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Huge tumor in Dad

peach46
Posts: 9
Joined: Oct 2006

I'm new here and this is my first posting. My father was just diagnosed with colon cancer. He had a colonoscopy on Thursday. The tumor was so large and low, they were unable to do the colonoscopy. They think he can be reattached without a colostomy. Dad lost over half the blood in his body and had to have a blood transfusion before the procedure and that's when they realized how anemic he is. The doctor said the tumor is very possibly life-threatening and the family doctor said to "expect the worst." They said when a tumor is that large the prognosis is poor. His tumor is the size of an apricot. I suppose they are trying to prepare the family. We have no idea what the rest of his colon might look like and they said they will feel for lumps during surgery. Monday Dad sees the surgeon and they will tell him what the chest x-ray and CT scan show. I know he's scared even tho he puts up a tough front. He's such a wonderful person, honest and decent. I just can't bear the idea of him suffering. He looks so frail and yet he says he hasn't lost any weight. I can't stop the tears and I don't know how to be strong thru this. We all dread Monday. When the bomb is dropped, is there anything I should know to ask the doctor? I want to be prepared and ask the right questions. Thank you so much for listening and any advice would be greatly appreciated.

houseofclay
Posts: 63
Joined: Nov 2004

First let me say I am sorry about your dad's diagnosis. I am sure this is hard and having the weekend to worry doesn't help. My husband and father-in-law were diagosed with colorectal cancer the same week, so I can understand a bit of what you are going through.

I have a couple of thoughts on your dad's situation but I think it would be easier off list. If you would like to talk, please feel free to e-mail me at aclay@ccalliance.org. Take care and try to enjoy today. Andrea

IzzieCat
Posts: 56
Joined: Jun 2006

Hi Peach......I'm sorry to hear about what you're going through with your dad. Please take a deep breath and try to relax. When I was first diagnosed, I had a large tumor in my sigmoid colon, and I too was very very anemic. They couldn't get past my tumor either to do a full colonoscopy. Long story short, they did surgery to remove the tumor, re-attatched my colon, felt around for anymore tumors, looked around at my other organs, told me my liver looked "beautiful", took 21 lymph nodes, 3 of which were effetced, and told me it was Stage III. From the very start, i was told that with treatment, I have a good prognosis. I am almost done with my chemo, and other than feeling bad from that, I am feeling better than i have in a long time! Please keep the faith, and wait until they do your dad's surgery and have a chance to look around in there. It may be that it hasn't spread anywhere yet....Stay strong for your dad, and think positive!!

Mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Aw, my dear...a sad welcome....only because you have been brushed by the beast!

First of all, make sure someone goes with your dad EVERY time he goes to an appointment. We survivors have a bad case of hearing loss when we see doctors...sigh..

Dad needs to start a folder to keep EVERYTHING in. Labs, paths, colonoscopy pictures (yeah...what do they expect...we are going to FRAME them???). Ask about the treatment options, surgery, pre/post chemo and rads....what type of cancer....and then start surfing the web.

Tell dad this bump just bought him a ticket to eating! He needs to ensure that he does NOT lose weight, if at all possible.

Write down EVERYTHING the docs say...or, better, take a tape recorder.

Call 1-800-ACS-2345. Ask for a cancer dictionary. Usually comes in the Breast cancer 'reach for recovery' package....this is a booklet of all the terms the docs will be throwing around....do that NOW (24/7 this phone is manned..or womaned...hehehehe).

Keep us posted...tell dad that he is now joining the ranks of the semi-colons!

Hugs, Kathi

peach46
Posts: 9
Joined: Oct 2006

Thank you! Even tho I'm crying, there is a sense of relief. I've been dealing with a loss of hope and a sense of aloneness thru this. All of you are amazing people and it's enlightening to hear how upbeat you are even thru the worst of times. I have come to the right place! IzzieCat, thank you for sharing your story about your tumor. You have given me some hope for Dad. I won't walk in there tomorrow with doom written all over my face. KathiM, thank you for making me smile for the first time since the news. I'll order the dictionary and cook lots of food for Dad. Does diet play any role in recovery? That's a great idea to take a notebook and write things down. I had to smile about the "hard of hearing" statement. I do understand that. It's like when they told us Dad has cancer, time stopped still. I don't remember much else that was said after that. So much to learn. It's going to be a long, hard road...

