Newly diagnosed with rectal cancer

sflgirl · January 2015

Hello all,

I have been reading many of your posts and realize there are very special people here.

I wondered if someone could tell me what my diagnosis means: Rectal adenocarcinoma (HCC) - Primary. I knew I had rectal cancer but the HCC scares me to death. That is in relation to liver cancer. So does this mean it has metastisized to the liver?

I'm 55, first colonoscopy with no symptoms and this is what I am starting with. EUS next Tuesday, meet the surgeon on Thursday and CT scan on Friday. I'm anxious to know the stage so I will know better what is going to happen to me. I have made the mistake of reading a lot on the internet and feeling pretty discouraged right now....

Thanks,

Andrea

Lovekitties · January 2015

Welcome

As we tell each new person, we are sorry that you had a reason to find us, but glad that you have.

I assume that your diagnosis was made from a biopsy of a tumor or polyp from the colonoscopy.

I am surprised at the order of your tests and meeting with the surgeon. An endoscopy is a new one for me for the newly diagnosed. Usually first test is CT and/or PET scan with contrast. With these images the doctors can most often see if there has been spread from the primary. It seems odd that the surgeon would want to meet with you prior to the scan.

Were you having any symptoms or issues prior to your colonoscopy?

When trying to gain information about cancer treatments, statistics and "cures" the internet is most often not your best information.

Can you give us a general idea of where in this wide world you live...perhaps a state if you live in the USA? That way our family here may be able to offer more specific information.

For now, just take a deep breath and know that the folks here will help you all we can to navigate this disease.

Hugs,

Marie who loves kitties

Annabelle41415 · January 2015

Welcome

Welcome to the board and I'm sorry you have to be here. It's a scary place to be where you are at but we can help you get through this. First and foremost quit looking on the internet for information as it is usually outdated and not accurate. Get a notebook and take it with you to the doctor with any questions you have. Come here if you want a suggestion of questions to ask if you aren't sure. I'm surprised by the endoscopy as well unless you are having acid reflux issues or unexplained heartburn. The CT/PET scan will tell alot more thats going on especially with staging. I'm not familiar with the HCC reference and don't put much into any interpretation until you talk to your doctor. You could have caught it early so don't be too down right now. It's easy to let emotions get the better of you and we all do it. When do you get the results of the tests you are having done? You should have them within a day or two and don't let them make you wait a week or two for results as they can be read the same day. When one is anxious about results, ask for an answer ASAP as they don't take a week. Welcome again and come to us with any questions or concerns you have. Good luck on the upcoming scans/tests.

Kim

sflgirl · January 2015

Lovekitties said:
Welcome
As we tell each new person, we are sorry that you had a reason to find us, but glad that you have.

I assume that your diagnosis was made from a biopsy of a tumor or polyp from the colonoscopy.

I am surprised at the order of your tests and meeting with the surgeon. An endoscopy is a new one for me for the newly diagnosed. Usually first test is CT and/or PET scan with contrast. With these images the doctors can most often see if there has been spread from the primary. It seems odd that the surgeon would want to meet with you prior to the scan.

Were you having any symptoms or issues prior to your colonoscopy?

When trying to gain information about cancer treatments, statistics and "cures" the internet is most often not your best information.

Can you give us a general idea of where in this wide world you live...perhaps a state if you live in the USA? That way our family here may be able to offer more specific information.

For now, just take a deep breath and know that the folks here will help you all we can to navigate this disease.

Hugs,

Marie who loves kitties

Hi Marie,
Yes, the diagnosis

Hi Marie,

Yes, the diagnosis was from the biopsy of the tumor. I have pictures of it but don't yet know how big it really is, only know that is low in the rectum.

So I live in warm and wonderful south Florida, about 1 hour north of Miami. I am going to the Cleveland Clinic that is about 30 miles from my home. They have a great reputation and I felt comfortable at my first meeting. I took a friend with me because I knew I wouldn't remember everything.

My understanding is the EUS will determine the depth of the tumor in the rectum wall and/or adjoining organs and the CT will see if it spread anywhere. I'm meeting with the surgeon just for the initial consult. I guess I'll get to him sooner or later after they decide if I'm going to have radiation/chemo prior to cutting me up.

