Stage IV Questions-Do Doctors Know What They're Doing?

smartinlp

Another newbie to this list. I just started reading through this threaded discussion list this evening and this is exactly the type of forum I have been looking for on the web. My mom was diagnosed with colon cancer in the summer of 2002 at age 58. Surgery was performed, part of her colon removed, 18 lymph nodes were sampled and came back clean. NO CHEMO was recommended as the pathology report was good. She proceeded to have her CEA level checked every 3 months. Each time, the CEA level was considered in the "acceptable" range. Last month, just one year after surgery, BAM, she is now in Stage IV - her liver has 6 spots total on both sides; her left lung has several growths in the lower left lobe (1 1/2" is the largest there); her right lung has multiple growths in the upper right lobe; multiple growths were detected in the mediastinum (tissue between/around lungs); and cancer was detected in atleast one or two lymph nodes in the chest. My first and still current reaction is to go and kick her surgeons you know what. Why was chemo not recommended after her surgery last year? Why was testing her CEA level the only tool used to measure whether or not the cancer was spreading? My mom is taking it like a trooper. She says she is not going to go easily, but she has no right to complain as she has led a blessed life. I wish I would have dedicated more time last year to learn the in and outs of this disease. If I had, maybe my family would not have received the shock of their lives this month. We listened to the doctors last year, maybe out of ignorance, maybe out of liking the answer they gave us last year (she was clean). Now we're paying for it. I now spend endless hours reading up of the disease, treatments, anything and everything that I can and then forward to her. More importantly I "screen" through the stuff that I find so she doesn't see all the terrifying things I do on the web - which brings me to writing this message. While I continue to research the web and read postings on this site from you good people, the best thing I can do for my mom is forward her positive success stories from people with Stage IV and particularly those with colon cancer that spread to both the liver and the lung. Whenever I send her an email about a success story I find, she points out that it only spread to the liver or just one other organ-and that's not my situation (she has it in more places). Any supportive/inspirational websites, books, articles, personal stories from anyone in this discussion group would be great. She had her mediport put in today and starts a chemo regiment of 5FU with Camptosar tomorrow at 3 days of treatment every 2 weeks. God bless all of you fighting the good fight right now and having the courage to share your stroies here. I apologize for the long winded message, but when I registered for this group it said I could vent :-) Thank you in advance for your help. BTW, is anyone aware of the article the floated around a month or two ago about SpongeBob Squarepants. SpongeBob was clinically proven to improve depression in patients who participated in the test. No lie. That seems to be true here as well.
A very concerned daughter. Sherry

StacyGleaso

Hi Sherry...

The Calvary is here! You will find that so many who write opinions, advice or comments here may have a little more knowledge than the average bear. We have all been there in some form or another. Either a survivor or caregiver. Each has a different version of what goes on, perhaps a different way of taming this beast, but we all are genuine and have only the best intentions.

I was stage 4. I was diagnosed at age 33, with a colon tumor. Had 6 weeks of pre-surgery chemo and radiation, then a 10 hour surgery. It wasn't noticed until my surgery that it spread to my liver. As a result, 40% of the liver was removed. 2 lymph nodes were also affected. Following the surgery, I had 6 months of clean up chemo. Then, I had a second surgery to reverse the temporary ileostomy that was in place from the surgery. Coincidentally, yesterday, I had my 2 yr follow up colonoscopy, and learned that that region is now cancer-free.

So there is your happy story for the day to give to your mom. I had the same chemos she is getting, plus one called leuvorican (sp?). I too had the port implanted, which she will be SO thankful for. I still have mine, and will keep in for a few years just to get a safer distance from the diagnosis prior to its removal.

Tell your mom not to give up. Miracles do happen. Everyone is different, and the final outcome will not (cannot!) be dictated by a doctor.

Keep your spirits up, and I'll add you to my ever-growing prayer list...it can't hurt!

Stacy

P.S. Yeah, a daily dose of SpongeBob is something we all look forward to!

Unknown

Hi Sherry and welcome to one of the most upbeat sites on the web for colon cancer patients, survivors, and caregivers. What brought me to this group was the bunch of doom and gloom boards that I viewed prior to finding this group. I would get off the web totally bummed out, depressed, and in tears.

