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Newly diagnosed with rectal cancer

sflgirl
Posts: 220
Joined: Jan 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's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

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

sflgirl
Posts: 220
Joined: Jan 2015

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.

 

Annabelle41415's picture
Annabelle41415
Posts: 6654
Joined: Feb 2009

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
Posts: 220
Joined: Jan 2015

Thanks Kim,

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

 

Andrea

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

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

marbleotis's picture
marbleotis
Posts: 710
Joined: Mar 2012

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's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

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 Cool

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

 

Daisy13's picture
Daisy13
Posts: 43
Joined: Nov 2014

Keep coming back to this site with questions, concerns, fears, progress, and joys. Share anything that you are going through.  There will always be someone who can relate and provide knowledge, comfort, and support.

My advice to you on this journey is from a caregiver's perspective ...try to let your loved ones know what your needs are if possible. Certainly, make sure they know loud and clear that you need their love and support. Don't try to go it alone.  It is sometimes hard to make important decisions because it is overwhelming after a diagnosis.  What I discovered, and it may be this way for you as well, is that after a treatment plan is in place you will feel more empowered.

You may have some strong emotions that you direct at your loved ones ... sometimes this will come back your way as well. I do think though that the individual going through the cancer needs an abundance of sensitivity.  If loved ones are having difficulty providing this they may need some extra support so that they can provide you a trusted emotional space as you navigate your cancer journey.  Most major cancer centers have social workers and therapists on hand to provide needed support. Caregivers are very welcomed here as well so if you have a loved one who would like support send them our way.

One more thing, I am a big proponent of palliative care starting from diagnosis ... and by this I do not mean hospice care ... nor do I mean the type of care that is given to individuals for whom no more active treatment is available.  I am talking about palliative care designed to relieve symptoms and enhance the quality of life for patients who are facing any serious chronic condition and can be beneficial during any stage of illness.  

The statistics on survival of this illness are just numbers.  Each individual is unique.  You have every reason to be hopeful.

Best to you and those who love you. ~ Daisy

 

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

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
Posts: 220
Joined: Jan 2015

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
Posts: 5
Joined: Apr 2011

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
Posts: 220
Joined: Jan 2015

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
Posts: 220
Joined: Jan 2015

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's picture
Trubrit
Posts: 5339
Joined: Jan 2013

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

sflgirl
Posts: 220
Joined: Jan 2015

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's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

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's picture
Trubrit
Posts: 5339
Joined: Jan 2013

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's picture
Easyflip
Posts: 588
Joined: May 2013

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
Posts: 220
Joined: Jan 2015

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's picture
Helen321
Posts: 1424
Joined: May 2012

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's picture
Easyflip
Posts: 588
Joined: May 2013

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

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

I'm about to see if my my liver ablation is staying successful with a CT Scan tomorrow.  My surgeon did not want to resect my otherwise healthy liver, so blasted my 2.2 cm tumour. 

Definitely ask many questions and before your bowel resection. 

The regular blood draw for insurance does not include the CEA test So that is why Cancer wasn't picked up  

Good luck on your surgery  you will do well  

Sue - Trubrit

 

sflgirl
Posts: 220
Joined: Jan 2015

Good luck with your scan Sue!  Wishing you the best.

 And I found out my CEA is 31.

 

Steve444
Posts: 105
Joined: Sep 2014

I'd just like to mimic what everyone else is saying.  You're going to be freaked out and that's ok, but you should get better emotionally once you start going through the paces and see positive results.  I was also diagnosed with stage 4 rectal cancer about a year ago.  The tumor in my recum was the size of a grapefruit and my liver was consumed with innumerable tumors covering 90% of it.  I was scared, but as I started treatment and came to terms with my disease everything became ok.  My kids were pretty freaked out (20-26), but as I got better they stopped worrying and conversations became more about regular things instead of them not knowing what to say or focussed on cancer.  It's tough on everyone around you, but should get better after the initial horror wears off.

i was told surgery wasn't an option and started on chemo.  It wasn't too long before scans no longer found tumors, the chemo and my focus on healing myself managed to shrink everything down.  Just because we're diagnosed at stage 4 doesn't mean hope is lost and end of life is near.  Sure it may come back, sure results vary, but try to have a positive outlook and get healthy. Being NED 8 months after stage 4 diagnosis doesn't appear to be all that uncommon anymore.

Use this as a wake up call.  Spend more time with those you love, do some of the things you've been putting off.  We never know what is going to happen to us or our loved ones.  I looked back and realized how much of my life I lived stressed out and miserable.  Once I was diagnosed I felt more free, I no longer wanted things, the important work I thought I was doing didn't really matter in the grand scheme of things, priorities shifted and I changed.