I didn't have any obvious symptoms but in hindsight I think I can attribute a dull ache in my gut to this but really nothing else. The only reason I had the colonoscopy is my gyno at my annual exam suggested I go. I told her about the dull ache and she said she can't diagnose an ache. So I went.....thank goodness.

After next week I can share my results. I'm nervous.

sflgirl · January 2015

Annabelle41415 said:
Welcome
Welcome to the board and I'm sorry you have to be here. It's a scary place to be where you are at but we can help you get through this. First and foremost quit looking on the internet for information as it is usually outdated and not accurate. Get a notebook and take it with you to the doctor with any questions you have. Come here if you want a suggestion of questions to ask if you aren't sure. I'm surprised by the endoscopy as well unless you are having acid reflux issues or unexplained heartburn. The CT/PET scan will tell alot more thats going on especially with staging. I'm not familiar with the HCC reference and don't put much into any interpretation until you talk to your doctor. You could have caught it early so don't be too down right now. It's easy to let emotions get the better of you and we all do it. When do you get the results of the tests you are having done? You should have them within a day or two and don't let them make you wait a week or two for results as they can be read the same day. When one is anxious about results, ask for an answer ASAP as they don't take a week. Welcome again and come to us with any questions or concerns you have. Good luck on the upcoming scans/tests.

Kim

Thanks Kim,
And thanks for

Thanks Kim,

And thanks for the advice about getting results fast. The waiting really is the worst, isn't it?

Andrea

marbleotis · January 2015

Welcome and sorry you are here

I am a stage 3b signet cell survivor who will be 3 years NED (no evidence of disease) on Jan 31. I was dx'ed at 49 years old.

Som thoughts:

No more internet searches - do not turn yourself into Dr. Google
There are some great sites online, talk with your Onc.
This site is filled with many people that are managing their way through this challenge, they are a tremendous group of heros and angels and will be there for you day and night. The post above me from Laz (lp1964) is a great example. He has been a wonderful support and example for many people and has helped me many, many times. A hero!

Once you are staged you will have a much better idea of the plan of attack. Please keep us posted, and feel free to get a 2nd, 3rd and even 4th opinion to put your mind at ease. Bring a notepad to all appts and take notes and review questions with your Drs.

You have come to the right place on this csn site, please keep us posted.

lilacbrroller · January 2015

marbleotis said:
Welcome and sorry you are here
I am a stage 3b signet cell survivor who will be 3 years NED (no evidence of disease) on Jan 31. I was dx'ed at 49 years old.

Som thoughts:

No more internet searches - do not turn yourself into Dr. Google

There are some great sites online, talk with your Onc.

This site is filled with many people that are managing their way through this challenge, they are a tremendous group of heros and angels and will be there for you day and night. The post above me from Laz (lp1964) is a great example. He has been a wonderful support and example for many people and has helped me many, many times. A hero!

Once you are staged you will have a much better idea of the plan of attack. Please keep us posted, and feel free to get a 2nd, 3rd and even 4th opinion to put your mind at ease. Bring a notepad to all appts and take notes and review questions with your Drs.

You have come to the right place on this csn site, please keep us posted.

what... me worry???

Hi, Andrea. Welcome to our board. We're quite a nice community, if I do say so myself. Also check out colon club which is larger. http://coloncancersupport.colonclub.com/viewforum.php?f=1&sid=24748271e751e4c982e67558c3cdb5b7

At this point, you're probably pretty freaked out. As everybody else has said, at this point you now have cancer. You're in the club. No way to know if it's spread or not, you'll just have to have further tests (ie the scans) to find out. Waiting for this sort of information is the worst thing in the world, but we all have been here so this is a place to air your worries and concerns. Be mindful that it is a public forum so unless you're very very open about your life, be careful about revealing personal information (ie address, phone, etc) in this space.

