anal cancer
I just found out that I have cancer in my rectum. Last week, coloscopy; next week, CAT scan & surgeon meeting. I don't have family; my husband died in 2013; friends don't know much about cancer & neither do I. I'm afraid and anxious, trying not to get depressed. I'm looking for conversation to help me thru this process.
Comments
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I am so sorry you are going through this.
Please know that there are a lot of resources available. Your #1 resource is yourself so you will have to be strong even when you don’t want to or can’t. Most important is to find the resources available to you. The American Cancer Society is wonderful, you can also reach out to the Colorectal Cancer Alliance. They have a Buddy program so you will be connected with someone who has gone through it and you can talk to them on the phone (if you prefer). Make sure you find out if your insurance has a Nurse Navigator or other programs and talk with your Oncologist’s Social Worker and Nutritionist. Ask lots of questions if you do not understand anything (which is easy to say, but most of the time I did not know what I was supposed to ask).
Be sure you trust your doctors 100% and if you do not, get a second opinion.0 -
Hello—-I was happy to get your response. Just reading it helped. I went to both the Colorectal Cancer Alliance & American Cancer Society & signed up. Also messaged my primary physician to ask if she's aware of support groups. I'm a veteran & was hoping she could connect me with other veterans with cancer in the VA Hospital where I received my diagnosis.
Your comment about being strong—-I can use it. Especially in the mornings, I feel drained & weak. My strength slowly returns over the day as I do some activity and eat. (I've become anemic & understand that's the way it works.)
I certainly wish you the best.
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@cinderthistle Did you get your scan? I just realized you said you had anal cancer in your rectum- did you mean squamous cell rectal cancer, or anal cancer that spread to the rectum?
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Hi—-Thanks for reaching out. I don't know exactly what I have. I've finished the colonoscopy and MRI, CT scan next week. Have met my surgeon. That's all so far. The surgeon seems hesitant to answer my questions, probably because she doesn't have enough info on me yet. And (as someone alluded to above) I don't know which questions to ask. All I know is my anxiety is growing. Not knowing anything leaves a vacuum in which fears grow. Am talking to friends and meditating.
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Hello. I underwent Radiation and Chemo treatment for Anal Cancer (squamous cell - tumor and outer skin cancer that I thought was a Fissure. It all started a year ago when chronic constipation led to hemorrhoids and a fissure. I was embarrassed to show my doctor until 4 months later the fissure still refused to heal. Fast forward to January and February I got confirmation that the Fissure was in fact cancer. I started Radiation and Chemo therapy April 30th for 28 days. I am single, but my older sister and a cousin's husband took it upon themselves to drive the hour from home to the clinic in Windsor, Ontario. I could only recline in the backseat of the car. I'm in my 3rd week out from Treatment (the first 2 weeks out were tough, but I found ways to get through it) Each day I look for "floaties" in the toilet bowl, evidence that Radiation has killed and detached cancer cells from within the anus. There always seemed to be "something" stuck right around the rim of the anus inside, but today with joy I saw and felt the release of some part of that - which has kept me from being comfortable sitting upright. The day I can sit normally without discomfort will be the best day of my life and I look forward to it. I'm in my 70's. I had a mother and one cousin on her side of the family that died from cancer, but I never in my wildest dreams expected that I would contract it. I now have a deeper appreciation for anyone connected in anyway with cancer, treatment, and survival. Trust in your doctors and your God! They will see you through.
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Hello—-I've reread and reread your post. Thank you. Your words have helped me to keep my experience in perspective. I'm not in pain; to hear about yours is humbling. I've been complaining about becoming weaker and weaker, with the fear that soon I won't be able to get to all the exams and other assessments doctors keep requiring. Also, the time it's taken you to get treatment; I had no idea how long it could take and thought my doctors were taking too long. I'm getting angrier and angrier. It will soon be a year since I first saw blood in the toilet and I still don't know what kind of cancer it is. I'm afraid the doctors will let me die before venturing to help me. Your post has done more than all my medical appointments. It's a boost to get me thru the day. Many thanks.
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cinderthistle - I'm 69 years old female and was diagnosed with Stage 3 Anal Cancer at 56 years old (2012). I did not require any surgery after undergoing the standard chemo-radiation protocol. (But, pain, yes, from the treatment but only about 2 months and then my burned butt healed and all is well today. Others may have better or worse pain duration.)
There is a tremendous amount of confusion with the average person in knowing the difference between Rectal Cancer and Anal Cancer but they are indeed totally different cancers. The rectum is at the end of the colon in the body and is made of colon cells which is why it gets treated and categorized as ColoRectal Cancer when cancer occurs. Conversely, the anus is the literal butthole and is essentially comprised of skin like cells. Hence, anal cancer is its own category and has a different treatment protocol than ColoRectal cancer. If your doctor can't tell you if you have Rectal cancer versus Anal cancer, then I would consider finding a different doctor. Here's an excellent resource if it is anal cancer you have (clickable link): The Anal Cancer Foundation
Best of luck and patience as you endure what's coming.
