zetapup checking in for the first time

zetapup
zetapup Member Posts: 10 Member
edited January 17 in Anal Cancer #1

Dear fellow cancer fighters, so glad to find this discussion board about anal cancer. In this post, I am going to give you a capsule version of my experience. I'll be chiming in to other threads and posting on expanded remarks in the coming weeks. Take care everyone !!! Zetapup

I am a 60 year old woman with no prior history of cancer. About two and a half years ago, I began to have very painful bms. There was also some light blood spotting. The doc said, "hemmorhoids." Dropped $200 on OTC stuff, nothing helped. Pain got worse. Covid lockdown began. I was reluctant to go into my doctor, tried to push the issue aside. Then this weird growth appeared on my butt, right next to my anus. From what I could figure out, this ugly circular tissue, with the consistency of a cross-cut sausage, began to grow. It became painful to sit down some of the time, esp right after a bm. Then it was always hurting. Back to the doc, covid be damned.

Diagnosis, via a surgeon's in office biopsy (ouch !!!) squamous cell stage 2-C anal cancer. Somehow related to HPV. I have had annual pap smears and never any indication of HPV. WTF? In simple English: I had a cancerous mass that ran diagonally through the lowest part of my anus with the top appearing outside the orifice. By the time treatment started, the lesion protruded about 1/4 inch. All bms were painful, even diarrhea, and sitting without an inflatable pillow was impossible. Wiping my poor butt after bm also impossible: too painful. I would step into the shower and wash my butt after every bm. I felt locked to my bathroom.

Caring for children or working a job would have been impossible for me from the very first day to about two months after treatment. I had caregivers to help me with personal hygeine, getting to and from appointments, sitting through appointments, shopping, cooking cleaning, doing copious amounts of laundry and just holding my hand when I got upset.

Treatment plan: 34 radiation treatments, daily, Monday to Friday. About seven weeks in all. Oral chemo: xeloda. One IV chemo: mito ...

Side effects: hellish, really. Diarrhea. Did what I could to stay hydrated. I preferred a bit of diarrhea to constipation because of the butt pain. All bms were very uncomfortable, and even the loosest stools produced a pain level that I call 11 plus towards the end.

My ability to taste foods changed, and then that leads to odd reactions to favorite foods, and overall interest in eating. I lost 20 lbs over the course of the treatment.

I had one IV chemo session on the first day of radiation. That made me tired and very spacy, plus very nauseous. Then oral chemo twice daily for the rest of the treatment period, again, nauseating. Radiation: I learned to show up every time, 15 mins ahead of schedule, be prepared to wait, take someone else's place, or to change machines at the last minute, do not forget to match your chemo to each radiation appointment and to time your doses exactly, and when the techs get you into position and then say lie very still, do your best to comply for the entire session. Be aware that your doctor will be working behind the scenes to check to see if each radiation session was properly done, and that moving during treatment makes for a less effective treatment.

But no one else monitored the oral chemo, that was up to me and my support team. Each radiation session itself was painless, but discuss pain with your doctors ahead of time so that you get the proper support. Expect , about a couple hours after treatment, a bizarre sense of internal heat, nausea and disorientation; then a whack of fatigue.

The skin on the front and back of my abdomen started peeling around week 5 and then the peeling got much worse. I lost all public hair and my vagina shrank; at the end there was also pain in my vagina.

Towards the end, I spent a lot of time using sitz baths, listening to audio books. I was too ill to follow a whole movie or read books or use the internet. I also got a wheelchair because walking was way too painful for a couple of weeks. And I felt the cold very keenly and bundled up even to go short distances in the summer sun.

How I coped with side effects. I pushed myself to get out of bed and move around a bit every day, with very gentle stretches to compensate for all the lying down and sleeping. I got prescriptions and OTC to treat side effects. There was a ton of diarrhea, constipation, skin peeling, nausea and pain. Apparently you can get pain in the feet and mouth sores, but I lucked out there. In general, it was the nurses who were best about providing info about side effects. The side effects were quite pronounced in the 4 weeks after treatment ended, then they quickly dissipated.

