Staging

Cheyenne said:

Agreed!
I agree I just don't feel like I have the time to shop around. I already fired my first oncologist because he didn't give me any feeling of confidence at all. I will start my treatments on Monday and see the radiation oncologist on Tuesday with my list of questions. Hopefully he will be more helpful than the nurse at the desk. I won't see the medical oncologist until Friday when the picc line is taken out and my blood is checked, but I will have my questions for him as well. I did look up the medical oncologist online on one of those "rate your doctor" sites. He got high praise for everything except one category: communication. Now I understand why! Although to his credit, he gave me his cell phone number with permission to call anytime. I just have trouble with that at the moment. I don't want to "bother" him at home.

You May Be Like Me
I felt the same as you before my treatments actually started. I am somewhat of a "control freak". This is one time I was not in control. I had to trust my doctors. I remember speaking with my primary care physician before treatment. He recommended my colo rectal surgeon. I told him I was not comfortable with him. He was more than willing to refer me to someone else. Right then I realized it not the doctors it was me not being in control. I went with the original colo rectal surgeon and 3 years 3 months later I am still seeing him. He turned out to be one of the colo rectal surgeons I could have. It sounds like you may need to have more discussions with your doctors rather than nurses or receptionists. You may also be having pre treatment anxiety which is what I had. I remember prior to treatment I hardly got any sleep for 2 weeks. Once the treatments started my anxiety level went way down.

Hope this helps some.
Mike

Cheyenne said:

Having lots of trouble
I appreciate your explanation. I was trying so hard to be cheerful and strong but it's getting harder as the day approaches. Part of my problem is being left totally in the dark in terms of what to expect. Most of the information I have has come from the messages on this board and even that is tough to wade through because so many people have different aspects to their situations and treatment. I begin treatments on Monday and just found out Thursday that the 5-FU is given continuously over a 96 hour period and that's only because I called the office to find out what was going on. They didn't even have me scheduled correctly and didn't even seem to know that I was starting on Monday even though the receptionist in the office had given me an appointment. (When I told the nurse which office I was scheduled to she said, "He's not even in that office on Mondays".) I asked about the picc line and they had to scramble for that as well. I only know from this board that there must be some kind of bag and tubing that I will have to deal with as the oncologist has told me nothing about it.

The radiation oncologist has me scheduled to meet with the doctor for 15 minutes after treatment every Tuesday. So on the schedule I was given (right before I walked out of the hospital so I didn't read it until I got home)it has the meeting with the doctor scheduled for 12:15 and my treatment scheduled for 2:45???? I wish I felt more confident going into this process but the more I try to find out what to do to prepare and what to expect, the more in a fog I feel.

Oh, and yesterday I tried Ensure just to see how it would taste so I can prepare to keep my nutrition up and it gave me HORRIBLE diarrhea. So when I was with the nurses yesterday getting the positioning scan and initial x-ray, I asked about what I could use instead and the nurse who should know acted like I was a child asking a ridiculous question. She had no suggestions other than "You can try carnation instant breakfast." When I asked about using Aquaphor or if there is anything else I can use to help my skin (because I had been told not to use anything unless the radiation oncologist approved) she said, "That won't help. There's nothing you can use that will help your skin."

So rather than going in with a fighting spirit, I'm now discouraged and feeling very little confidence in those who are supposed to be caring for me.

Sorry for being a "Debbie Downer". I wish I could get my optimism back.

Hi Cheyenne
Is yours a big hospital? Mine is/was and I found a lot of things (like scheduling) that made me rather nervous. Everything was okay though - I just had to be patient (which I wasn't sometimes - oh well), ask questions, and get used to their ways. I didn't know a whole lot of what to expect prior to treatment either. Very scary. My radiation oncologist wasn't too much help all during the six weeks but the radiation nurses were great. Even they, though, didn't tell me much but I don't think I really knew what to ask. I learned more as events happened - I knew the basics but had to wait till an event occurred (like the chemo bag) to really know what was going on. I remember asking about Radiagel, because I had read it would help ease the burns, but no one at the hospital had ever heard of it. Since then I've found out it's available in drug stores, haha.

The oncology nurse was the one who administered my chemo - maybe that's why him 'not being in the office on Monday's' isn't important? Not sure about that - you'd think even if the nurse is the one to administer the chemo that the doctor should be in the building anyway. I was lucky to have wonderful oncology nurses - they answered everything they could and were very supportive and kind.

Meeting with the radiation oncologist prior to treatment should be okay - you'll still be able to ask him any questions you have even if it's prior to treatment that day. It's good that you're seeing him every week, and if you need to see him more often don't be worried about asking.

The Ensure - yeah, I didn't like it - or Boost. I tried to drink it but it made me feel kind of nauseous. The Carnation Instant Breakfast is much tastier. If the milk gives you a problem, you can put the Carnation in warm water and it will dissolve nicely. Doesn't taste quite as good as with the milk and there won't be quite as many vitamins but it's do-able. Also, there's a great protein drink called 'Resource' you can get at the drug store - you might have to have them order it but it's worth waiting for (mine came in the day after I ordered it). Comes in various flavors (I liked the berry) and is really quite good with lots of protein. My oncologist recommended milk shakes, ice cream, and anything else I could eat (I liked peanut butter and crackers).

