new to the group/cancer

robertwoitas · October 2008

Hello all, I'm Robert, 47 years old and was diagnosed with stage 3 rectal cancer on May 16th, 08. I have had 7 weeks of radiation and chemo (Xeloda). Had terrible pain from burning at the anus (felt like trying to pass shards of glass), But the pain has since subsided (thank GOD). I am scheduled for surgery on the 13th of Nov.

I am a husband and a father of three (14, 13 adn 10). My biggest problem in dealing with this is my family. I kills me that the kids might have to grow up with out a father and my wife with her friend. I try to keep them informed and to keep the daily routine so they dont worry but there are days when they will do or say something that shows me they are scared. On day we were out eating at IHOP when I was telling my oldest son that I will be teaching how to drive soon, whe my 10 year old daughter started to cry. When asked why she was crying she asked me if I would still be alive to teach her to drive. Those are the hardest times.

Due to the location of the tumor I was told I will have an Iliostomy (hopefully only temp). Then I will start 6 months Chemo in Jan 09. I am scared of the surgery an dthe recovery and if I will be able to return to work quickly (3 weeks).

I am a retired disabled veteran so at least I get free treatment at the VA. I dont know how everyone deals with the financial end of all this.

claud1951 · October 2008

Welcome Robert
Robert, all though it is not a good thing to have to meet in here, I'm glad you found us. You've come the to the right place.

I had Stage 3 colon cancer, in my ascending colon. Surgery to remove 12" of colon and 6 months of chemo. As of Dec 07 I am NED (No evidence of disease)! I can't talk to you about the iliostomy or the rads, but there are people, here, that will tell you their story and their success, and concerns.

Yes, it's hard for everyone involved. Just keep on with your Great Attitude. That is a big part of it. It's all new to them, as well. Just as long as they are not afraid to ask you anything. And, let them do things for you. That is important because they want to help you in some way and don't know how. I'll be honest and say that was the hardest part for me because I hate to ask people for things. I learned to ask..it made both of us feel better when that happens.

My surgery went very well. In the hospital for 5 days then recovery 6 weeks (that is usually a normal recovery time). There are people that have worked during recovery. (I happen to be retired. ).

You'll have to let us know what chemo you'll be on. We can tell you what effects you might look for. We are all different with chemo's. Something that affects one person may not affect you but at least you will knowwhat to look for. Always talk to your Onc about any side effects. Always drink lots of water. There is more but will let you know once you tell us what chemo you are going to be on.

Your wife can even come in here and talk. Your spirits will lift once you hear from other's in here.

My thoughts are with you and your family. Always keep your energy for moving forward!

Claudia

ldot123 · October 2008

Hang In there
Hi Robert,

Sorry you had to find us, but as Claudia said, it is a great place to share information and get positive feedback from others who have had to go through this. You have a TON of hope. I read about many, many people who are free from disease even with a diagnosed stage 4. I was stage 3 colon cancer, ascending colon, had 2 lymph nodes positive. Had the ascending and part of transverse removed, had my chemo and now a year and half later am still NED. I won't say it has been easy, but you can and will get through this. Stay in touch and let us know how you are doing. Cheers, Lance

msccolon · October 2008

There's an echo in here!
Welcome to the most populated unpopular club in town! We semi-colons are a tough breed and there are many of us with stories to prove the odds wrong! I am a Stage 3B, 2 positive lymph nodes, diagnosed in 2004, recurrence in 2006 and currently NED! It's been an interesting ride, but friends and family will be your life blood. Yes, surgery is scary, as is the chemo, but once you have begun the fight, the fear of the unknown goes away and you become a survivor. You have children to fight for and goals to reach! Not only do you want to be here to teach your daughter to drive, but to walk her down the aisle! Keep strong and may God be with you.
mary

krystiesq · October 2008

a little knowledge is a dangerous thing
Maybe it would help if you approached your kids and talked about what it means to have cancer in 2008. In the 80's if someone was diagnosed with aids, you thought death sentence. Now, people live years and years, for example, Magic Johnson. Cancer, (I am guilty of this) when spoken to someone who has no experience with a family member being diagnosed can be interpreted as a death sentence. Well, this is 2008 and a diagnosis carries a layered interpretation. Yes, it’s cancer. BUT, the drugs today and technological advances make even those who are say, stage iv, able to treat their disease and get it under control and even some acquire the title NED. Like diabetes, for some with cancer, there isn’t a surgical cure but it can be managed now and people live very long lives after a diagnosis. I’ll pray for understanding for your family as you continue your journey.

taraHK · October 2008

Welcome
Hi Robert,

I am sorry you have cause to be here but may I wish you a warm welcome to this group.

