newly diagnosed squamous cell anal cancer

pacificnw said:

Thank you all!

OMG, you are all awesome. About me, I am a 58 year old retired kindergarten teacher. It's been three weeks and I'm still waiting for the radiation dept to call and set me up with a consult. Unfortunately, for the first time in my life I have unimpressive insurance on a group plan.

The onconogist said there is no "coach" for the team which really bothers me. Actually, I'm not really sure who is supposed to be on this "team". He has been the only person I have been able to talk to besides the doctor that performed my colonoscopy. I just want to get going, as awful as it sounds.

Thank you for your posts about things I can do to prepare. I'd rather be overprepared than under. A little online shopping is always a good way to keep distracted, even if it's for aloe baby wipes I am waking up every night at 3 even on sleeping meds. I just wish I could turn my brain off.

I have a 24 year old daughter, also a teacher, who suffers from anxiety. We are waiting to tell her until we know a timeline. She is my biggest worry and stress. She is teaching full-time, working on her Masters and heading to Europe at Christmas with her boyfriend of 8 years. My stress comes from having to tell her. Her anxiety is going to make this just as awful for her, and I'm afraid she will cancel her  trip. Anyway, I ramble...  I am so thankful that you have each taken time to help me feel connected.

Wow we could be the same person, almost.  We're around the same age, and I was diagnosed October 10 after routine colonoscopy found "mass" which they biopsied.  Apparently I have my gastro doc to thank because it appears some of them see what we have and decide it's hemmorhoids. My husband and I, too, felt scared telling our four adult children about this because their lives are so hectic, crazy, busy and two sons live out of state.  We waited to find out after CT scan that cancer had not spread and told them each individually.  We kept stressing what my wonderful oncologist is so positive about - that after the two chemo rounds, and 30 radiation treatments, my prognosis is excellent.  I cannot complain about our insurance (yet) and medical team here in our small northern Illinois county so far has been so on top of things.  We have a separate Cancer Center building from the hospital that is so calming and serene.  The day after my primary GP called to tell me the news - we met with an oncologist.  He said he is the oncology group's "**** man" because after practicing so many years he had very few anal cancers  - BUT, within the last 2 years, he has 8 new cases.   He said it was rare.  After that things have been moving very swiftly and I had MRI, Echocardiogram, radiation simulation, and port installed.  I am now in Day 6 of treatment. Just had my chemo pump removed yesterday, that was on 96 hours and not so bad since I hit the weekend for most of it.  I am working (right now in fact - but I have a desk job in a law firm and they are being great about me coming in late after 7 am radiation every morning) and intend to try to keep working except for radiation treatments, doctors' appts, lab work, etc.  I am so lucky that all the medical offices are within a 13 mile or so radius.  My main complaints now are nausea but the meds they prescribe are working, and fatigue is setting in.  I am learning so much from all the anal cancer survivors and sharers on this site.  I don't have much to offer yet as far as how things are going to be, or how I will feel, but I know I will be able to find out some answers on this forum.  I hate that this happened, am scared even if cured that something else will come up elsewhere,  but overall I'm trying to be positive, stay busy and learn as much as possible.  My mantra to everyone I know (and some I don't!) -COLONOSCOPY COLONOSCOPY COLONOSCOPY!!! and early vaccination for all boys and girls.  I hope your treatment goes well and I'll be watching for your messages, as, like  I said, it appears we are about the same treatment wise and stage 2.  

Getting plenty of water is important, especially during treatment.  As for diet and nutrition, I tried to eat as healthy as I could in the beginning, but my appetite crashed and towards the end of treatment, not much in the way of food sounded good to me.  I found it difficult to force myself to eat anything, healthy or unhealthy.  My oncologist threatened to put me in the hospital for TPN (Total Parenteral Nutirition) if I lost anymore weight when I hit 92 pounds.  It was really hard to force food down and I found myself eating a lot of those Ramen noodles--not exactly nutritional, but that kept me out of the hospital.  Some days I would think something would taste good and I would attempt to prepare it.  By the time I got it ready to eat, I no longer wanted it.  All this said, some people do not have such appetite issues during treatment.  Protein promotes healing, so eggs, chicken and fish would be good.  Organic fruits and veggies are always the best choice if available.

