Before you turn to specific concerns, take a deep breath, and consider how to deal with this diagnosis and maintain your equilibrium. Don't let it defeat you before you start! Here's a lovely essay on that subject, and a collection of "tips for beginngers" is here. The standard Nigro treatment for anal cancer is a combination of radiation therapy and chemotherapy. Both elements require advance preparation. The following is based on my own experience and that of many fellow patients described by them in their own blogs. Individual patients may have slightly different experiences; for example, one patient told me she was marked on her backside, and had her radiation lying on her stomach, so no “cradle” was used. This discussion should help you ask questions about what may happen in your case. Take great care with proposed "alternative" treatments; most, if not all, have not been proven to have any effect, and some are actually dangerous. Review any that interest you on medical websites such as Quack Watch, and with your own medical team. The M.D.Anderson Cancer Center has an excellent article about this here, with recommendations on how to find and pursue "complementary" treatments that interest you, with the knowledge and approval of your oncology team. Within the National Cancer Institute the Office of Cancer Complementary and Alternative Medicine offers numerous links to reliable information. Another discussion on complementary treatments is here on the Cure Today site. If your oncology team believes that your particular case merits inclusion in a clinical trial, please consider participating; not only is it important for your own treatment, but for the development of better, more effective tools. The National Cancer Institute has information on current clinical trials here. If you have any problems as you prepare, the Patient Advocate site may have helpful links. And a new app that helps you pull together the various supports that you will need going through treatment is available, free! As you react to your diagnosis, here’s a summary of questions you might want to ask.
Your medical team is composed of your medical oncologist, who oversees the whole treatment and your chemotherapy; a radiation oncologist and various radiation technicians; oncology nurses; and the pharmacist and infusion technicians who prepare and administer the chemotherapy. You may also have a colorectal surgeon who will assist in the follow-up examinations. And your team should include your dentist. Meet with him or her prior to treatment to learn how to protect your mouth during the treatment, and how to minimize the side effects. The National Institute of Dental and Craniofacial Research has a number of useful publications on its website, in both English and Spanish, discussing cancer treatment and oral health; here is one example. M.D.Anderson offers several links on the issue here. Don't overlook this key aspect of your treatment and recovery! Some other suggestions to help you prepare are here. If you can remain active during treatment - and after - this can be very helpful. If you go on working, here are some tips about coping...And while your medical team will be providing the treatment, you will do better if you take a role in that team, ask questions, and if you do not understand something, insist on clarity! Anal cancer is one of the family of "rare cancers;" Cure Magazine discusses various aspects of rare cancer treatment here. If you have concerns, you may want to seek a second opinion.
Your radiation oncologist will arrange a series of planning sessions, or simulations, to target the radiation as precisely as possible, which will lead to some markings on your pelvic area that will be used to line up the machine (later these markings will probably be made into permanent tattoos). Then a small cradle or box will be created to hold your lower torso firmly in place during the radiation sessions. If you have any back problems at all, discuss this with your radiation team while this planning is underway – once the “block” is made, it will be impossible to provide any substantial padding as this affects the angle of the radiation. (In my case the end of my spine, the coccyx, turns outward, and pressure on it is very painful. The process of making the “block” box was very different from the actual radiation sessions (the first step of making the block is lying on some soft stuff that then hardens). Tell your doctor about this, in particular if you have trouble lying flat with your legs straight out. Also discuss with your radiation team the possible use of cream prior to radiation to help with skin problems…new research on this indicates it is does not interfere with the treatment.
You may also want to consult your radiation team if they recommend a full bladder while in the radiation session. Several of my fellow patients were told to do this, to help minimize damage to the bladder; I was not. See the Radiation Oncology Online Journal for information about this and other aspects of preparation for pelvic radiation. Dana Jennings wrote a powerful (and funny) essay about the experience of pelvic radiation (in his case, for prostate cancer, but the experience is the same) here in the New York times. A fellow patient who is also a nurse recommends RadiologyInfo for basic information on radiation treatment and preparation for it.