Yeah, there is a time for being Dr. Google but right now, since you really don't even know what you've got, why worry? I mean about things you don't have yet. And if youre in a panicked state, just take deep breaths, try to relax, and focus on what you can deal with, one step at a time. Keep it in perspective, and not let your thoughts get crazy with "what ifs' too much, although this is very natural

I'd say right now is a time to get your ducks in order. because you will have to have some kind of treatment, whether it is surgery or otherwise. Read about the kinds of treatment for rectal cancer. American Cancer Society's main webpages have a lot of info about the disease, and even have questions you can ask your doctor. Maybe you found these first, before you found this forum? If not, I will paste the link. http://www.cancer.org/cancer/colonandrectumcancer/index

Really read through your insurance policy. If you're a person who is ordinarily healthy, maybe you haven't paid attention to it. Figure out the differences between preferred provider, and not, if you don't know this already. - usually it's reimbursement levels Find out if your local hospital is on the list (Cleveland clinic?), find some good oncologists on the list, etc. Ask around. If the local care in your area isn't super great, research nearby facilities - I believe the mayo clinic is in jacksonville? Cancer grows, sometimes pretty quicky, and lining up treatment and deaing with hospital and insurance bureaucracies can waste a lot of (precious) time. sometimes it's better to go to a really good clinic first that can recommend local providers who can actually treat you. So if you have to google and research, I'd focus on more adminstrative things now.

Also, whom do you tell you have cancer and how? And when do you tell them? This is important. If you have a lot of friends and family, they'll all want to talk to you and bring you soup... Responding to everybody's concerns personally takes time and energy. Right now you might want to tell just close family and friends, or not, and ask them to keep it close hold. This kind of information goes viral. I had people coming out of the woodwork and was exhausted! But in a good way. Up to you on when you go public with your news. Do you have a good support system?

Not trying to be cart before the horse, but you might want to make some quiet inquiries/research about work, if you still work. Check your leave balances, take the pulse of your employer to find out how you'll be treated if you have to miss a lot of time for work, etc. Prepare for some missed days, or research telework if you have that kind of job, etc. I woudn't say a word at work until you know the results of your scans and have a treatment plan from your doctor. Any jumping of the gun in this area could lead to trouble.

As an experienced patient who has been through this, that's some initial advice I can offer for where you are now. I do hope it hasn't spread and that all is well. Welcome to our forum! good luck

all the best/atb

Karin

UncleBuddy · January 2015

Hi Andrea

I'm sorry you need to be here, but the folks here are a wealth of information and support. So far they have given you great information. Most important, bring a notebook with questions you want to ask. Sometimes we get nervous in the dr's office and forget what we want to ask or what answers they gave us. Also, if possible, bring someone with you. You'd be surprised at how helpful it can be if you have someone else there for support, as well as another set of ears.

My brother has rectal cancer and it was in the lower part of the rectum. He did chemo and radiation before the surgery. They did a lower anterior resection with a temporary ileostomy that was reversed in a couple of months. He also had chemo after.

My brother's mets showed up on the PET scan, the CT wasn't as accuarate for him. Some people have very accuarate CT scans, so you have to see what works best for you.

Just know that everyone is an individual and the cancer could be very different from others. You will see that there are stage 4s on here who are now NED, people living with stage 4 well beyond what the stats show. My advice: don't take the stats to heart because everyone is different and a lot of those stats are old and before many of the new cancer drugs had come out. Stay positive and try to keep healthy. It will be easier to deal with any side effects, if you have any. Let us know how it goes.

Lin

sflgirl · January 2015

UncleBuddy said:
Hi Andrea
I'm sorry you need to be here, but the folks here are a wealth of information and support. So far they have given you great information. Most important, bring a notebook with questions you want to ask. Sometimes we get nervous in the dr's office and forget what we want to ask or what answers they gave us. Also, if possible, bring someone with you. You'd be surprised at how helpful it can be if you have someone else there for support, as well as another set of ears.

My brother has rectal cancer and it was in the lower part of the rectum. He did chemo and radiation before the surgery. They did a lower anterior resection with a temporary ileostomy that was reversed in a couple of months. He also had chemo after.

My brother's mets showed up on the PET scan, the CT wasn't as accuarate for him. Some people have very accuarate CT scans, so you have to see what works best for you.

Just know that everyone is an individual and the cancer could be very different from others. You will see that there are stage 4s on here who are now NED, people living with stage 4 well beyond what the stats show. My advice: don't take the stats to heart because everyone is different and a lot of those stats are old and before many of the new cancer drugs had come out. Stay positive and try to keep healthy. It will be easier to deal with any side effects, if you have any. Let us know how it goes.