My radiologist told me to drink protein drinks. Boost is the one I like. My oncologist office had $3.00 coupons and that helped. If you lose your appetite eat whatever you can to keep your strength up. I think taking vitamins will help, but always ask your doctor. 

The time will pass and you'll get to know yourself again. Prayers and I know you will do well. 

I'm glad your first day went well.  It sounds like you are in good hands.  As for when symptoms began, for me, I felt a little nauseous on the 2nd. day, but the anti-nausea meds were very effective.  If that happens to you, take the meds at the first hint of queasiness.  You will get through this, you will!

I recevied extra fluids sometimes when I needed them. Ask your chemo nurses about fluids if it becomes necessary. I loved my nurses. 

You're on your way and we will be here to help. You got this and you will win.

You will find lots of support and good information here from many who are either going through this right now like you, or from those of us who are years out from treatment like myself.  I was diagnosed and treated in 2008, so it's been quite awhile for me!  There are a lot of things I've even forgotten about that time in my life, which to me, is a good thing.  I kept a journal, so my experience is all written down, but I haven't read through it for several years.  You will get through this, then just like me, with it behind you, you will get on with your life.  I wish you all the very best!

mp327 said:

pacificnw

You will find lots of support and good information here from many who are either going through this right now like you, or from those of us who are years out from treatment like myself.  I was diagnosed and treated in 2008, so it's been quite awhile for me!  There are a lot of things I've even forgotten about that time in my life, which to me, is a good thing.  I kept a journal, so my experience is all written down, but I haven't read through it for several years.  You will get through this, then just like me, with it behind you, you will get on with your life.  I wish you all the very best!

Everyone has done a wonderful job describing what is going to happen. I can only add that had hemerroids in addition to some of the other problems.  The hemerroids were the worst thing that happened to me, that along with the diarrhea.  The doctors gave me everything possible to help.  But everything I put on them just burned. Having bowel movements were a major issue because of the pain.  I'm now at the end of my forth week of treatments.  The oncologist and radiologist worked together to make sure I started the same day on both.  This coming Monday, I will start the second week of chemo with the pump.  And the last 2 weeks of radiation.  I've not had any nausea.  My daughter has been helping me from the beginning to make sure I eat properly.  I wouldn't have had she not insisted, because I have not felt hungry at all.  I'm drinking Ensure, and eating whatever she makes for me.  Thankfully, she is a good cook.  I have been blessed to have her help.  I've been eating a lot of Progresso soups and grilled cheese sandwiches.  I'm 71 and have had just about every surgery you can name.  But like everyone here, I'm going to make it through this too.  We all have or are going to.  May God bless each one of you. 

Please call the nurse about your mouth sores.  There is something called "Magic Mouthwash" that can be prescribed for you that may give you more relief.  I think taking the anti-nausea meds from the get-go sounds like a good plan next round, since you seem to be dealing with that this time.  I found them to be quite effective, but I didn't have the serious nausea issues, just queasiness.  Hang in there.  I know it's a bumpy ride, but you'll make it!

I don't post very often, but I like to keep up with how everyone is doing.  pacificnw, you and all here are wonderful to be around.  You ask great questions and someone always has an answer.  One thing I'd like to add is that whenever I felt my mouth getting sore, I used a product called Smart Mouth.  I got mine at the drug store, but I think Wal-mart has it.  It's actually for bad breath, but each time I've used it, it stopped whatever was going on in my mouth, from a sore tongue to bumps on my jaw.  Just a suggestion   

Also, I just started my 2nd round of chemo pump yesterday.  I will get it taken off on Friday morning.  I haven't had any bouts of quesiness and my appetite has been fairly good, except I tend to not eat of a  day because when I eat I have a bowel movement that's a diarrhea. It's painful and I wait till I get back from my daily radiology treatment to eat.  Otherwise, things seem to be progressing well and the doctors have been very liberal with any medication I might need.  I am very excited that next week will be my last week of treatments.  Although I'm going to miss seeing the people I've grown to really like in the waiting area.  I've met some of the nicest people I think there is on this earth   I'll be checking in again to see how everyone is doing.  God bless each one of you and have a wonderful Thanksgiving.  We have so much to be thankful for