Feel like I am in another world

Tybtym

So I now have found my doctors and I have like 6 appointments in the next week between pet scan, ct can, getting a port, blood work, oh my goodness I don't have time to think. Maybe that's a good thing. A lot of good info has been given and Martha a big thank you to you. I have stage one anal cancer so far I have have found out I know nothing of what I am getting into but will learn along the way. Positive attitude and crying in-between has been my motto lately. I feel I am living in another world not use to all this a calendar has been my best friend today.

mp327

Hi Tybtym--
It's good to hear from you, as you have been in my thoughts. I appreciate the thank you, but I don't really feel like I've done anything for you. Where will you be having your scans, port surgery and treatment?--close to home, I hope. I know you feel like you're in a whirlwind right now--that's how I felt during the time between diagnosis and treatment. There's appts. for everything. Just take it one day at a time. I have learned from communicating with so many others that opinions differ on whether a newby wants to get as much information as they can or whether they prefer to not know so much. There's lots of information out there, some good, some not. I would stick to the NCCN guidelines and this support forum. Info from people who have actually been through this can be most helpful in getting through treatment. I'm glad you are a Stage 1--treatment is very successful in Stage 1 anal cancer. You have every reason to believe that you will beat this! Please keep us posted as you get test results, etc. We are here to help you get through this--and you WILL!

Martha

Tybtym

mp327 said:

Hi Tybtym--
It's good to hear from you, as you have been in my thoughts. I appreciate the thank you, but I don't really feel like I've done anything for you. Where will you be having your scans, port surgery and treatment?--close to home, I hope. I know you feel like you're in a whirlwind right now--that's how I felt during the time between diagnosis and treatment. There's appts. for everything. Just take it one day at a time. I have learned from communicating with so many others that opinions differ on whether a newby wants to get as much information as they can or whether they prefer to not know so much. There's lots of information out there, some good, some not. I would stick to the NCCN guidelines and this support forum. Info from people who have actually been through this can be most helpful in getting through treatment. I'm glad you are a Stage 1--treatment is very successful in Stage 1 anal cancer. You have every reason to believe that you will beat this! Please keep us posted as you get test results, etc. We are here to help you get through this--and you WILL!

Martha

Treatment places
Scans radiation treatment in Dublin found a female rad. Ocon. That's from Atlanta that has office in Dublin, pet scan came out no activity in lymph nodes or in any other areas of body, chemo is with a group out of macon 45 min drive, I just hope we are all on the same page with treatment. I start Monday getting marked for radiation then following Monday start chem. Not so much scared of chemo but terrified of radiation! Any advice on how to sleep at night, having trouble can't turn this mind off.

mp327

Tybtym said:

Treatment places
Scans radiation treatment in Dublin found a female rad. Ocon. That's from Atlanta that has office in Dublin, pet scan came out no activity in lymph nodes or in any other areas of body, chemo is with a group out of macon 45 min drive, I just hope we are all on the same page with treatment. I start Monday getting marked for radiation then following Monday start chem. Not so much scared of chemo but terrified of radiation! Any advice on how to sleep at night, having trouble can't turn this mind off.

Tybtym
I'm glad that things are moving along swiftly towards the beginning of treatment for you. As for keeping your docs on the same page, make sure to print out the NCCN guidelines for treatment of anal cancer if you have not already done so (on NCCN.org). Take a copy to both the rad onc and the med onc, go over everything and make sure they and you have a clear understanding about what treatment should be. If it's any consolation, I don't think my two docs communicated with each other all that much after the initial contact and discussion of what treatment should be. It's good that you have found doctors within a short drive and I'm sure everything will go well for you. Please keep us posted!

Tybtym

mp327 said:

Tybtym
I'm glad that things are moving along swiftly towards the beginning of treatment for you. As for keeping your docs on the same page, make sure to print out the NCCN guidelines for treatment of anal cancer if you have not already done so (on NCCN.org). Take a copy to both the rad onc and the med onc, go over everything and make sure they and you have a clear understanding about what treatment should be. If it's any consolation, I don't think my two docs communicated with each other all that much after the initial contact and discussion of what treatment should be. It's good that you have found doctors within a short drive and I'm sure everything will go well for you. Please keep us posted!

Treatment
Martha
Did you start chemo first or radiation?

Angela_K

Tybtym said:

Treatment places
Scans radiation treatment in Dublin found a female rad. Ocon. That's from Atlanta that has office in Dublin, pet scan came out no activity in lymph nodes or in any other areas of body, chemo is with a group out of macon 45 min drive, I just hope we are all on the same page with treatment. I start Monday getting marked for radiation then following Monday start chem. Not so much scared of chemo but terrified of radiation! Any advice on how to sleep at night, having trouble can't turn this mind off.

Managing doctors
I accepted early in the game that I would have to be the 'care coordinator' for myself and a year after treatment still make sure that my three onc docs are all on the same page and have added my ob/gyn and PCP to the 'family.' I live a good 200 miles from my onc docs but make sure they communicate with my local docs as needed.

Everyone is so busy with their practices, I don't fault any of them in the least.

As far as sleep, my PCP prescribed Ambien, which was a lifesaver. I was able to wean myself off of it after I got my first good report following treatment. Just try to take one minute, one day at a time and celebrate each day as you conquer it. Treatment and side effects vary GREATLY among us survivors. Expect the absolute best. I know that it sounds Pollyannaish, but the mental game can make or break you. Choose it to 'make' you.

You WILL get through this. You WILL be a stronger person because of it. Keep the faith. Keep your little light shining.

Blessings,
Angela

mp327

Tybtym said:

Treatment
Martha
Did you start chemo first or radiation?

Treatment
I started chemo and radiation on the same day--chemo in the morning, rads in the afternoon. That's usually the routine, although it may vary a day or two for some people.

rds711

I am right there with you
I am finally starting chemo and radiation on 2/27 also. My PET showed no nodal involvement or metastasis. Port is almost healed so should be ready by then. It has been a long haul as was diagnosed 12/23.

It feels like youre in a whirlwind with all the appointments and tests. We will get through this Tybytm! Hang on tight to loved ones and come to the boards when you need to talk with those who have already made it through. I will keep you in my prayers. Though I would not wish that anyone else had this diagnosis, just knowing that someone is at the same point of the treatment as me sommehow makes it a little less scary.

Randy