great information for us healthcare folks

Greetings and hello nobody is talking about their experience on this video this is very disappointing

I don't want to hear from a celebrity I would really like to learn the experience of a anal cancer patient right now and consecutive chemo and radiation Nigro treatment

Thank you for this wonderful video. I am a retired nurse 74 and I have never met anyone who has this. I was diagnosed April 2021. During covid I kept calling my doctor for a colonoscopy and was not getting a call back, 3 years since last and about 4 years by the time I got a call back. Finally got in there and it was Stage 3 anal squamous cell carcinoma. Prior to this around 2010 I had uterine adenocarcinoma with a hysterectomy including ovaries and lymph nodes on the right abdomen but it was stage one. I had the chemo radiation for 6 weeks. The last 2 weeks was hell. A month before I could sit down comfortably. Then lymphedema treatment, neuropathy is an on going issue prior to it. I tried to push myself but I have no energy most of the time. I was diagnosed with DCIS breast cancer the following year which was really nothing compared to anal Ca. I got going last year and fell off a step ladder and received a compression fracture in L3, never thought about my bones being weak. I am not superwoman anymore. I wear a necklace with a silver dragon holding a black stone, I tell people I know what it feels like to have been burnt by a dragon and I call it ass--- cancer. I have lost a few friends who can’t take my open attitude. 😊 This HPV thing has taken my breath away because as far as I know I never had HPV? I have all the same issues stated by all of you and wear protection. I have been trying to control things with not eating for several hours before I have to go somewhere. I have been going for acupuncture for my fracture and it is helping the back pain. I’m thankful to have great doctors here in Western Massachusetts. Thank you all again. ❤

Put castor oil in your belly button at night will help with constipation maybe take a teaspoon as well and put some on a pad by where the fisher is over night - and meditate that it’s getting better -

I was diagnosed with anal cancer, I have had an elapse, they removed my anus and colon, and I have stoma,HPV virus has never been me mentioned during my treatment, as far as I know I haven't tested for the HPV virus, I have been married for nearly 60 years, never been with another woman only my wife, my wife was brain injured in 2005, never had sex with her since, I wasn't ashamed, I am not ashamed, it's roll of the dice, your luck runs out, some how you've got this wrong, I doubt many people would know any thing about it, I didn't know what stoma was till I had one,

Can be eradicated via radiation (only) if caught very early - studies confirm

Never knew there was such a thing as anoscopy. Pleased for you that this is keeping you well. I can't imagine proudly wearing the anal cancer hat in public either but this video is a great start well done

Thank you, thank you!

I have a lump. A mass. It was misdiagnosed as Vaginal by CT. This event has sent me everywhere, through many medical departments, even colonoscopy which revealed no mass. I found it myself upon self exam and had an MRI last week. Three months after discovery of a mass, I, and my primary care doctor know where it is. I've never seen the doctor who ordered the MRI. I'm awaiting a call. Thank God I have an appointment with my GYN again end of the month. I've had no bleeding, and no anemia. Just a painful lump I had to locate myself. I've been saying that I have rectal pain, over and over. Not understanding....ANAL PAIN. Let's familiarize the world with this word! Don't be afraid to say it or hear it!

Thank you for sharing your story. It gives me hope. I'm a 58 year old male recently diagnosed with stage 4 anal cancer.

Radiation SUNBURN? I wouldn't like that term either. If a doctor experienced it, the terms would change for sure! Discomfort is one of my favorites!

Colonoscopy did not find any souce for the anal pain I'm experiencing. I have an MRI tomorrow. I've been saying that I have rectal pain. I'm now saying ANAL. I'm HPV positive and had a hysterectomy 33 years ago. Cervical stage 4. Fast forward to tonight. I'm 61 and hoping it's a cyst.

I've been HPV positive for more time than 40 years. 33 years ago I had stage 4 cervical and surgery got it all due to early detection. Today I am 61, and I have a anal mass that I am having an MRI of tomorrow. With Ct confusing it for vaginal, and the mass being missed by colonoscopy screening, I, myself, discovered the hard buldge around my anus along with two tiny HPV warts nearby. I have been telling doctors for three months that I have rectal pain! ANAL ANAL ANAL! LET'S STOP IT FROM BEING A DIRTY WORD!