I have a similar story to yours: I was diagnosed with Stage III rectal cancer at age 44, when my kids were 10 and 12. I had similar treatment to you (chemoradiation, followed by surgery, followed by more chemo). I have to say the burn from the anus during the radiation was probably the lowest point of the whole journey for me - at least you have that behind you now (no pun intended ha ha).

Good luck with the surgery. My advise is (a) don't be a hero about pain -- good pain relief is essential to good recovery (b) get up and get walking as soon as you can after the surgery. Three weeks sounds a bit optimistic for returning to work -- but depends on what type of job you do -- do you have some flexibility re your hours?

I sure understand what you are saying about your family. Thinking about my kids was (and still is) the toughest thing for me. It has been almost 6 six years since my diagnosis. Although I have had a couple of recurrences (you don't want to hear about that now!), I am still alive and kickin' -- my boys are 16 and 18 now -- young men. I have enjoyed every second with them (including the driving lessons!).

Finally, I certainly hope your ileostomy is just temporary. But, for what it is worth, I ended up with a permanent colostomy. Took a little adjustment but it ain't that bad -- I can still do everything I could before (including swimming, hiking, etc).

Best of luck to you in your journey -- and please feel free to ask any questions on this board -- it is a wealth of information and support.

Tara

JMARIE66 · October 2008

Robert
My husband was
Robert
My husband was diagnosed Stage3B on 11-30-2007. He had surgery on Dec 6th and was back at work before the Christmas holiday. He started Chemo on 1-29-2008 for 6 mths-Folfox. We too have 3 kids 15,13,11. Yes, it was hard, and scary. He did continue to work during Chemo-occasionally having to take a day here or there or work from home. But I think it was important for him to keep his mind occupied and help pass time while doing Chemo. His last treatment was 7-31-08 and his last CT scan was all clean. We see his doctor on the 11 to discuss taking out the port. Please don't look at this as a death sentence. There are so many better treatments and optionsthan there used to be. I am sure reading the boards you see this. We tried to keep life as normal for the kids during this time~and now YES there are days that go by that we don't think about the cancer.
Janet

CherylHutch · October 2008

Living with Cancer
Hey Robert... welcome to the semi-colon club! Not necessarily a club one would think of joining for fun... but guess what, it is a crazy, wacky fun club full of members who totally understand your fears and concerns. Why? Because we've all had similar ones and been through, or are going through, a similar journey as your own.

Now... right off the top! Throw that "death sentence" right out of your head!! I think we've all been brought up to read Cancer = Death. 30/40 years ago, you didn't talk about cancer... it was all mentioned in whispers... because anyone who was diagnosed with cancer was going to die within 6 month to a year. Then, as time went on, the movement to talk out loud about cancer came along. There was nothing to be embarrassed about... cancer should be talked about... but still, it was basically considered a death sentence. Educating people to realize we are now in a new century and the new treatments that have been discovered in the last 10 years for colon cancer alone, is incredible!

Like was mentioned above... if you were diagnosed with AIDS in the 80s, you knew that you had no more than 2 years to live... that was the maximum. Now, people don't die of AIDS, they "live" with AIDS. The drug cocktails they have now for AIDS are, without a doubt, incredible. And that is what it is like with Cancer. We don't have to die of cancer... we just have to learn how to live with it.

