Preparing for Treatment and Followup

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.  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. 

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. 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.

 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.

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.

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 but most of us will not have any experience with them.  A clinical trial in the UK determined that use of Cisplatin did not improve outcome, and the standard should remain Mitomycin and 5-FU.  Your oncologist will explain any reason for changing from the standard chemotherapy. 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.   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:

Medline Plus: Mitomycin

Chemocare: Mitomycin

Cancer Help UK: Mitomycin-C 

From the same three sources, on Fluorouracil:

Medline Plus: Fluorouracil

Chemocare: Fluorouracil

Cancer Help UK: Fluorouracil

and from the Livestrong site

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.   The M.D.Anderson Cancer Center has tips on getting through treatment 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.   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 from pet-related infections 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.

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.  The M.D. Anderson Network blog offers advice on how to best prepare for and get through your treatment.

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.

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.  Keeping good medical records can be done online - see, for example, Health Vault.

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.

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 following 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???





© H. M. Carter-Tripp 2012