 I still struggle with the uncertainty.  Do I really only have a few years left or 10 or more?  Should I still plan for retirement?  Should I try to go back to work?  I still get nervous every blood test wondering if CEA is going to continue climbing or settle back down.  I'm becoming more and more successful in just letting worries fade away and dealing with what comes when it comes, but they still come and say hi weekly.

For now you still have a lot to take in, a lot to learn and a lot to experience.  You should start getting less scared, get used to the questions, advice, research from friends and family as they try to help you on your journey (they'll all play dr Google as well).  You'll get used to the sitting and waiting, become comfortable with your treatment team and the familiar faces you see every week.  You'll experience pain and discomfort and may feel like giving up, but know this too shall pass.  Sorry that you're here, but know many people are going through the same thing and we understand.

sflgirl
Posts: 220
Joined: Jan 2015

Thank you Steve.

Surgery Wed morning to remove the rectal tumor.  It pretty small, 4 cm. 

Found out today there are 2 tumors on my liver, each about 4 cm and they are not close together.  So after rectal surgery recovery I start on chemo to shrink the liver tumors if possible and then a second surgery to take them out. 

At least the process is beginning and that is a positive step.  I have no frame of reference for all that is to come so I'm not scared about that yet.  I'm sure I'll have a different opinion in a very short period of time. 

I appreciate you wise and uplifiting remarks.  I will come back after I get back from the hospital, I guess they said 3-4 days in there after surgery.

My best to you all,

Andrea

Annabelle41415's picture
Annabelle41415
Posts: 6654
Joined: Feb 2009

Wishing you the best outcome possible and may God Bless your team of doctors and assitants to remove all that nasty disease.  Glad that you have such a positive approach to this as it helps tremendously.  One thing to remember after surger is walk, walk, walk.  Even when it hurts like heck, walk and then walk again.  You will find that it will help you heal much faster.  It's ok to rest when needed but don't spend hour after hour on the couch or in bed.  Take the medicine for pain when needed and don't let it go beyond when needed to try and be a he-man (woman) and tough it out.  If it's time for a pain pill - take it if you feel you need it.  It's too hard to catch up to pain and easier to control it.  After some time you can ease up on the pain pills, but do it gradually.  Please let us know how you are doing after surgery. You will be in my thoughts and prayers.

Kim

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

hope the surgery goes well. And probably, only here would people say "yay! Only two liver mets" 

seems your clinic is movine fast, which is great, if your surgery is tomorrow.

again, good luck! Sounds like your case is getting the attention it needs and you are getting good care.

all the best

karin 

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

I second Kim's recommendations.  Walking helps you recover.  Take the medicine for pain when needed.  Good luck with your surgery and follow up chemo. 

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

I pray your surgery goes well and you are up and about pronto.

Look forward to hearing from you again. 

Sue - Trubrit

sflgirl
Posts: 220
Joined: Jan 2015

Thank you Sue and hello all,

Just want to report a successful sugery on Wed. to remove the rectal/sigmoid tumor.  Took out 10 inches to get rid of a 4 cm tumor.  Done laproscopically and no colostomy.  I took everyone's advice and turned into a fool, walking the floor of the hospital, lol.  The good news is, it worked.  I'm home on Sat.  just 3 days after surgery.  So happy to be home.   It really sucks trying to sleep in the hospital.  Always waking you up for blood pressure, needle sticks, iv drips.  You all know this all too well so thank you all for the good advice.

Next step chemo.  Said I had to wait 4 weeks until I healed from this surgery.  I don't want to wait so they said there was some possibility of liver embolisation to get started shrinking them.  don't know if this is common or not.  Just told the oncologist I want to be as aggressive as possible.    Waiting to hear about the lymph node and liver biopsy results.

Anyone have experience or opinion on liver embolisation or next steps?

Thank you all for your support.  I come to this site because of your positive comments and hopeful nature.  I think I am a lucky person to have found this.

Andrea

 

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

Isn't it good to get going on treatment, even if the treatment is no fun at all. 

I am so glad you had a great surgical experience, and getting home in three days is fantastic. Keep the walking up, of course, but also take care not to over-do it. 

I can't help you with the liver embolisation advice, but others will be along at some point to give advice. 

Eat well, drink lots of water (but not too much) and continue healing. 

We are glad that you found us here. We're rather a special bunch of people .

Fight for my love
Posts: 1530
Joined: Jun 2009

Great to hear your surgery went so well, please have a speedy recovery!

