First appt with Oncologist - Advice or Suggestions please.

lizzydavis

Hi Everyone,

This is my first post as I just registered. I have been diagnosed with rectal cancer. There is no tumor but I had a positive lymph node. I had a colon resection on May 15. I have not had chemo or radiation. I will meet with the Oncologist on June 2. Any suggestions or advice? Thanks!

CherylHutch

Welcome, Lizzy!
First, let me welcome you to the board... although I'm sorry you have had to find us. You will find a wealth of information here with all the folk who have been through many treatments and different kinds of treatments.

I guess my main advice is not to panic... although, it's hard not to do when you are around doctors and their very serious faces. Just keep reminding yourself, no matter what they tell you it won't be as bad as it sounds when you are being told... and if that doesn't work, then just keep telling yourself, "Before I panic, I'll run it by the people back on the CSN board when I get home" and we'll let you know if there are any grounds to panic

Seriously... it's probably all going to be fine. Your oncologist will go over the plan he/she has come up with for you. Whether it will involve radiation or chemo or whatever. If it's going to then just remember that these are totally standard treatments to fight the beast.

On your first consultation appt:

1) take a notebook or pad of paper and pen. Do NOT be afraid to write down notes, dates, drug names, etc.

2) take someone with you. Seriously, you are going to be amazed at stuff you didn't hear but the person who came with you did hear. Or you may have heard and interpreted it one way and your friend/spouse interpreted it a totally different way. It's always good to have a second pair of eyes/ears at these appts.

3) if your onc tells you he/she is going to put you on chemo, ask what kinds and for how long.

4) will you be getting the treatments in his/her office or will you be going to a cancer centre?

5) will you be getting a port put in your chest or arm? If not, why not?

Most of all, just relax. As scary as it may seem (and yes, we've all been there), you are just starting this long journey and the last thing you want is to be scared and panicked every time you have to see a doctor or get a scan. As the oncologist talks, questions will probably come up... or, when you go home and start absorbing the information you've heard, you'll come up with oodles of questions! That's where the notebook comes in real handy... write those questions down whenever you think of them

And of course, you can always come in here and bounce any question off us... someone is bound to have an answer

Huggggggs,

Cheryl

kimby

Welcome
lizzydavis,

Wow, welcome to canzerLand. Pull up a chair and buckle in. This is just a tough time and can be a rough road.

The first thing you need is a small tape recorder. You'll want to start taping your appts so you don't miss something. I take someone with me and we both listen and take notes and I was still missing or misinterpreting things. My rad onc suggested I start taping appts and it has really helped. You will have a LOT of info thrown at you for awhile and you want to learn as much as you can, but it is just too overwhelming. You really do need to have a support person with you if at all possible.

Your oncologist should be clear about your treatment plan and the treatment team. The team will need to consist of (at least) a medical oncologist, a radiation oncologist, a surgical oncologist and possibly an interventional oncologist. Do you know what stage you are yet? That can change things somewhat, but a team approach is proven to be far superior to the 'one size fits all' approach.

What chemo/rad plan does he/she propose and why? How many cycles? What is a cycle? What can you expect for side effects? Write down all of your questions ahead of time so you don't forget them.

What is the procedure for getting lab/test/scan results? You will want a copy of every one of those every time. You will need a big 3-ring binder to start keeping everything in. It will be important to have all of your lab/test/scan results, treatment history, current medications, insurance info, personal representative/directive info, and (ick!) medical billings/EOB's. Livestrong - Lance Armstrong Foundation, has a good binder that is free locally or they charge shipping from their website. It contains some good info too, although it can be overwhelming this soon after diagnosis.

Well, this should be more than enough to get you in a panic. LOL I sure hope it doesn't. Take what works for you and delete the rest. Remember that you aren't alone and you can come here and ask questions as you need to. Just coming and reading the posts and our stories will help get you through.

Hugs,

Kimby

Shayenne

kimby said:

Welcome
lizzydavis,

Wow, welcome to canzerLand. Pull up a chair and buckle in. This is just a tough time and can be a rough road.

The first thing you need is a small tape recorder. You'll want to start taping your appts so you don't miss something. I take someone with me and we both listen and take notes and I was still missing or misinterpreting things. My rad onc suggested I start taping appts and it has really helped. You will have a LOT of info thrown at you for awhile and you want to learn as much as you can, but it is just too overwhelming. You really do need to have a support person with you if at all possible.

Your oncologist should be clear about your treatment plan and the treatment team. The team will need to consist of (at least) a medical oncologist, a radiation oncologist, a surgical oncologist and possibly an interventional oncologist. Do you know what stage you are yet? That can change things somewhat, but a team approach is proven to be far superior to the 'one size fits all' approach.

What chemo/rad plan does he/she propose and why? How many cycles? What is a cycle? What can you expect for side effects? Write down all of your questions ahead of time so you don't forget them.

