Just diagnosis with stage 3b anal cancer

First of all, I am so sorry for the position you find yourself in today, but you WILL get throuh this as we all have, and continue to.  Finding this site will prove to be of great help and support.  The doctors generally know there "stuff" and it sounds like you are getting the standard protocal treatment, but they have not walked in our shoes, so please come here for help. 

Your story is very similar to mine, (although I was 52 at time of diagnosis)....and that was three years ago now.  My children (5) were in their 20's but I was helping full time with young grandchildren at the time along with "life" happening!

I was diagnosed with Stage 3b with lymph node involvement and within days, due to tumor size and location had surgery for a colostomy.  I was very low in iron so needed blood along with iron infusions often.  I can relate to everything changing in a matter of days, it happens so fast sometimes.....but be thankful your doctors have a sense of urgency, that often works in your favor.

The chemo/radiation was managable at first, but by week three I was really too weak to drive myself to appointments, though I live in a rural area and the drive is about 1/2 hr. Many areas offer assistance with transportation either through ACS , a local church, or your hospital, and is usually free. It is well worth a check as you could always cancel if not needed.  Everyone tolerates treatment different, and those kids might just be what you need to give you motivation, but know this.....this is a VERY treatable cancer even at this stage.  I'm sure others will testify to that!

Try to eat protien while you have an appetite, as that seems to take a dive for most. The colostomy will take some getting used to and presents additional food concerns at first.  I think I lived on greek yogurt and chocolate milk with occasional tomato soup and toast with cheese. Thats all I could do half way through.

My ostomy was to be reversed after healing from radiation, but, the radiation damage left my sphincter muscle with too much scar tissue and was not an option. Cross that bridge ONLY when/if you get to it.  There are many options involving reversal that may work down the road depending on the type of ostomy. One thing I can say is, if you read others posts who did not go through this with an ostomy, the horrific pain of going to the bathroom is common during burns from radiation and healing......I was spared that discomfort and thankful for that!

I'm sure questions will arise, we are here to help, so ask away.....anything, nothing is off limits. And again, it may not be that your doctors are not hopeful, this is still considered rare and unfortunately they are learning as well. We here are living proof that you can do this!!

A great place for more info. is to register on the NCCN (National Comrehensive Cancer Network). Here you check guidelines for treatment and may feel more reassurance or be able to ask educated questions about your care.

You will be in my thoughts and prayers as you move forward.

Katheryn

Marynb said:

Tbuchi
I am so sorry you have a cancer diagnosis. This cancer is highly curable and the treatment is short and not too bad. I am glad that you are getting help with the children. I was a divorced Mom too, but luckily, my child was 19 and in college when I was diagnosed. The treatment is not debillitating, for the most part. There are some who have a really hard time, but that is the worst case scenario. What you imagine is probably far worse than the actual treatment. I did not have a colostomy, so Katheryn and others can tell you about that. It may not have been necessary to send your kids off to Dad's if you had a little extra help at home. You want to assure them that you are doing what the doctors tell you to get well and that you are believing that you will be well very soon. Prayers going out to you and your children! God, bless you.

You should be fine driving yourself to treatment until the last week. Stock your fridge with foods that you will be able to eat. You may get diarreah, so have plenty of clear fluids and white foods on hand. The foods that I tolerated and with the guidance of cancer nutritionist were: Chicken, white fish,white potato, bagels, english muffin, rice, hummus, string beans, eggs, cinnamon toast, ginger ale, yogurt, peanut butter. No foods with acid, NO VITAMIN C!!!!! No fatty foods, no sugars!!! Most of all, have a bottle of clean spring water in your hands at all times and hydrate!

I never got nausea, never had severe burns, never had to take anything stronger than a tylenol towards the end. You will be well. Stay strong and stay positive

I'm sorry, but I could not have driven myself to treatment after the second week.  I truly hope you have an easier time than I did, but prepare to have assistance just in case you need it!  Hugs and blessings!

So sorry I don't know too much about a colostomy, you may pee in that as well so my advice may be useless.  Also, I did not lose my hair.  It did shed some.  I did not lose my appetite too much except for in the beginning. Maybe this will happen for you too.  One day at a time.

There is a book called "Kicking Cancer In the Butt" about anal cancer that is a good read.  You can get on Amazon.