As to your first question, about the treatment - I thought along the same lines. I was stage 2, no node involvement and was told first thing that this was a very cureable cancer. The treatment though, six weeks of radiation and two rounds of chemo, seemed to me to be like a hammer hitting an ant. But they said it's what was needed to be done to kill all the bad cells. It wasn't fun and I truly sympathize with you and understand your concerns and anxiety - truly. I got through it though and am now over 3 1/2 years out from treatment and cancer free. You will be too. It's a rough couple of months and some time after before you'll feel your strength return. Eat well, drink plenty of fluids, rest a lot, take time for yourself, ask for help when you need to....this is a time in your life when your needs have to come first.

I almost walked out of the hospital the day of my first meeting with my radiation oncologist - but when I met my medical oncologist my confidence returned. The radiation guy did his job, and did it well, and that's what counted. The oncology nurses and my medical oncologist were fantastic. You'll probably feel more confident as time goes by - this is all so strange and weird and new but after a couple of weeks of getting used to the routine, I hope you are feeling more confident.

sandysp said:

fighting spirit
Personally I think you do have a fighting spirit. You are on line here talking with us. Good for you.

At Memorial Sloan Kettering no one missed a beat in my total care. They were fabulous, and I am and certainly was hyper, hyper sensitive. I want for you this kind of care.

It is true that my Oncologist did not administer chemo, the nurse did, but what it sounds like to me is that your caregivers are not being sensitive or understanding, or even seem knowledgeable enough to answer your questions properly.

I had terrible advice and when I first was diagnosed. Two doctors told me I needed to have surgery right away so you can imagine how grateful I was to have found this site and to have navigated myself to the right cancer treatment doctors and hospital. It takes a lot of trust to give yourself over to people for treatment. It doesn't sound like to me your caregivers are earning that trust so far.

That being said, others here like Rose found everything to be alright later and I am grateful for these posts. But if you can even travel to a better place, I would encourage you to do that. You have some time. There is no need to rush if your intuition tells you this is not the right circumstance. I support you as we all will in whatever you decide to do.

Just wanted to say that I
Just wanted to say that I agree with Sandy - if you really feel uncomfortable, you have time to find a new place, a new team. It's a difficult decision, but one that in the end will be in your best interest.

Staging
Cheyenne,

I'm sorry you've had issues before you start treatment. This board wasn't up when I went through tx in 2009 (coming up on 3 yrs post tx and NED), but I had a good team of doctors and nurses and techs. I was able to meet with the NP at my med onc. office to get the lay of the land, but some of it you just learn as you go through it.

I would be surprised if they didn't push steroids and anit nauseau meds before the chemo. Make sure you get a script for anti nausea pills before you leave the first day if you don't already have them. Some more pratical tips: I had a port, but I was still hooked up for the 5 days. I found that if I put a stool next to the shower and put my pump on it and kept my back to the shower head I had pretty good flexability. You will definitely want to have a hand held shower nozzle with as long of a tube as you can get. My pump was too large for a fanny pack, so I used a backpack type of purse. Try to go into rad tx with a full bladder. This will help lift it up out of the rad. field. Make sure you have no creams, lotions, anything on your genital/bottom parts when going into rad. as they can exacerbate burns. Once you skin starts to react to the tx (2-3 weeks in probably), just take your creams, etc... with you and put it on in the bathroom right after you finsh your tx for that day. And if you've had a full bladder, you'll probably need to pee anyway! The tx is very standard as you've probably determined by now. However where I think the drs & nurses, et all can be very helpful is managing your side effects. Everyone is different. Just remember that hardly anyone has not side effects; hardly anyone has all the possible side effects; and most of us had some of the side effects to varying degrees. I really didn't know a whole lot going into tx either, but I figured all these people had gone to many years of school/training for this, so I had some trust in their ability. However I am not shy about asking questions and you don't be either. If you are having an issue be sure and call in to the drs office (you'll probably have to leave a message for the nurse) and don't wait until your next scheduled appt. This site will "hold your hand" and we will tell you what has and hasn't worked for us. You'll probably learn something that will help you. Our unofficial motto on this board is "Weeks for years." so try to keep that in mind.

Cheyenne said:

Having lots of trouble
I appreciate your explanation. I was trying so hard to be cheerful and strong but it's getting harder as the day approaches. Part of my problem is being left totally in the dark in terms of what to expect. Most of the information I have has come from the messages on this board and even that is tough to wade through because so many people have different aspects to their situations and treatment. I begin treatments on Monday and just found out Thursday that the 5-FU is given continuously over a 96 hour period and that's only because I called the office to find out what was going on. They didn't even have me scheduled correctly and didn't even seem to know that I was starting on Monday even though the receptionist in the office had given me an appointment. (When I told the nurse which office I was scheduled to she said, "He's not even in that office on Mondays".) I asked about the picc line and they had to scramble for that as well. I only know from this board that there must be some kind of bag and tubing that I will have to deal with as the oncologist has told me nothing about it.