Lin

Thank you all very much,

Thank you all very much, your comments and advice are very thoughtful and I appreciate them. I'm mostly calm because I go to work everyday and will continue to do so. I also don't want to freak out my kids so I forge ahead. But when I'm alone I get scared. So I will stay off the internet except the American Cancer Society page which has a lot of good information. About a week from now I will know what stage I'm at after the tests and that will comfort me because I hate the unknown. I will let you all know what happens. I have a feeling I'm going to need you all.

Best,

A

alphagam · January 2015

sflgirl said:
Thank you all very much,
Thank you all very much, your comments and advice are very thoughtful and I appreciate them. I'm mostly calm because I go to work everyday and will continue to do so. I also don't want to freak out my kids so I forge ahead. But when I'm alone I get scared. So I will stay off the internet except the American Cancer Society page which has a lot of good information. About a week from now I will know what stage I'm at after the tests and that will comfort me because I hate the unknown. I will let you all know what happens. I have a feeling I'm going to need you all.

Best,

A

EUS

almost 4 years ago I was found to have a very low rectal mass, 5cm in size. The GI ordered an EUS. I was told a T3 tumor. I went for a second opinion. My second dr. Doesn't use an EUS as it is ok'd technology and wanted more pathology. That second round of biopses ended up with tumor removal, clear margins, a Stage 0 pathological staging and I am in perfect health today.

Just please get a second opinion

kathy

sflgirl · January 2015

alphagam said:
EUS
almost 4 years ago I was found to have a very low rectal mass, 5cm in size. The GI ordered an EUS. I was told a T3 tumor. I went for a second opinion. My second dr. Doesn't use an EUS as it is ok'd technology and wanted more pathology. That second round of biopses ended up with tumor removal, clear margins, a Stage 0 pathological staging and I am in perfect health today.

Just please get a second opinion

kathy

Kathy,
Thank you. I will

Kathy,

Thank you. I will keep that in mind. Did you also get a CT at that time? I'm getting both next week. Between the two I was hoping to keep a clear picture of what and where.

Andrea

sflgirl · January 2015

Well, some of you were

Well, some of you were commenting on my first post about the sequence of tests and meeting of doctors. So I had a rectal endoscopy on Tuesday that staged at T3. I met my surgeon on Thursday to go over what he was going to cut. Had a CT scan today and I have two spots on my liver. Three weeks ago I didn't have any symptoms and I'm now stage 4 cancer. This is so difficult to comprehend. I'm devastated and feeling very hopeless.

Trubrit · January 2015

sflgirl said:
Well, some of you were
Well, some of you were commenting on my first post about the sequence of tests and meeting of doctors. So I had a rectal endoscopy on Tuesday that staged at T3. I met my surgeon on Thursday to go over what he was going to cut. Had a CT scan today and I have two spots on my liver. Three weeks ago I didn't have any symptoms and I'm now stage 4 cancer. This is so difficult to comprehend. I'm devastated and feeling very hopeless.

It's awful, isn't it

Its like a punch in the stomach, taking everything out of you. Feeling devestated and hopeless is a normal reaction, and nessesary too, as you try to absorb what is happening.

The first weeks after diagnosis are really the worst. Once you have a treatment plan in place, you will find that things get somewhat easier. Knowing that you are doing something to knock this on the head, really helps.

There are many stage IV survivors here, who are moving through the years quite well. Its not a death sentence like it used to be in the past.

We are all here to help you along the way.

Sue - Trubrit

lp1964 · January 2015

Hi Andrea,

I had the same type of cancer almost 2 years ago. Adenocarcinoma is the most common cancer in the rectum and has nothing to do with the liver. depending on the size and location of the cancer you may receive radiation and chemo before the surgery. Don't be afraid. As scary as it is, it's doable. Let's hope that you caught it early and you will be healed. Keep us posted so we can support you the best we can.

Laz

sflgirl · January 2015

Trubrit said:
It's awful, isn't it
Its like a punch in the stomach, taking everything out of you. Feeling devestated and hopeless is a normal reaction, and nessesary too, as you try to absorb what is happening.

The first weeks after diagnosis are really the worst. Once you have a treatment plan in place, you will find that things get somewhat easier. Knowing that you are doing something to knock this on the head, really helps.

