Cancer virgin here.. Lol

lilpep1972
lilpep1972 Member Posts: 80
in Colorectal Cancer #1

Hello all hope everyone is feeling well today my best wishes for a happy an healthy holiday an new year go out to all.

my name is Chris and I was diagnosed this past Wed with colon cancer. I'm 42yrs young and guess I'm still trying to wrap my head around how and why I'm here now. I live in NY and will be going into surgery on Tues at Sloan Kettering with Dr.Paty. I was told I'm in late stage 2 early 3 and will need 6mnths of chemo following the surgery. As of last week I was in the gym,playing softball and coaching a girls youth basketball team for my church. Does anyone have any input on what I can expect on Tues and the do's and dont's of the upcoming months.. Any input would be greatly appreciated. 

Thanks :) 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Hello Chris

    I am sorry that you have joined our little (or sadly, not so little) group of survivors and caregivers. 

    You will not regret finding this forum, as you will gain much knowledge and info from everyone here. 

    So, surgery is your first step. Sounds like you are going into it a nice healthy young man, which is a huge plus. The surgery will go well, I am sure. Be sure to get yourself up and about as soon as you can after surgery, but not push yourself too much. Walking will get that bowel moving and that is an important part of healing (and getting solid food). 

    Once pathology comes back, you and your Oncologist will know where to go with treatment. Basically going into this healthy (I know, sounds weird to think you are healhy when you have Cancer, but its true) will really help you deal with all of the side effects. 

    You will read and hear about allot of side effects that come with the chemo, but it doesn't mean you will get them all. Different people react in different ways.  You hear allot about nausea, I didn't have any. Fatigue, I had that in spades. The more you know what to expect, the more ready you will be, even if you don't expereince half of what you read. 

    Well, I'll quit now. Others will join in and share their wealth of knowledge.

    I hope you return often, and let us help you along this journey. 

    Sue - Trubrit

  • lilpep1972
    lilpep1972 Member Posts: 80
    #3
    Trubrit said:

    Hello Chris

    I am sorry that you have joined our little (or sadly, not so little) group of survivors and caregivers. 

    You will not regret finding this forum, as you will gain much knowledge and info from everyone here. 

    So, surgery is your first step. Sounds like you are going into it a nice healthy young man, which is a huge plus. The surgery will go well, I am sure. Be sure to get yourself up and about as soon as you can after surgery, but not push yourself too much. Walking will get that bowel moving and that is an important part of healing (and getting solid food). 

    Once pathology comes back, you and your Oncologist will know where to go with treatment. Basically going into this healthy (I know, sounds weird to think you are healhy when you have Cancer, but its true) will really help you deal with all of the side effects. 

    You will read and hear about allot of side effects that come with the chemo, but it doesn't mean you will get them all. Different people react in different ways.  You hear allot about nausea, I didn't have any. Fatigue, I had that in spades. The more you know what to expect, the more ready you will be, even if you don't expereince half of what you read. 

    Well, I'll quit now. Others will join in and share their wealth of knowledge.

    I hope you return often, and let us help you along this journey. 

    Sue - Trubrit

    Thanks Sue

    Hi Sue and thank you for your response. I plan on taking this forum and making it part of my life. I herd and read wonderful thigs about it. Some of the side affects I'm reading about sound awful and my heart goes out to anyone suffering from them. I was thinking of not getting the chemo and going the holistic route as i have herd great things about it. As per my Dr and my mother the holistic way will not work and the toxic dump is the only way Togo. But maybe with my age an health on my side it may. Does anyone know someone who tried this?? 

    Thanks again :)

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #4
    fighting fire

    Our first steps were to start my wife on cimetidine and vitamin D3 asap, along with other recommendations from the Life Extension colorectal cancer articles for surgery and supplemental treatments - simply search "life extension" with colorectal cancer and cimetidine.   These articles could be the most important that you read this next year.    We went through a slow process of discovery on the extent of her cancer - "at least stage II" became stage III with some worries, and finally that it really was much worse, in the 4s.  We found many insurance policies in the LEF articles and other developmental medicine areas still considered CAM.  We added immunological, integrative, molecular, targeted and individualized answers to mild metronomic chemo and advanced surgery.  

    You don't know where this bus will go, it meanders - you hope to get off in NEDsville and stay there permanently.   

  • abrub
    abrub Member Posts: 2,174 Member
    #5
    Dr. Paty is the best!

    He's my doctor, and I'm madly in love with him!  He is a very meticulous surgeon, and will remove any visible cancer, but avoid removing anything that doesn't need to go.  He'll explain to you, and is receptive to your concerns. (I addressed my Christmas card to him an hour ago!)  Dr. Paty operated on my in July of 2007, and then again in June of 2010 (second surgery to repair an incisional hernia that had developed, and to look around to ensure that my cancer was gone.  I was Stage 4 appendix cancer.)