My husband was diagnosed stage III July 2003 and so far, THANK GOD, is doing quite well. Also, my mother was diagnosed last September 2002 with stage III inoperable lung cancer, a real doozy, so I completely understand your pain, frustration, and worries. I also understand your anger and in my humble opinion, you did nothing wrong in accepting the doctors words as presented. My husbands dad died of colon cancer at the ripe old age of "57" twenty-five years ago. Being aware of this, my husband started colon cancer screening at age 43, faithfully going to get the recommended sigmunoscopy (?spelling) as well as all other tests plus a yearly physical. Everything always came back clean as a whistle...no need for worries. We took the words of the medical professionals as the Holy Grail....and believed everything they said. It sounded good....so why not believe. When my husband turned 50, his insurance company changed to an HMO that advocates and strongly recommends preventive care. As a result, a new physician was acqired and upon seeing my husband for the first time and checking his medical history decided that it was time for Bert to have the "long version" (colonoscopy) to check his colon. We were both so ignorant and naive that neither one of us even knew what the heck the "long version" was. Be that as it may, Bert went and low and behold, whammo! On the right side of the colon, in the cecum colon right where the colon and the illeum (small intestine meet), there was an advanced tumor that had already spread through the bowl wall and taken out 4 lymph nodes. Additionally, there was also a second tumor in the small intestine. Both were removed, clean margins, etc., but because of node involvement, stage III diagnosis and six months of 5FU/Leucavorin. The surgeon who performed the operation stated that Bert's tumor had been growing for no less than 5 years!!!! Talk about anger....talk about disbelieve...I can't write or think of enough adjectives to describe how we felt. It all could have been avoided, and my anger seethed.

But, alas, that is all in the past and cannot be undone. I have given up wasting my energy on the anger towards the past and have focused that energy on providing support to my husband and my mom, who are both fighters and again, doing very well (for now) and will hopefully continue to do so.

Stacey and SpongeBob are two of the greatest people on the face of this earth (as are many, many others on this board). Stacey, being a stage IV, is an ispirtion to us all...if she can do it...heck, we can at least all give it a try.

Hang in there with your mom...come to this board and vent....Lord knows, I do. I'm dealing with it on two different fronts and I personally know of people who are doing the same. And while it is not easy for any of us who are caregivers because we feel so totally helpless, there is comfort in knowing that we are not alone and it helps to get us out of our "why me" mode into a positive approach mode. So again, you hang in there and as Stacey so well said, results are different for each of us and all the doctors in the world cannot predict what those will be. Have faith, hope, positive thoughts, and lots and lots of prayer.

Monika

WLawrence

I also am stage4 rectal cancer with mets to the liver and a permanent colostomy. I suggest you go to this site It is very active and a lot of info. You may contact me by mail if you wish. Walter http://ourworld.compuserve.com/homepages/suthercon/main.htm

narmstrong

Another newbie and after reading experiences discussed I see how negligent I have been in learning the correct terminology etc. 5 years ago a section of my colon was removed ,no lymph nodes were affected and the surgeon was quite matter of fact that things were O.K. He did send me to an oncologist who threatened me with immediate death if I didnot have radiation and/or chemo. I do not respond well to fear as the reason to do something very drastic. The surgeon said it was alright not to have any further treatment as both he and his mother had the same surgery and did not have ant further treatment.
Last Oct I had my gallbladde removed after months of tests and office visits during which there was no diagnosis just vague suggestions that I change my life style.
When the juandice and bilyruben became so apparent I entered the hospital. My gall bladder had one huge stone blocking a duct and other small stones which were all removed with the gall bladder My adult son called the surgeon and was told on the phone " your mother has terminal liver cancer and she has 12 to 18 months to live". This was so shocking that my son rushed to the hospital from out of town arriving there late at night to give me this news and also to find out why I had not told any one in the family. Well nobody told me and I'm the drama queen here. Although I was never convinced of the liver cancer; very little data, only see 2 cases in five years etc,I was pushed into chemo. Did very well for 5 sessions of FU55 and lucavoran (?) and then I descended into chemo hell and am still experiencing the after effects. Teeth falling out, lack of bladder control, symptoms of allergies,irritated bowel,and a whopping bill for chemo not covered by insurance.I also have been told that it is a miracle that I am alive and I should show some gratitude.
Stick with me. I got my records from the hospital.I was not entered in the tumor registry,there was or there was not a cancer conference and even if there was I am not allowed to have a transcript because of the privacy of any other case that may have been discussed.
The same surgeon who spoke to my son told me in follow up that I could take all the radiation and chem I wanted but it would maybe give me a few more months during which time I would be miserably sick. He then stated that there was big money in cancer treatment. When I received the news that I was terminal and prior to starting chemo I started to prepare to die. I tried to move closer to my son so he could help out but I was not very successful due to the fact that I didnot work, had a dog and a parrot was trying to move from Orange County to Los Angeles were it is notoriously expensive. I had just been released from the hosital,I gave up and decided if I was going to die I would just be a big inconvenience until then.
I now am going thru my hospital records and trying to regain a sense of control and posiibly humor. Do doctors know? Is an oncologist with ten recliners in a large quiet offices with specially trained nurses under financial stress to provide patients for those recliners?If there is not really a pressing need or not enough data is the doctor justifyed in falling back on "standard of care" Does it help anyone on this site to know that you did the best you could. Why are we venting on this site and not really feeling better about our decisions? Are we as consumers getting the best information or are we letting insurance companies decide for us because it has already been paid for from our paycheck or premiums? If you are not turned off by my radical views I would like to hear from anyone at any length. These are not issues that can be handled in short takes or buzz words.

spongebob

narmstrong said:

