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Just Diagnosed & Preparing to Start Treatment

Diane H.
Posts: 4
Joined: Jul 2011

Good Morning! I've done a lot of reading on this board and thought I'd reach out for some advice. I went for a routine colonoscopy a couple of weeks ago (just turned 50!), and doc found a cancerous polyp. I was sent to a surgeon and had the area excised, with the expectation that would remove surrounding tissue and everything would be OK. It didn't turn out that way - I have an invasive tumor in my colon. My PET is scheduled for day after tomorrow, chemo (mitoycin & 5FU weeks 1 and 6) and radiation for six weeks. I'm in a it of whirlwind - a lot happening so fast! I am looking for some guidance in preparing for what's to come. I have a 12-year old daughter, and am separated from my husband who is battling liver cancer. How much help am I going to need as I go through the upcoming 6 weeks, plus recovery time? How well will I be able to function? Is it likely I will be able to drive myself to and from radiation every day? I want to be able to get neceesary supplies together and have what I need...any suggestions? My daughter is an amazing kid, and is ready to help in any way she can, but I'm wondering what to tell her to prepare for. I appreciate any advice you can offer. I'm a person who wants all the information possible, so I'm grateful for this resource.

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

I'm sorry your circumstances have brought you here. I'm sure you are very anxious about starting treatment, but there are so many of us who have been through this and come through it okay--so will you! You've asked for advice, so I have copied information that I posted awhile back to Ron, whose wife was recently diagnosed. You can read through what I said to him. There are also a couple of websites you should visit for some very complete information: analcancerfoundation.org and the website for the National Comprehensive Cancer Network NCCN.org. You will have to register on the second site, but it's simple, and will allow you to access the very latest guidelines for treatment of anal cancer. I hope this helps!

I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. The following side effects are ones I experienced. Not everyone experiences all or some of these.

1) Fatigue--When your body tells you it needs rest or a nap, you need to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause serious digestive problems. Whatever you feel like eating and agrees with you, that's what you should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that you routinely rinse with a solution of water and salt or baking soda several times a day. If you get mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If you experience hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, you have already been given some soothing creams to use to keep skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. You can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. You just need to make sure that there are NO traces of any creams, lotions or ointments on your skin prior to radiation. I would also recommend getting some men's boxer shorts to wear to reduce contact with the skin. You may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime you has a BM or urinate, your body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that you won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, you've probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get a spray bottle to keep filled with water by the toilet. When you urinate, you can spray the genital area with water and keep the urine from burning your skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes. Again, you need to take in plenty of fluids, as this will help dilute your urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects."

As for functioning during your treatment, the first 3 weeks or so you may feel tired and have a little nausea, but should be able to manage your daily activities. However, when the radiation begins to really kick in, you may need to be on pain medication, which will mean you can not drive. Therefore, you need to arrange for transportation ahead of time. I drove myself every day, so I didn't take enough pain medication and suffered for it. Please don't do that! Also, if you get offers for meals, by all means take them, especially since you have a child. Your appetite may tank, but her's won't!

I hope your PET scan shows that your tumor is localized--please let us know when you get your results and have a start date for treatment. You are among friends here and we will help you get through this. I wish you all the best.

z's picture
z
Posts: 1267
Joined: May 2009

Hello and sorry you had to find us. Martha covered a lot, and I would like to add that I drove myself to and from tx. I was fortunate that I didn't have to work.

The more I think about it the more I think although hpv is a known cause of anal cancer, I think the stress in our lives triggers this too. I turned 50 and was diagnosed with anal cancer 2 months later and had a very stressful prior 2 years. From what you have written you have had a great deal of stress also.

The 1st thing my general surgeon told me before performing the biopsy and colonoscopy was that this is a curable cancer. I see where the polyop was in the colon. Can you tell us if this was in the anal canal? The anal canal is about 4 inches long and is separated by the dente line which above that is the rectum.