There are many stage IV survivors here, who are moving through the years quite well. Its not a death sentence like it used to be in the past.

We are all here to help you along the way.

Sue - Trubrit

Sue,
All I worry about is my

Sue,

All I worry about is my kids. I'm very sad but my life has not been so spectacular that the world will miss me. But I have been the most important person in my children's lives and I'm afraid for them. Although they are young adults, 21 and 23, they still count on me for everything. They are going to have to turn into grown ups very quickly. And I wanted to go after my mom, so she didn't have to know this happened. She's 84.

There may be stage 4's here but my news has come so fast and so bad that it's hard for me to envision a future. I reread the post lilacbrroller about getting my ducks in a row. That's what I'm concentrating on today. Passing off to my brothers and friends all the things that I have handled so they can carry on and be self sufficient. It's a bad feeling and I hate to let them down, I know that sounds crazy.

I'm just so very very sad.

Lovekitties · January 2015

sflgirl said:
Sue,
All I worry about is my
Sue,

All I worry about is my kids. I'm very sad but my life has not been so spectacular that the world will miss me. But I have been the most important person in my children's lives and I'm afraid for them. Although they are young adults, 21 and 23, they still count on me for everything. They are going to have to turn into grown ups very quickly. And I wanted to go after my mom, so she didn't have to know this happened. She's 84.

There may be stage 4's here but my news has come so fast and so bad that it's hard for me to envision a future. I reread the post lilacbrroller about getting my ducks in a row. That's what I'm concentrating on today. Passing off to my brothers and friends all the things that I have handled so they can carry on and be self sufficient. It's a bad feeling and I hate to let them down, I know that sounds crazy.

I'm just so very very sad.

OK to be sad

Yes, it is ok to be sad, but don't let that rule your life. Now is the time you have to get the fighting spirit. One of the common things among our Stage 4 survivors is they say "ok, now I know what I am dealing with, what do we do now".

You are not letting anyone down. You didn't do this to yourself. None of us were ready for such a diagnosis, regardless of stage, but we have to put one foot in front of the other and move forward. How long do we have? No one knows for a certainty, even those without a life threatening disease.

The important thing now if for you to meet with your surgeon and define the next steps and how quickly you can begin with either surgery or chemo. There are options out there to deal with the mets to the liver. It is also important that you feel comfortable with the plan given you. If you don't then you need to get a second opinion about options and treatment plan.

We can help you. We want to help you. Many of our members have been in your shoes, and can give you info about options to explore with your medical team.

Please keep us posted. You are not alone.

Hugs,

Marie who loves kitties

Trubrit · January 2015

sflgirl said:
Sue,
All I worry about is my
Sue,

All I worry about is my kids. I'm very sad but my life has not been so spectacular that the world will miss me. But I have been the most important person in my children's lives and I'm afraid for them. Although they are young adults, 21 and 23, they still count on me for everything. They are going to have to turn into grown ups very quickly. And I wanted to go after my mom, so she didn't have to know this happened. She's 84.

There may be stage 4's here but my news has come so fast and so bad that it's hard for me to envision a future. I reread the post lilacbrroller about getting my ducks in a row. That's what I'm concentrating on today. Passing off to my brothers and friends all the things that I have handled so they can carry on and be self sufficient. It's a bad feeling and I hate to let them down, I know that sounds crazy.

I'm just so very very sad.

Ah, children. How we love them

That was what hurt me the most. Thinking about my youngest, and how hard it was going to hurt him. My oldest, well, he's like his dad, and would miss me, but it wouldn't break him. My youngest though, no, its not time for me to leave him, he would take it very hard.

Please believe me, believe all of us here, once you get going with treatment you will start feeling much better about this situation. It can be beat. Sure, we lose people, too many. Just go find my post about all we lost from this forum last year. It happens, and far too much, but don't give up until you're taking your last breath. It aint over until the fat woman sings, and I'm still singing.

Still, it is a great time to sort through things and get rid of 'stuff'. I look at all of the stuffI have accumulated and realize that I don't want to leave it all for my husband to sort out, so I have been thinning things out. If I live to be 80, well fine, I still don't need it.

Keep with us here. We are full of great advice, adn tons of love nad support.