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Thanks—-sometimes just getting a response helps. I don't know which cancer I have (and didn't know there was a difference between "anal" and "rectal"). All I know (after 10 months since I saw blood in the toilet) is that my weakness is probably not caused by the anemia alone, but by the cancer. That's really all I know. Doctors have mentioned possibilities of chemo, radiation, surgery. When I ask questions, they mostly evade. I understand that they want to be careful before they commit to anything; I want them to be careful too. Next week I see the surgeon again. Perhaps I'll have some real information then.
I forgot to say that I'm being treated in a VA hospital; can't afford to go outside that system.
Thank you again.
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Dear Cinderthistle: Thank you for you kind words! Because I do live alone and couldn't get out to shop in town for the many products that I felt might help (and many of them did!) Amazon became my best friend!! My small city of Chatham, Ontario would not have had these products at any rate. I'm an Amazon Prime member so Free Delivery for me. I only mention Amazon because I wouldn't have had all the gazillion helps during my time of Treatment. Not even the drug stores near by will deliver to my address. I don't know what you have in the way of products, but a Sitz Bath is a must have. The doctors don't want us to use any heavy lubricating cream because the Radiation increases with it and that's a bad thing. A water-based cream is needed and to that end I would purchase Gynatrof Vulvar Moisturizing Cream, which is a bit pricy but very light and worked very well. There came a time - in the two weeks after Radiation - where the vulvar felt like it had 100 paper cuts whenever I urinated. This is what I did to reduce that sensation and it is going to sound strange: I cut a section of a pool noodle (foam tube) down to 3 inches (hoping the urine would escape down the central opening which wasn't always 100%, but anyway) On the top of the noodle I would lay a round cotton pad (Dollar Store type) with a hole cut in the centre, and on that pad I would lay a piece of soft gauze, also with a hole cut from the centre, elastic band to hold both, and then smear the gauze with 2 products: Flamazine, which the Oncologist prescribed for me because it brings healing and fights bacteria at the same time, and a product called Base Numb from Base Laboratories in California (also sold on Amazon) which has 5% Lidocaine. Not allowed during Treatment, but okay before and after. I would press the noodle into position to catch the urine and the Lidocaine helped numb the pain. It got me though those weeks. The Sitz bath I used constantly for both #1 and #2 because the warm water would help stimulate the process and afterwards a clean water Sitz bath would help me clean myself up using only a light finger touch. A Peri Bottle filled with warm water I also use constantly instead of toilet paper to wipe for #1 so I didn't have to touch the area with anything rough. I'm now 4 weeks recovery since the last day of Radiation (June 10th) Each day it gets better. I can sit in a zero gravity lawn chair with no problem (week 3). I can sit on a neck cushion in the car and drive short distances. And I can see the day approaching when I'll be able to sit normally. Hallelujah!! That will be the best day of my life! I Thank God! I Thank my Doctors and I Thank all the prayers said on my behalf and all the people that stepped forward to provide rides and meals. God be with You!!
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So I must add to b3strong…the difference between anal and rectal cancer is locational and the type of cells, so the proper protocol must be employed. In general, anal cancers are squamous cells and rectal cancers are adenocarcarcinomas, which are in the lining of the rectum. There are very rare cases of squamous cells which rectal cancers which uses the Nigro protocol (which is standard for anal cancer- the big difference is surgery is NOT recommended for squamous rectal). See . This may be why your treatment is getting delayed. I know this because this has been my journey and I have only been in contact with one other person with this condition.
Did you receive a pathology when they did the colonoscopy? It would tell you what type of cells.Perhaps I can search for resources that can help you maneuver the VA, or in the alternative, find outside resources.
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Dear Cinderthistle: I might have mis-informed you with regard to the creams that I smeared on the gauze/cotton pad. I tried hard to remember and wished I had written it down in my journal notes. It came to me that I would use the Base Numb cream more on the anus and used the Gynatrof along with Flamazine on the gauze/cotton. Gynatrof is an excellent cream and entirely gentle for the Vulvar area. Sorry, but I needed to set the record straight. I know the stress you talk about with Doctors not divulging much information and it drove me crazy too, but they can only report from what the scans show them - scans taken before Treatment and after Treatment. It is nerve wracking !!! Whether a doctor is treating you at a regular hospital or a VA hospital, they have your best interest at heart and have studied long and hard to earn their credentials. What ever they want you to do, follow it. I said to the Chemo doctor that I would take all the Chemo he wanted me to take, but I didn't want Radiation because the area of cancer was SO sensitive!! He was able to swing my thoughts to making the right decision. He said that if I was his sister, he would want me to do both Chemo and Radiation. I'm very glad that he spent the time to bring my thinking around and I would wish that for anyone else, that a doctor took the time it needed to clear my head!! God Bless You!
