I have a PLAN

Options
VickiCO
VickiCO Member Posts: 917
edited March 2014 in Colorectal Cancer #1
I met with the medical oncologist yesterday afternoon. I like this guy a lot, BTW. He reviewed everything and concluded that yes, I am Stage 3 (because of the size and because it 'broke through the wall'), BUT he does not think the lymph nodes are involved. The one node in question is right next to the tumor and that can create a false positive result. Score one for us. So, the news is still not great, but it's a lot better than we thought last Friday.

The Plan is to see the radiation oncologist and the surgeon this week, then the treatments will start in about two weeks. I will get 5-6 weeks of concurrent chemo/radiation. Chemo (5-FU) will be via a port/pump, 24/7, so the hope is that the side effects should be minimized somewhat. Then I will rest for 4 weeks. Then the surgeon will do his magic. That will be the hardest, because of the tumor's location. Probably looking at colostomy, and most likely permanently. After another month's rest, I will start a 6 month chemo regime to kill any bad guys lurking anywhere, and to assure a low recurrence rate. So, we are looking at a tough year, but the end result is the word CURE. Dr Barnett used that word a lot yesterday. I have a doctor's appt today with my gastro doctor (the one who found this mess) He's going to be our Team Leader. He's my rock right now.

I have been handling this news OK so far, but this morning I just want to curl up and hide from the world. Thanks to all of you for being there for me. It means a lot.

Vicki
«1

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    Options
    You are not alone
    Vicki, I was in tears reading your comment about wanting to just curl up... I think we have all felt like that at times. This just SUCKS and can be tough at times! I am praying for strength for you to battle this beast and for you to soon be dancing with NED! Sounds like your team is going to be an awesome asset for you in this battle. Keep them communicating with you and with each other; it will help tremendously! You go girl and fight hard!
    mary
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Options
    msccolon said:

    You are not alone
    Vicki, I was in tears reading your comment about wanting to just curl up... I think we have all felt like that at times. This just SUCKS and can be tough at times! I am praying for strength for you to battle this beast and for you to soon be dancing with NED! Sounds like your team is going to be an awesome asset for you in this battle. Keep them communicating with you and with each other; it will help tremendously! You go girl and fight hard!
    mary

    You go, girl!!
    Vicki... this is a lot of news to digest, but it is excellent news! The fact that your doctor is throwing the "C" word around -- CURE -- that is worth doing a jig all the way through your treatments!! Yes, as you say, this next year is going to be quite the journey... been there, done that :) BUT, as someone who has been there, done that, let me tell you there are way more highs than lows... and your doctor is STILL talking that all of this is with CURE in mind. I would be dancing on the rooftops right now, singing in my loudest, most off-key voice... chances are slipping on the slippery roof shingles and falling on my butt on a cement sidewalk... so that would be a whole different set of treatments I'd need... but I would be laughing and rejoicing and making all my family and friends take me out for dinner and buy me sparkly gifts (grin).

    Now.... here's what I advise (like who made me Queen Advice Girl???)... allow yourself to celebrate and rejoice. You now have a PLAN which is the best thing to have when fighting the beast... and don't look at it as, "OMG! A whole year of chemo, radiation, surgery, feeling like kaka, getting cranky, being so tired, fatigue, tears and anything else you can think that goes along that line. Look at it one day at a time. TODAY you got the news/plan... and it's now almost evening... today sure went ok :) There's a good chance tomorrow is going to be just as good... and Friday too... then it's the weekend! A few more days and you've already gotten through Week 1 of the next year :)

    If you take it one day at a time... you are going to be very surprised to find that there are actually very few "Yuck" days compared to "Good" days... and in no time your treatments will be 1/3 finished, then 2/3's finished, then completely finished!!

    Huggggggs,

    Cheryl
  • VickiCO
    VickiCO Member Posts: 917
    Options
    Thanks ladies!
    I am doing better tonight. I met with the gastro doc and he was prepared with a lot of instruction and help. Like I said, he's my rock. He has a top-notch colorectal surgeon down in Denver lined up for me. This guy has been named the top colorectal doctor for four years running. So I am not giving up hope on that front yet! Both the general surgeon (he's putting in the port) and the radiation oncologist have called and we have appts set - we are on a roll!
    Rock on. I am ready to kick some ****!