dash4
Posts: 304
Joined: Dec 2005

Hello, I am a caregiver for my husband John. He was in pain that daily increased in August 04. They ran many tests to determine the cause of pain- had found a spot on the liver but said they would do a biopsy later because it could not be causing the pain -then in October 04 they did a colonoscopy and they found a tumor too large to go around and stopped the colonoscopy. They came out to talk to me and everyone around me was whispering and looking sadly at my husband. They wanted to do immediate colon surgery to "save " my husband. To shorten a very long story...I received excellent advice from a friend to do nothing without talking to an oncologist first. I found an oncologist and colon surgeon and liver surgeon--they all worked together. After the pet scan they realized there was a tumor and another spot on the liver where the cancer had spread. My husband was Stage IV...He started with chemo November04 and had colon resection and liver resection and liver ablation done on December 21, 2004. The chemo had shrunk the tumors 20%. He started back on chemo in January 2005. My husband is again undergoing chemo but he would not be here today if we had listened to the first advice we were given. For us, the best advice was getting the whole picture before they did surgery. If you want more info or details-please email me on this site anytime. Good luck to you. You and your family will be in my prayers.
Dash

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Peach,
It is difficult to get that initial diagnosis that you or a family member has cancer. I know for me the first thought was that I was going to die and leave my wife alone. However, seeing the surgeon, and an oncologist as others have mentioned gives you a plan to deal with it. Feel free to get more opinions. A website that has alot of information on the staging and treatment is that of the National Cancer Institute. Just google it and you can get there. It is part of the National Institute of Health.
Good luck, you and your family will be in our prayers as well.
Dick

LLLady's picture
LLLady
Posts: 67
Joined: Aug 2006

Hello peach46 HUGS!
I'm so sorry about your dad, My husband was diagnosed just in Aug of this year.
Your story reminds me of my husband, Same thing happen to my husband Duey he had a tumor the size of a very large lemon low in his sigmoid. he lost 45 pounds in 4 months, They could not complete the colonoscopy. He has had surgery and is doing very good. He had laparoscopic surgery, I had him up and walking the next day. except for the Chemo and radiation making him pretty sick which they say is pretty rare he's doing very good. Please if you have questions that I can help you with please feel free to write me I know how your feeling. HUGS!

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Peach -

I am sorry about your Dad and know what a frightening thing this is.

Scary as it is, it is perfectly normal for a sigmoid colon tumor to prevent completion of a colonoscopy. That fact alone does not really mean any worse prognosis than finding any other tumor.

The large size of the tumor MAY indicate that your father is Stage IV, but that is not at all necessarily the case. A sigmoid colon tumor can often be excised without a colostomy (mine was.

So, please, while I understand your fear, wait for the remaining tests and then please also realize that even Stage 4 disease can be dealt with with surgery and / or chemo.

Betsy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi Peach,

Like everyone else I am sorry you have to be with us but you could not have joined a more knowledgable and caring group of people.

My rectal tumor was also too "big" to complete testing and staging. CT scans showed the cancer had spread to my liver and my left lung. I was given a pretty dismal prognosis but don't remember really thinking much about that. That was 2 1/2 years ago and I am currently NED (no evidence of disease) and have outlived my original prognosis.

Try to stay strong and listen carefully. Come here anytime you need to ask questions or just vent. That is what we do best!!!!!!!

I feel good about your appt. tomorrow and you should too!!!!!!!

Lisa P.

pink05
Posts: 553
Joined: Mar 2006

Dear Peach,

Wow, reading your story brought me back to the time when my dad was first diagnosed. I absolutely know the pain that you are feeling and have gone through what you are going through now. I know that you are very anxious and fearing the worst. Just remember, though, that there are many people with colon cancer that have beaten it. I have been told that the size of the tumor doesn't matter so much as the aggressiveness of it. Some people have tiny tumors that are very aggressive and spread quickly, however, I know someone who had a very large tumor that didn't spread. You and your dad WILL get through this. The most important thing is to get a good surgeon to remove that tumor. I don't know where you live, but try to find someone who may be able to perform the surgery laproscopically. Your dad's recovery time will be cut in half if he has it done that way. Also, when finding oncologists, it may be wise to get more than one opinion. We went for two different opinions and the oncologists we saw had two totally different perspectives. I could go on and on with advice, but maybe it would be better if you e-mail me through this site. Hang in there. Remember that there is hope and that colon cancer is very treatable. You are in my prayers.

