, hard to reach my feet to put on my socks, etc. The area is very stiff and sore. I have started to do stretching exercises for hip replacement patients (I found them on the internet). I am wondering if I should have been doing light stretching as soon as my skin healed. You might want to ask your doctor about that.

    Good luck with everything.
  • JDuke
    JDuke Member Posts: 438
    #3
    Caryl
    First of all take a DEEP BREATH and now ...EXHALE... slowly. Repeat as necessary.
    I am glad that you found this board at the very beginning of this understandably frightening development in your life. The good news is that this cancer responds well to treatment; most here are cancer free and recurrence is even rarer than the cancer. I did not join until Dec.09 and know I would have benefited greatly from the support and experiences of others that have been through this. This is a fantastic place to come when you have questions, need support, are ticked off and need to vent, whine, whatever, we are here. Ask ANY questions you want, nothing is off limits.

    I was DX'd in April '08 with a 2cm mass. I went through 5 weeks of radiation with chemo the 1st and 5th week. Followed up by 8 boost radiation treatments for insurance. It was tough there is no reason to imply otherwise, but you will get through this. Everyone responds differently to treatment and has different degrees of side effects. We have all been through them and can offer suggestions for things we have tried that have made it a little easier.

    There will be others chiming in soon to add their welcomes and comments. Please visit often and feel free to private message me if you feel the need.

    Warmly,
    Joanne
  • carylanne
    carylanne Member Posts: 3
    #4
    lemonade said:

    what to do
    I am offering some of my suggestions, having finished 6 weeks of radiation in October '09. It was very uncomfortable and painful for me the last 2-3 weeks. I had to resort to urinating in the shower with the handheld showerhead spraying on me because the urine was painful on the burns. I used silver sulfadiazine cream. It was very soothing. Ask for the 400 gram size because you will need it. The first few RX's I had filled came in a tube and I used them about 1 per week. The 400 gram jar lasts much longer and it was the same co-pay for me. Domeboro (you can get it without a RX at the drugstore) soaks helped some with the burning.

    I also had a complete rotator cuff repair in April 09. I had to do a couple of months of physical therapy immediately post surgery so scar tissue wouldn't build up and to heal the shoulder.

    I go back to my doctors in March. I am having problem with pelvic pain - it is hard to sit cross-legged on the floor, hard to reach my feet to put on my socks, etc. The area is very stiff and sore. I have started to do stretching exercises for hip replacement patients (I found them on the internet). I am wondering if I should have been doing light stretching as soon as my skin healed. You might want to ask your doctor about that.

    Good luck with everything.

    Thanks so much for the tips
    Thanks so much for the tips re. the creams. I assume they're equally accessible here in Canada and will add it to my list of questions for the cancer treatment team. Also good idea about the shower.
    I hope your pelvic pain resolves itself easily!
  • carylanne
    carylanne Member Posts: 3
    #5
    JDuke said:

    Caryl
    First of all take a DEEP BREATH and now ...EXHALE... slowly. Repeat as necessary.
    I am glad that you found this board at the very beginning of this understandably frightening development in your life. The good news is that this cancer responds well to treatment; most here are cancer free and recurrence is even rarer than the cancer. I did not join until Dec.09 and know I would have benefited greatly from the support and experiences of others that have been through this. This is a fantastic place to come when you have questions, need support, are ticked off and need to vent, whine, whatever, we are here. Ask ANY questions you want, nothing is off limits.

    I was DX'd in April '08 with a 2cm mass. I went through 5 weeks of radiation with chemo the 1st and 5th week. Followed up by 8 boost radiation treatments for insurance. It was tough there is no reason to imply otherwise, but you will get through this. Everyone responds differently to treatment and has different degrees of side effects. We have all been through them and can offer suggestions for things we have tried that have made it a little easier.

    There will be others chiming in soon to add their welcomes and comments. Please visit often and feel free to private message me if you feel the need.