    Vicki
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Options
    VickiCO said:

    Thanks ladies!
    I am doing better tonight. I met with the gastro doc and he was prepared with a lot of instruction and help. Like I said, he's my rock. He has a top-notch colorectal surgeon down in Denver lined up for me. This guy has been named the top colorectal doctor for four years running. So I am not giving up hope on that front yet! Both the general surgeon (he's putting in the port) and the radiation oncologist have called and we have appts set - we are on a roll!
    Rock on. I am ready to kick some ****!

    Vicki

    Hi Vicki,
    Yes, CURE is a

    Hi Vicki,

    Yes, CURE is a good word to be hearing!! A thought on the upcoming surgery, have you talked to your doctor or anyone else about sphincter saving surgery? If you haven't, definitely look it up online. Some doctors and facilities are better at doing it than others. Also, amazing things can happen during the chemo/radiation. I never needed the surgery (my tumor was also very close to my anus- just 3 cm up). My tumor COMPLETELY disappeared during the chemo/radiation. The gastroenterologist came in after giving me the flexible sigmoidoscopy and kept repeating, "there's nothing there- absolutely nothing!" Follow up biopsies on the area also showed absolutely no sign of cancer. Now- the rest of me was another story- I had a liver resection and am currently having more chemo for my lungs, BUT I was spared a surgery in which I would have also had a high probability of having a permanent colostomy. My surgeon beforehand told me she's do everything possible to save the sphincter, but couldn't tell me for sure until after surgery. Thankfully, I never needed it & they are just watching that area very closely. Now, I know a tumor disappearing like this is rare, but it IS NOT THE ONLY CASE I've heard of like this- it DOES HAPPEN! I actually have a friend (met through our in-common surgeons) and hers also disappeared. Some doctors will still do the surgery even if the tumor disappeared, but mine chose not to because of my high probability for a permanent colostomy & she didn't want to risk that with me if there was no sign of cancer there anymore.
    Be encouraged- even if your tumor doesn't disappear during surgery, it likely will shrink down which will make surgery easier & hopefully can also lessen the need for a permanent colostomy.

    Take care- miracles can and do happen!!
    Lisa
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Options
    lisa42 said:

    Hi Vicki,
    Yes, CURE is a

    Hi Vicki,

    Yes, CURE is a good word to be hearing!! A thought on the upcoming surgery, have you talked to your doctor or anyone else about sphincter saving surgery? If you haven't, definitely look it up online. Some doctors and facilities are better at doing it than others. Also, amazing things can happen during the chemo/radiation. I never needed the surgery (my tumor was also very close to my anus- just 3 cm up). My tumor COMPLETELY disappeared during the chemo/radiation. The gastroenterologist came in after giving me the flexible sigmoidoscopy and kept repeating, "there's nothing there- absolutely nothing!" Follow up biopsies on the area also showed absolutely no sign of cancer. Now- the rest of me was another story- I had a liver resection and am currently having more chemo for my lungs, BUT I was spared a surgery in which I would have also had a high probability of having a permanent colostomy. My surgeon beforehand told me she's do everything possible to save the sphincter, but couldn't tell me for sure until after surgery. Thankfully, I never needed it & they are just watching that area very closely. Now, I know a tumor disappearing like this is rare, but it IS NOT THE ONLY CASE I've heard of like this- it DOES HAPPEN! I actually have a friend (met through our in-common surgeons) and hers also disappeared. Some doctors will still do the surgery even if the tumor disappeared, but mine chose not to because of my high probability for a permanent colostomy & she didn't want to risk that with me if there was no sign of cancer there anymore.
    Be encouraged- even if your tumor doesn't disappear during surgery, it likely will shrink down which will make surgery easier & hopefully can also lessen the need for a permanent colostomy.