A personal note: this may not work for you. I found it very helpful to take notes, to have my caregiver take notes, and to gather all the print-outs produced by doctors and nurses into a large binder with divided sections and so forth, so that when I even when I was on max pain meds, I could go over schedules and info about side effects regardless of how loopy the pain meds made me. I kept a daily journal of diet, beverages, meds, sleep, treatments and so forth in one section of the binder. It helped me to communicate effectively with my hospital team and to keep track of what I was doing for each side effect as occurrences took place. (One nurse said, "wow, we are really impressed that you know the strengths and weaknesses of each med for a given side effect, and that you take them in the right order at the right time." When I asked why that was impressive, she replied, "you have no idea, so many patients take everything all the time , so they are treating diarrhea with the strongest anti-constipation meds for example." Maybe she was out of line here? Just fyi, if its helpful, great, if not, ignore.)

Taken together, the meds and over the counter stuff I was taking took up 3 single spaced pages of the doctors' printout. Its largely up to the patient and caregivers to figure out what to take for each side effect on each day. And the binder helped me to avoid some minor errors in taking meds.

A quirky protocol note: I was an out patient in a research hospital; some details of my treatment plan were altered during the six and a half weeks of radiation because new protocols were being adopted (and my insurance covered the changes) at the time.

The best advice I received: take everything one day at a time. If you are still freaking out, take things one hour at a time. It was too difficult to get my arms around the whole experience ahead of time. I avoided the internet searches on cancer, calling help-lines, and loose discussions about outcomes with caregivers and other patients. (!!!) My two cents: If someone in your world cannot get on board with this approach, consider what steps you might take to protect your sense of well-being during this trying time.

And now? it is 18 months after diagnosis and treatment, and so far, so good ... no evidence of cancer is evident, visually or iin MRI/PET scan/anoscopy. I have regained lost weight, have an almost complete return to normal digestion, and I am making progress on vaginal restoration. I am currently in a 5 year surveillance regime, and, with all due caution, I would say that my chances of a cure are very good.

Was my encounter with anal cancer, to date, frightening, stigmatizing, and incredibly painful? Yes. But it appears that I am responding extremely well to the treatment.

Best wishes to my fellow cancer fighters out there ! If I can help by saying more, please do ask. Peace.

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Comments

  • kateril
    kateril Member Posts: 20 Member

    Thank you... really, I can't thank you enough for sharing your experience. I'm about to have a port placed and start the six weeks of Nigro protocol treatment. I've done my best to prepare- yes, the journal to document everything, a bidet, meds/OTCs stocked, etc., without over-searching or thinking it, and will take things as they come. Bless you!

  • zetapup
    zetapup Member Posts: 10 Member

    thanks! sending you healing wishes, hope your medical and caregiver teams are as good if not better than mine. be brave, this too shall pass.

  • MesquitePoet
    MesquitePoet Member Posts: 10 Member

    Thank you for your frank and helpful post. I'm newly diagnosed- like you I am in my 60's with no known anal cancer risk factors. I was treated for colon cancer in 2012 and I am having a lot of anxiety based on what I know about treatment from my previous experience. I'm so happy to hear of your positive outcome. I hope you stay cancer-free and continue to feel well.

  • tracyak
    tracyak Member Posts: 2 Member

    I too thank you for being frank and up front with the side effects. I was diagnosed with stage 2a anal cancer and will get my medi-port installed in two days. I too will have chemo on the first day of radiation and again on the 29th. The rest of the time I'll be taking an oral M-F.

    I'm curious about clothing and the radiation treatments. My doctor mentioned that the radiation will cause pain and burns and that anything rubbing that skin will be painful. I have purchased some loose fitting dresses and am wondering if this will help. I'm normally a jeans and sweatshirt person. I've just turned 70. I've had no problems or warnings of issues, just a diverticulitus attack which turned into an ER visit and CT which suggested a colonoscopy and here I am. LIke everyone, I'm shocked.