The standard Nigro chemotherapy will involve two drugs, Mitomycin, and Fluorouracil, known in shorthand as 5-FU (and what a perfect acronym that is). Other drugs, such as Cisplatin, may be used by particular oncologists rather than mitomycin, and use of capecitabine (marketed under various names such as Xeloda) rather than 5-FU has been established. Capecitabine is administered in pill form. Your oncologist should explain any reason for not using this standard chemotherapy group. The Mitomycin is given in one session while you are in the clinic’s infusion room; Fluorouracil is delivered over 96 hours, by some kind of portable pump device. Two of the main delivery means are a peripherally inserted central catheter (PICC) line, or a catheter port. The PICC, or peripherally inserted central catheter, does not require an operating room; it will be inserted in the arm and worked through the veins until it is close to the heart. The port access will probably involve surgery, perhaps general anesthesia; it is usually installed to one side of the chest with a short line to the superior vena cava. This may cause problems with the seatbelt, and you can buy or make a small pillow to keep the belt from pressing on the port. The pump device, encased in something that looks like a shoulder bag, will be attached to one or the other, and you will carry it and sleep with it for the four days of delivery. No showers! Your oncologist will discuss this with you and schedule the installation of the device he or she prefers.
Prior to beginning the chemotherapy blood work will be done to ensure that you can tolerate these drugs, and periodic tests will repeat throughout the period of treatment and for some time afterward.
There are a number of good sites with information on these two drugs. Three I found very helpful on Mitomycin are:
Cancer Research UK Mitomycin C
And on Fluorouracil (5-FU):
and from the Livestrong site. 5-FU can have serious effects on the heart…worth mentioning to your doctors if you have any issues with heart health
The UK Cancer Help site also has a page on how 5-FU and Mitomycin work together:
The Chemocare site has an excellent set of advisories on many aspects of these drugs. Your own clinic will provide you with material – ask if you do not receive information – and perhaps maintain a website as well. See some coping tips from a cancer patient here.
During chemotherapy you will probably be advised by your team to avoid taking supplements, as they may interfere with the effectiveness of the drugs - and you certainly don't want to go through this painful treatment with reduced benefits! Fish oil, for example, has been shown to have adverse effects; see reports here, and here.
Both the radiation and the chemotherapy have side effects, some probable, some rare; some will occur during treatment or immediately after, and others may appear later. See the Side Effects tab for more detailed discussion and references. As you prepare, you may be less anxious if you do not read every possible site about the possible side effects. Each patient has an individual experience with and reaction to the treatment. Many, even most, of the possible side effects may not occur during your treatment. For example, I did not lose my hair – except in the radiation area, not generally visible! You may want to look for help in housekeeping during the treatment; several services that provide free housecleaning services to cancer patients. Financial help may be available. And don't let your distress over the diagnosis become disabling; talk to your medical team about getting help. If you have pets, learn how to protect yourself during and after treatment with this advice from the Centers for Disease Control. Integrative medicine, incorporating nutrition and meditation for example, can help with healing; this EmpowHer site has more details. Another potential aid is oncology massage; check the resources in the article, and ask your medical team if it is possible where you are being treated.
Be prepared for your appointments’ waiting periods, with something to read or listen to in whatever format you prefer, to engage your interest and help keep your mind off the treatment session to come. During the two infusions of Mitomycin you’ll have time to read as well.
Try to establish a good relationship of trust with your oncologist(s). They are part of the key to your success (the other part is you, and your caregiver). Take a list of questions with you to ensure you don’t forget something - and write down the answers that you receive. Because this is a rare cancer, your team may not be absolutely up-to-date; don’t hesitate to ask those questions or tell them about medical information you have discovered. Try these tips for commuicating successfully.
If at all possible, have someone attend the appointments with you, to help take notes and remember what the doctors say. Your mind may be whirling and you will inevitably forget something. If you go by yourself, ask if you may use a recording device of some kind. The KevinMD site has an excellent account of how to make the best of your appointments. Here’s some useful advice about how to best communicate with your doctor about any pain you experience.
Start keeping a journal – emotions, symptoms, and reactions. It will help you as you look back, and you may see patterns in your reactions that will help the doctors decide about medications for side effects and the like. Journaling, or blogging, can be a tool to carry through into successful survivorship. Blogging is increasingly recognized as a goood means of coping. Keeping good medical records can be done online - see, for example, Health Vault. And if you find it helpful, don’t worry about adopting practices that others might find superstitious such as wearing the same socks to the oncology center every time..we all do it!