-Lee-

valeriec's picture
valeriec
Posts: 350
Joined: Oct 2006

Hi Peach,
I know exactly how you feel. Just a couple of weeks ago I posted on this network for the first time. My mom was diagnosed in May with stage 3 colon cancer. She had surgery and started chemo, but in August we found out that the cancer had spread. She is now stage 4, but doing very well-just in the last couple of weeks. I know this is very scary, but try to stay strong. Coming to this network has helped me so much. So many people are willing to help, give advise, or just listen. Get on the internet and read everything you can about colon cancer. Knowledge is power. I am a true believer in that. Keep your head up and face one day at a time. I know you can do this. Like you, I love my mom so much and hate to see her so scared. But, by becoming her advocate in this fight against her cancer, I think that takes away some of her fear. Please know that my prayers are with you and your family. I also know how it is to go into those doctor's appointments-Just look at your dad. That is what I do. I look right at my mom the whole time, and convey to her with my eyes, that I am there for her and that I love her, and that nothing, and I do mean nothing will ever change that. We will be praying for you and your family.
Valerie C

peach46
Posts: 9
Joined: Oct 2006

I will be leaving in a few minutes to pick up Dad and take him to talk with the surgeon. Before I leave, I want to thank each and every one of you for your support, encouragement, understanding, knowledge/wisdom, hope and prayers. Dad calls it a monster and he wants it out of him! After listening to your stories, I so badly want to get a second opinion. We have not even talked with an oncologist yet. I've read where sometimes its better to shrink the tumor with radiation before the surgery. Dad does "not" want a colostomy. But every new person we meet with is wasting time and that beast is doing more damage to Dad. What worries me the most is the surgeon we have been set up to meet with today is a general surgeon. He is not board certified in colorectal surgery and he is very young. Dad is so focused on getting it out of him that I'm not sure if he is considering other options. I'm afraid to waste time. I have my notebook and questions ready and you can bet I will be back talking with all of you with a lot of questions! Thank you again, you are amazing people and I appreciate your support more than words can express. *hugs*

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Peach -

Hope the apppointment went well today.

Two things:

1) Although this seems URGENT, you do have time to find a colorectal surgeon - don't know where you live, but at least around me, there are tons of them and most of their surgeries are surprises from new patients, so it is not usually difficult too get an appointment. I think I would talk with a colorectal surgeon before I scheduled surgery, rather than just go with a general surgeon.

2) As I understand it pre-surgery radiation is done mostly for rectal tumors - reducing the tumor size may help preserve rectal function and avoid a colostomy during surgery. I could have this wrong. I know that my tumor's location in the sigmoid colon caused my surgeon to tell me that there was virtually no chance of a colostomy - not low enough down - and the tumor was "huge".

My situation was considered serious, needed to be taken care of right away (which my surgeon defined as within 2 weeks), but while hectic, that 2 weeks still gave me time to come to grips, have blood tests and pre-op physical, get a CT scan (which unfortunately suggested liver met) etc.

I did not actually meet with an oncologist until I was in the hospital after surgery - and then I didn't have a serious meeting until 2 weeks post surgery.

Wishing the best for your Dad,
Betsy

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Peach,

I hope that by now you have more information. Getting a second opinion is always a good idea, but I do understand your Dad's feeling of urgency. Please let us know the outcome of his visit today. Your dad will be in my heart and prayers.