    Sending out positive thoughts and prayers to all the people who have run up to this bump in their life.

    Tracy

  • drpearl
    drpearl Member Posts: 15 Member

    Oh my gosh I am so sorry to read your experience but so grateful at the same time! It's the first thing I've seen that closely related to my experience! I'm 6 weeks past treatments this week! I'm just now getting into these groups and on to the internet about this because I feel there is so little info on this specific (totally uncomfortable to say) anal cancer diagnosis. The treatment is different than all the colorectal things I've heard, and read.

    Thank you so much for your post, it makes me feel less like a weird unicorn.

  • drpearl
    drpearl Member Posts: 15 Member

    I too was a jeans person, I ended up with a few dresses because lifting my skirt was easier mentally than taking my pants off? But the best thing I did was too ask a few good friends to get me some wild printed men's boxer briefs so there was no seam and they were loose in that area.

    Shocked with this 2a anal cancer dx, I had my routine colonoscopy the week before my 50th bday, (wanted it done before I started a new job the week after my 50th). 2 polyps removed one precancerous one benign, then was told I was good and to come back in 5 years. Less than 10 months later at my annual visit with my pcp, due for pap (that was normal btw) she noted a concern and referred me to the CR surgeon. Two months later. a failwd office visit, an outpatient procedure with anthesia to biospsy,, then a call confirming cancer. Fast tracked apts with care team in order to get prework done before a LONG awaited trip. Then after returning from our trip, I began my 28rounds of Radiation with chemo pills daily m-f day one was iv chemo also.

    I'm recovering now, will 6weeks past final treatment this Thursday. Part of me feels like I'm waking from a bad dream, just now finding out really what anal cancer means. Hpv related and not the same as colorectal. I'm a 51 year old woman married for 30 years, not really in the high risk categories. Was overweight most of my life but had finally got fit 2 years prior to all of this. I found a food plan that made sense for me and I feel in love with a Concept2 rowing machine. I'd lost 48 pounds and kept them off! Now I can't eat the foods I feel great with. And I have no idea when I'll be able to sit on that rower again.

    I'm so very greatful to have finally found a place that is specific to the anal cancer diagnosis.

    Thank you all for being brave and sharing!

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    I was 62 when I went through treatment. I don’t recall wearing different clothes or having bad burns. I do recall itching at night in the general pubic area. I’m sure we al,

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    I’m sure we all react differently. For me, the mouth sores and no appetite from the chemo was worse than the radiation but for the diarrhea and limited amount of time to get to the bathroom that hit near the end of treatment and has lasted much longer.

  • tracyak
    tracyak Member Posts: 2 Member

    I just finished my 3rd week of chemo pills and radiation M-F. My bottom is very sore and according to my husband, it's burgandy. I noticed that my stomach has a small black patch. I am so puffy that my clothes aren't comfortable and am living in house dresses and sweat pants. Some days anything around my waist is very uncomfortable. The doctors say I'm right on track, what ever that means. My blood work is a mess to me, but I'm told he's not anything to worry about, so I'm not.

    So far no mouth sores and no peeling hands or feet. I was told yesterday that the side effects will continue to get worse until they get better. Oh boy! Actually, I'm not really in any pain, it's just uncomfortable. I was given lidocaine gel for my bottom and it's wonderful.

    I'm still able to cook and do house chores. I don't have the energy I wish I had. I do nap a lot and it takes a long time to get chores done but I'm glad I can still do them. I do a lot of reading, knitting and putting jigsaw puzzles together.

    I too am finding that I need to make frequent trips to the bathroom and when I need to go, get out of my way. LOL

    I found a trip I'm using daily and so far it's working. I use the facilities right after radiation, but before I can get to the car, I need to go again. So...I've been walking through the building to the facilites at the other end. Once I use that, I'm ready for my hour ride home. My husband has the routine down and is very good about all my trips to town. He has to stop and get a milkshake now and then, but I figure he earns it.