You tell your family that you have just been talking to a whole heap of people who have cancer and are healthy and happy. I've even told my doctors that -- "Look, I'm as healthy as a horse... my only complaint is I have cancer!" I'm not sick. I'm not going to be sick. But I do have to follow the treatments so that the cancer doesn't take over. And that's how we deal with it. If something pops up, you are now being watched like a hawk so they'll catch anything new in the very beginning stages and will treat that. It's quite possible that after your chemo, they will have nipped it in the bud and you will be NED (no evidence of disease) and will go on your merry way, just keeping up with your annual checkups.

You tell your kids that they haven't seen the last of you yet by a LONG shot

You can be honest with them and tell them that you do have to have some surgery and you will be starting chemo in the new year, but explain to them that chemo is just a drug/medicine. Explain it to them in terms that they can understand... like, if you have a headache, you take an aspirin. If you have an infection, your doctor will prescribe an antibiotic medicine. If you have cancer, then you will be prescribed chemo medication. Aspirin, antibiotics and chemo can all cause tummy upsets or make you tired... but it's no big deal since you know the reason you are taking them is to make you better.

Once kids realize that Cancer is treatable and it doesn't mean you are going to die, they will be able to relax. You tell them that you are going to be around to teach them all to drive and then once they are married, you are going to be around to play with their kids.

As for going back to work... 3 weeks is rushing it I think. It has absolutely nothing to do with cancer... it's recovery from surgery. I reckon that you will probably be feeling quite perky 2-3 days after the surgery... and part of that will be because you are so relieved that it's done and now behind you. But you are still human... you have to physically recover from the surgery. Standard recovery time is 6-8 weeks. If you rush it, you can get complications from the surgery, like hernias, infections, etc. So you really don want to put yourself through that

Ok... enough babble... welcome aboard!! You will be one of us and live a long life to tell others newly diagnosed that we are in it for the long haul

Huggggggggggs,

Cheryl

tootsie1 · November 2008

Hi, Robert
Robert,

So sorry you have reason to be here, but I'm glad to know you and want you to know that we all wish you well and pray that this journey will be as easy at it can be for you. I'm sure that your family is your biggest concern, and I pray that all of you will have peace in this new phase of life. Come by often to find encouragement and information. This is a fabulous group that will be very helpful to you, I think.

*hugs*
Gail

robertwoitas · November 2008

taraHK said:
Welcome
Hi Robert,

I am sorry you have cause to be here but may I wish you a warm welcome to this group.

I have a similar story to yours: I was diagnosed with Stage III rectal cancer at age 44, when my kids were 10 and 12. I had similar treatment to you (chemoradiation, followed by surgery, followed by more chemo). I have to say the burn from the anus during the radiation was probably the lowest point of the whole journey for me - at least you have that behind you now (no pun intended ha ha).

Good luck with the surgery. My advise is (a) don't be a hero about pain -- good pain relief is essential to good recovery (b) get up and get walking as soon as you can after the surgery. Three weeks sounds a bit optimistic for returning to work -- but depends on what type of job you do -- do you have some flexibility re your hours?

I sure understand what you are saying about your family. Thinking about my kids was (and still is) the toughest thing for me. It has been almost 6 six years since my diagnosis. Although I have had a couple of recurrences (you don't want to hear about that now!), I am still alive and kickin' -- my boys are 16 and 18 now -- young men. I have enjoyed every second with them (including the driving lessons!).

Finally, I certainly hope your ileostomy is just temporary. But, for what it is worth, I ended up with a permanent colostomy. Took a little adjustment but it ain't that bad -- I can still do everything I could before (including swimming, hiking, etc).

Best of luck to you in your journey -- and please feel free to ask any questions on this board -- it is a wealth of information and support.

Tara

thanks Tara, it helps to
thanks Tara, it helps to here from someone with very similar circumstances. Due to the tumor being so close to the anus my surgeon said I have a 50 50 chance of a permanent colostmoy. Does it interfere with being able to lift things. I am a Forensic Specialist so i need to carry cameras and collect evidence, so I am worried that I wont be able to do my job. I am the only one in the family working so my income is what keeps us afloat. I have heard nothing bu positive things from this site so it has been a great relief.
How long were you out after surgery befor you felt you could work again ?

