Anal Cancer: Male Point of View

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Anal Cancer: Male Point of View

Postby jfrancis99 » Tue Feb 23, 2010 4:22 pm

In December 2008/January 2009 I developed what I thought was a hemorrhoid, which bled slightly, and I ignored it. I travel extensively, and sit a lot, and I put it up to basic anal strain, and doing heavy bodybuilding - lifting and squats. That's not what it was. In July suddenly my bleeding was not spotting my bowels, it was spotting my underwear, and when I (not pretty picture) saw a toilet full of blood, I realized this was likely to be colon or rectal cancer. But it wasn't. I called some cancer researcher friends (Living in Houston - MD Anderson, Baylor Medical, I'm surrounded by some of the best) and immediately had a full colonoscopy (with the Michael Jackson drug propofol which made the experience quite strange, but that's another conversation) and the doctor found a mass in my anus, clearly a cancer. Anal Cancer, just like Farrah Fawcett. Initial diagnosis was <1CM which means removal by surgical biopsy. But the story complicates.

I was referred to a very nice Oncologist, who had dealt with Anal cancer before and very familiar with it, and of course I read up on the treatments, and informed myself what I was in for. It's very rare, maybe 2 in 100,000 people, but it's been increasing in the gay community, perhaps up to 160% growth over the last years, and gay men have 35 times the chance of contracting than the general population. It's a kind of squamous cell tumor, or skin cell tumor, which line the anus, and is generally caused by one of the HPV viruses - which cause anal warts (I learned type 16 subsequently). It's the kind of virus that they now have some vaccinations for - for women, to avoid cervical cancer (an analogue of anal cancer in men) but there is no research that proves that HPV vaccines work well for men. There is something called a "tush smear" which gay men can have to have early detection of "dysplasic" cells which show a tumor has started. Of course, I just though I had an irritated hemorrhoid.

Next came surgical biopsy (brief surgical procedure, general anesthetic), CT scan, and PET scan to see the true extent of the cancer. It was actually around 4-5cm, had spread up towards my rectum, and had invaded several lymph nodes (in my groin, and to either side of my rectum). My staging as it's called was T3N4M0. Not malignant, had not spread to any organs, localized. It's been a long time since this kind of cancer has mandated surgery, and the standard, and generally curative treatment is radiation therapy combined with simultaneous chemotherapy - Nigro protocol (google it for detail). The squamous cell anal cancer is very sensitive to chemo, and the idea is to do a round of chemo to kill a lot of the cancer, wipe up the remaining cells with radiation, and those not dead but stunned are wiped out with a final round of chemotherapy. I had a "Port" implanted in my chest for chemo subsequently (brief surgical procedure, general anesthetic). So in September I embarked upon a 7 week regimen of radiation starting and ending with a week of chemo with mitomicin (2 hours) followed by 5-fluorouracil (1 week continuous pump) at the same time doing "IMRT" radiation - focused, tissue-sparing radiation. That's when the fun begins.

The initial chemo had no discernable effect on me, and it took two weeks for radiation burns to start. Between my buttocks, under my buttocks, top of my legs, between my legs, my scrotum, and the underside of my penis. And the burns got more intense with time, eventually reaching 2nd degree burn stage - open, raw, bleeding wounds. If you really want to have a fright, have the entire underside of your penis burned raw. That was about mid-week 3 and I realized I was in getting in deep trouble. Every day was a little worse, 8 minutes (which I was told was a long time by the technicians) on the machine rotating around my pelvis and bombarding the cancer, lymph nodes, and unfortunately flesh, with radiation. By week 5/6 I was bleeding freely when I took burn-salve bandages off, and I was beginning to feel exhausted from doing simple things like, say, sitting upright or walking. I was still working full time during all of this, a testament to decades of bodybuilding, but something else had started, which was the radiation was killing off my white-blood-cell generating capacity.

Needless to say, my anus, rectum, and lower intestine also had 2nd degree burns, which meant bloody, violently painful stool. Near end-therapy, I was up to 3 40-mg tablets of Oxycontin per day to function, but Oxycontin is constipating, which made bathroom time even more unendurable. Week 7 was arriving which was combining final radiation therapy (I got a total combined dosage of rads near the limit of what humans can get without major poisoning reaction I believe) with a final round of chemo, and even though my white blood cells were beginning to be low, it was still acceptable to have full-dosage chemo. But it was the final chemo that really did it for me.

Daily, after radiation/chemo were over, I felt worse. Tired, burned, and now with burns through my whole GI tract (starting with mouth and throat) from the Chemo, it felt like i was swallowing ground glass to drink water. I had a lidocaine mouthwash so I could eat, but it only made me more nauseated, and of course I had plenty of anti-nausea drugs which I was also wrestling with. Straight downhill, by friday of the week following cessation of therapy, I was up all night with bad diarrhea, fainted in the bathroom, and around 7am started vomiting blood and having 30-minute diarrhea sessions. To put a fine note on it, there's really no sensation quite like hot diarrhea hitting open 2nd degree burns. Something like molten lava. My body temperature started going up, and I hit around 101. I could barely move by 9am, and so came the emergency squad and off to the hospital.