Another newbie and after reading experiences discussed I see how negligent I have been in learning the correct terminology etc. 5 years ago a section of my colon was removed ,no lymph nodes were affected and the surgeon was quite matter of fact that things were O.K. He did send me to an oncologist who threatened me with immediate death if I didnot have radiation and/or chemo. I do not respond well to fear as the reason to do something very drastic. The surgeon said it was alright not to have any further treatment as both he and his mother had the same surgery and did not have ant further treatment.
Last Oct I had my gallbladde removed after months of tests and office visits during which there was no diagnosis just vague suggestions that I change my life style.
When the juandice and bilyruben became so apparent I entered the hospital. My gall bladder had one huge stone blocking a duct and other small stones which were all removed with the gall bladder My adult son called the surgeon and was told on the phone " your mother has terminal liver cancer and she has 12 to 18 months to live". This was so shocking that my son rushed to the hospital from out of town arriving there late at night to give me this news and also to find out why I had not told any one in the family. Well nobody told me and I'm the drama queen here. Although I was never convinced of the liver cancer; very little data, only see 2 cases in five years etc,I was pushed into chemo. Did very well for 5 sessions of FU55 and lucavoran (?) and then I descended into chemo hell and am still experiencing the after effects. Teeth falling out, lack of bladder control, symptoms of allergies,irritated bowel,and a whopping bill for chemo not covered by insurance.I also have been told that it is a miracle that I am alive and I should show some gratitude.
Stick with me. I got my records from the hospital.I was not entered in the tumor registry,there was or there was not a cancer conference and even if there was I am not allowed to have a transcript because of the privacy of any other case that may have been discussed.
The same surgeon who spoke to my son told me in follow up that I could take all the radiation and chem I wanted but it would maybe give me a few more months during which time I would be miserably sick. He then stated that there was big money in cancer treatment. When I received the news that I was terminal and prior to starting chemo I started to prepare to die. I tried to move closer to my son so he could help out but I was not very successful due to the fact that I didnot work, had a dog and a parrot was trying to move from Orange County to Los Angeles were it is notoriously expensive. I had just been released from the hosital,I gave up and decided if I was going to die I would just be a big inconvenience until then.
I now am going thru my hospital records and trying to regain a sense of control and posiibly humor. Do doctors know? Is an oncologist with ten recliners in a large quiet offices with specially trained nurses under financial stress to provide patients for those recliners?If there is not really a pressing need or not enough data is the doctor justifyed in falling back on "standard of care" Does it help anyone on this site to know that you did the best you could. Why are we venting on this site and not really feeling better about our decisions? Are we as consumers getting the best information or are we letting insurance companies decide for us because it has already been paid for from our paycheck or premiums? If you are not turned off by my radical views I would like to hear from anyone at any length. These are not issues that can be handled in short takes or buzz words.

N.Armstrong -

You rock! You have every right to feel the way you do, and I think that taking control of your very messed-up situation is absolutely on the right track. Someone has really screwed the pooch with your case by the sounds of it and you need to take actions to ensure that those people, companies, and policies don't have an opportunity to treat anyone else the same way you've been treated. No buzzwords here and, unfortunately, no real suggestions about a course of action except that I would consult with other medical, insurance and legal professionals about how your case was (mis?)handled.

Best regards

- SpongeBob

spongebob

Ahoy, Sherry -

I don't have a personal story for you - there are plenty of "semi-colons" who do though. My cancer didn't met. My mom has successfully survived colon, uterine, and bladder cancer though! She is now five years out from her latest "adventure" and is "cured". She's heading off on a Caribbean cruise this winter to celebrate.

I haven't seen the article on Sponge Bob Squarepants, but I LOVE it! I would suggest a book for your mom and for you: Chicken Soup for the Surviving Soul. I am convinced it was divine intervention that got me to pick the book up. My step-dad had passed away recently and I saw the book at the store (I'm not... er maybe I should say "wasn't"... one to read Chicken Soup and Small Stuff type books) and picked it up thinking it was about surviving the loss of a life partner. I thought it might be good for my mom after her recent loss. As I flipped through the pages, I was amazed that (1) it is about surviving cancer and (2) there are some amazing anecdotes of personal triumph in it. I learned so much and drew so much personal strength from it as I underwent chemo. It's a great book. One of my personal favorite anecdotes discusses a man who laughed himself well. He was diagnosed with stage IV, and went out and rented all of the funny movies he could get. I don't doubt the healing power of a great cartoon!

The book is good for your mom to keep her spirits up and keep that "attitude" flowing - it will be her most valuable tool as she continues her fight. It will also be good for you and those closest to her as it will give you a glimpse inside her ehad to see what she's thinking and feeling, but not necessarily telling you.

Daughters like you, friends, and loved ones are the best chicken soup during tough times with this disease. You mom is really lucky to have someone like you looking out for her and standing by her. You guys hang tough, keep you 'tude going, and come here to ask, vent or share anytime.

Keeping you in my (also ever-growing list of) prayers.

SpongeBob