    Chemo isn't fun, but there are ways to deal with the side effects.  Make sure you tell your chemo nurses or med oncologist about all side effects and concerns.  You might also want to request a consult with Integrative Medicine, either while you are in the hospital, or after surgery.  They will be able to guide you on what is safe and advisable to do in conjunction with whatever stage of treatment you are in.  (For example, while anti-oxidants are generally good for you, they are bad for you during chemo, as they lessen the effect of the chemo.)  Integrative Med has me on a mushroom supplement for the long-term (Super Coriolous PSK) and lots of Vitamin D, as my levels were extremely low.

    MSK is excellent.  However, you've probably already learned that they work on their own time zone (and Dr. Paty has his own sub-time-zone.)  Waiting is the word of the day.  However, you will get the best care there.

    Ask questions here.  I'm not on here as much as I used to be.  However, if you send me a Private Message, I'll be notified, and will respond.  Happy to help you with anything MSK-related.

    Alice

    PS  he resected  my colon in 3 places, and reconnected everything perfectly.  Everything works better than before.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #6
    Welcome to the forum although

    Welcome to the forum although I am sorry that you have to be here. I was 41 when I was diagnosed although I was diagnosed stage IV. That was over 9 years ago. No one gets thier head wrapped around a cancer diagnosis in th begining. It is way too much to comprehend. My best advice is to write down any questions you have before doctors appointments. It is so easy to forget or get side tracked if you dont have your questions written down on paper in front of you. Make sure you bring a pad and pencil so you can write down the doctors answers or any other notes. Always ask for printed lab results pathology reports and scan reports. You may not understand it all now but you will learn and knowledge is a powerful tool. Research on the internet but stay away from the statistics. They aare always outdated and we are ALL different even if we share the same cancer and stage.

    We are not just a number but individuals in our disease and how our unique bodies react to the disease and the treatments.

  • Easyflip
    Easyflip Member Posts: 588 Member
    #7
    Hey Chris,

    I was diagnosed 3B march of 2013. They will more accurately stage you once they biopsy the tumor. I had 23 lymph nodes removed and one tested positive. I heard having more lymph nodes removed is better from a diagnostic point of view. My surgery was laporoscopic and healing was easy, just a weekend. I asked the surgeon not to give me a colostomy and I avoided 'the bag.' He took 2 feet of colon. Chemo wasn't fun but it wasn't as bad as I thought it was going to be, I didn't lose my hair and I wasn't nauseous. Ask for emend, it was a very good anti-emetic. I feel a combination of alternative/holistic and western technology is the smartest. It's hard to know what's right, sometimes you just have to trust your gut. Good luck and feel free to ask about anything and share how you're feeling. I know it's a scary time but I think you'll find silver linings here and there. I'm stage 4 now and I'm living and thriving. I can honestly say I'm pretty happy, going to Vegas after the new year! lol I'll be playing the cancer card to get a room upgrade (I've done it before) see, silver linings! HaHa Good luck!

    Easyflip/Richard

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #8
    Hi Chris

    I'm Helen and I went to Sloan. We're in the same age group. I finished my treatment and will be 2 years out this January.  A few tips I can think of off the top of my head...Do have someone sit in or phone in to all of your appts. Treatment is tough and you want someone healthy helping keep things straight. Don't panic which is much easier said than done. Cancer is not a death sentence, it's treatable.  Do get second opinions. Cancer doesn't spread in a week, it takes time so to take a week for a second opinion is okay, preferably from another cancer hospital. Do be the patient. Let people take care of you. Ask questions and speak up. Your body, your right. Sloan is a big hospital with a lot of patients, they miss things. You have to pay attention and have your backup person pay attention and keep notes.  It's really scary in the beginning but as you do the surgery and start treatment, you feel more relaxed because you know it's being cured. Hang in there and keep that sense of humor=}

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #9
    Helen321 said:

    Hi Chris

    I'm Helen and I went to Sloan. We're in the same age group. I finished my treatment and will be 2 years out this January.  A few tips I can think of off the top of my head...Do have someone sit in or phone in to all of your appts. Treatment is tough and you want someone healthy helping keep things straight. Don't panic which is much easier said than done. Cancer is not a death sentence, it's treatable.  Do get second opinions. Cancer doesn't spread in a week, it takes time so to take a week for a second opinion is okay, preferably from another cancer hospital. Do be the patient. Let people take care of you. Ask questions and speak up. Your body, your right. Sloan is a big hospital with a lot of patients, they miss things. You have to pay attention and have your backup person pay attention and keep notes.  It's really scary in the beginning but as you do the surgery and start treatment, you feel more relaxed because you know it's being cured. Hang in there and keep that sense of humor=}

    Welcome!