    Take care- miracles can and do happen!!
    Lisa

    oops- typo
    Hi again,
    I just read over my post and noticed a typo- I wrote "even if your tumor doesn't disappear during surgery"... I MEANT "even if your tumor doesn't disappear during radiation..."
    Sorry about the confusion.
    Lisa
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Options
    CURED!
    Hi vicki!

    That's right...you just hang onto that word CURED! I am on the other side of that word--I have reached the "cured zone" and just about fell over when my colonscopy surgeon called me CURED 2 years ago. (I am 7 years out Stage III lymph pos zero mets).

    I never allowed anyone to use to the word "remission" with me because I felt it was just asking for a temporary lapse in cancer. I went for the CURE!

    As for curling up....yep, those days happen. Just make sure to uncurl quickly and get back at it!

    I'm pulling for ya!

    peace, emily
  • kimby
    kimby Member Posts: 797
    Options
    CURE!
    A plan is great! A cure is better! You can do this! Yes, you will have bad days. Days you want/need to curl up in bed. You always have permission to cry, yell, scream...what ever you need. You also have permission to HAVE FUN! No one ever mentions that part, but fun is not only allowed but encouraged. Laughter really does help. Take care of you, have fun and run for the cure!

    Kimby
  • VickiCO
    VickiCO Member Posts: 917
    Options
    lisa42 said:

    Hi Vicki,
    Yes, CURE is a

    Hi Vicki,

    Yes, CURE is a good word to be hearing!! A thought on the upcoming surgery, have you talked to your doctor or anyone else about sphincter saving surgery? If you haven't, definitely look it up online. Some doctors and facilities are better at doing it than others. Also, amazing things can happen during the chemo/radiation. I never needed the surgery (my tumor was also very close to my anus- just 3 cm up). My tumor COMPLETELY disappeared during the chemo/radiation. The gastroenterologist came in after giving me the flexible sigmoidoscopy and kept repeating, "there's nothing there- absolutely nothing!" Follow up biopsies on the area also showed absolutely no sign of cancer. Now- the rest of me was another story- I had a liver resection and am currently having more chemo for my lungs, BUT I was spared a surgery in which I would have also had a high probability of having a permanent colostomy. My surgeon beforehand told me she's do everything possible to save the sphincter, but couldn't tell me for sure until after surgery. Thankfully, I never needed it & they are just watching that area very closely. Now, I know a tumor disappearing like this is rare, but it IS NOT THE ONLY CASE I've heard of like this- it DOES HAPPEN! I actually have a friend (met through our in-common surgeons) and hers also disappeared. Some doctors will still do the surgery even if the tumor disappeared, but mine chose not to because of my high probability for a permanent colostomy & she didn't want to risk that with me if there was no sign of cancer there anymore.
    Be encouraged- even if your tumor doesn't disappear during surgery, it likely will shrink down which will make surgery easier & hopefully can also lessen the need for a permanent colostomy.

    Take care- miracles can and do happen!!
    Lisa

    Doctor is the best..
    Yes, Lisa, I am seeing the specialist that my gastro doc recommended expressly because if anyone can save the sphincter muscles, he can. I accept that it might not be possible, but why not try? And they did tell me that the possibility of the tumor reducing to almost nothing exists, but the surgery will still be necessary because there will still be cells left in there somewhere.

    I did curl up and cry, then I got up, called some friends and LAUGHED. I heard some great not-repeatable-here jokes today!

    Thanks for all the support. I am only 13 days since diagnosis, but it sometimes feels like a year.

    Vicki
  • VickiCO
    VickiCO Member Posts: 917
    Options
    Getting scared again
    I go to the surgeon in the morning, to find out when the port goes in. There is so much to process. Once the port is in I can start the chemo and radiation. I didn't think it would bother me this much. I am actually shaking. Does it get easier? And geez, I haven't even really started yet!

    Vicki
  • pamness
    pamness Member Posts: 524 Member
    Options
    VickiCO said:

    Getting scared again
    I go to the surgeon in the morning, to find out when the port goes in. There is so much to process. Once the port is in I can start the chemo and radiation. I didn't think it would bother me this much. I am actually shaking. Does it get easier? And geez, I haven't even really started yet!

