Thank you for inviting me to speak to you today. This is quite an honor and I hope relating my experiences and insights will help you help your patients move through this process a bit more easily.
I'm going to give you a short bit of biographical data – yup, the boring part, before talking more specifically about anal cancer, but I promise to keep it as short as possible.
I'm 72 years old, was born in MD in 1946 where I lived until 1972 when my husband and I moved to Palo Alto so he could pursue a PhD at Stanford. Found out that I loved CA, but wasn't so crazy about him. Got a divorce, a job in a hippie bookstore and found myself in the middle of the sexual revolution. For those of you too young to remember, here's some background on the 70's – It was a very free wheeling time – we had the pill, Roe v Wade, penicillin, no knowledge of AIDS, herpes wasn't on anybody's radar – and in my case, my parents and everybody I knew were 3,000 miles away. For the first time, women were encouraged not only to acknowledge their sexual desires but also to act out on them! So I did. I joined the “stud of the month” club and met a lot of interesting men. I had a bunch of different jobs, worked on the Space Program, worked with seniors, opened a small hypnotherapy practice, tried a lot of different career paths, but like the men in my life, nothing really stuck until relatively recently. Steve and I met about 20 years ago and he's been my rock through all this as well as a fabulous wound care nurse.
But now onto the medical chronology:
In 2006 my ex-husband got squamous cell throat cancer, probably HPV related, but that was never confirmed. I haven't seen him since 1973 when the divorce was final, so this is barely a blip on my radar.
In 2016 I had a routine colonoscopy, my delightful GI doctor (I'm really very fond of him) found a pre-cancerous polyp and a suspicious area in my anus. The biopsy came back completely normal. He suggested a follow up in 3 years.
Two years later, my knees had gotten so bad that I could barely walk. I have a lot of metal allergies, but finally found a zirconium knee implant and a surgeon I liked and got the first knee replaced in April, 2018.
In December, I had some rectal bleeding, but 3 doctors assured me it was just hemorrhoids. Since I was anxious to get the 2nd knee done in January, I accepted the hemorrhoid diagnosis even though the bleeding was heavier than before and my gut was suspicious that something more serious might be going on.
In January of this year, I got the 2nd knee done. I had to wait 3 months after surgery to have any procedures done, and scheduled the follow up colonoscopy for late April. In mid-April I got a check up with my new PCP and she declared that despite extra pounds and a less than optimal diet, I'm extraordinarily healthy.
Thursday April 25, I had the colonoscopy – there's an obvious problem and a huge ulcer in the lower rectum or anus; biopsies are taken. Two days later on Saturday I got an email from my GI guy asking me to “please” come in first thing Monday morning rather than a week later as was scheduled. If you want to scare a patient out of their mind, this is a great technique – be sure to use the word please for a particularly terrifying effect. This was the beginning of an incredibly miserable weekend. Knowing there was something bad wrong and not knowing what made me crazy.
Monday morning I got the squamous cell anal cancer diagnosis and a referral here to the UCSF anal neoplasia clinic as the absolutely best place to go for anal cancer. Lots of fear and uncertainty which waxed and waned but stayed with me at least until the physical symptoms started taking center stage.
Wednesday morning – May 1st, Mayday – met Naomi Jay got more info about anal cancer. Talked about my sexual history and was told that I had no risk factors for anal cancer, but was just unlucky – picked up the wrong strain of HPV and didn't shake it. Found out the Nigro protocol was well established and I could get treated close to home. Actually just a couple of blocks up my street, so that was a huge relief and allowed me to get to all my appointments on my own. This started a month of meeting doctors who would essentially say, “hello, nice to meet you, mind if I stick my hand up your butt?” To which my reply was “no, not at all, everyone else has.”
To quote Naomi, my tumor wasn't “small.” Surgery was not recommended, but the protocol of concurrent chemo and radiation should give excellent results. Cure rate of at least 80%. Tumor is at least stage 2, possibly stage 3, very unlikely to be stage 4. I find out that I have a sexually transmitted cancer.
A cancer diagnosis is a shock. Having asshole cancer is doubly shocking, and finding out that it was sexually transmitted was shocking and embarrassing. At first I wasn't sure how I was going to handle all this, but I learned early on that my friends will pull me through anything and everything. I chose to go public with my diagnosis and by public, I mean public. I started an email support group that has grown to over 50 people where I talk about what I'm experiencing, how I feel about it, what's working and what's not.
Everybody has been incredibly sweet. If they're thinking that I had anal sex with the entire 7th fleet, they're keeping it to themselves and just being supportive. Works for me. I've even told the guys at my local Trader Joe's that I have asshole cancer. Their response? They gave me flowers and always ask how I'm doing every time they see me. Going public was absolutely the best decision I could have made for myself. It might not be right for everyone, but it was right for me. I traded my privacy and dignity for love and support and it's the best trade I've ever made.