Blessings my friend

So sorry for your diagnosis.  I finished treatment last March.  I was not staged but told I was T2 or 3, N0, M0.  I had the tumor removed prior to beginning radiation/chemo (5FU & mitomycin).   Everyone reacts differently to this treatment.  The best advice I was given from day 1 was to take one day at a time, don't worry about the what ifs.  I, too, am very independent and do not like asking for help but you will find people truly want to assist you and you may need it.   Here's some general tips:  drink lots of water, eat lots of protien, rest, keep your faith (prayer does work).  As you experience reactions, check this board and ask for advice, I'm sure whatever you experience, someone else has too.  As others have said it is not an easy treatment but it is realatively short and doable.  There are many long term survivors on this board and they are proof that this is not a death sentence.  The doctors have to tell you the "bad" stuff but try not to focus on it  and look for the positive.  Good luck as you begin your treatments.

You will be in my thoughts and prayers!

Tracey

mp327 said:

tbuchi

I am so sorry that you have gotten this diagnosis. It has to be extremely difficult in your situation with 3 young children. However, I want you to know that I have been on this support board and others for over 5 years and have gotten to know lots of 3b survivors of anal cancer. They have beaten this disease and you can too! You are very young, which is unfortunate. But at the same time, you may have an advantage because of your age. The treatment can knock a person down a bit, but if you are in overall good shape when you begin, I think it helps to get through it. I know the thought of getting chemo and radiation is scary--I was terrified--but in my case, once I began treatment, I felt more accepting of my situation, which strengthened my will to fight and get through it. At least I felt then that I was actually doing something to get rid of the disease. I finished treatment in September 2008 and so far, knock on wood, so good. I did not have the added challenge of trying to explain my situation to young children and my heart goes out to you. It may be good that they will be with their father while you go through treatment. Lots of rest will help and that would be hard to do while caring for youngsters. I understand you will be driving yourself to treatment every day. I did that too, but wish I had asked someone to drive me during the last couple of weeks so that I could have properly medicated myself for pain. I would suggest that you find a friend who could be on standby to drive you if and when you are not up to it. I would definitely not advise trying to be a hero and not taking adequate medication. You do not need to suffer any needless pain if you take the medication. I don't know where you live, but in my county, there is a service provided for people who need transportation to and from medical appointments. Perhaps you could check with your local hospital or county services office to see if it's offered where you are. Also, contact the American Cancer Society in your area or just click on the "Rides to Treatment" on this screen in the light blue box. I have to believe there are resources out there to help you.

Staying well-hydrated is VERY important, so carry water with you everywhere you go. Also, I recommended drinking 8 ounces of water after a trip to the bathroom. There's a good chance that you'll have some diarrhea issues with this treatment and diarrhea can dehydrate you quickly, replenishing the fluids you lose is key. If nausea is an issue, your doctors can give you some very effective anti-nausea drugs that when taken at the first onset of queasiness can help tremendously. I also carried with me everywhere some hard candy, such as Jolly Ranchers, and saltine crackers. Also, I found eating plain jello first thing in the morning upon getting out of bed helped a lot. It seemed that I always need to keep something on my stomach and it worked, I never vomited once. Getting protein with every meal or snack is also important because it promotes healing. Begin rinses with water and baking soda or salt immediately to ward off mouth sores. Doing this regularly throughout the day can really help according to those who have done it. I have also heard that chewing on ice chips during chemo can help keep mouth sores away. I don't know if it's true or not, but it can't be harmful, so I would definitely try it.

As for skin care, I was given Aquaphor in the beginning, which you can buy over the counter. As my skin worsened, my radiation onocologist prescribed Silver Sulfadiazine. However, you need to make sure that any creams, ointments or lotions you apply to the treatment area are removed prior to getting radiation treatment. Once finished, you can re-apply. I'm sure that others on this board will have additional recommendations on things that helped with their skin issues.

As for the Vitamin C advice given to you, I would advise against that if your doctors are telling you not to take it. Some supplements can interefere with the chemo drugs, so I would just stay away from it for now.

As for issues concerning the colostomy bag, I am of little help there, as I never had one. However, there are people on this board who do and they will be a great resource for you. Just post questions on here about anything and we will do our best to answer them.

I have a couple of suggestions for websites you can check out.  The first one is www.NCCN.org, which is very informative.  You will need to do a short registration, but once completed, you'll have access to a lot of information about anal cancer and current treatment protocol.  The other website, which was put up by an anal cancer friend of mine is www.analcancerhelp.info.  She compiled lots of information taken from other survivors, such as myself, and put it all on her website.

I went through treatment without the benefit of a support board like this one and I know my experience could have been less traumatic and less painful if I had only had the advice and suggestions from others who had actually been through it. The doctors and nurses can give some good advice, but there's nothing like that of someone who's actually experienced this first-hand. The good news is that we are all here for you, and many, if not all, of us are thriving and living pretty normal lives now. You can do this, you will do this. Take it one day at a time and you'll get through it. We are here to help you in whatever way we can. I wish you all the best and will be thinking of you tomorrow.