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Dear mak1970; That information is fabulous! I wouldn't have even known to look that up! And sometimes I want to know the facts and sometimes I don't fearing that it might stick in my head way longer than I want! I was told that I had squamous cell anal cancer fairly early, but it didn't register. Now I understand why surgery was not ordered as my treatment. The chemo which started off with a plunger of the stuff (Mitomycin), then 5 pills (Capecitabine) each of the 28 days that radiation was performed and near the end, a 2nd plunger of chemo, was a walk in the park figuratively speaking. I seemed to have had a high tolerance for this treatment and only 2 occassions did I feel extra woozie or near to vomitting, but did not. Two things I used immediately that I don't know if they contributed to the almost zero side effects was stretch fabric and plastic button Sea Brand Anti-Nausea Accupressure Wristbands that I wore continually and only removed to shower AND Elan Organic Ginger chunks that I cut in half size and sucked on continuously all through treatment. (both on Amazon) Strangely, a side effect to that much ginger lead me to eventually source out an herbal toothpaste as anything with floride or antiseptic mouthwash was too stringent to bear. The Chemo was used to treat spots of cancer detected in lymph nodes along the groin on both sides. The Chemo doctor admitted that I was a stage 2-3. I just have to exercise patience while my anus heals from the Radiation. Maybe one day I'll have the courage to know more about how Radiation works, what it does to the skin, how long it stays around in the body because even in the 3rd week of recovery I was still seeing evidence of detached skin in the toilet bowl that would "float". I'll close on that note. Lol. God be with you and all people undergoing treatment and now in recovery. Anal cancer happens to have a very high rate of success to recovery. ☺️
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kittpugh: These forums are so valuable because you can get information from peeps that have gone through it - though I am kinda a snob when I see recommendations from Dr.Google (or even worse now Dr. AI). I truly believe (and I know this is an opinion so I could be wrong and/or there can be more than one correct) that each of us have our own journey so it is important to respond with “This was my experience…” so others can know what happened, because methinks there is a lot of hindsight that may help others and if anyone is like me- I am willing to go with the program, but if things are not going well, I would be willing to consider almost anything. I am like you where when you are in it, you must go with hope and faith in the medical team, but when you have time to reflect you can go back and armchair quarterback which may help others. While anal cancer (thankfully) does have great success rates, there is a lot of residual effects that need to be addressed. God bless you and I am glad we are on this side of the road (at least for the moment - I am always grateful to learn about long term success stories).
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It’s strange. I didn’t come to N8 https://n8casinobet.org/en-in/ for excitement. I came back because it felt familiar — like opening an old notebook and finding a page I forgot I wrote.
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Hello all—-Saw my surgeon again yesterday. Was able to use some info you shared in your posts to ask questions. Thank you for the assist.
I do have adenocarcinoma. Now tests show it's possible that I have cancer in my pancreas and lung, so I need more scans to ascertain. The surgeon expects to do chemo and radiation and may not do surgery. She described chemo and radiation a bit—-sounds as if it will make me sick. I asked and she said it would.
I'll have a first meeting with a radiologist next week. I've begun to realize that having cancer won't be something I deal with in a month or several months. It's beginning to look like forever.
I'm just beginning to understand what I need to work on accepting.
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@cinderthistle Not the best of news, but better than the uncertainty. I am sorry, but I will pray for you and you will be amazed at how strong you are as you battle this.
It is good that your surgeon talked to you about the side effects- but know that you have your own journey and you will get through it. The side effects may be horrible; but left unchecked, the cancer will do more damage. The most important thing is to prepare and report anything that is not normal as early as possible.You should also find people that can help- you can get a “buddy” from CanCare (https://www.cancare.org) and Colorectal Alliance (https://colorectalcancer.org/resources-support/community-support/buddy-program). You will be matched with a person you can call and talk to- invaluable because we have all gone through it. There are also many resources that can help you with resources.
❤️❤️❤️❤️
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Dear Cinderthistle: I'm so sorry that your cancer has spread to pancreas and lung! As just a small note of encouragement. When I awoke from my first Colonoscopy, I lay there thinking that I would never be better, never regain the health I once had. And that doctor was as evasive as she could be which stresses me out all the more. But, I got through the Radiation/Chemo treatment - one day at a time - and now completed 5 weeks recovery, each day a little better than the day before. Even sitting up on a soft fabric, well stuffed recliner chair. This morning, picking up to read a good little book, "Rectal Cancer Diet Cookbook" by Dr Priscilla Clever, I realized that I might have been too hasty eating solid foods such as shoestring french fries done in the Air Fryer, and ground beef hamburgers. The book recommends adding solid foods gradually and in soft forms such as mashed potatoes. I fear being constipated because that is what started me off on this journey, and so I've got to exchange those french fries for softer mashed potatoes. Darn! When you don't have your favorite foods for a long time, the cravings come around to bug you! Lol. Anyway, my prayers are with you for strength and courage. One day at a time. God be with you!
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Just made the first radiation appointment. I was putting it off because I was afraid. Then a friend said "Just make the appointment, start moving again, meet the radiation therapist, ask questions and find out." I was still scared to do it, then I received your above message. Along with mak1970 (above yours). And somehow I got ready (really fast!) to schedule the radiation. I don't know what it was, but your words gave me strength. Thank you! It's next Thursday (the 31st), and I'd appreciate your prayers. Mine are with you.
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