The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

just diagnosed

sandlynn
sandlynn CSN Member Posts: 17 Member

Hello: Just discovered this website and I wanted to join. I was just recently diagnosed with anal cancer and now am going to have more imaging and hopefully in about 2 weeks I will start with my treatments which will include chemotherapy and radiation therapy. Looking for others who have experience with this and have suggestions and/or tips as I begin.

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Comments

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    Today I met with a nurse at the local cancer center and she did some teaching and explained about the chemotherapy. This afternoon I have the CT simulation. Next Tuesday the port goes in and it sounds like treatments will begin on Nov. 17th. It is so overwhelming, especially when they go over the side-effects. The journey will soon start. Guess I am ready to begin.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    I had the port put in yesterday and am a little sore today. Tomorrow I see a nurse practitioner at our cancer center for a check up. On Monday I begin treatment with chemo and radiation. I am a little nervous about side effects. I do know God is with me throughout this journey.

  • AnnieRB
    AnnieRB CSN Member Posts: 15 Member

    Hello. I hope all is going well. I had stage 2 anal cancer and am now 2 years post treatment and cancer free. Hang in there. The treatment is hard and very uncomfortable, but you can and will make it through. The radiation aftereffects are progressive, so the last weeks are worse than the early ones. Make sure you don't use any creams around the radiation area; they will make the burns worse. Sitz baths are your friend. Nap often during treatment. Good luck.

  • mddoan
    mddoan CSN Member Posts: 6 Member

    I was just diagnosed with Stage 3 anal cancer last week. I work as an occupational therapist and have had many cancer patients in my 17 years as a therapist and yet I am completely terrified of the side effects my colorectal surgeon spoke with me about briefly while I was in the hospital. He said that I may decide to get him to place a colostomy for pain management since going to bathroom is going to be “excruciating pain”. Although he and the oncology RN told me to stay off google, I can’t help but to research for hours. The side effects from chemo I have seen first hand when she went through treatment for colon csncer but she did not have to have radiation. Therefore, I’m very concerned about the radiation side effects especially after my surgeon telling me that several of his patients elect for a colostomy. I am going to have chemo 2x during 6 weeks and radiation 5x/week for 6 weeks. Would you mind shedding some light on the specific side effects from radiation for anal cancer both SHORT TERM and LONG TERM? I’ve been reading on it causing stenosis of the vagina and rectum/anus due to scar tissue developing over time and it causing potential life long bowel incontinence and painful bowel movements and urination as well. So, I am really really nervous.

  • mddoan
    mddoan CSN Member Posts: 6 Member

    Hello sandlynn….it sounds like you and I are pretty much in the same phase of this journey. I had surgery last week and when it was determined that the ulcer was malignant…he admitted me to hospital for 3 days snd had CT’s, MRIs, bone scans and tons of labs run and referred me to oncology who rounded in hospital to see me. I live 2 hours away from Memphis, TN where I was hoping to go for chemo and radiation. But they have run in to insurance issues because I live in Arkansas and insurance is not wanting to pay for out of state services. So, I came from hospital and have been on phone for literally hours every day this week trying to find out if they have gotten an approval yet or not and still have no definitive answer. I absolutely LOVE my surgeon but found out this week that the hospital where he did the surgery and all the test is NOT in network with my insurance and therefore is going to be out-of-pocket. So that means I will not be able to keep him as my surgeon. I’m really bummed about that because he is excellent. So, it has been a very difficult last 2 weeks. They are calling with all my appointments at the cancer center in Memphis but the insurance/billing/nurse navigator nor the patient financial advocate department can tell me if all my services will be covered or not. So, I’m very frustrated. I may have to end up going being referred out and go to a cancer center in my home state due to insurance. I have learned a lot from a patient’s perspective in the last 2 weeks. I have always been the medical professional but now I’m the patient.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    mddoan,

    I hope that you get your issues with insurance and place of treatment straightened out. I was all set to begin treatment this week. The chemo has been authorized, but the radiation has not as of yet. The radiation oncologist still has some more planning to do, so my treatments will start next week—hopefully. It seems that there are always loopholes in the medical system, especially with insurance. I will be praying for you.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    Annie RB,

    Thank you for your words of encouragement. I will make it through this and I am very happy with my oncology team and the cancer care center in our small town.

  • bvharper
    bvharper CSN Member Posts: 1 Member

    I’ve had two surgery’s for anal cancer and now I’m starting chemo radiotherapy. I have search high and low regarding chemo and radiation and it seems like a nightmare. Hardly anyone is not severely affected months to years after this. Very worried!!