VickiCO · November 2008

Another newbie pulling for you
Hi Robert.

Sorry to meet you here, but glad to meet you. I was diagnosed on Oct 22, and just yesterday told I was stage 3. My tumor is also located too close to the anus to easily cut it out, so I am still mulling those thoughts over.

I don't have much to add, except I have found this group to be so supportive and knowledgeable. We'll all get through this together.

Hugs, Vicki

KathiM · November 2008

WOW! A veteran...and of this, you will be, too!
As has already been said...cancer in the 'nulls' (2000's) is not a death sentence!!! There is soooo much more knowledge out there!!! Your daughter will be able to hand you her children when they get fussy!!!

I am a stage III rectal survivor. 2" tumor in the first rectal fold. One surgeon gave me a 50% chance of a permanent colostomy. I found another that gave me a 3% chance...just by calling around to the GI surgeons and asking who they sent their low bowel resections to. I was hooked up during my surgery, having lost my entire rectum and sig colon, with a 'new' rectum fashioned from my descending colon. (Interesting, the only lasting side is from the loss of the sig colon...this is the propulsion unit...I just have to push a bit to get things started!).

My cancer was actually squamous cell anal cancer, a bit confused, up in the rectum. I was lucky...because this type of cancer is HIGHLY sensitive to radiation...it shrunk all the way to nothing before my surgery!!!

I thank you for your work in the forces...this is just a bit more fighting...

Hugs, Kathi

pamness · November 2008

KathiM said:
WOW! A veteran...and of this, you will be, too!
As has already been said...cancer in the 'nulls' (2000's) is not a death sentence!!! There is soooo much more knowledge out there!!! Your daughter will be able to hand you her children when they get fussy!!!

I am a stage III rectal survivor. 2" tumor in the first rectal fold. One surgeon gave me a 50% chance of a permanent colostomy. I found another that gave me a 3% chance...just by calling around to the GI surgeons and asking who they sent their low bowel resections to. I was hooked up during my surgery, having lost my entire rectum and sig colon, with a 'new' rectum fashioned from my descending colon. (Interesting, the only lasting side is from the loss of the sig colon...this is the propulsion unit...I just have to push a bit to get things started!).

My cancer was actually squamous cell anal cancer, a bit confused, up in the rectum. I was lucky...because this type of cancer is HIGHLY sensitive to radiation...it shrunk all the way to nothing before my surgery!!!

I thank you for your work in the forces...this is just a bit more fighting...

Hugs, Kathi

I have seen your many posts -
And admire your strength and tenacity. Where were you treated? I had colon cancer, and am OK at the moment, but I have a friend who was treated for rectal cancer (at age 32) and am wondering at her treatment and does she need another opinion. She is being treated at Mass General. Can you let me know. I don't know how to get private e-mails on this new site my e-mail is ptrefler@trefler.com. Kathi, I would really appreciate a response. Thanks,

Pam

johnnybegood · November 2008

welcome
hey robert im a newbee also 44 years old with rectal cancer.im also on radiation and chemo(xeloda) im on my 3rd week of 5 then on to surgery just like you. hang in there this club is the best thing i(really my mom)found. im not much on computers but i manage to get on between my 14 and 19 year old. try the chat room its really fun,maybe i can chat with you there.keep your spirits up and i will too. again welcome Debra aka johnnybegood

taraHK · November 2008

robertwoitas said:
thanks Tara, it helps to
thanks Tara, it helps to here from someone with very similar circumstances. Due to the tumor being so close to the anus my surgeon said I have a 50 50 chance of a permanent colostmoy. Does it interfere with being able to lift things. I am a Forensic Specialist so i need to carry cameras and collect evidence, so I am worried that I wont be able to do my job. I am the only one in the family working so my income is what keeps us afloat. I have heard nothing bu positive things from this site so it has been a great relief.
How long were you out after surgery befor you felt you could work again ?