The radiation oncologist has me scheduled to meet with the doctor for 15 minutes after treatment every Tuesday. So on the schedule I was given (right before I walked out of the hospital so I didn't read it until I got home)it has the meeting with the doctor scheduled for 12:15 and my treatment scheduled for 2:45???? I wish I felt more confident going into this process but the more I try to find out what to do to prepare and what to expect, the more in a fog I feel.

Oh, and yesterday I tried Ensure just to see how it would taste so I can prepare to keep my nutrition up and it gave me HORRIBLE diarrhea. So when I was with the nurses yesterday getting the positioning scan and initial x-ray, I asked about what I could use instead and the nurse who should know acted like I was a child asking a ridiculous question. She had no suggestions other than "You can try carnation instant breakfast." When I asked about using Aquaphor or if there is anything else I can use to help my skin (because I had been told not to use anything unless the radiation oncologist approved) she said, "That won't help. There's nothing you can use that will help your skin."

So rather than going in with a fighting spirit, I'm now discouraged and feeling very little confidence in those who are supposed to be caring for me.

Sorry for being a "Debbie Downer". I wish I could get my optimism back.

Hi Cheyenne--
One thing I would recommend to you is going to the website for the National Comprehensive Cancer Network (NCCN.org)and registering so that you can view and print out the most current recommendations for anal cancer treatment. Make a copy for yourself and ones for your docs. Read through them and perhaps it will prompt some good questions for you to ask your doctors. You will find in reading them that treatment is the same for Stage I as it would be for Stage II or III, except perhaps for the amount of radiation used (smaller tumors may be treated with a lesser amount). You will find lots of good info in the guidelines and hopefully it will give you and your doctors a clear understanding of what needs to be done. This is a rare disease and some doctors have little or no experience in treating it. As for what to use for side effects, I think you'll get better info on this forum than you will from the doctors/nurses. You will be prescribed some meds for nausea, etc.--use them as soon as you feel queasy. Also, do not hesitate to use the pain meds! As for some of the other things you might experience, we can help you, so please speak up! We are here to help you through this. One more very important thing--be sure to stay well-hydrated! I wish you all the best.

Cheyenne said:

I saw your recommendation on
I saw your recommendation on the NCCN and visited that site but it looked like you had to pay to register? I'm not cheap but I don't want to pay for something that I hope to need for such a short period of time.

I do plan to start hydrating today before I start treatments tomorrow. I'm enjoying my last cup of coffee for awhile and will be drinking lots of water and Gatorade. And you are right about having fewer radiation treatments. Although I'm scheduled for 22 the nurse said to be prepared for the doctor to add additional treatments. She said probably 3. We will have to discuss that because Memorial Day comes up in this treatment schedule and they don't treat on holidays. That means that right now my treatment is scheduled to end on Wednesday, June 6th. If he adds on two more treatments, that will end on Friday. If he adds that third one, that puts me over a weekend and into Monday. So I'll give him 2 more but not 3.

Just One Suggestion
You might want to go along with the number of treatments the doctor recommends. It would be ashamed if the last treatment is the one that finally eliminates all the cancer cells. Even if they are not working Memorial Day you can have the final treatment the day after Memorial day. Many patients must have a break during the radiation treatment process due to the fact they are burned and need to take a break before resuming their final radiation treatments. They did tell me if I did not feel like coming in on a particular day for radiation just to call in and they would push my date out accordingly. Fortunately I did not have to do that. It does not seem critical that all radiation treatments be done consecutively.
Hope this helps some.
Mike

mxperry220 said:

You May Be Like Me
I felt the same as you before my treatments actually started. I am somewhat of a "control freak". This is one time I was not in control. I had to trust my doctors. I remember speaking with my primary care physician before treatment. He recommended my colo rectal surgeon. I told him I was not comfortable with him. He was more than willing to refer me to someone else. Right then I realized it not the doctors it was me not being in control. I went with the original colo rectal surgeon and 3 years 3 months later I am still seeing him. He turned out to be one of the colo rectal surgeons I could have. It sounds like you may need to have more discussions with your doctors rather than nurses or receptionists. You may also be having pre treatment anxiety which is what I had. I remember prior to treatment I hardly got any sleep for 2 weeks. Once the treatments started my anxiety level went way down.

Hope this helps some.
Mike

a few words
well frist im sry if im doing this poorly.im new to this site haveing hard time.
well i see you have 3 years 3 months im looking for some kind of time line of the recovery.
i had colon mass and limp notes removed and bag removed not on any treatment just did 5 month ct. im not good at and this reading and typeing is there any vioce chat rooms?

thanks tim