So sorry for your dx.  I am sure you will beat this.  Surgical removal and the tx follow up is more than what most us us have had and we are all still here!

I wanted to bring up a few things that the others haven't addressed because you are fairly young.  The treatment will put you into menopause.  If there is any chance that you want more children, you should have your eggs frozen.

It will effect your sexual function.  There are precautions that can be taken to minimize this damage that you need to discuss with your doctor.  Keeping your bladder full during radiaction can help.  

You can discuss having a tampon/dialator inserted during tx.  

These important issues need to be addressed before the planning for the radiation.

After transaction make sure youacquire a set of dialators and start usingthem as soon as you are able.

I agree with Martha that it seemed really scary before I started Tx but once I started I felt like a warrior.    The first three weeks are not bad for most of us! The last two weeks and the last 3ttreatments are the hardest.  Recovery is not easy either.  Just put one foot in front of the other and pray for each day to end until you start to feel better.  There is an end!

i am so glad you found us!

I was diagnosed 8/10/11 with mets to the liver.  Treatment was very painful for me towards the end from severe radiation burns.  I drove myself to radiation but a week after finishing treatments I was too weak and burnt to even sit.  My doctor told me as well that anal cancer was a good one to have because it is highly treatable.  God WILL get you through this.  I am raising my grandchildren, ages 8 & 10.  During treatment I just told them I was sick and I was gonna be fine but it would take a little while.  The girls accepted that.    I also had my husband doing everything for me.  It would have been difficult if I had to cook for them, run them to school etc.  Let friends help, they reall want to and you will make them feel good.  I have been NED since treatment.  I feel good, live on a  tree farm with horses, chickens, etc.  I have adopted my granddaughters and am raising them alone, my husband passed away shortly after I finished treatment.  I do volunteer work.  I am grateful.  I feel my ordeal has made me a much better person. 

My diagnosis was in July of 2013.  My cancer was stage 3 because the tumor was so large. I was in a clinical trial called TIP which greatly reduced the size of my tumor and pleased my medical and radiation oncologists. You might read up on it or ask your doctor about whether it would be good for you.  It was done for 3 days during 2 different weeks inpatient and I tolerated it better than I did the mitomycin and 5FU. After the TIP protocol, I moved on to mitomycin and 5FU and radiation for 6 weeks. Everyone is different, but the chemo was worse for me than the radiation, especially the mitomycin.  Not that the radiation wasn't bad, but those side effects allowed me to be more mobile. I am 63 years old and was able to drive myself to my radiation treatments each day. I think it all depends on how the radiation and chemo affects you personally.  You may find the chemo is easier than the radiation.

I'd say the best thing you can do to get through this is keep a very positive attitude and let people help you.  I am very independent, too, and I find it hard to let others do for me, but I needed people and when they offered to help, I let them. It made them feel good and helpful and useful, and it helped me a lot. I was so weak at times that I could not fix food for myself.  Friends brought me food or sent money to a friend who made and delivered meals to me. That was a tremendous help. Try not to be stressed out and laugh as much as you can. I think my attitude and writing my blog helped me immensely. If you'd like to read it, it's http://realnittygrittyprettyboyrhoid.blogspot.com. It tells about my diagnosis, tests, chemo and radiation along with lots of other things that happened. 

I wish you a smooth course and total healing and a reunion with your sons as soon as possible.  Take care or yourself!

lizdeli said:

Stage 111 Survivor here

I was stage 3a with lymph node and suspected vaginal invasion. Treated very aggressively. It was not easy but I just returned from my check up and I am 4 1/2 years post treatment With no sign of disease. It can be done as you will see from this board. Fight hard. You will be inspiring others to do so before you know it. 

Wishing you hope, strength and healing. 

Liz

Woohoo!  I am so happy to hear that your check-up went well and that you got all good news!  Yay NED!  That is such awesome news.  You are proof positive that no one should ever count themselves out when diagnosed.  Stay well, my friend, and let us know when the 5-year party is planned!

lizdeli said:

Thanks Martha!

It is a good feeling and always humbling to be back at MDA.  I was in Atlanta recently on business and considered calling you. But it was during the first ice storm and we were stranded in our hotel. What a fiasco!  hope to meet you in person soon though!

Liz

Congratulations Liz on being NED. I too was stage 3a, & you have become my inspiration. However, I have been inspired by so many others here for so many different reasons. It would be amazing if one day we could have a 'in the flesh'  meet up. 

I guess that is unlikely, but this is one heck of a team!

Wishing everyone good health

Liz