    Vicki

    Yes, it does get easier
    Oddly enough, you get into a routine the radiation, chemo, surgery etc. For some reason, having the port put in makes it seem very real and scary but after your first treatment, at least for me, the fear dies off, and routine and fighting takes over.

    Stage III colon cancer has a good cure rate these days. I was stage IIIA - two lymph nodes positive - (right next to the colon). I am currently 15 months ned.

    All the best,

    Pam
  • VickiCO
    VickiCO Member Posts: 917
    Options
    Thanks
    It helps that you all have been there, done that.

    Vicki
  • kimby
    kimby Member Posts: 797
    Options
    VickiCO said:

    Thanks
    It helps that you all have been there, done that.

    Vicki

    Good Luck
    Good luck tomorrow. It does get better. I had a small meltdown before the start of chemo and for the first few cycles but each lessoned and you do fall into a routine. You are not alone.

    Kimby
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Options
    VickiCO said:

    Thanks
    It helps that you all have been there, done that.

    Vicki

    Been there done that
    On March 24th I was exactly where you are at now. The Pet scan and port was done 3 hours apart............yea...someone messed up scheduling a little, but all went fine. Port in, No problems at all with it. Started Chemo/Rad the next Monday and got them done 5 weeks of 5x a week rad and 24/7 chemo fanny pack (Radiation treatments are very fast or was for me in and out in less than 15 minutes from the time you get there, try to get them scheduled early as to not mess up your whole day.I could drop off my kids at school and then go directly to treatment...Surgery 5 weeks after...gave me a 30% chance of saving spincter muscle but tumor was to large (golf ball size when we started, small marble when we were done) and to get clear margins they had to remove my inner spincter,rectum,and I now have a brand new sigmoid ostomy and have no problems at all using or taking care of it. I had no lymph node involvement and the surgery was laproscopic which made it a lot simpler. Everything came out the bottom and no stomach muscles were cut open except for the small entry holes (5 of them ). 3 days and I was going home. Laid around for 5 weeks recouping and started post op chemo oxiliplatin/leucoverin/5fu...12 treatments every other week and I start #5 in the morning ( Monday).....5 days of nausea(slight) and back to normal. It seemed like yesterday and now im almost done...........hang in there, it will all be fine..........
  • menright
    menright Member Posts: 256 Member
    Options
    Parallel Paths
    Dear Vicki:

    I am still working on my plan. I received DX on October 17th and been tested 6-different ways to get to the PLAN. I think it will be much like yours. Chemo/Radiation (5weeks) Rest for 5 weeks and then followed by sugery. I think then there will be more chemo/Radiation.

    Let's hope and pray we both find ourselves in this club of NED's.

    Mike
  • VickiCO
    VickiCO Member Posts: 917
    Options
    UPDATE
    I saw the colorectal specialist today. What a great experience! (OK, that sounds weird!) But, after my bad experience with the general surgeon yesterday, this guy was a saint. He was kind, thorough and best of all, he gave me HOPE. He said there is a (very small) chance he can do reconstruction, IF the chemo/radiation shrinks the tumor enough, and IF my body can withstand it - meaning there is enough rectum tissue left to work with - and IF I decide that I want to try. Well, DUH. He also said I should not have to see any doctor I wasn't comfortable with and offered to put my port in himself. Unfortunately, his schedule is very full until next week, and I really need my port now, so we will go to Dr Doom for that minor procedure. Hey, I'll be drugged and won't have to talk to him. And he's a capable surgeon, just no bedside manner at all. Good Dr also said to forget "staging" - the only way to really know is when the surgeon goes in and removes the tumor and lymph nodes. Just keep thinking "Cure."

    I have to say, he has turned my thinking completely around. Both he and his assistant explained everything to me, even things they aren't working with me on like radiation and chemo side effects. They gave me tons of stuff to read, and best of all, THEY LISTENED.

    So - let's get this show on the road!

