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Newly diagnosed with rectal cancer/wait until November to have surgery?? Need advice, Please.

buddy609
Posts: 5
Joined: Jul 2007

Hi.
My father was recently diagnosed with rectal cancer. He has been told that he would have to have surgery and a permanent colostomy. We don't know the stage of the cancer, but the grade is a "2," neither fast growing or slow, it is in between. The insurance company sent him a 2 page letter explaining what they would cover and what they WOULD NOT cover. They said they would only cover 3 days, when Doc already told him he would be hospitalized for 6-8 days, AND they will not cover the "bowel prep" a day before surgery.
He has since cancelled his surgery date, (which was supposed to be the 23rd.) His concerns are:
1.) What if I don't "wake up" from the surgery? (Even though the general surgeon told him he has never lost a patient, yet in his 30 years.)
2. "I'll just wait until I turn 65 in November, and then Medicare will cover it." (Financial concerns of what the insurance will cover.)
3. "Do nothing and enjoy the time I have left."
He is also grieving the loss of his companion of 20 years, who passed away of liver cancer on july 3rd. (They were diagnosed within 2 1/2 weeks of each other.)
Right now he is feeling despair, overwhelmed, angry, sad, depressed, etc.....
I would appreciate any feedback on what "direction" my father should take and also how family members can help a person in this situation.
Thank you kindly for your response. My best wishes to all of you.
Lori

houseofclay
Posts: 63
Joined: Nov 2004

First, I am sorry that your family is facing colorectal cancer. I am sure this has been a shock for everyone. I will try to address your concerns but feel free to email me off list at aclay@ccalliance.org if you need clarification.

Did your father's doctor mention pre-op radiation and chemo? Many times that is done for rectal cancer to avoid a permament ostomy as well as downstage the cancer. You mention a general surgeon (and I think you might have asked this before) but I strongly suggest the services of a colon and rectal surgeon, assuming your dad agrees to treat his rectal cancer.

Doing nothing will not be a pretty way to enjoy the time he has left. He can treat the cancer and enjoy the time he has left, they are not mutually exclusive. He should challenge the insurance company's decision to only pay for three days as this is not a reasonable and customary time frame. My husband is in an HMO not known for their generosity and even they allowed a 6-day hospital stay. That being said, I have never known anyone to be admitted the day before for bowel prep. If there are other health issues such as diabetes, other kidney issues, etc. insurance might pick up the tab for the bowel prep night but again, I have never heard of this being covered by insurance.

I think your father needs some time to sort out his emotions about his diagnosis. I think a second opinion from another doctor might be a good idea so your father is clear on what reasonable options are before him and also to make sure a permament ostomy is needed. I do not think your father's situation is dire and waiting a few weeks might not be a problem but waiting until November might not be the best idea. I would also call to make sure Medicare will cover this completely if he refuses treatment until he is eligble. I do not have any experience with Medicare but it would be worth a phone call to someone to make sure he does not risk some sort of diminished coverage due to a pre-existing condition or the like.

You are a good daughter for helping him through this. I am sure his response is hard on you since waiting until November, let alone doing nothing, seems like he is giving up before even trying.

Andrea

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi Lori. The 3rd option you write...quote"3. "Do nothing and enjoy the time I have left." ....worries me a little. This seems a little pre-emptive. Has your dad been told of his projected prognosis. This statement seems to imply that the cancer has gone too far for hope of recover?
Could you clarify this. Is it possibly meaning that your father is indicating that at his age why bother about doing surgery because he is 64 and that at that age most of us know that our lives won't be much longer anyway. Sooner or later we will die.
I suspect that there is more to this than just the cost Lori. That may seem like an unsympathetic statement but there may be other issues. For example; I wonder if the passing from cancer of his companion has a lot to do with his indecisiveness? I would imagine the dx of cancer has hit him hard and that he may well have the opinion of.."why bother...I am sad, lonely and depressed". All this emotion might be a reason for him to give up right now. I don't know Lori....just guessing here.
Thank you for coming here and welcome. I hope that with some more info from you our friends here can help you to help your dad. All the best from oz, Ross and Jen

buddy609
Posts: 5
Joined: Jul 2007

HI.
Thank you for your responses. To answer your questions:
To Andrea:
My father did see an oncologist last week who did suggest pre-op radiation and chemotherapy. She recommended that he go to "Froedert" hospital in Milwaukee for an "endorectal ultrasound" to determine the STAGE of the cancer, so she knows how to best treat the cancer. My father also refuses to get this test as well. His reasoning is: "why should I get that test done and go through the radiation and the chemotherapy before the surgery..I still will not be able to do anything, I won't be able to work, etc., because of the side effects of the radiation and chemo." "I'm just going to wait until November, have the surgery, and get the chemotherapy and radiation after." "Or maybe I won't do it at all."
To Ross and Jen:
He has not been told of his prognosis at this time. I don't think that they can tell him until they know the stage of the cancer.

I don't feel that it is the age factor going on. He is just so fearful of "dying on the table." He is also very fearful of what may happen after the surgery....loss of function, not being able to work.....etc.
I talked with him last night on the phone, and he sounded angry and full of despair. I don't know how I can help him through this. I try to listen and offer suggestions, but it is difficult when someone is so stubborn and angry.
Thank you again for your help.