My PCP sent me to have a colonoscopy because of a Cologuard questionable result. The Colorectal surgeon did a colonoscopy and stated that the test showed diariticulitus and no plops I discussed my rectal bleeding and itching was a result of hemorrhoids. He gave no response to this July 12, 2023. I continue to bleed like a period out my anus. I also had what was fistula 3 of them. Just lumps under the surface thought to be hemorrhoids. I went back to my PCP about the continued bleeding and received a prescription for hydrocortisone 25 mg suppositories. After completing the medication course. There was no improvement. I was told to call the colorectal surgeon to get a rectal DARE examination. My backside completely exposed the Dr attempted to insert some type of probe that shot me right off the exam table. He pushed his stool back and said that I have anal cancer! This was June 21,2024. Colorectal surgeon did an exploratory procedure to repair fistulas and biopsy the anal tumor. Continue in another message

Thank you for an excellent presentation. Peter support is something so many could benefit from especially here in Australia. We have a limited amount of support from hospitals. However we could really benefit from this type of initiative. I would be interested in helping if it is possible here in Australia . Ian a “the over” from z Sydney Australia

I always loved Marcia Cross. She is beautiful and as I heard, she also very smart. I got anal cancer. I have comorbidities, so I can’t get radio or chemotherapy. The surgery also was ruled out… but I try to heal myself by detoxifying. What actually shocked me, that I didn’t know that it’s caused by HPV, despite I know quite well biology, I was warned to get cancer because of my autoimmune disease, but I wasn’t warned about HPV. I’m in my early fifties and predicted to live ~ 2 years, if there is no other new illness change the course… which on the bad days seems eternally long, and on the good days seems like I will never die 😊 I’m not afraid to die though, but I’m very scared about the suffering. I already had far too many years in pain and other debilitating conditions, so any extra feels unbearable.

I just was diagnosed two weeks ago of Anus cancer starting Chemo this week. Praying

As a 16 year thriver of Stage 1 anal cancer I can so still identify with everyone’s story. I can tell you that I still have ongoing side effects of the treatment (Nigro protocol) I was never the same .. I call it rearranged. It makes me sad at time to think about myself prior to this. Like many people at age 49 I was very fit and had been vegan for 16 years. Super active and not high risk. Never had a HPV diagnosis. Went in for a baseline colonoscopy at age 49 never thinkingI had anal cancer. Luckily my gastro identified it. I still have hip pain .. my doctor says he has no idea why.. I know why. I’m sure it’s the radiation as the pain and stiffness is the same as it was after I finished radiation. I am stiff even with yoga , pelvic stretching etc. At 65 I am grateful for life even though it isn’t the same. Intimately it’s been a struggle to keep things “supple” .. yes a struggle.. I’m fortunate to have a great partner .. I had several years of fatigue and finally tried Wellbutrin which I’ve been on for 12 years. It’s helped a lot. I too travel for work frequently and wow I can’t even tell you how I’ve managed.. I make my own schedule so no appts until I’ve been up for 2-3 hours and can use the restroom. I take Miralax every day. It’s better than it was immediately post treatment but there is no way I will risk getting constipated and I cannot live without Miralax lol.. I have to carefully consider where bathrooms are wherever I am and that’s become 2nd nature to me.. I still am primarily vegan but eat fish and eggs. Beans though good for me are on the in small portions list. I personally went on HRT bioidentical pellet therapy 8 years ago and it’s helped a lot ..I was BRCA 1 and prior to my anal cancer diagnosis underwent a bilateral mastectomy with reconstruction surgery and a hysterectomy at age 43.. great outcome .. only to get anal cancer? Seriously .. So I take things one day at a time and still walk a few miles every day. I’m retiring this summer and am so happy I can relax and not stress out so much about traveling for work. I will travel more for leisure. It’s not an easy post journey and I admire all of us for making the best of our life and embracing what we can. That’s really anyone’s purpose. Thank you for sharing and my best to all of you.

i am 74 yrs in age and am happily married and wish I could engage more sexually with my husband. Thank you for your information.

I want to thank you so very much for this video as I have identified with all of the speakers and don't feel so alone.

Hi dear Anal Cancer Peers, I am in my 8th year post surgeries and treatments for stage 2/3 SC Anal Cancer . From Feb 13th 2016 to circa April 2017 I was hospitalized 15 times not including all the ER as an outpatient. My longest hospital stay was 23 days with CDIF. I was written off a few times but I wasn't agreeing to that. Yes I am a Thriver, I made a paradigm shift from worrier to warrior. I am in constant gratitude and try to maintain Mind Body Spirit balance.I also adapt daily to my new normal an my paradigm shift included going from a life of ambition to a life of meaning, after I read several books from Dr Wayne Dyer, Dr Bruce Lipton , Kelley Turner and many others.

A lady here in England somehow got a piece in the news last week about her diagnosis in 2022, Caroline Hyde. It was very short but it's a start of more awareness

Sending all the good juju to all these amazing people. Diagnosed stage 2a and I finished the Nigro protocol in July of 2023 and still getting clear scans so far. And I just spit out my drink when this lovely lady said…”Mom…he has a tumor on his ass!!” That made me laugh. And honestly… This disease is such a pain in the ass. And laughing is a good thing. 🫶🏼

Thank you for this. I am not a thriver yet, ?I can relate to Molly stage three then was told I had a lesion on my liver so now stage IV. Went through the Nigro protocol, 3 sigmoids post and was told remission. 6 months later they found a recurrence. now on Immunotherapy but considering surgery for osteomyelitis. I still have terrible constipation need to take laxatives and then moan in pain due to all the scarring and having to by pass the new tumor. I was always very active and was fine up to the recurrence, my activity level has decreased but I keep pushing through.

