Newly diagnosed with rectal cancer

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 said:

Thank you Steve.
Surgery Wed

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

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

Annabelle41415 said:

Surgery

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

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. 

sflgirl said:

Thank you Sue and hello

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

 

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

herdizziness said:

Andrea

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

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

Trubrit said:

You had a Chemo class?

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

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