    Warmly,
    Joanne

    Thank you thank you Joanne.
    Thank you thank you Joanne. It brought tears to my eyes, but then I seem to be constantly on the edge of crying the last few days.
    I don't know my tumour sizes, except they are multiple over the entire area. So they will be targetting nearby lymph nodes in the groin too. Is that common?

    Right now my biggest concern is about mobility once the treament progresses. How on earth do you sit in a car to get get to treatments (Which will be an hour each way!). Or sit at all? It's painful enough for me now to the point that I can only drive short distances and anything longer than about 15 mins, my husband drives so I can squirm into comfortable positions as needed.

    Also, I've heard that exhaustion is the main side effect from radiation. Any comments?

    Thanks again
    Caryl
  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    carylanne said:

    Thank you thank you Joanne.
    Thank you thank you Joanne. It brought tears to my eyes, but then I seem to be constantly on the edge of crying the last few days.
    I don't know my tumour sizes, except they are multiple over the entire area. So they will be targetting nearby lymph nodes in the groin too. Is that common?

    Right now my biggest concern is about mobility once the treament progresses. How on earth do you sit in a car to get get to treatments (Which will be an hour each way!). Or sit at all? It's painful enough for me now to the point that I can only drive short distances and anything longer than about 15 mins, my husband drives so I can squirm into comfortable positions as needed.

    Also, I've heard that exhaustion is the main side effect from radiation. Any comments?

    Thanks again
    Caryl

    Welcome Caryl
    I'm sorry you have gotten this diagnosis, but we are here to help you get through this treatment. It is not fun, but so many have gotten through it and gone on with their lives--you will too! If you have had a PET scan, they should have been able to stage your cancer. However, you mention that you are in Canada and I know from communicating with others there that PET scans are not often done. What type of scan did you have--CT or MRI? You asked if treating the groin lymph nodes is common with this treatment--YES! I was stage 1 with no lymph node involvement, but my entire pelvic region, including lymph nodes was included in the treatment field at the beginning. After a period of time, they decreased my treatment field two different times, the last being targeted only at my anal tumor. This is done to take care of any rogue cancer cells that could be lurking. As for the sitting problems, is this due to pain from the tumor or biopsy? You may try getting a "donut" to sit on, as this will take some of the pressure off of your anal area. I had to lie down most of the time towards the end of my treatment, as sitting was just too uncomfortable. As for the exhaustion, this can be caused by both radiation and chemo. I suspect you will also be receiving chemo with the radiation, as this is the standard treatment for anal cancer. The chemo will make the cancer cells more susceptible to the radiation. If your doctors don't mention chemo as part of your treatment plan, you need to ask them why! I urge you to take a look at the website for the National Comprehensive Cancer Network. There you will find the protocol recommendations for treating anal cancer. All you need to do is register to view this information. Print it out, if possible, and take it with you to your doctor's appt. I wish you the very best with your upcoming treatment. Please keep us posted as to how you are doing.
  • lizdeli
    lizdeli Member Posts: 569 Member
    #7
    carylanne said:

    Thank you thank you Joanne.
    Thank you thank you Joanne. It brought tears to my eyes, but then I seem to be constantly on the edge of crying the last few days.
    I don't know my tumour sizes, except they are multiple over the entire area. So they will be targetting nearby lymph nodes in the groin too. Is that common?

    Right now my biggest concern is about mobility once the treament progresses. How on earth do you sit in a car to get get to treatments (Which will be an hour each way!). Or sit at all? It's painful enough for me now to the point that I can only drive short distances and anything longer than about 15 mins, my husband drives so I can squirm into comfortable positions as needed.

    Also, I've heard that exhaustion is the main side effect from radiation. Any comments?

    Thanks again
    Caryl

    Caryl,
    The treatment is
    Caryl,
    The treatment is quite a journey, but thankfully not a long one. In a few months you'll be looking back and wondering how you got through it. But you will get through it. Radiation does it's work but not without side affects. For now, let's focus on the side affects during treatment. They'll be lots of time for post treatment side effect discussion (aches in the hips, etc.).

