newly diagnosed squamous cell anal cancer

Welcome to the site. Mp327 has summed up everything I would have said. Educate yourself on this illness is the best advice. Since it is an uncommon cancer I have found a lot of answers  this online community where so many people can share experiences. The big take home message is that your prognosis is excellent, no spread of the cancer so 90-95 % chance you will do this treatment and the cancer will be gone and never return. Treatment is rough but doable. And shorter than some other cancer treatments. As to being able to work during treatment, I was lucky enough to have a lot of sick leave built up so I did not work during treatment or the two weeks following. My oncologist left it up to me as to if I felt I was up to working and filled out my FMLA paperwork for me.  Good luck in your treatment and I hope you keep us posted and let us know how you are doing.

Hi, and welcome to our family (that we didn't choose to be in but is still one of the best)!! I won't repeat what has already been said, but do know that we all react different to the same treatment. I was dx in 2011 and did not work during treatment. My dx was stage 3b and required surgery to have an ostomy prior to chemo and radiation. The combination as well as overall poor state of health at the time landed me in the hospital and then skilled nursing home temporarily. (Know that this is not the usual and that I'm not trying to scare you, just to present another experience and to encourage you to consider not working if at all possible). Sometimes this is not an option, so if you must, take precautions as your immune system will be low and fatique will be high. (I see you mentioned working with children and maybe staying away...I hope this works for you.

This is a tough course of treatment, but somehow we all seem to push through and you should be confident that you will as well. This site is an amazing source for tips and support from others who have been or are going through this with you.

I will keep you in my thoughts and prayers as you proceed. Please continue to post and know that you are not alone in this.

katheryn

I'm glad you have decided not to work during treatment, especially since you work around children, who, as we know, are little petrie dishes with lots of germs.    The treatment will most likely have an effect on your immune system, making you susceptible to illnesses common among children, such as colds and the flu.  With a compromised immune system, these usually minor illnesses can suddenly turn into something serious, so you've made a good decision.  I was very careful to wash my hands whenever I was in public places, including the hospital and treatment center. 

As for getting prepared for treatment, my oncology practice set up a meeting for me with a nurse prior to treatment to go over lots of information, including common side effects and how to deal with them.  I was also given prescriptions for pain meds.  I would hope that your doctor(s) would do the same for you. 

It's been a long time since I went through treatment, but I'll try to give you a few tips that either helped me or that I've learned from others after I completed my treatment.

Mouth sores are a common side effect.  I had them and they were no fun.  However, many people completely avoid them by swishing several times a day with a mix of salt or baking soda in room temperature water.  If you begin this on day one of treatment, you may minimize them or not have them at all.  Avoiding foods that are hard, crunchy, cold or hot can help make them easier to deal with if you should get them.

Skin irritation of the treatment area is common.  My skin was burned--at least 1st. degree, perhaps 2nd. degree towards the end of treatment.  I was given Aquaphor in the beginning (which can be bought over the counter).  When it was no longer effective, my radiation oncologist prescribed Silver Sulfadiazine Cream, which was somewhat effective.  Some people get relief from Domeboro soaks or Radiaplex gel/cream.  I've also heard that Aloe can be soothing.  I'm sure there are other products out there that other people have used and, hopefully, they will chime in and let you know what worked for them.  Just keep in mind that anything you use on your skin must be completely removed prior to getting a radiaiton treatment, as some products can intensify the burning effect.  I would avoid using toilet paper, as it will be much too harsh on your skin.  Many people get a peri-bottle to clean off with after going to the bathroom.  You might also look into getting a bidet that attaches to your toilet.  I didn't know about any of this, so I ended up having a bucket of water by my toilet and dipping the toilet paper in water before wiping to make it less irritating.  Live and learn!

Nausea affected me in the beginning of both rounds of chemo, but it was effectively controlled with nausea meds given to me by my doctors.  I also carried hard candy and saltine crackers with me, just in case a bout of nausea hit me when I was not at home.

Fever can be a sign of infection.  I was advised to take my temperature on a frequent basis to make sure I was not getting sick from some type of infection.

Diarrhea is a very common side effect.  That was one of my primary side effects, for which I took Immodium.  It was somewhat effective.  However, I wish I asked my doctors for a prescription med, such as Lomotil, which many people find effective.  I used the BRAT diet off and on to help control my diarrhea (Bananas, Rice-white, Applesauce and Toast-white).

Decreased appetite is very common.  My appetite tanked and I got down to 92 pounds, at which time my medical oncologist threatened to admit me to the hospital for IV nutrition.  I really had to force myself to eat.  He told me to eat whatever I could get down, which ended up being foods that were not so healthy, but at least I was eating something, which kept me out of the hospital.  One thing I highly recommend is getting a good source of protein with every meal or snack.  This promotes healing of the damage that treatment can do.

Hair loss can be a side effect for many going through this treatment.  I lost about half of my hair in patches all over my head.  Ask your doctors or nurses about wearing a "cold cap" during chemo.  These are known to help patients avoid hair loss.  Also, wash your hair less frequently.  I was one of those people who washed their hair daily prior to treatment.  I quickly found out when hair loss began that that was not a good idea. 

Fatigue was a huge side effect for me.  Some days I would get up, eat breakfast, then go right back to bed.  I had no energy, which was not typical for me.  If you experience fatigue, rest whenever you feel like it.   Naps became part of my daily routine.  If you can get someone to help you with meals, errands, house cleaning, etc., I would highly recommend it.  I drove myself to treatment most days and, even though it was only a short distance from my house, I would come home completely exhausted.  I remember trying to clean my bathroom one time and having to lie down and rest a couple of times before I could complete the task.  I also found I could not go up my stairs without having to sit down for a rest sometimes.  The bottom line is if your body is telling you to rest, listen to it!