Lori

collardm
Posts: 6
Joined: Oct 2005

Lori,
I had rectal cancer surgery in Nov 2005. I think it is important for your father to get the ERUS. This is a sonogram that will show the tumor and how far it has grown. This is one way for the Doc to stage the tumor and give your father more information to make a decision on what he does. When I was first diagnosed with Rectal cancer, I got the following book that was very helpful to me. You can get it at Amazon.com.
"Positive Options for Colorectal Cancer: Self-Help and Treatment" by Carol Ann Larson

Good luck,
Mark

davidsonxx's picture
davidsonxx
Posts: 137
Joined: Mar 2007

I am both a caregiver (in the past) and a cancer survivor. I can try and give you a little perspective from both sides.

The first time I had to be put to sleep for surgery I had the same fear of not waking up. It was and is a bit irrational but it was a real fear all the same. A colon resection is a major surgery and there are risks. Don't try to minimize the risk or his concern. However it might help to show him some other statistics to help put it in perspective. For example the chance of being in a serious car accident but you still drive your car. That was what helped me realize that I was a little irrational in my fear.

I also strongly recommend a colorectal surgeon. If the sphincter muscle can be saved there are options other than a permanent colostomy. A colrectal surgeon is the most likely to be up to date on these procedures. In addtion he will have more experience with this type of surgery and therefore more likely to be able to save the muscle.

When my mother was first diagnosis with her cancer her initial response was do nothing and enjoy the time I have left. As hard as that is to accept it was her choice to make just as it is your dad's choice to make. In part my mom's decision was based on the belief that any kind of treatment would make her so sick she would wish she was dead. That was not true. We were able to show her that not everybody gets really sick from the treatments and she could stop them at any time. She agreed to give chemo a try.

Have they done any other testing such as ct or pet scans? Has he talked with an onocologist? It is pretty common for there to be some chemo and or radition treatment prior to surgery for rectal cancer. I had a short course of radiation before surgery for my rectal cancer. If the cancer has spread delaying treatment until November is probably not a good choice. However if he is getting some kind of treatment for the cancer just delying the surgery until November probably would be OK. The onocologist would be best able to answer those type of questions.

I don't know much about Medicare but since he already has a diagnosis it is a pre-existing condition. I don't know if Medicare has any type of reductions or exclusions for pre-existing conditions.

I can only imagine what you dad is feeling. It is hard enough dealing with a cancer diagnosis by itself. To also lose someone close to you at the same time is really hard. Most of the emotions you list for your dad I also went through when I was diagnosised. It just takes time to come to terms with it. Since your dad is also greiving it may take him a little longer. Just try to be supportive and not pressure him into decisions. You have come to one of the best places to get information. There are a lot of us here that have been were your dad is now. We can give him first hand accounts of what is was like for us. If he has any questions we may be able to help with those too.

Don't forget yourself. Caregivers need support too. I think being a caregiver is harder than having cancer. Be sure to find some support for yourself as well.

houseofclay
Posts: 63
Joined: Nov 2004

Thanks for the additional information about your dad's situation. It sounds to me like he is scared of the unknown--the unknown side effects of the treatment, risks of surgery, etc. I think maybe he needs some time to adjust to the news. Another couple of weeks is not going to hurt anything since he might decide to wait a few months to act. As hard as that might be to hear, maybe if he takes a couple of weeks to digest all that he has heard, he might be in a better decision to make the treatment decisions.

LOUSWIFT
Posts: 372
Joined: Aug 2006

The days of just doing surgery are getting to be very rare. He should have a team advising him what is best to do. This requires testing. Its important to know the exact location and what damage has been done. I'm a little surprised without these tests that the doc would make decisions on your Dads treatment. I would suggest a second opinion. Cancer is expensive to treat but a lot can be done before November to treat the cancer prior to surgery. Your Dad is afraid and depressed with all the other emotions that come with this. He needs to direct his efforts to the cancer. You can count on one truth "enjoying the time left" is limited by the progress of the cancer. There are plenty of semi-colons who have fought the fight and have beaten cancer. The normal stay for surgery of this type is about five days to check for infection and to monitor your bodily functions are working again. In other words to get healthy enough to go home. Doing nothing and hoping it goes away would be great if that happens but it doesn't. Houseofclay is right.

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Lori, sorry to read about your dad's cancer. there has been some real good advise posted so i will only address the treatment part. I certainly understand why your dad would want to refuse surgeries or treatments. Fear of the unknown. Before I started Chemo, I created this mental picture of me: 43, skinny as a rake, bald, puking and sick all the time. well..

I am on my fouth try at chemo (4th times the charm- it is really) and I have lost some hair - right now I have a full head of hair. I have lost some weight, I have also gained some weight, then I lost some, then I gained some, you get my point. I have also felt sick. Today I feel like crap and i am not to far from the bathroom - but.... for the last 8 days I have been out at the lake- boating, spending time with my 3 kids and my fantastic partner or 20 years and feeling pretty darn good. I have had a few drinks, laguhed more than a few times, cut my lawn, planted a flower bed by my mailbox and done quite a bit of visiting with my neighbors - It is not as bad as it sounds.

Cancer can kill us long before we die - or It can be a part of our lives. for some, it goes dormant and the chemo or alternative treatments work and we never deal with it again. for others, it is a part of our life and is active on and off for a long time. WE have to choose to live with the situation we have. I hope your dad chooses to Live.
In the end, he is your dad and you gotta Love him for who he is.
I hope you an your dad find some peace within
Limey. a former Wisconsinite converted to Minnesotan. go figure.

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