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

Great news about the surgery! Now you want to get your GI tract working. I was constipated from the pain meds so a lot of prune juice worked for me. My laporoscopic surgery went through my belly button and it looked funny but once it healed it went back to normal. Is the embolisation to shrink the tumors prior to removal? That's what I would push for. Folfox next? Recent studies have shown 8 or maybe even 6 rounds are as effective as 12, something to think about. I also recall a study which found folfoxfiri plus maybe one other drug was best, sort of like throwing the kitchen sink at it right from the start, ask your onc. Good luck and it sounds like a good start! Pulling for you!

Easyflip/Richard

sflgirl
Posts: 220
Joined: Jan 2015

Thank Richard

I don't know much about the names of chemo so thanks for heading me in the right direction.  I will do some research to become familiar with what you quoted.

Thanks for all the good wishes.  Hope everyone is doing well.  I see Kim is taking a break, she is a bright spot so I know you will miss her.

Be well and I'll let you know what happens next :}

Andrea

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

hey there. Wanted to chime in on your Stage IV and liver tumors.  When I was informed of my cancer they gave me two weeks without chemo and 4 to 6 months if I had chemo, a year ago my oncologist brought up how hopeless my case was, and yet here I am FIVE YEARS later still hanging around, and yes, still with liver mets (Again).

The chemo took 7 months before I was deemed ready for surgery at which time they took out my colon tumor, liver tumors and ureter tumor, leaving just the lung tumors in place, and standard is to wait 4 weeks because you really need to be healed from this surgery first, so take the time to enjoy and enjoy the four weeks, I've waited up to six weeks between surgery and chemo.  

As for the chemo, there are a lot of different kinds and your onc will suggest what he thinks is best for you.  After you are on it, usually three months they do a CT scan to see how it is working, if it isn't they'll change chemo's and if it is working they will keep you on it until tumors are shrunk enough.

When they let you know what type of chemo, come on the board and let us know, because others here will have had the same chemo's and can tell you what to expect and how to cope with it.  You will usually be sent to a chemo class where they will explain to you your chemo and possible side affects, but they really don't get into good details, like you will find here. Chemo isn't as bad as portrayed on a lot of TV shows, they have medications that will help many of the side effects you might get (I really have had very few side effects) or what you can do to make things better for yourself.  That is what I love about this board, so much helpful information.

When I was told I had liver mets, Everytime I came across a mirror I looked for yellow eyes, because like you, I thought that was what was going to get me, I finally stopped looking after about three months and started to really enjoy my life instead of letting cancer take over.

Now quite a few people will become NED (no evidence of disease) after resections, so fingers and toes crossed that this will happen to you :), there are quite a few people here that are NED and they keep around to give us hope and encouragement.

All my best to you, and welcome aboard our community, we are happy to have you (just not happy about the reason) here with us.

Winter Marie

Trubrit's picture
Trubrit
Posts: 5339
Joined: Jan 2013

I would have liked a chemo class. I would have liked a radiation class too. I didn't get either. What information I got was from this wonderful forum, and its even more wonderful members. I remember getting a very detailed PM from a member about the horrific side effects from radiation. How grateful I was for that email, because I went through exactly what he had described, and even though you can never be ready for that kind of pain, I was ready in my head and knew that I wasn't the only one. 

I am heading in to see my Oncologist and Radiation Oncologist tomorrow and plan to mention how I think it would help if they were a little bit more infomative about the amount and severity of the side effects. It really does help to be prepared, even if you don't suffer any of them in the end. 

So, a chemo class. I think thats a wonderful idea, but sadly it is not available to everyone. 

Sue - Trurbit

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

My sister's onc office had an intro class for chemo and radiation patients and also gave them a binder of useful info.  While it did not go into specifics of each chemo, it did give you a sense of what you might expect and the most important info was an after hours phone number for ANY concerns or issues.  It was vital to know that they cared...no matter what time of day or night.

At her chemo sessions she always got a printout of her current blood work and what pre-meds and chemo she got, plus possible side effects.

They were superior in patient care and communications. 

Wish all could have that kind of care.

Marie who loves kitties

sflgirl
Posts: 220
Joined: Jan 2015

Thank you Marie! 

I truly appreciate uplifting stories and reasons for hopefulness. 

I read your profile, you have been through so much and you are still here!  Must be your fighting spirit and willingness to embrace each day.

I will not look for yellow eyes in the mirror, lol.  Good advice.

Andrea

Annabelle41415's picture
Annabelle41415
Posts: 6654
Joined: Feb 2009

So glad that you are home and the surgery was successful.  Hope you continue to do well.  Glad the walking helped.  It does hurt, but it sure does help.  Good luck and hope you have a speedy recovery.

Kim

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