I wish you well and keep us posted. Lori

Diane H.
Posts: 4
Joined: Jul 2011

Thanks Lori. Yes, it turns out it is in the anal canal. I think you must be right - the last two years have been more stress than I would have thought possible (until I found out about this!). I have been told that it is curable, with a low reoccurrence rate. My primary concern is how much help I might need as I go through treatment and recovery. I really want to do this on my own as much as possible, and I'm trying to be prepared. I also want to set realistic expectations for my 12 year old, so she can have some idea of what to expect. Thanks.

alis7910
Posts: 80
Joined: Jun 2010

Hi Diane:
You have gotten some great advice! I would say that we are all different in terms of what works, and you won't know that until you are on the journey.Be open to receiving whatever people offer, even if you want to feel self-sufficient. I had friends who took me shopping and friends who drove me to my radiation treatments.Every day will be different; your needs will change.Desitin ointment helped as well as Lidacaine ointment, which numbs the area. You do need a prescription for that. Those things helped me more than the pain pills ever did. I also had accupunture every two weeks to balance out the body, mind and spirit.Stay in touch and let us know what you need.
love
alison

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

sorry you have to be here remember everyone has different stories BUT: I stayed with a friend the first 5 days of tx and the drive back and forth to MDA(30 minutes-1 1/2 hours each way) just about killed me. i was ok the first 3 days and then sick and tired and sore and a million mouth sores. my hubby is a dentist and said he had NEVER seen so many and so large. (Caphasol was the only thing that worked for me) so i went and got a hotel closer to MDAnderson. i stayed by myself from Monday afternoon until saturday 12noon when my husband would drive in from louisiana. DO NOT DO THIS. by myself, i would be so tired that i could barely take meds correctly or read about what i needed to do. he would bring me food supplies to put in a little refrig. but during my 3rd week it was really hard for me to function. i needed help more than i thought that i would. i started not being able to think very well. i could make it to the appts but needed help with meds and figuring things out. my mind was getting goofy and i was tired and sick and sore. so it would be better if you had someone there to help you go to bath room, cleaning up, medicine, and the chemo pack might start beeping and you need to fix that. someone to remind you that you need to take a pill or drink more water or etc. be sure to get a small fan to air your bottom out. i still had to be put in hospital for 10 days after tx was over but i made it thru it all and you will to. sephie

monty gizmo
Posts: 12
Joined: Jul 2011

I'm so grateful for all the advise. I'll be starting Chemo/Rad in a
week. Getting the Pet and MRI now. I don't think its really sunk in
yet. I have to make a choice on pick or port. Do you have any information?
Thanks

foy
Posts: 2
Joined: Jul 2011

I did the port. Go with this because it dumps the chemo into a large artery.. If not it will be dumped into small veins which will be damaged/burned by the chemo

Angela_K
Posts: 374
Joined: Jan 2011

Diane ~

I'm so sorry that you're going through this. It seems that the first few days and weeks following the initial diagnosis is the worst because your life is turned upside down and you're just trying to get your mind wrapped around everything.

Everyone offers their well intended advice, including myself. But everyone's experience is different. What works for some may not work for you. I ate super clean through the entire treatment. There are books I can refer to you regarding nutrition during treatment if you would like.

I felt pretty good during the whole thing. I had to stay close to a bathroom because of the all the sitz baths and some urgency issues but I either walked or drove myself to treatment each morning. I cooked all of my food, but I was also 200 mi away from my family.

I think my biggest surprise was that the burning reached it's peak one week AFTER treatment ended. The last week and then the week after were the most difficult for me and I was a little drowsy from the pain meds.

Let friends and family do the cooking and cleaning for you if you can. Take care of yourself ~ mind, body and spirit. All three are so important.

Your daughter will be a big helper by just giving you hugs and being near. Know that we are here for you to lend support in any way you need it.

Take one day at a time.

Bright blessings to you!
Angela

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

My radiologist explained this to me yesterday. That after all the radiated tissues "slough" off it takes about two weeks to heal. So yes, that area is raw for a long time and this would include after treatment. I am glad this was explained to me as it helps my husband and I to prepare.

I have a very hard time asking for help. The first time I had cancer (cervical) I was 3000 miles from home, 26 years old, a single mom and didn't tell very many people. I had a hysterectomy and tried to keep it secret from my sister when she showed up for a visit from South Carolina. What was I thinking? I ran her around Seattle and wasn't even supposed to be driving. Of course I was so pale and thin, she guessed I was really sick.