    Welcome to our community.  I was diagnosed at 45 at a much later stage -  same thing, I was swimming 1,000 meters a day and was very active, and not at all sick.  Perfect blood counts, too. Nearly three years later I am still alive.  Lucky for you they caught it in its early stages, and your near to a world class cancer center. 

    Chemo sucks but you have to buck up and suffer through it, if that ends up being a treatment option for you.  Most side effects are temporary to keep that in mind as your beacon of hope.  

    If you have questions, ask here - many of us have been through it all before and can share our pain relieving, comfort inducing hacks to help you deal with it.  

    all the best to you

    KarinLaughing

  • lilpep1972
    lilpep1972 Member Posts: 80
    #10
    Helen321 said:

    Hi Chris

    I'm Helen and I went to Sloan. We're in the same age group. I finished my treatment and will be 2 years out this January.  A few tips I can think of off the top of my head...Do have someone sit in or phone in to all of your appts. Treatment is tough and you want someone healthy helping keep things straight. Don't panic which is much easier said than done. Cancer is not a death sentence, it's treatable.  Do get second opinions. Cancer doesn't spread in a week, it takes time so to take a week for a second opinion is okay, preferably from another cancer hospital. Do be the patient. Let people take care of you. Ask questions and speak up. Your body, your right. Sloan is a big hospital with a lot of patients, they miss things. You have to pay attention and have your backup person pay attention and keep notes.  It's really scary in the beginning but as you do the surgery and start treatment, you feel more relaxed because you know it's being cured. Hang in there and keep that sense of humor=}

    Hello Helen

    Thanks for the info will definitely do everything ya saying todo. Surgery went well last night and Dr.Paty is amazing. Just soar right now and sooo hungry.. Really want to shovel a few burgers an pizza an wings etc etc in my mouth right now.. But that goin to be a lil bit I guess... Now the waiting game til next week to see what the path report shows. Will definitely keep in touch. Thanks soooo much very nice to meet ya :):)

  • lilpep1972
    lilpep1972 Member Posts: 80
    #11
    Thank you all :)

    Thank you all for all of your inputs and encouragement I will take them all to heart. Surgery went well Dr.Paty said just out 24hrs now an the soarness is setting in.. Although this button has been gettin a lot of use..lol.. Tumor was very heavy and DR said thy actually turned me upside dwn todo surgery.. On the waiting road now they took 20 noads and tumor,path be back next Wed. Will keep al posted and again thank you for welcoming into your family here. I know in my heart that this is the place that will get me thru this my courage will only go so far. It's the support around me that will get me to the finish line.. Thanks all :)

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #12
    lilpep1972 said:

    Thank you all :)

    Thank you all for all of your inputs and encouragement I will take them all to heart. Surgery went well Dr.Paty said just out 24hrs now an the soarness is setting in.. Although this button has been gettin a lot of use..lol.. Tumor was very heavy and DR said thy actually turned me upside dwn todo surgery.. On the waiting road now they took 20 noads and tumor,path be back next Wed. Will keep al posted and again thank you for welcoming into your family here. I know in my heart that this is the place that will get me thru this my courage will only go so far. It's the support around me that will get me to the finish line.. Thanks all :)

    Good man!

    You're a good man, posting so quickly after your surgery.  I am glad that it is all over and done with, and now you just need to get yourself walking, passing gas, passing a bowel movement and then they will let you eat. I remember how my first bowel movement was black, which freaked me out. It ended up being just normal, like a babies Meconium. 

    We will wait with you for your path report; and wish you the best of luck. 

    You are on the road to recovery, friend. A road we are happy to travel with you, helping you with info and emotional support. 

    Be good to yourself.

    Sue - Tru

  • esk2poo
    esk2poo Member Posts: 25
    #13
    Good morning Chris,

    I usually do not post much on here as I am mostly a lurker on this site but I am a little troubled by your comments. Of course, you can take any path you choose but I do not believe alternative treatment are the way to go. You could be cured 100% just by surgery alone but using alternative treatments afterwards will only buy you trouble. You can talk to your onc about complimentary treatments to go with the chemo. They will let you know what works with it and what would negate the positive effects. Why go through the chemo if something is going to make it ineffective. TGNent, Celebrex, I believe is great and you can do a search on here about it. Steve Jobs tried that route and we all know what happened to him. Chemo is proven and with CRC and early detection, it will help you. You can always discuss foregoing the oxiliplatin or lowering the dose as that one causes the worst side effects with a low percentage of help. again, it is your choice but I can't see going through the surgery only to have it come back in a couple of years stronger than it is now and suffer. Whatever you choose I wish you the best of luck.