Hugs,

Kay

peach46
Posts: 9
Joined: Oct 2006

Dear Friends,
Dad saw the surgeon and the lung x-ray looks good, his heart looks good. There are a couple spots on the liver but those could be cysts but they won't rule out cancer becuz of the colon. The surgeon feels an urgency to remove the tumor as quickly as possible becuz of the serious obstruction and its size. He said Dad will be totally obstructed in a very short time and that can penetrate the wall so it needs to come out. They are concerned about getting him cleaned out enough for the surgery and if they can't, they will do a temporary colostomy to avoid infection. Starting now, Dad is preparing for surgery on Wednesday morning. The surgeon said if there is a large mass in the liver they will remove the mass during surgery but if there are several smaller spots they will use chemotherapy. He talked about a PET scan for the liver but even tho he explained it to me I wasn't sure what it was. Dad will have anesthesia, an epideral, nose tube and catheter and be in the hospital for 5-7 days. He will start chemo 2 weeks later and possibly radiation. The surgeon said he was going out on a limb to say it probably has spread to the lymph nodes. I'm still unclear why they "might" use radiation. Dad will probably need another transfusion before surgery, he has lost about 20 lbs in the last 2-3 months, he is still very anemic so these are some concerns. There will be a urologist on hand the day of the surgery in case the tumor has spread to the utethra/ureter so he can reattach if they need to remove anything. We won't know what stage Dad is in until after surgery. Seems there is a team of surgeon, urologist and oncologist. Even tho we face a lot, I feel relieved that his lungs are ok and possibly his liver...we keep praying. It's taking a toll on Dad (all of us) but he stays in good spirits.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi peach:

I am sorry we had to meet under this set of circumstances, but hey, you've come to the right place.

First off, what a loving and resourceful daughter you are. Know that you're now a part of our survivor family and we are here to help you and father through this.

That old addage about size - well, it's not everything. I had two tumors, the bigger one was 5cm x 9am, more like 3 apricots - a huge sucker. But somehow it didn't spread to the nodes or anywhere else. So, not until you get the postive nodes path report, don't imagine the worst.

I also lost 20 lbs and was severely anemic just before the surgery, but some iron supplements and lots of chicken took care of that. I am now carrying 10 lbs of chemo fat :)

To the doctor who said to expect the worst, I would look him in the face and say that you're expecting a miracle everyday. Shouldn't he do more good by prescribing hope instead. Anyway, work with the surgeon, the gastro guy and the onc. Family doctors are not the ultimate experts on the subject. Mine misdiagnosed me for 8 months.

These next few weeks are going to be dizzing with doctors, tests, decisions. I agree with Vinny, the thing to do is to just to take it one day at a time, not assume anything, but question everything. This is a great forum for getting first-hand information. Come here often.

Hmmm...on post surgery care...walk walk walk! The sooner/more you walk, the sooner your intestine/colon will wake up, and the sooner you'll hear the thunder and get the movement :) The sooner you complete the food-in-poop-out process, the sooner you go home.

Other things I had in my survivor kit:
1. Lance Armstrong's book - It's not about the bike.
2. Dr. Andrew Weil's book - Spontaneous Healing
3. Patrick Quillin's book - Beating Cancer with Nutrition
4. Emily's juicing recipes

And most of all, just really really believe in healing and expect a miracle everyday!

Please please keep us posted on your father's progress and please please get him to participate on the board himself!

Ying

LOUSWIFT
Posts: 372
Joined: Aug 2006

Isn't it strange how our tumors seem to be size classified metaphorically as fruit. Mine was a plum. Regardless you sound so much like my daughters when they found out about me. Let me just say your Dad will have a difficult road ahead and from what you have said of him he can handle it. So will you! Of course he's scared but probably for reasons that only Dad's understand. My buddy across the street had a orange sized tumor which had blocked his colon. He went through alot and 13 years later he hasn't seen cancer again. His daughter just graduated from University of Michigan. My point is I know you're scared but there are survivors all over here and beyond. KathiM is right I can tell you how many Doctors I've seen and I don't remember much of what they said. Always record labs/tests/doctors/ and be proactive in getting results and information. The professionals are too busy. Help your Dad in all this but manage his care without making him feel like he's being managed. Daughters know how to do this just don't let emotion make you forget. Dads like to be the strong ones in charge even though when it comes to daughters we know we are not. You said it yourslef in so many words that you Dad has been there for you be strong for him. We all will help!

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

....and after all that chemo I feel I have a pea size brain :)

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