    I am so grateful for this board where we can share our worries, cares and everyday things. Most of us go into this a little on the blind side and don't have a clue what we are doing. This board has helped me understand I'm okay, I will beat this and some of the issues I've had are normal.

    Thanks everyone for sharing,

    Tracy

  • Mharrington
    Mharrington Member Posts: 17 Member

    I started my treatment a year ago today. Finished January 15, 2022. Was rushed to hospital on January 16 with Pulmonary Embolism and bowel obstruction. Spent 10 days in hospital, which felt like hell. Uncontrollable diarrhea and unable to get out of bed. There were some nurses and CNAs who were angels, and others who had no business in their profession. Feel like I have PTSD from the experience.

    By end of March, 2022 I started up my exercise routine. I feel that being in good shape before my diagnosis really helped in my recuperation. BUT, the urgency of having to go is still lingering. I can't go for walks outside for fear I won't be close to a bathroom. I was camping this Fall and didn't make it to the bathroom on time. My biggest fear is being in a public situation and losing it! My doctor said to try Metamucil, which did improve things but I still have close calls. I hate this!

  • drpearl
    drpearl Member Posts: 15 Member

    Ugh, sorry to hear you still struggle. I am wondering if I'll ever feel ok to leave the house before 10am again? I so badly want to get back to my healthy food choices, but it seems like leafy greens are just not welcome in my belly. I am feeling depleted of nutrients, trying to rebuild my strength and stamina, but can't seem to get caught up.

    My treatments were Aug 8 thru Sept 15 th 2022. I'm better... but so far away from FINE and ready to tackle all that life is been planning for when I turned 50 and my kids were grown finally. Now my amazing, strong, optimistic husband, is home from work, needing a mental break from this whole thing depleting him. It's not my fault, he put 110% of himself into my care when I just couldn't do anything those last horrible weeks of treatment and recovery. Hoping his STD payments are approved. It took 15 weeks for mine to go through! Now I'm out of time and not really ready to go back to work. But kinda have to do something partime soon.

    Life isn't fair, shouldn't getting cancer be enough! Ugh

    Damn Covid, Damn Cancer!!!!


    Guess i should be more realistic about regaining confidence regarding bowl control and consider depends now that my skin has healed, but I still have skin sensitivity near my pelvic area. Not sure I could tolerate the friction there. I already carry back up clothes everywhere. Ugh. This sucks!!!

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    i take Metamucil twice a day. If I’m unable to take it that often (away from home), I can easily tell the difference the following day. Not that things are perfect even 5 years after treatment. Sometimes I will take Lomotil beforehand if I am going out to eat and want an entree-sized salad or my stomach is nervous about something. I went for pelvic floor therapy about a year ago, it helped a little but I’m not following upwith exercises since then. 😕

  • Mharrington
    Mharrington Member Posts: 17 Member

    I do have to tell you things will get better. But you're right this sucks! After finishing treatment a year ago, I feel fine, and sometimes forget that I was ever sick. And then, I'll be out somewhere and the urge to go comes over me and I have to find a bathroom immediately. Two weeks ago my husband and I were driving on an Interstate Highway and all of a sudden I had to go. The next exit was about a mile, and a large Pilot truck stop, with McDonalds and several other eating places about a mile down from exit. By the time we got there I was so stressed from trying to hold it and I literally thought I would lose it while trying to get to the bathroom. I made it, and while going I got a horrific pain up the back of my head. I thought I was having a stroke or something! I got back in the car and we sat for awhile and pain moved to top of my head, and then just became a dull headache. When we got home I laid down and was fine when I woke up.

    Two days later I was at the gym and was at a weight class and went to do triceps with weight and when I brought weight behind my head the pain in back of head returned. Stopped class, came home, took my blood pressure and it was extremely high. Called my PC and she told me to go to ER. Long story short, after CT scan and MRA of head they diagnosed exertion headaches, but also in testing found brain aneurysm. They say the aneurysm is small and not the cause of headaches. They could put a stent in but the risk of that procedure vs the aneurysm bursting is not worth doing yet. So, at this point I have to keep telling myself, it's really not in my hands.