What is the procedure for getting lab/test/scan results? You will want a copy of every one of those every time. You will need a big 3-ring binder to start keeping everything in. It will be important to have all of your lab/test/scan results, treatment history, current medications, insurance info, personal representative/directive info, and (ick!) medical billings/EOB's. Livestrong - Lance Armstrong Foundation, has a good binder that is free locally or they charge shipping from their website. It contains some good info too, although it can be overwhelming this soon after diagnosis.

Well, this should be more than enough to get you in a panic. LOL I sure hope it doesn't. Take what works for you and delete the rest. Remember that you aren't alone and you can come here and ask questions as you need to. Just coming and reading the posts and our stories will help get you through.

Hugs,

Kimby

Yo-Ho Lizzy!
Hi! just wanted to welcome you to our own Black Pearl, a pirate ship full of beautiful cancer survivors, cancer scarves and hats and all (hey, Orlando Bloom and Johnny Depp made them look sexzy in the Caribbean movies LOL ),who also just got some great advice from, I can't add anymore but a hearty welcome! don't be too scared, there is alot of hope out there these days, and great cancer centers that have really good technology and better medicines these days!

Hugssss to you!
~Donna

tootsie1

Hi
Hi, Lizzy.

It's good to meet you, but I'm sorry you had to join the cancer club. You've found a good place for information, comfort, humor, etc.

*hugs*
Gail

kmygil

Welcome Lizzy
Hi Lizzy,

So sorry you had to come here. I wish no one had the need to come here, but since the need is there, this is the absolute best place. It saved me from going nuts a lot! All I can do is repeat what others have told you. Take someone with you--two heads are better than one when it comes to getting information. Ask if it is all right to tape your conversation; sometimes you sit there nodding and listening, but all that is going through your head is "CANCER! CANCER! CANCER!" Don't do a lot of on-line research, unless it is for specific things, like medications etc; most of the reports/published research is so out of date that it has no bearing on today's cancer patient.

Come here early, come here often. People here offer suggestions, comfort, hope and inspiration and love! Also, while family and friends love you, they are sometimes too close to speak with frankly--they are scared, too. So here we have fellow travelers on this journey who can offer realistic suggestions and completely understand where your head is.

Take care and keep us updated.

Hugs,
Kirsten

lizzydavis

kmygil said:

Welcome Lizzy
Hi Lizzy,

So sorry you had to come here. I wish no one had the need to come here, but since the need is there, this is the absolute best place. It saved me from going nuts a lot! All I can do is repeat what others have told you. Take someone with you--two heads are better than one when it comes to getting information. Ask if it is all right to tape your conversation; sometimes you sit there nodding and listening, but all that is going through your head is "CANCER! CANCER! CANCER!" Don't do a lot of on-line research, unless it is for specific things, like medications etc; most of the reports/published research is so out of date that it has no bearing on today's cancer patient.

Come here early, come here often. People here offer suggestions, comfort, hope and inspiration and love! Also, while family and friends love you, they are sometimes too close to speak with frankly--they are scared, too. So here we have fellow travelers on this journey who can offer realistic suggestions and completely understand where your head is.

Take care and keep us updated.

Hugs,
Kirsten

Thanks!
Cheryl, Kimby, Gail, Donna, Kirsten,

Thank you for your quick response. Everyone is so nice. I deeply appreciate your messages. Yes, it is very scary and so nice to hear from all of you.

I have copied your suggestions for my meeting with the Oncologist. Thank you for taking the time to help me and your kind words! I truly appreciate it.

shoppergal

lizzydavis said:

Thanks!
Cheryl, Kimby, Gail, Donna, Kirsten,

Thank you for your quick response. Everyone is so nice. I deeply appreciate your messages. Yes, it is very scary and so nice to hear from all of you.

I have copied your suggestions for my meeting with the Oncologist. Thank you for taking the time to help me and your kind words! I truly appreciate it.

Welcome!
There really isn't much to add, everyone has said it all and it's all good advice. When I met my oncologist, I had the notebook, and my husband with me, and we both listened and asked questions. After she basically explained everything, she then wanted to know if I wanted to hear statistics. That's one thing I didn't want to hear, I don't go by statistics at all.Everyone is different and I've met cancer survivors that shouldn't be here and are! No matter what the statistics were, I was going to be one of the ones that made it,no matter what!
And you will too. Yes it's scary and there is alot to have to absorb at once, but it's basically fear of the unknown. I'm sending good vibes your way!!!

lizzydavis

shoppergal said:

Welcome!
There really isn't much to add, everyone has said it all and it's all good advice. When I met my oncologist, I had the notebook, and my husband with me, and we both listened and asked questions. After she basically explained everything, she then wanted to know if I wanted to hear statistics. That's one thing I didn't want to hear, I don't go by statistics at all.Everyone is different and I've met cancer survivors that shouldn't be here and are! No matter what the statistics were, I was going to be one of the ones that made it,no matter what!
And you will too. Yes it's scary and there is alot to have to absorb at once, but it's basically fear of the unknown. I'm sending good vibes your way!!!

Thanks Shoppergal!
Thanks for your note. It helps to know others are out there. I appreciate the good thoughts. My best to you too!