I had a full blood panel, was put on IV and broad-spectrum antibiotics, and it was found that my white blood cell neutrophil count was down to around 500, e.g. severe risk of infection (Neutropenia). To put it in perspective, in terms of white blood cells - specifically neutrophils - what I should normally have is something in the range of 3000-4000 cells per microliter . I was down to 10% of that, and possibly going down. So I was kept in the hospital for 5 days, 3 days of no food, and monday after admission a tube down my throat with a camera to examine my duodenum, stomach, and throat for possible bleeding sources. Not a happy time, but I noticed that the burns in my mouth and throat had healed enough for me to swallow by monday, and the burns on my pelvis stopped sticking to dressings. My neutrophil count started rising daily, and by tuesday was at 1100, wednesday 1600, and it was clear my body was rapidly regenerating itself at the cellular level and healing.

By the time I left thursday of that week, all 2nd degree burns had closed and healed tolerably (no scarring), pain during bowel movements was subsiding, pain urinating was subsiding, but I felt like a steamroller had gone over me, and I spent a lot of time at home resting. Two weeks after all therapy is over, I was able to do about 12 minutes total for the day of cardio running up and down stairs, I could sit for more than an hour at a time without major discomfort, and i'm eating like crazy to gain some weight back. I've dropped under 200 pounds, or I've basically lost somewhere between 35-40 pounds.

My body wanted to urinate about every two hours, but I was able to control that much better as time goes on, I had "anal leakage" because the muscle and nerves are fried and can't tell the difference between gas, liquids and solids so they aren't tight as a drum. But at that time I had not had any bleeding for weeks, the cancer mass that I was able to feel is shrunk/shrinking, and within 4-8 weeks when I would have another series of checkups, it was substantially reduced, and on its way to being eliminated. It will take months to be completely clear of the cancer mass, but before complete "No Evidence of Disease", I'm in for continuing odd side-effects of the treatment. I hoped to be able to go back to the gym by January of February.

Unfortunately, I developed an anal fistula as a side-effect of everything. You can google it. It's a small canal between the anus/rectum junction (in my case) to the outside - a small hole appeared on my perineum (your 'taint' as they say in Texas) and feces could come out. Nice. My colorectal doctor put what's called a rubber-band "seton" through the new opening (brief surgical procedure with general anesthetic), which irritated it but kept it clean and non-infected. The seton remained in place for about 8 weeks (not nice having a rubber band hanging out of your ass), and then he removed it and put a graft in place to seal the hole (brief surgical procedure with general anesthetic). Four weeks after the graft, it seems to have taken, and healing normally.

So, that's the story of my 6 months of cancer/treatment, and I advise all sexually active men here to do a couple of things. Consider the "tush smear" which is like a pap smear for the anus, for early (and very curable) detection of anal cancer. It should become a normal part of the annual checkup. Second, monitor HPV vaccination (Gardacil), and see if Doctors begin recommending it for gay men, or just go get it done. It may not help - there aren't statistics - but it definitely might help (it does in women), and if so it's an excellent protection from a needlessly painful and unpleasant bout with wart-induced cancer. I'm one of four men in my circle of friends that had anal cancer - within an 8 month window. Staggering. Fortunately my friends were at stage 2, or stage 1, and didn't suffer as I did with the treatment.

Notes from a treatment:

So here's a good "real deal" message for my treatment, for anyone here but primarily men. I'm not going to make it sound better than it feels.

"Chemo Port". I had a port implanted in my chest which would allow introduction of chemotherapy drugs directly into my Superior Vena Cava (or "SVP" as the technician said). it was a teardrop shaped blob about 2 inches long, just under the skin on the right side of my chest. I could feel a plastic tube that looped back and inserted into a vein somewhere around my collar bone, and then apparently would loop into near my heart. Was very irritating, say with a seatbelt on, and looked strange in teeshirts. Was removed 3 months after surgery with local anesthetic and that was that.

Eat whatever you want, whenever you want, it will be important to keep your body mass up. High carb, high protein. I loved fresh fruit, but towards the end of radiation, my appetite disappeared. I had to force food down. Be prepared with chicken soups a lot of very liquidy foods. Ensure.

You will need to be prepared for pain. It will become a familiar friend. When I was restless at night I would count the different types of pain, my mind gave them numbers I got up to 170 when I most delirious in the hospital. I started with Vicodin, then went on to oxycodone, then oxycontin (time-release version of oxycodone), about 120mg twice a day. Got morphine in the hospital. My doctor was prepared to go on to morphine but my treatment finished. Doctor's prescription. Don't hesitate to ask.

Your pain medications will be constipating. Be prepared with a stool softener like ducolax, and I used Miralax (PEG based laxative) which helped a lot. You want very soft stool.

You may need something called proctofoam, which is a mild anaesthetic and anti-anflammatory which you introduce into your anus. Doctor's Prescription.