There are people who will help you, though. Your daughters friends at school have families who will help you. My daughter stayed with her girl friend's family a great deal while I was getting better from cervical cancer. (She was 6). I am just asking drivers to be alternates on days if I can't make it myself. You probably can drive yourself like Angela but it's wonderful to know there is a back up plan. I also have "chemo brain" and am on pain meds so I drive as little as I can get away with but sometimes I just have to get behind the wheel alone.

Just curious? Were you experiencing leg and back spasms prior to being diagnosed? I was becoming disabled. I have experienced relief from the treatments and meds for the first time in years. I can't believe how I lived. I wish for you the same thing.

You are in my heart and prayers.

Angela_K
Posts: 374
Joined: Jan 2011

:) I might mention that I'm not super woman. The clinic was across the highway from my hotel . . .a quarter mile at the most. Driving would take 3 minutes tops and required very little thought. :)

I also will say that as quickly as the pain peaked the sixth day after treatment, it was over. I was completely off pain meds and feeling VERY little discomfort by the 9th day. Experienced little rawness at that point. But again. . .every one is different.

Love to all,
Angela

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

My husband is driving me to treatments for this cancer (the 21st century one) which are 30 minutes up road. Now and then, when I feel wide awake I take the car a few blocks up the road to the church. If he gets a job then I will have to find other ways of getting there. He really would rather work than take me to the hospital and I could always pay a driver. Some communities have volunteers but I don't know much about that yet.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Diane, I, too am sorry that your circumstances have brought you here.. But, you are in good company. Martha posted a good list of what to expect. Remember that we all experience different things, and we react differently to the treatments. First and foremost though, keep a good attitude... as hard as that may sound... Try to laugh - A LOT. Ask your dr questions, none of them are too silly or insignificant.. Get answers - don't leave the office without answers. I asked what the plan was, and then I asked what the back-up plan was, then a back-up plan after that. I also asked how they would know if plan A wasn't working, and when would it be time for plan B or C or whatever. I also wanted to know how I would be able to tell if plan A was working, etc. My first onc was not that forth-coming, so I got a second opinion and a different oncologist with a better bedside manner and who would answer my questions. It is very important to feel comfortable with your doctor. Trust me, it makes a world of difference. About your daughter... I am sorry that she has to deal with all of this, too. Seek out your friends and her friends' families to help you. Also, seek out her gudance counselor from school - he/she may be able to give her some comfort in dealing with all of this.
Health issues is the one thing where I tell everyone and everything I can about the cancer and the treatments. Cancer doesn't discriminate, so everyone should be aware. Explain to people what you are going through and be humble to accept help. I made a list of houehold chores, etc; so that when people said "Call me if you need anything", I showed them the list and got them to volunteer their help. You are going to need plenty of rest. Even if you get a burst of energy.. don't overdo it.. you will be more tired the next day. The treatments don't make you tired as when you didn't get enough sleep; they drain you... sometimes so much so that you don't have the energy to think.
Most important... keep up with your nutrition and don't get dehydrated. Take Carnation instant breakfast, ensure, boost, ice cream, etc. Drink lots of water. I got cravings... eat whatever you want, don't worry about the "healthy diet" as long as you are getting nutrition. If you drink juice, dilute it because, too much can cause you diarhea, which causes dehydration.
As for driving, I let my hubby drive me once I started treatments. I stopped work that day, too. My job required lots of driving, etc, so, it was best to stop. Take the pain meds as soon as you feel you need them... and don't worry about addiction... they don't work that way in this case. If you are on pain meds though, please don't drive... it is definitely not safe.
As for recovery time, we are all different... I am still not working after completing my treatments in March 2010. The radiation can cause stiffness, neuropathy, loss of balance, bathroom urgency, weight loss, hair loss, etc. As you read through these posts you can get a general idea of what is common to us all.
I wish you well. I hope your tests and treatments go easy for you. Please keep us posted. We are all here for you and we are all praying for you. My heart and prayers go out to your daughter. I hope for her sake as well that you have an easy time of this. We all get through it. It may be a tough road. But you will get through. Come in and vent... we all do, and we learn from each other.
Keep the faith. Laugh. God bless.