    Being tired is a definite side affect of radiation. Listen to your body and rest when you need to. Don't fight it. If your appts are an hour away, I'd suggest not making early appts for radiation. Just in case you don't feel so good in the morning. I needed a plastic donut to sit on for awhile. You may want one for the car ride. It gets more painful toward the end of the treatments. I don't mean to be negative, I just want to be honest with you so that there are few surprises. Not sure what your chemo regime is, but once you start (if they decide you need to) you may find that some days are good and some not so good. I had a fanny pack with my Flurocil (can't remember how to spell that) 24 X 7 M-F. On Mondays I had my cisplatin chemo treatment and I would be at the hospital for 5 hours or so. Two days after the cisplatin (every Monday for 7 weeks) was when I felt the worse. I never got really sick from it, just didn't feel right. Queasy, weak, sensitve to smells. It's very imporant to stay hydrated. Drink lots of water. It's important for your bladder during radiation.

    Talk to your doctors about what creams they can recommend for the burns. Also ask about sitz bathes, they help from what I've heard. I didn't use them, but many others have.

    This is a scary time. Once the fear subsides a little, the fight sets in and the determination to beat this! We'll be here for you and you will be in my prayers. When you share your experiences we will be able to help by sharing how we dealt with it.

    Please keep us posted. Wishing you healing.
    Liz
  • SueRelays
    SueRelays Member Posts: 485
    #8
    lizdeli said:

    Caryl,
    The treatment is
    Caryl,
    The treatment is quite a journey, but thankfully not a long one. In a few months you'll be looking back and wondering how you got through it. But you will get through it. Radiation does it's work but not without side affects. For now, let's focus on the side affects during treatment. They'll be lots of time for post treatment side effect discussion (aches in the hips, etc.).

    Being tired is a definite side affect of radiation. Listen to your body and rest when you need to. Don't fight it. If your appts are an hour away, I'd suggest not making early appts for radiation. Just in case you don't feel so good in the morning. I needed a plastic donut to sit on for awhile. You may want one for the car ride. It gets more painful toward the end of the treatments. I don't mean to be negative, I just want to be honest with you so that there are few surprises. Not sure what your chemo regime is, but once you start (if they decide you need to) you may find that some days are good and some not so good. I had a fanny pack with my Flurocil (can't remember how to spell that) 24 X 7 M-F. On Mondays I had my cisplatin chemo treatment and I would be at the hospital for 5 hours or so. Two days after the cisplatin (every Monday for 7 weeks) was when I felt the worse. I never got really sick from it, just didn't feel right. Queasy, weak, sensitve to smells. It's very imporant to stay hydrated. Drink lots of water. It's important for your bladder during radiation.

    Talk to your doctors about what creams they can recommend for the burns. Also ask about sitz bathes, they help from what I've heard. I didn't use them, but many others have.

    This is a scary time. Once the fear subsides a little, the fight sets in and the determination to beat this! We'll be here for you and you will be in my prayers. When you share your experiences we will be able to help by sharing how we dealt with it.

    Please keep us posted. Wishing you healing.
    Liz

    Hi Caryl
    So sorry to hear of
    Hi Caryl

    So sorry to hear of your diagnosis. I was diagnosed with Anal cancer in April of 08. Did the rad/chemo. I definitely had a pillow for the car....and one for my chair at home. Sometimes after going to the bathroom, it would hurt so bad, I would just plop on my bed, roll in to a ball and wait for the pain to subside. I was told ( finally) at some point that there was some numbing pain ointment. Can't remember what it was called, but it did help.....so be sure to ask about it. This is not a very dignified cancer......has alot of embarrasing situations and questions, so as I have said every since I found this site. ....THANK GOD FOR JOANN!
    The radiation will weaken your pelvic muscles, and eventually you will not be able to be far from a bathroom. Amazing though what your body comes back from!!! All burns from radiation are gone...used Aquaphor betweeen my legs. Start early on the creams~~ I had stage 1 as well...nothing in any of my lymph nodes, and I was just so thankful to have caught it so early. Keep telling yourself YOU will get through this....you will get through this! You will....there are just days.....but that's when you come here!!!!

Discussion Boards