On Friday, May 3, I met with a specialist I never thought I'd need, a medical oncologist. I have about 80 questions which he answers and this is great. But one of my questions is has he treated anal cancer patients before? He said yes, 25 to 50 cases and all did great. Tilt. I already know this is a rare cancer and what the cure rate is. I understand why he might want to lie to me, undoubtedly so I'll feel confident with his care, but there are other ways to make me feel safe. Letting me know that he's coordinating with UCSF, has access to a more experienced doctor that he can consult with, etc. would have been acceptable even if I were his first anal cancer patient. All his lie did was destroy his credibility. Do not lie to your patients. You may get away with it with some, but these days, there's just too much info readily available, and more and more of us are going to catch on.
We scheduled a PET CT scan for May 8th, got good results, but there was a possible hot spot in the throat area.
The next day, May 9th, I met my radiation oncologist and found him to be much warmer and more personable than my medical oncologist. He told me he had 4 previous anal cancer patients and I found this believable. He recommended doing a temporary ostomy to avoid the pain of passing stool. I elected not to do this. Just didn't want the possible complications of two abdominal surgeries if I could tough it out. He stared at me for a few seconds and decided I was tough enough to go this route like only one of his previous patients had. This was a good decision for me as I got through it with minimal pain meds. My radiation oncologist opined that the PET CT showed a false positive in the throat area due to swallowing. Helps me relax a little, but I'm still very scared.
I'm not sure of the exact timing for much of what happened after that. I got matched with a peer counselor, or butt-buddy as I like to call her in Florida. We're very much alike in a lot of ways and neither of us is afraid to talk about anything. She's a psychoanalyst and coach and I did hypnotherapy for a while, so we had some common ground. The early part of this process was terrifying. I was afraid that any delay might allow the tumor to metastasize and while I was busy with prep work – learning what I could about treatment, shopping for OTC drugs and supplies I thought I might need, I still had plenty of time to drive myself crazy. Judy was fantastic. She validated everything I was feeling, gently reassured me that I would get through this, answered all my questions about her experience, and helped me come to grips with my shame and guilt about having anal cancer. I picked up a nasty strain of HPV that caused this cancer from one of my many sexual partners. I had, on a few occasions, tried anal sex. My behavior exposed me to this danger, but at the time, we were all unaware of the possible consequences, and it was the zeitgeist. A whole lot of people were behaving exactly like I was, so UCSF was basically right, I just got unlucky. Accepting that we are all shaped by our choices, both good and bad, helped me get over the shame of getting a sexually transmitted disease in my ass. I did what I did, had a great time doing it – for the most part anyway – and the chips fell where they fell. C'est la vie.
While I trusted my doctors, read the pathology report, saw an image of my cancer on a monitor at UCSF, I still had a tough time getting my head around the fact that I had cancer. I felt fine. I was virtually asymptomatic and yet I was signing up for a long tough road with pain, nausea, mouth sores, hair loss, fatigue and who knew what else. In order to really get a visceral sense of the reality of my disease, I gave myself a digital exam and felt the living cancer tumor. Nothing subtle about it. Felt like hard rubber and it wasn't hard to find. I'm glad I did that. Really helped me get with the program.
On May 20th I started chemo and radiation.
Dr. Berry wants me to talk to you about the effects of treatment and what I've learned.
I was able to keep my mouth sores to a minimum with very frequent (8 to 10 times/day) use of baking soda and salt mouthwash and brushing my teeth after eating. I was using a mint toothpaste that was painful until a nurse friend told me to switch to regular toothpaste – big difference, much, much, better.
I bonded with the radiation nurses and techs and seeing the same sweet health care providers daily was incredibly supportive. Getting to pick the music played during treatment was grounding and made me feel like a unique person and not just the daily 1pm appointment. At this point I'm still dealing primarily with the psychological issues so constancy and friendliness are the best medicine.
I had sore, painful, and frequent poops – I was passing something acidic through my raw butthole up to 25 times a day. I bought a ton of wash cloths to help clean the area, but found the fabric too thick to get into all the little cracks and crevices. Went to the local fabric store to find some “butt-ugly” fleece that I could cut up into small squares (about 7” on a side) and use more effectively for the job. Perfect choice – just the right thickness, doesn't hold too much water, just enough to clean the area, and the fabric doesn't unravel or do anything weird in the wash.
The oncology dietitian had recommended a low fiber diet, so I was surprised by Dr. Berry's suggestion to take Metamucil and now I'm down to about 4 or 5 poops a day. Huge improvement. I had no idea that fiber could both increase and decrease pooping. Thank you so much! Just wish I had known earlier.
I had skin burns where the top layer of the skin in my crotch sloughed off. I didn't understand what was happening and wasn't looking in a mirror, so when it felt slimy, I tried to scrub the “slime” off in the shower. A little more info about what losing a layer of skin would feel like or a recommendation to visually inspect myself would have been helpful.
I have fatigue – not horrible for the most part, but disconcerting, none the less. Again more of a psychological problem.