should be OK
I returned to work about a 4-6 weeks after surgery -- but my work doesn't involve much physical demands and also I had a somewhat flexible schedule. I guess you'll need to check with your docs etc regarding heavy work but I have certainly heard of others who have been able to do so after colostomy (firefighters, etc.). I was quite involved with a couple of boards (like this one) specifically for colostomates which were very helpful for me in the couple of years after my colostomy. Like this board, full of practical tips as well as emotional support. Of course, I hope you don't end up with a permanent colostomy and won't need to visit them! The person who inspired me the most, in those days, was someone who had gone on a long (several week) whitewater rafting and camping trip! Others had been scuba diving. My lifestyle is a little calmer! but I do hike, travel a lot (including to developing countries, swim, eat virtually anything I want....Oh, and some weight lifting at the gym -- no problem whatsoever in terms of colostomy. Excuse me for being frank/indelicate but also want to let you know that a good 'intimate life' is also completely possible afterwards....

Given that you are facing a chance of a permanent colostomy, make sure you are visited by a specialist (stoma nurse or similar -- they have various names) before the surgery. I think this is pretty routine in most hospitals - part of the preop procedures. They will spend some time with you, figuring out the best placement for the stoma (watch you sit, walk, avoid beltline, etc). Again, I certainly hope this won't end up being necessary for you but you do want the best preparation just in case.

Best wishes,
Tara

blverrette · November 2008

I know what you are going through
Robert,
You have 4 great reason's to fight. I was 36 yo when I was diagnosed with advanced stage 3 rectal cancer. I knew from the beginning that I would have an ileostomy. I really didn't understand what that meant before the surgery. I have had my ileostomy now going on 2 years, and I have 2 girls that are 15 & 14. I went through radiation & chemo at the same time. Then went through my surgery, and 6 weeks after surgery I started my 2nd round of chemo. I finished last round of chemo on 9/26/07 (my youngest daughters birthday). I was given 2 years from my surgeon if I didn't do anything. I am here, and ALIVE. Still giving my wife and girls trouble (in a good way). The awesome thing about colon/rectal cancer it has a 90% success rate if caught early. You are a SURVIVOR, don't every forget that. If you want to talk about the cancer or your soon ileostomy send me an e-mail at blverrette08@cox.net. I am here for you.

Hugs
Brian

Kanort · November 2008

Welcome!
Hi Robert,

I see you have gotten a warm welcome and great information and support from our wonderful group of semi-colons. I am sending you my best for an uneventful surgery and a quick recovery. Please keep us posted on your progress.

Hugs,

Kay

robertwoitas · November 2008

pamness said:
I have seen your many posts -
And admire your strength and tenacity. Where were you treated? I had colon cancer, and am OK at the moment, but I have a friend who was treated for rectal cancer (at age 32) and am wondering at her treatment and does she need another opinion. She is being treated at Mass General. Can you let me know. I don't know how to get private e-mails on this new site my e-mail is ptrefler@trefler.com. Kathi, I would really appreciate a response. Thanks,

Pam

Mass General sounds like a
Mass General sounds like a big place. I am being treated at the Loma Linda VA center in souther Ca. (free for disabled vets.) but my surgeon is from the nearby Loma Linda University Medical Center, one o fthe best in southern CA. so I am happy.
Second opions are OK, I would research the doctors and see what there background/reputation is. If she is comfortable and happy with them I believe that is the most important.
I just got marked today for my stoma placement and am anxiously waiting surgery on the 13th. Good luck to you and I hope the best for your friend.

Unknown · November 2008

This comment has been removed by the Moderator

robertwoitas · November 2008

unknown said:
This comment has been removed by the Moderator

Once diagnosed things
Once diagnosed things seemed to go in slow motion. Tooke two months to set up radiation and chemo and I had to stay in the Long Beach facility for 7 weeks (radiation not available in Loma Linda. But once I started the treatment was good. The surgery will be in the Loma Linda VA (close to my home) and The surgeon has a very good reputaion in southern CA. He is the head of the Loma Linda University Medical Center, surgical oncology dept. (teaching hospital), so I lucked out.
I dont know how others deal with the financial stress cancer also puts on you, I am very glad that I dont have that worry.
Thanks for your support and for your service to the country. VETS rule

new to the group/cancer

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