    Allen

  • abrub
    abrub Member Posts: 2,174 Member
    #14
    esk2poo said:

    Good morning Chris,

    I usually do not post much on here as I am mostly a lurker on this site but I am a little troubled by your comments. Of course, you can take any path you choose but I do not believe alternative treatment are the way to go. You could be cured 100% just by surgery alone but using alternative treatments afterwards will only buy you trouble. You can talk to your onc about complimentary treatments to go with the chemo. They will let you know what works with it and what would negate the positive effects. Why go through the chemo if something is going to make it ineffective. TGNent, Celebrex, I believe is great and you can do a search on here about it. Steve Jobs tried that route and we all know what happened to him. Chemo is proven and with CRC and early detection, it will help you. You can always discuss foregoing the oxiliplatin or lowering the dose as that one causes the worst side effects with a low percentage of help. again, it is your choice but I can't see going through the surgery only to have it come back in a couple of years stronger than it is now and suffer. Whatever you choose I wish you the best of luck.

    Allen

    I didn't get the impressions that Lilpep was refering to changing paths, i.e. directions, but rather awaiting the Pathology report to determine the next steps.

  • abrub
    abrub Member Posts: 2,174 Member
    #15
    lilpep1972 said:

    Thank you all :)

    Thank you all for all of your inputs and encouragement I will take them all to heart. Surgery went well Dr.Paty said just out 24hrs now an the soarness is setting in.. Although this button has been gettin a lot of use..lol.. Tumor was very heavy and DR said thy actually turned me upside dwn todo surgery.. On the waiting road now they took 20 noads and tumor,path be back next Wed. Will keep al posted and again thank you for welcoming into your family here. I know in my heart that this is the place that will get me thru this my courage will only go so far. It's the support around me that will get me to the finish line.. Thanks all :)

    Walk, walk, walk!

    And take advantage of the Patient Lounge on the 15th floor.  Dr. Paty is a treasure.  You can tell him Alice says hi; he'll know who it is!  He turned you upside down because that was the best way for him to get everything.  He is incredibly meticulous, and takes no shortcuts.

    Best,

    Alice

  • lilpep1972
    lilpep1972 Member Posts: 80
    #16
    abrub said:

    I didn't get the impressions that Lilpep was refering to changing paths, i.e. directions, but rather awaiting the Pathology report to determine the next steps.

    Thanks again :)

    Day 3 out of surgery and again want to thank everyone who posts back. Sue,Alice and all thank you sooooooo much. I will definitely tell Dr.P you say hello. I actually had a shoot of going home today but no bowl move so far :( jus want my bed and my shower and my dog etc etc.. Judy said it best "there is NO place like home" ... But again if I had to be anywhere OMG the nurses and staff here on the 15th flr are like guardian angels. Nicest most compassionate people I have ever met(behind Mom of course) lol .... Anywhoooo once again thanks to all for input an will let ya know about path report. cannot believe I'm getting that report back on Xmas eve jeez could life be any funnier.. I really think my outlook on life has changed in the last week.. Things will definitely be seen thru a different lens from here on.. Hope everyone has a wonderful and happy holiday and I wish you all the very best :):) 

  • lilpep1972
    lilpep1972 Member Posts: 80
    #17
    Path report back

    Hello all merry Xmas an happy holidays to all hope all are with there families celebrating this wonderful day.. Anywhooo wanted to share some info and again ask you all for your input as to I'm a total virgin at this lol. Ok so Dr said good news,bad news. Good- all 23 lymph nods that were taken out are negative butttt Bad- they seem to think it went lymph vascular and is now surfing waves in my blood stream :(  I been searching  an looking up everything I can find on this but it's not completely sinking In. Has anyone does anyone know who,what,where,why and when on this lymph vascular? Any and all input would be greatly appreciated... Thanks to all :):) merry Xmas 

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #18
    lilpep1972 said:

    Path report back

    Hello all merry Xmas an happy holidays to all hope all are with there families celebrating this wonderful day.. Anywhooo wanted to share some info and again ask you all for your input as to I'm a total virgin at this lol. Ok so Dr said good news,bad news. Good- all 23 lymph nods that were taken out are negative butttt Bad- they seem to think it went lymph vascular and is now surfing waves in my blood stream :(  I been searching  an looking up everything I can find on this but it's not completely sinking In. Has anyone does anyone know who,what,where,why and when on this lymph vascular? Any and all input would be greatly appreciated... Thanks to all :):) merry Xmas 

    Darn it!

    Not the news you were hoping for. 

    I am sorry, I have never heard of lymph vascular. Its certainly not something we want, cancer flowing through the blood stream.  What has your Doctor suggested as a treatment plan?

    I am sure someone here, with more knowledge than I, will help. All I can do is offer my support and prayers. 

    I hope you are able to relax somewhat, with this news, and enjoy your Christmas season.  

    I am so glad that you are here, and keeping us posted. 

    Sue - Trubrit

Discussion Boards