I now have pain in my legs and gut. I wasn't expecting that and had to read in the book “Cancer Up the Wazoo” that this could be lymph node damage and might take months or longer to resolve or even be permanent. Didn't realize that radiation could put a serious kink in how my lymphatic system works, or that it could affect my bones and ligaments. Not sure if knowing this in advance would have helped or hurt. But now I know to ask about any strange little symptom I notice. Knowing to report everything would have been good.
I got excellent advice from the chemo nurses to start on anti nausea drugs immediately after getting my first dose and not wait for nausea symptoms to start. Took both zofran and compazine and had relatively little trouble with nausea. Only threw up twice.
After I completed chemo and radiation, I spiked a fever and my blood counts got very low. I spent 6 days in the hospital. This was the right place to be with IV antibiotics, two units of whole blood and a bag of platelets. Told my favorite jokes to dozens of different nurses and once the dietitian suggested chocolate milk shakes with every meal, had a pretty good time there. The on-call oncologist treated me for neutropenia before my levels were officially there, saying that if she didn't do something then, I'd be neutropenic very soon anyway. An excellent call. While in the hospital, the wound care specialist had to scratch her head for how to best treat me. I'm allergic to sulfa drugs and can't tolerate them even topically, and have a lot of metal allergies including zinc which ruled out most topical pain meds. She ended up cleaning the wounds, applying lidocaine, and Cavilon, a No Sting Barrier Film made by 3M. Worked like a charm. The wounds healed up in record time. The only tiny hitch was that the first time she used the film, she sprayed it over areas where I still had a few pubic hairs. Ouch. But a quick shave front and back fixed that problem. The oncology ward nurses were impressed by my cheerful attitude, but I figured that I was going to experience the same physical misery whether I laughed or cried, so chose to laugh.
Dr Berry also asked me to talk to you about how the diagnosis of anal cancer has affected me.
I never thought I'd get cancer. Didn't think I had the personality for it, so had to re-evaluate who I thought I was. Telling everyone of my illness has shown me how very kind people are and how many friends I really have. I was shocked at how supportive everyone has been and it's been a real gift. As I was undergoing treatment to kill the cancer, I talked to it and thanked it for its gift of showing me how kind people can be, even strangers. I thought of that as cancer's gift and the tumor as the wrapping paper, accepting and loving the gift while throwing away the packaging.
Another thing I've been asked to address is whether my providers could have prepared me better or communicated with me better either while giving the original diagnosis or describing treatment.
My GI doctor was so sweet and distraught when he told me of the cancer that I found I wanted to comfort him! Every illness or malady I've had prior to cancer has either completely resolved or given me more function and less pain in the case of my new knees, so I was unprepared for the possibility of long term side effects. Probably my doctors mentioned some possibilities, but in my initial shock I think I missed that. Talking to my butt-buddy, I've learned that radiation can continue to change your body, and not in a good way, for years or even decades to come. This scares me a lot as I'm not sure if my leg pain will resolve or be permanent or how my pooper will end up. Will I have decent sphincter control? Pain? Continue pooping 4 or 5 times a day forever?
I've been told that you as providers who care for patients at risk for cancer want to know how you can do a better job of caring for patients.
The number one thing all of you can do is not to dismiss rectal bleeding or pain as simply hemorrhoids. A quick digital exam when I first complained of rectal bleeding could have picked up my anal cancer months earlier.
I just started seeing a pelvic floor physical therapist to get help with vaginal stenosis and sphincter control. Not only will the exercises probably strengthen my pelvic muscles, it helps me feel more in control in that there is something I can do to improve my symptoms.
Please be aware of timelines when scheduling treatments. At first my chemo and radiation were scheduled to begin on Wednesday, May 22, which with the 96-hour infusion of 5-FU would have had me finishing on Sunday morning of Memorial Day weekend. I complained and managed to get rescheduled 2 days earlier on Monday the 20th, so I could get rid of the pump on Friday and not have to lug around an empty pump for a couple of extra days.
Encourage patients to discuss any changes that they are noticing even if they don't think it's related to treatment. Have honest discussions about what might be going on, and what you can do to ameliorate any problems. Don't be afraid to suggest experimenting with different options. If a low fiber diet isn't working, suggest high fiber. Say you don't know when you don't know. You know a lot, but we don't expect you to know everything. Tell the truth.
Cancer or more precisely, cancer treatment, will scar me, both physically and psychically. If I talk about physical problems, explain what you know about what's going on, and give suggestions if you have any. If it's a psychological issue, listen, be present, trust that I can find a way to move forward. Acknowledge that the whole process is hard. Don't be too quick to “fix” it. Just be willing to travel the road with me.
Thank you for inviting me to tell my story and hopefully be a positive part of someone else's healing.
UCSF Patient Perspective Talk to IANS (International Anal Neoplasia Society) HRA (High Resolution Anoscopy) Course, July 28, 2019