    We belong to a hiking club but haven't hiked with them since my diagnosis November 2021. They have a trip planned to the Pacific Northwest next Fall and I so want to go. Do I want to wear Depends (which I did break down and buy after Interstate incident) and go. Just don't know if I can handle another incident. It's so stressful.

  • Mharrington
    Mharrington Member Posts: 17 Member

    Ugh, after 5 years out you still have the urgency? That's the whole problem. I feel fine and think everything is great and then all of a sudden I have go and I better be close to bathroom. I just don't think a normal life is ever going to happen and it sucks.

    I was going to look into Pelvic Floor Therapy. If you follow up with exercise is it worth going to?

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    I think the therapy for me had minimal impact. I felt like I was doing better holding my muscles but I got the impression that there was minimal change in the meter or whatever the therapist was looking at. I do recall being able to get upstairs to the bathroom without any mishaps one day when my husband was working on the powder room. Not sure that I could do that today. Okay, maybe I better start doing the exercises again.

    I’m somewhat resigned to never being my old self again.

  • Mharrington
    Mharrington Member Posts: 17 Member

    I think that's what so frustrating about this type of cancer. We'll always have to deal with this .

    On another issue, which is pretty personal as well, were you able to return having sex with your husband? We hadn't tried for several months, going through treatment and right after, and when we did try there was no way it was going to happen. The radiologist sent my to the PRISM clinic (Program for Integrated Sexual Medicine for Women with Cancer) at the University hospital I was treated at. I guess the radiation caused major scar tissue in vagina. Just another thing to deal with🤦‍♀️

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    Nope, it hasn’t been a priority for whatever reason for either of us. I only became aware of vaginal stenosis from reading this board. None of my doctors ever mentioned it! 🙄When I finally mentioned it to the radiologist’s nurse, she had me return and pick up a hard plastic dilator. Did you receive any treatment for this that helped?

  • Mharrington
    Mharrington Member Posts: 17 Member

    My radiologist did mention it several times and told me about the Program for Sexual Medicine for Women with Cancer. He did say the sooner I went there the better but I didn't pay much attention to him. Then when we tried having sex and it wasn't going to happen, I contacted the PRISM clinic. The doctor in charge of the program only does video visits. I had my first visit with her about 2 months ago and honestly, I felt like I was talking to Dr. Ruth. Long story short she recommended a dilator and then some moisturizing gel that I insert 2 or 3 times a week. Got the dilator (it came with several sizes) and was supposed to insert it for 10 minutes each day. After 2 weeks I wrote to her on MyChart that I insert it and it seems like it hits a brick wall. She told me to stop using the dilator and to make an appointment with my gynecologist and bring dilator to appointment. I feel really weird doing that. I have a video appointment with her, (PRISM doc) on December 20 and trying to decide if I want to keep it.🤷‍♀️

  • HolyCow57
    HolyCow57 Member Posts: 2 *

    Thank you for your helpful post. I also have the HPV-related anal cancer, while having all HPV negative paps, including after my diagnosis! I really don’t understand it, but it is what it is I guess.

    I’m about to start treatment and I have a couple specific questions. As the diarrhea increases, is it uncontrollable? I’m about an hour from where I’ll be receiving my radiation. Will I need a hotel room those last couple weeks? I’m also concerned about what impact this could have on my husband as far as infecting him. If my pap is HPV negative, do we need to use condoms now??? Sorry this is so graphic, but it’s easier asking here than in the docs office. Ugh.

  • Dodiefae
    Dodiefae Member Posts: 39 Member

    I too have tested negative for HPV. I don’t see why you would need to use condoms.

    I don’t recall having diarrhea right before or after radiation. Of course, I was eating very little at that time. (Also, I received radiation about 15 minutes away.) I do recall bringing a change of clothes with me in the car (and for months afterward) if my husband and I were driving any distance. I needed to for my piece of mind. I did very little in the way of errands or shopping during treatment because of fatigue, etc.

    Good luck!