  • AnnieRB
    AnnieRB CSN Member Posts: 15 Member

    Hey there. The radiation was much worse than the chemo. With Chemo, I had mouth sores for 1 week after the first second. They modified the second round and I didn't get them again. I did not have a colostomy, and it was ok. The side effects are the burns. It's like a REALLY, REALLY bad sunburn. All you skin peels off and fresh skin grows back about 2 weeks after treatment. Also, it burned when I peed. Two different ways: the urine burns when it comes out of your urethra which is burned. Also, the pee itself is acidic so all the skin it touches burns. They give you meds to help, but I was allergic to them. I cried for two days every time I peed. But it passes and when you get past that it's much better. Also, passing stool is also very painful. That too passes. About two weeks after treatment, I started to feel mostly normal. I used vaginal dilators weekly to be able to have sex with my husband again. They helped a lot. Two years post treatment, I am mostly normal. No major long-term issues, yet. I've read about others that have had them, but I haven't. No pain. No other long-term issues. I hope this helps. I've read about people with different cancers (breast cancer and red devil chemo) The worse of it is 2-3 weeks and heals quickly after treatment stops.

  • mddoan
    mddoan CSN Member Posts: 6 Member

    I will definitely be praying for you as well. Keep me updated if you don’t mind. Thank you for your input.

  • mddoan
    mddoan CSN Member Posts: 6 Member

    Thank you so much for your input. God is good and I am so grateful to hear that it is a possibility to return to mostly normal in time. The oncology nurse in the hospital told me to STAY OFF GOOGLE! But I can’t help myself. The information on the short term and long term effects is horrid. My friend that had her hemorrhoids sirgically removed told me to get a sitz bath. Did u happen to use ine of those? If so, did it help? I am so thankful you were cured and have returned to what sounds like a good quality of life. Oh, another question…did your doctors talk to you about the option of a colostomy during treatment?

  • AnnieRB
    AnnieRB CSN Member Posts: 15 Member

    I didn't like the physical sitz bath thing that you put on your toilet. But I did purchase sitz bath salts (a lot of them since I was using more in a regular bath) on Amazon and filled my bathtub about a quarter full of very warm water and the bath salts. I took a "sitz bath" every day in the bathtub. It helped a lot! It felt really good and kept my skin as good as good be expected. My doctors did NOT recommend a colostomy. They told me to eat a non-fiber diet. No fresh fruits or veggies. They wanted things to pass easily. I mostly followed their recommendations. I still ate a banana and peeled apple every day, and cooked veggies. I think they wanted my system working even during treatment. It was not fun, but really about two weeks after treatment you notice that you are through with the worst of it. By 2 months post treatment the only major side effect was that I needed to be close to a toilet in the morning. I couldn't always time when I needed to go to the bathroom. By 4 months I was mostly normal and travelling and working normally.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    Well I am enjoying a week without appointments and waiting patiently (or somewhat patiently) to hear from oncology and hopefully radiation treatments will be authorized and the doctor will have a treatment plan. So today I baked some banana bread and tomorrow will put out a few Christmas decorations. Trying to keep myself from getting too anxious about it all. Next week is Thanksgiving week, so if treatments do start I will have my first radiation treatment on Sunday and those will be Sun thru Wed. On Monday I will have an infusion and a pump put on that I will wear till Friday. Praying it actually happens.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    Got some news to share. Treatments have been authorized and I begin chemo-radiation on Sunday due to the Thanksgiving holiday. I am a bit nervous yet ready to embark on this journey.

  • AnnieRB
    AnnieRB CSN Member Posts: 15 Member
  • mddoan
    mddoan CSN Member Posts: 6 Member

    i am switching from an out of state cancer treatment center that i initially wanted due to their impeccable reputation. Yet, due to insurance issues for out if state treatment…I am switching to an in-state center. I put in a transfer of my medical records to the new center today. Hopefully I will hear from them soon. Not that I want to start treatment since I am feeling so much better since my surgery on Nov. 6th and he removed the large tumor, even though he could not remove it all. I did not realize how run down I have been since I started having my issue approximately one year ago. I mistook it for a hemorrhoid. But, I am ready to start the treatments so that I can get them over with. I’m sure you feel the same way.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    Started radiation today, due to the Thanksgiving holiday. It was not too bad, but that machine is huge!! Felt OK, a little tired a couple hours after radiation. Tomorrow I start chemo with radiation. So I hope that is not too bad and I can ease into this treatment regimen.

  • sandlynn
    sandlynn CSN Member Posts: 17 Member

    That is exactly how I feel. 1 treatment down 29 to go. Hope you can get started soon.