    Vicki (who actually may sleep a bit tonight!)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Options
    VickiCO said:

    UPDATE
    I saw the colorectal specialist today. What a great experience! (OK, that sounds weird!) But, after my bad experience with the general surgeon yesterday, this guy was a saint. He was kind, thorough and best of all, he gave me HOPE. He said there is a (very small) chance he can do reconstruction, IF the chemo/radiation shrinks the tumor enough, and IF my body can withstand it - meaning there is enough rectum tissue left to work with - and IF I decide that I want to try. Well, DUH. He also said I should not have to see any doctor I wasn't comfortable with and offered to put my port in himself. Unfortunately, his schedule is very full until next week, and I really need my port now, so we will go to Dr Doom for that minor procedure. Hey, I'll be drugged and won't have to talk to him. And he's a capable surgeon, just no bedside manner at all. Good Dr also said to forget "staging" - the only way to really know is when the surgeon goes in and removes the tumor and lymph nodes. Just keep thinking "Cure."

    I have to say, he has turned my thinking completely around. Both he and his assistant explained everything to me, even things they aren't working with me on like radiation and chemo side effects. They gave me tons of stuff to read, and best of all, THEY LISTENED.

    So - let's get this show on the road!

    Vicki (who actually may sleep a bit tonight!)

    Surgeons
    My first surgeon was a great guy but no bedside manner and gave me the impression that it was gonna be all downhill. I thought to myself theres no way Im ever going to survive if his looks as he checked me meant anything. Never smiled or ever gave me a slightest notion that I was going to live or die. So, I went to Vanderbilt and man what a turn around...Gave me plenty of hope and even said that they liked seeing my type there because of the ability to return them to a long normal life........Talk about a sigh of relief.....Even God forbid I re occur at least he gave me the ability to have a future and to be able to actually plan things.

    To Vicko and menright.....everything will be fine. The road seems long and arduous and it is but there is a light at the end of the tunnel and it won't be a train. It seemed like yesterday that I was going to an appointment every day twice a day but now my life has slowed way down and just with post op chemo and almost half done I can hopefully say its almost over.....both of you will be there also sooner than you think. Just don't hold all hope for all great things to happen all the time. I tried to assume every appt. and every test result was going to be just great, I got let down a lot and it feels like you get kicked in the side so just take everything in stride and as it comes. It will be a ragged path that we follow but nonetheless a path to complete recovery and "NED" for life...Have faith and smile everywhere you go. Thats half the battle....God Bless ya both.
  • VickiCO
    VickiCO Member Posts: 917
    Options
    Thanks...
    Your posts mean a lot. We have a very similar path, and (sorry to say for you) it helps that you are ahead of me and I know what to expect.

    God's blessings on you. Vicki
  • impactzone
    impactzone Member Posts: 551 Member
    Options
    VickiCO said:

    Thanks...
    Your posts mean a lot. We have a very similar path, and (sorry to say for you) it helps that you are ahead of me and I know what to expect.

    God's blessings on you. Vicki

    Congrats on a step in the right direction
    Having a plan gives you a direction and a possibility of cure. Its that old journey of 1000 miles begins with one step thing, I guess. Realize we are all rooting for you.
    Blessings
    Chip
  • menright
    menright Member Posts: 256 Member
    Options
    Beggining of treatment
    Dear Vicki:

    I hope all is well in your treatment process. We are tracking on the same timeline. I just had my first Chemo treatment yesterday and now I need to determine what side effects will occur for me. The literature and list of possible side effects is daunting. So far I have minimal issues but I have just begun.

    Good luck with your battle and keep in touch.

    Mike
  • menright
    menright Member Posts: 256 Member
    Options
    treatment progress
    Dear Vicki:

    Since we are going through treatment at the same time, I thought I would check in to see how you are doing?

    I hope the side effects are minimal.

    They have me on a series of Chemo including Xeloda daily; Erbitux weekly and Oxypalatin(sp?) every 3-weeks.

    The most cumbersome side effect is the cold sensitivity. I have not had a cold drink in a week and cannot go outside without hats and gloves. Tough time of year for this side effect.

    Let me know how you are doing. We should connect with the other Mike, who is alos on our schedule.

    Take Care,

    Mike