My radiologist also gave me Balsalazide disodium, which he recommended as a kind of "aspirin for your lower intestines". It may have helped a lot with my lack of intestinal and rectal inflammation. Doctor's Prescription.

Then, very important: Silver Sulfadiazine cream. It is to treat your radiation burns which you read descriptions of in my previous post. Doctor's Prescription. Be prepared with lots of 3x3 and 4x4 gauze pads. I would cover two pads, and place them on either side of my crotch, in the v between your leg and your scrotum, where I had open, bleeding burns. I would place a covered pad under my penis, which also had burns, very difficult to get pads around my anus and under my buttocks. I never put any cream between my buttocks but that was burned too. I had to have ace bandages around my thighs to hold the pads in place, but long jockey-style underwear works better (essentially jockey shorts with long legs).
Your visible burns will be mostly healed about 7-10 days after the end of radiation, and completely healed within 14-21 days. Mine are all healed (some residual scabs) 14 days from my last radiation. I had about a pint jar of the cream and used a lot of it.

Nausea. Be diligent about (1) asking for anti-nausea drugs and (2) taking them before you feel nauseated. I hate taking drugs, and this bit me in the ass. My 1st drug was prochlorperazine, then had to go stronger with ondasetron. Doctor's prescription. Don't fail to ensure you have anti-nausea drugs during the 2nd chemo round. When they say take every 6 hours or as needed, don't fail to take every 6 hours.

I also took occasional Aleve (2 tablets) for additional inflammation. May disturb your stomach.

The last chemo wrecked me (as I wrote). If you get extensive burns in your mouth, you will get a lidocane-based rinse. I hated it, and failed to coordinate it correctly with anti-nausea drugs. Don't fail to ask for it if you have trouble swallowing - for me it felt like ground glass. You will get dehydrated which you must avoid.

Hair. You'll lose all your pubic, upper thigh, and buttock hair. I told my friends I got a "Brazilian" to make fun of it. No facial hair loss (I have a beard), and no head hear loss, but I've heard differently from others.

Sitting. Find a comfortable seat. I tend to sit a lot at my work, and it was crucial for me. Make a nest at home for yourself to sit comfortably, I ended up having to lie on either hip.

Emotions. Be prepared to be overly emotional (not depressed). When my chemo ended and I was in the hospital, I would cry watching Little House on the Prairie. I'm constitutionally a hardened big-city cynic and very sarcastic, so this crying stuff drove me crazy. It slowly went away. Watched Jaws recently and got a lump in my throat when Quinn was bitten in half at the end by the shark, so crying is better but not gone. I have a feeling my testosterone is wrecked.

Urination. Towards the end of treatment, and immediately after treatment, don't expect to be able to urinate standing up like men always do. When you relax to let out the urine, you'll relax too much and mucus and other stuff will come out your anus. Urination wasn't painful at the end of therapy, it was literally hair-raising. The good sensation you get when you relax and the urine flows for me changed into an almost faint-inducing wave that lasted all while I was urinating. LIkewise, the urine didn't flow all at once, mine initially came out,
about 100ml, then only when I concentrated would my bladder push out the rest, say another 250ml or more. Two waves. I really had to grit my teeth. I had to urinate very frequently, about every 2 hours, but that's tapered off. Within two weeks of treatment cessation, I could urinate standing up, with only a bit of flatulence, and I can hold off for 4 or more hours.

Personal Hygiene. I simply haven't seen anyone write about this. I had to wear adult diapers very quickly. I preferred "Tena" which is a new brand, to "Depends". My "equipment" is pretty big so it was important to have the diaper shaped for a "man" so my penis and testicles didn't get squashed. Adult diapers can be ripped open on the sides, don't slide them off since they will be dirty. I didn't know this but the nurses showed me at the hospital. Later I could wear jockey shorts, with a kind of absorbent pad in it because I would still gently leak mucus as I have flatulence. It's been decreasing steadily since treatment stopped, there was still inflammation 6 weeks later., I prefer to clean off in the shower after a bowel movement to wiping - but I do have boxes of soft-wet wipes from Walgreen's for incidental cleanups. By 5 months later, was able to use paper normally, with wet-wipes.

Sex. I could still have erections and ejaculate up to the 2nd week of treatment, but when I started getting burns on the underside of my penis, you could forget jacking off. Erections began normally within 2 weeks of treatment cessation. I in the hospital I had a wet dream (first time in what, 30 years), and also at home a few days after returning from the hospital.
That was a big surprise.

Anal Fistula. Other than the aforementioned seton, I took no special drugs or precautions for it. I was given Vicodin for pain after both surgeries, but that was irrelevant. I never really hurt.

That's all I can think of to be very open about what I experience. The main thing that kept me going was to understand that it would all be over at some point. And it is.

I'm happy to provide private cheering up and discussion to people who are worried, need someone to talk to, or want more detailed information. My private mail is oldjdfhome at I can recommend a great colorectal surgeon, colorectal oncologist, proctologist, radiation oncologist, cardiac implant doctor, and so on.


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