Consider a meditation or yoga class. And how about a small stuffed animal to accompany you to the radiation table – your personal mascot? Kaiser Permanente provides podcasts to use guided imagery to cope with radiation or chemotherapy. And the website Coping University will provide thirty days of daily tips on coping if you register at the site. Stress can be overwhelming and for cancer patients there are many sources; here are seven tips for coping.
If you have to travel during or just after treatment, here's a review of issues for cancer patients planning to travel by air. Working through the treatment and after can be helpful in maintaining an emotional equilibrium, but you need to be prepared for possible problems (where is the nearest restroom, for example?)
And if you want to work or need to work during treatment, this is a balancing act! I worked - but not full time - and found it helped me keep my mind off what was happening with my rear end. You will need an understanding boss and co-workers!
Review with your team your current status as to vaccinations such as flu, pneumonia, shingles, etc. Most vaccinations will have to be postponed until after cancer treatment, so plan accordingly. And here is an essay about treatment and recovery during a time of great stress, the COVID-19 pandemic.
Things to Have on Hand
A fellow patient provides this list; you'll find other suggestions throughout the site:
• 2 Boxes of latex gloves
• Tons & tons of butt wipes (your clinic or hospital may provide them) – almost like cloth; don't flush, regardless of what the label claims. Get a separate plastic wastebasket with drawstring bags to go inside.
• Cetaphil cleanser
• Cetaphil moisturizing lotion
• Aveno non-scented cleanser – I still use this in the shower for my nether regions.
• Aquaphor – a Vaseline-like moisturizer
• Glutamine (ask your doctor if it’s OK for you to take this.)
• Biotene Mouthwash & toothpaste – Good for dry mouth. No alcohol, enzyme-based so not stingy. I didn’t need it – just used baking soda.
• Burn ointment by prescription from your Dr.
• Cutemol – super hydrating cream for feet, hands. http://www.amazon.com/Cutemol-Emollient-Cream-8-Ounce/dp/B000NSH2L4
• Lysol spray
• Clorox or other sanitizing wipes (pop-up type canister) for bathrooms & kitchen, door handles, and other surfaces that you might touch.
Express Your Feelings!
Keep in mind that the treatment for anal cancer is brutal but short – and the prognosis is better than that of many other cancers.
But: cry or rant if you need to! The cancer blogs are just what you need for that. Here's one post from a fellow patient, Donna, on the BFAC, tweaking a Mary Lambert song to express her struggle, not least the embarrassment (see the next tab):
I've got cancer of the rear
can't hold my poop in there
I'm underweight I'm doomed to fate
I've got too many things to say
I rock bare butt
can't stand up
I ache and maybe throw up
I simply cannot understand why I have a hard time getting around this
I simply cannot eat or drink
My hair is gone I miss it long I hate my wig
It's not my gig.
I know I'm not the only one
Who spent so long attempting to be well again
Well I'm over it.
I don't care if the world knows what my cancer is, cancer is.
I don't care if the world knows what my cancer is, cancer is.
Soooooo WHAT?
I can't think straight, get up late
Sometimes I cry a whole day
I sleep a lot when I'm not on the pot
And never know when it will stop
And I'm hooked up to chemo
I'm scared of the x-ray beam-O
I love my butt and I won't give up
And I hate that I have to fart a lot
I simply cannot eat or drink
My hair is gone I miss it long I hate my wig
It's not my gig.
I know I'm not the only one,
Who spent so long attempting to be well again
Well I'm over it
I don't care if the world knows what my cancer is, cancer is.
SO WHAT???
Playlists for treatment and recovery
The Radiation List:
Ring of Fire: Johnny Cash
Fire, keep me burning: Sly & Robbie
Fire: Arthur Brown
Burn Baby Burn, Disco Inferno: The Tramps
Light My Fire: The Doors
Firestarter: Prodigy
Relight My Fire: Take That
The Recovery List:
I Will Survive: Gloria Gaynor
Tubthumping: Chumbawumba
F-you: Ceelo Green
Won't Back Down: Tom Petty
Survivor: Destiny's Child
Don't Stop Me Now / We are the champions: Queen
Ain't No Mountain High Enough: Aretha Franklin
It's a Beautiful Day: U2
Enjoy Yourself: The Specials
I Can See Clearly Now: Johnny Nash