As an anal cancer thriver in Australia (diagnosed April 2023) I want to thank you for uploading this. I am so glad you are out there supporting, advising others like me. Please keep up the wonderful work you do. Ian

Thank you for providing such valuable information in your video. What inspired James to share his thriver story? As someone who runs a dream interpretation channel, I'm curious if James has experienced any significant dreams related to overcoming challenges or achieving success. I appreciate James for sharing his inspiring story, and I've liked and subscribed to the channel for more empowering content like this.

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Thank you for sharing your story this broke my heart. My husband is battling cancer too. Prayers and protection for your health to remain free of cancer.

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I need help please Anal cancer treatment was a success BUT i cannot poo normally. I am constipated about a full week. Then the softners work and i have small.poos 6 to 8 times in.one day. They hit my fissure and is very painful i cant break from this cycle Help before i go off the deep end

Too many uhms Distracting

I was diagnosed with stage 3 anal cancer I July 2023 at age 68. I have been with my spouse over 50 years. We never did the kinky stuff either. I too served in the military. I use the VA medical facility. I did chemo pills and radiation. Treatment ended on October 27 I was found to be clean from the cancer. I have a super colorectal surgeon and an oncologist who work with me closely. I am doing well except my bowels are not fully working normally. I am thankful to hear your story as everyone I see on line are no where close to my age Hang in there and keep positive. That's not easy with daily pain I know. Cancer was and continues to be a big life changer .

I would welcome greater emphasis on after treatment I am clear for now but continue to have bowel issues. I am continually constipated and if I go at all it is extremely painful as it hits the fissure. This is no way to live. Also limited info for seniors like me for help. 😊

you all got to know there is no shame in this type of cancer at all. More is needed on this type of treatment! my dad is going through hpv throte cancer. so here we are.

Thank you❤️🙏🏾🌹

Hi Dave yes I am doing well. Been cancer free since 2022. Hanging in there. Day by day is my blessing.

Hard to read slides so recommend more attention on them over on the speaker Finished chemo-radiation. Terrible after effects Medical should share what patients may experience BEFORE treatments

I focused in on my lifeblood….my partner and my cats and dogs. The adrenalin rush of wanting to make sure they didn’t suffer along with me kept me focused throughout treatments. I spent all the weeks leading up to the point that I knew I would be very sick….getting ready. I stocked the pantry with pet food and supplies, I made tons of freezer meals and prepped like there was no tomorrow. Not because I needed to….just because I wanted to. It made all the difference to me mentally. So for the weeks and weeks that I couldn’t get out of my chair because I was so sick from treatment…we sailed through it with almost no hiccups. I will never regret that effort. It allowed me to feel in control…even when I wasn’t. ☺️ It’s not the answer for everyone….but it was for me.

I am 69. I never see much for my age group 😢ze

Hi James - just wanted to touch base. I was diagnosed with anal cancer in 1986 (misdiagnosed in 85) and had brachytherapy treatment, but the cancer recurred higher in the rectum in 1987 and I had to have a colostomy. In 1989 I was diagnosed with cervical cancer - and in 1990 the original anal cancer metastasised to the bone, fracturing and eroding my pelvis. Since then I have had various skin cancers, but I am writing to you today just to let you know, in spite of all this, I am still alive and kicking - and I wish you well.

Is it possible that a polyp in the anus could be benign for cancer but still harbor the HPV virus?

Connie you never said anything about pain?

An excellent overview of the management of Anal cancer though an account of relapse local as well as distant and the effect of infectious diseases ( HPV, HIV ) on the outcome would have been beneficial.

My wife has the same diagnosis stage 4 to the liver SCC she is doing well on chemo main stay because of the stage. We just pray 🙏 she gets more time with us.

My wife is getting treatment at UC Davis she was diagnosed with stage 4 SCC she has had a great response from chemo. Her wbc is to low for treatment need some hope 🙏 she is HPV 16 positive. I am not far from UCSF.

0:44

Im so sorry she had to go thru all of the horrible treatments and not being able to see a doctor early on. Thank you for sharing her journey .

As an anal cancer thriver of 14years now, I'm hopeful that there is more information out there! When I was diagnosed in the UK ( I'm British) I could find nothing online, except from USA. I wanted details, graphic ones if necessary, to be more prepared for what was to come. Chemo and 36 sessions of radio is extremely tough, and yet it seems only breast cancer earns attention from every source. I'm lucky compared to others but since sex has not been an option, even after using dilators for 18 months, it's just too painful. Lesions open, then fuse together again. Maybe there should be a flexible structure that heals and keeps vagina open that is permanent? Men have Viagra and penis pumps, and even enhancement surgery. I feel women are badly let down!! Hopefully things will change as more anal cancer diagnoses are identified, more funding and more information. We have been through a lot, we are brave, and should be heard!!

Ask for magic mouthwash before starting chemotherapy. It is a prescription compound medication. I started using it on day 1 of chemotherapy, and I never had a single mouth sore.