Other side effects can vary from person to person.  I developed a urinary tract infection during treatment, though to be brought on my the radiation.  If you experience ANYTHING that is out of the norm, bring it to the immediate attention of your medical team.  As I stated above, something that seems very minor can develop quickly into something serious when a person's immune system is compromised. 

I hope all of this will be helpful to you and I also hope that others will add to this list.  As I said, it's been quite a few years since I went through treatment, so things don't always come to mind.  The bottom line is you will get through this, just like the rest of us.  Listen to your body, keep your medical team informed about any side effects, and when you are having a bad day, just remember that this is only temporary.  You will get to the finish line before you know it!

Pelvic radiation affects areas below your waist!  You might ask the nurses about dilators to stretch your vagina.  I didn't have a set until after treatment, but a number of women began using them before treatment began and during treatment(if possible); this is important and is something that doctors often fail to mention. 

Several months after treatment I went to a physical therapist who specialized in pelvic floor rehabilitaton; she helped stretch the vaginal area and showed me how to use the dilators.

My chemo was in pill form.  I had one treatment of mitomycin insfusion and then 5FU(xeloda) pills 5 days a week concurrent with radiation.  I had no appetite , ate very little, but only lost about 2-3 pounds.  I did not have mouth sores, nausea or vomiting. I did have  frequency and urgency and great fatique.  I did not lose my hair, but it thinned and a month or two after the end of treatment, it shedd a bit. I sat in a sitz bath or the bath tub which was very soothing .  The nurses gave me aquaphor with lidocaine and domboro soaks

I was working pt-time on weekends and was ok for the first 3 1/2 weeks and then I was just too tired and uncomfortable to do anything except go for my daily radiation.

My team was a medical oncologist, a radiation oncologist and a colorectal surgeon(who did the initial biopsy) and after treatment ended, follows up with dre and anoscopy.

I was assigned an excellent nurse practitioner and I communicated with her(via e-mail) about side effectsand all kinds of questions between appointments.

I made contact with one of the social workers who gave me information about local resources, The American Cancer Society, volunteers who could provide transportation,meals, etc if needed.

I think you will do very well...treatment is only about six weeks.  Perhaps your treatment center has some resources for families(counseling, social workers,etc) even your dr ,who could reassure your daughter that you will be well cared for ; by Christmas you may even be finished active treatment.  My sister was very upset and worried and she was able to have sessions(free) with one of the social workers who does counseling for patients and families; it made a huge difference and allayed a great deal of her worry and anxiety.

I received lots of information and wonderful support from this site and also from Blog for a Cure.

 I agree with what has been shared so far, I was diagnosed 9 yrs. ago, tumor "in situ" but still had to undergo same treatment.  The best advice I received was usually from the Oncology nurses. They were great at answering any question I had and had common sense solutions to treatments.*  I would say the best advice I received once my white cell count dropped was SLEEP! I was a doer and had a hard time letting myself sleep a lot. But that really helped! Dr.'s were very good at making me comfortable,  During treatment it is not necessary to suffer, if you have pain or can't sleep or have mouth sores and Dr. hasn't offered anything, speak up and ask.  There are so many things to help make it through treatment!  Keep a positive attitude and know you too will get through it.  My motto then was, "to get to IT; you have to go through It"  meaning we have to go down a little rough road of treatment for a great result at the end, worth it!  It is a bit of a humiliating cancer to go through ..... keep your sense of humor!

*with one exception, no one talked to me about vaginal dilators and I have no sex life today because of it.  I should have made myself become more informed as I was going through it and didn't. So proud of you for getting ahead of the game. I was too scared to know too much at first, to my own detriment

Pacific NW- I'm so glad you have found this site because you will be more prepared when treatment gets tough. I don't know why your doctors are acting like this is like a walk in the park- it definately is not! It was brutal on me. Others have not gotten as sick but it is rough. I don't want you feeling wimpy if and when it gets that for you. That said, you can do it! All of us have here on this site.

Sparrow- pain is normal for me too. That tissue has been damaged and it heals slowly. Also I found out my rectals muscles were going into spasms so the pain was even worse. Taking a muscle relaxer at night helped a lot.

Mollymaude said:

Pacific NW and sparrow

Pacific NW- I'm so glad you have found this site because you will be more prepared when treatment gets tough. I don't know why your doctors are acting like this is like a walk in the park- it definately is not! It was brutal on me. Others have not gotten as sick but it is rough. I don't want you feeling wimpy if and when it gets that for you. That said, you can do it! All of us have here on this site.

 

Sparrow- pain is normal for me too. That tissue has been damaged and it heals slowly. Also I found out my rectals muscles were going into spasms so the pain was even worse. Taking a muscle relaxer at night helped a lot.

Thank you for responding to me. It's been the hardest thing I've ever been through. I thought it was hard on dialysis. I think because I've been immunosupressed for a long time plus my age, I'm 71, has a lot to do with my slow healing. I'm thrilled and blessed to have found this site. Bless you all and prayers too. 

Mollymaude said:

Sparrow

Im 51 and the healing was slow so I imagine another 20 years and add immunosuppressed and it would be even slower. It does get better with time. I've had a few biopsies since treatment and I would say it took about six weeks to get back to "normal". I still get occasional blood in stool for no apparent reason too- I think that irradiated tissue just stays fragile.

My age and the transplant have to contribute to how I've felt. Maybe I'm rushing my recovery. I have absolutely no energy. I live alone, but my 2 sons live close by and I'm so thankful for them. 

Do you take vitamins? I'm taking Centrum and B12. I'm thinking about adding fish oil to that.

Its a comfort to have this site to come to ask questions and give help.