Dog Girl
Posts: 100
Joined: Sep 2010

You've read it several times by now, each person's experience is different. However keep checking in to see what advice might work for you. I wish this board had been up when I went through treatment in '09. I am single, but I had a wonderful support group that was there if I needed them. You may find that you need more help (meals/company/outings) for your daughter than you do for yourself the first few weeks. People will want to help, so take them up on it. My appetite didn't start to go until a few weeks in and then I wanted white cold food such as cottage cheese, yogurt, and milkshakes. Eat what you want, but I would suggest staying away from spicy food. I was able to drive myself to radiation treatments most days (it was close by), but I did have friends take me in for the first day of chemo each of the two sessions. I found a backpack type of purse worked well for the 5FU pump. I actually worked the first week of treatment and that was the easiest way to transport it. I could also put it on a stool outside of my shower stall when I took a shower. I personally loved and still love Aquaphor. About $15 for the big jar at Walmart/Target. I still keep the small tube in my purse at all times along with the travel size baby wipes. I found that I still had/have to rinse out the unscented baby wipes as they were/are too harsh for me. Learn to pee in the shower. I'm normally a PJ kind of girl, but I switched to gowns and went comando. I just put down white towels where ever I would sit (pull up the gown so your bottom is on the towell and not on your gown) because they were easy to wash/bleach. I didn't stray too far from the bathroom and I still locate the bathroom the first thing whenever I am in a new store/retaurant, etc.. and I am two years post treatment. Talk to your doctor and nurses as you go along and tell them what you are experiencing. Call in if necessary; don't wait until your weekly appointment to ask something. You have to be your own best advocate. The course of treatment is standard. It is the response to the side effects that really affects your quality of life as you are going through treatment and afterwards. Ask about dialators. From the posts it seems that not all doctors will recommend them. Go into rad treatments with a full bladder. I had to stay on round the clock morphine (pill form) for about 10 days, so I was kind of out of it then. I had family and friends stay with me then. I had to post a sheet of paper on my fridge to keep track of when I had taken my pain meds as I became quite fuzzy. Believe it or not, I made lots of jokes about anal cancer, but of course that is my personality and sometimes you laugh to keep from crying. (Crying is OK too though.) I told my rad dr. that this was my Cancer Boot Camp; it was going to be an intense and rough few weeks, but I was going to get through it and come out stronger on the other side and I did and you will too. Good Luck and prayers coming your way.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Hi Dog girl

Nice to hear from you and congratulations on two years post.

I hope to be able to organize my thoughts for posts like this one at some point. Reading it now, what I wrote was so lame. (Maybe I feel guilty since my husband drives me now). But hopefully I will learn over time how to respond to newcomers. It's weird knowing that I feel like a bit of an old timer now, two weeks into treatment. But when we get new people on board I want to be there for them too.

monty gizmo
Posts: 12
Joined: Jul 2011

When I read you had a 12 year old daughter, I felt compeled to write. All of us have
to decide what and who to tell in our lives. My daughter is 43 and my son is 41 I have
3 grandchildren under 12. Of course my own are aware and have been great. My oldest
granddaughter is 12 and I don't think at this point I will tell her. They live in another
state. Of course your daughter is right their with you. If you don't tell her she will
worry, but if you decide to it's important to be positive. Easy to say hard to do.
Good luck.

foy
Posts: 2
Joined: Jul 2011

I've done this. I would say I could not have done it by myself. You will need help. If you lived by me I would be there for you . I would first just eat eat eat. Eat while you wait for your treatment to start. You need somebody who will come cook for you during treatment . You will need rest. It will make you feel 90 yrs old. Eat now so you can gain some pounds. You will loose it. I can give you my phone number if you need to talk. 512 470 0716 It would be easier. I had stage 3n1 anal cancer. My last treatment was 8/10/2010 I drove the first four weeks myself. Hour each way.. After that I had to lay on my side in the back seat. Don't use wet wipes use cheap toilet paper with a slpash of cold water and pat.. I reget I did not have sex a final time before my treatment. So consider doing that! I worked half a day and did treatment then went home to eat and sleep. You will need time because everything takes longer to do. And you will not be able to do it alone. You will not have time to go to the store. The pain is there with this.. But I did it! I'm here to help you. I have the answers you might not want to ask the doc.. I went through it it was tuff.. NEVER EVER GIVE UP!! Because you will BEAT THIS!! I know you will because I beat mine :) just call me I would like very much to help put you mind at rest. Its a shock when a doctor tells you the news.. Just tell yourself remission is my mission please call so I can help you. I'm deeply sorry for your diagnoses

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