Sue - Trubirt

Easyflip · January 2015

Andrea,

I went from stage 3 to 4 when a met was discovered in my liver. There are plenty of treatments for liver mets and they're are lots of people here who successfully dealt with them. Go ahead and cry, be sad but don't stay there. Try to focus on treatment, plan of action and take one step at a time. Be resolute about beating this because you can! Statistics are old and new treatments are being developed as we speak. The head of MD Anderson thinks a cure will happen on his watch! You have plenty to live for and plenty of support here. Best wishes and keep us updated, we want to help you!

Easyflip/Richard

sflgirl · January 2015

Easyflip said:
Andrea,
I went from stage 3 to 4 when a met was discovered in my liver. There are plenty of treatments for liver mets and they're are lots of people here who successfully dealt with them. Go ahead and cry, be sad but don't stay there. Try to focus on treatment, plan of action and take one step at a time. Be resolute about beating this because you can! Statistics are old and new treatments are being developed as we speak. The head of MD Anderson thinks a cure will happen on his watch! You have plenty to live for and plenty of support here. Best wishes and keep us updated, we want to help you!

Easyflip/Richard

Liver Mets

Hey Richard,

Thanks for the comment. When I heard liver mets I figured that was about the worst thing that could happen, and the beginning of the end. But I think I am relatively early in discovery as I looked over several blood tests. Ironically I just had a physical to get life insurance. Obviously that won't be happening but the blood tests they did didn't indicate liver disease.

So anyway, are there questions I should ask about treatment for liver mets? I am having surgery on Wed to remove the rectal tumor and they are deciding whether to take out the two liver spots at the same time. Should I push for that? I am relatively young and healthy and I just want this stuff out of me. Can you tell me your opinion or how you have dealt with it?

Or anyone else with liver mets?

Thank you,

Andrea

Helen321 · January 2015

sflgirl said:
Liver Mets
Hey Richard,

Thanks for the comment. When I heard liver mets I figured that was about the worst thing that could happen, and the beginning of the end. But I think I am relatively early in discovery as I looked over several blood tests. Ironically I just had a physical to get life insurance. Obviously that won't be happening but the blood tests they did didn't indicate liver disease.

So anyway, are there questions I should ask about treatment for liver mets? I am having surgery on Wed to remove the rectal tumor and they are deciding whether to take out the two liver spots at the same time. Should I push for that? I am relatively young and healthy and I just want this stuff out of me. Can you tell me your opinion or how you have dealt with it?

Or anyone else with liver mets?

Thank you,

Andrea

Hi Andrea, I also had rectal

Hi Andrea, I also had rectal cancer. I was stage III and terrified. The best thing that someone on here said to me is this is not 1980 and cancer isn't a death sentence. It really isn't. There are lots of people on the boards who have been Stage IV and have no recurrence (NED - no evidence of disease). Unfortunately they don't come on very often because they are trying to move on but once in a while they do. Follow your doctors treatment, eat well, exercise when you feel well enough. Just love you. It's so incredibly scary in the beginning and at every test and every surgery but you have control of what you put in your body and you have the tools and the power to fight this. Starting treatment will make you feel a lot better. You go from anxiety and hysteria to okay now I'm doing something about it, I can do this. Hang in there, time is going to help ease the heightened feelings.

Easyflip · January 2015

sflgirl said:
Liver Mets
Hey Richard,

Thanks for the comment. When I heard liver mets I figured that was about the worst thing that could happen, and the beginning of the end. But I think I am relatively early in discovery as I looked over several blood tests. Ironically I just had a physical to get life insurance. Obviously that won't be happening but the blood tests they did didn't indicate liver disease.

So anyway, are there questions I should ask about treatment for liver mets? I am having surgery on Wed to remove the rectal tumor and they are deciding whether to take out the two liver spots at the same time. Should I push for that? I am relatively young and healthy and I just want this stuff out of me. Can you tell me your opinion or how you have dealt with it?

Or anyone else with liver mets?

Thank you,

Andrea

Andrea

I think if you can have the mets surgically removed that's the best. Mine was surgically removed aka resection 4 months ago. It depends a lot on location, size etc but I would push for resection. Good luck!

Easyflip/Richard

Newly diagnosed with rectal cancer

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