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Where do you get hope when the doctors are so unwilling to give any.

Fergus2007
Posts: 109
Joined: Dec 2007

My father has been fighting stage 4 colon cancer for a year now.

The most important thing in his everyday life is attitude ... and that little bit of hope.

... yet the oncologist is VERY unwilling to give even the smallest support in that area.

Where do you find the will to fight if the doctor tells you it's useless anyhow (not that he used those words :) but it amounted to the same)

Having read all I can about colon cancer and stage 4 for the past 4 years I just don't think it's as hopeless as it sounds!

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I found hope first, with the doctors. I have changed onc several times (the last time was not due to this issue!)and will change again if need be. I have a wonderful TEAM of docs but I am the head of the team. We have an agreement - anyone who does anything in thought, word or deed that indicates anything other than CURE is off the team! *I* set the goal of the team. *My* goal is cure. I found an onc that agrees and we have assembled a team that agrees.

I have spent many hours with my family showing them how to be hopeful. For me, that is humor. My motto: I won't do anything that's not fun, especially cancer! This could get depressing - ick! We sing, laugh, dance...the more difficult the day the more FUN I need. That's the rule. Yes, we have sad times and talk about all that too, but fun is the focus at home.

Those are the biggies for me and I would start with a new doctor. Not everyone feels the same. That's ok. Your father needs to do what works for him. I just don't see how you can ever achieve cure if that isn't the goal.

Go have a good laugh!

Kimby

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

Get a new doctor...sigh....I HATE these guys that are doom and gloom!!!!

Attitude, and HOPE, do make all the difference. Shame on dad's doc that he/she doesn't support this.....

Ok, now that's out of my system....some doctors in this field can't connect with their patients. I like to think it's because they are trying to shield themselves from loss. I had an oncologist that was a REAL cold fish...luckily, my radiation oncologist took over and gave me the moral support I needed. I have an HMO, so there was little wiggle room for a change in primary oncologists...I always laughed and said my onc went to the 'minimalist school of oncology'....she even got MAD at me when I called to say I needed hydration on a Friday afternoon...

I don't want to presume I know what you and dad are going thru...I was only stage III...but I always took time to laugh at something everyday. Whether it was a comic in the newspaper, a silly movie, or a funny tv show (MASH reruns were on every afternoon), I found something. It also took my thoughts from cancer...I got enough of that stuff from the doctors. I drew from a strong belief that I was part of the 37% that survived my particular cancer...and, at least so far, I am!

Another resource was a patient support gal who worked at my cancer center. She would talk to me about 'normal' things, even the day I came in so weak that I needed a wheelchair to get to my treatment. One step up, there was an actual psycologist at the facility who specialized in cancer patients...the first appointment was free. You might considered that for both dad AND you. Caregivers need someone to talk to, too!

Hugs, Kathi

pamness
Posts: 515
Joined: Nov 2007

My oncologist is too, but I found it interesting you mentioned your radiation oncologist - an often underutilized resource, I think. Both he and his Nurse Practioner have been, and continue to be, a great resource.

If my oncologist and his nurse practictioner didn't have a totally positive attitude, I would have gone elsewhere. Granted, I was IIIA, but am having a number of bumps along the way.

I think, at least for me, if I were to reach the point where continuing treatment didn't make sense, I would know that. To think that my doctors would not support me, before that and during that, is not acceptable.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm not Stage 4, but I find encouragement in everything in life in my faith in God. Prayer is wonderful!

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

I echo what a few others have said- a change in oncologists needs to be made! The attitude of your oncologist is sooo important. I told my oncologist right off from the start that I didn't want to be given anything like, "you have -- months left to live", or anything like that! I was planning on surviving this and I needed to hear some hopeful stories, even if it was just one. My onc did have a great survival story to tell me about one of his patients. He DIDN't tell me about the others that didn't make it. He also told me that there would be many other doctors who would not have been nearly as aggressive in treatment because of the "statistics" (those lousy statistics- they DO mean some people DO survive this & we should all be given the benefit of the doubt that we could be one of those survivors!!)

I am actually looking to change oncologists at this time, but definitely NOT because of my current oncologist's attitude or demeanor, because he's really been great. The reason I'm now looking to change, 15 months after my stage IV diagnsis, is because I realized I need to be at a major cancer center where they're up on the latest and where I will be served by a TEAM (as someone else emphasized), not just an individual oncologist who decides treatments on his own.

Encourage your father to look for a second opinion by an oncologist not related to the group he's currently using. Best wishes to you- THERE IS HOPE!!!

Lisa

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

My motto from the beginning was HOPE. I know I am a 'newbie' (just started chemo/rad yesterday, and was diagnosed only 1 month ago) but I have already fired one doctor (a surgeon) who dared to use the words 'no hope' with me. He wasn't talking about the end of my life, but about the aggressive surgery he wanted to do. When I told him I was getting a second opinion, he actually got mad. Write him off. When I told my two oncologists, they both supported me 100%. My medical oncologist even asked me for the info on my second surgeon, because he liked his approach and wants to refer others to him. Both oncologists also encouraged me to get second opinions on their decisions as well, if I ever feel the need. Right now, I am VERY happy with them both. Also, my original diagnosing doc, the gatroenterologist, is still in the picture and talks regularly with my oncologists.They tell me this openly, and I am happy to have such a well-rounded team.

Get another doctor.

Vicki

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I echo what everyone here says, get to a new oncologist as fast as you can! If your onc has no hope, the treatment options offered won't be aggressive enough nor progressive enough! We are in the process of making new statistics. In order to do that you have to be willing to seek the cutting edge treatments and to be seen by those individuals with vision. Good luck and stay strong!
mary

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

when my husband had a reoccurance and mets to most organs it was my husband who said i don't want to do chemo again ,His dr would not let us leave his office before my husband agreed to try chemo again. His Dr convinced him that there are different kinds of chemo we can try and we must try, your young with many years ahead so we must Keep trying. so my husband agreed but this tuesday if the cancer has not improved he may stop chemo.

michelle

Karmar
Posts: 43
Joined: Nov 2008

Reading your post,Makes me remeber when My dad was Diagnosed with stage 4 as well. His had perforatted the colon and gone into his lympnodes. The gave my father 6 months and sent him home to die. He was 56 years old. My second child had just been born. He agreed to do Chemo. And a bond between my son and my father began. We all were resigned to the fact that my father would not be with us long. Thank God he didnt think that way. My father lived 7 years after his diagnoisis. And actually died from a massive stroke due to a corrted vein his neck. My son who is now 22 years old got a wonderful grandfather for 7 years. So never give up hope for doctors are human and only God knows when it is our time to come home
Karen

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

I agree with those who have posted that one's hopeful (even defiant) frame of mind is of critical importance in battling cancer.

We have been very fortunate to have a wonderful oncologist and a wonderful sugeon who have urged my husband to keep an optimistic attitude and keep fighting. I hope your father will find a treatment team that encourages him to be positive.

Although we have hit a "bump in the road" in the last week with a slightly elevated CEA test reading, my husband and his doctors are optimistic that he can fight and win even if this test turns out to indicate a recurrence.

Here is a post I did a month or so ago about my husband's experience, perhaps you could share it with your father. My husband is also a stage 4 survivor:

October 2, 2008 - 3:40pm
My husband was diagnosed with colon cancer (stage 3) in May 2006. He had a colon resection.

Shortly thereafter, he had a recurrence and was restaged at stage 4. He had months of chemotherapy and another recurrence in October 2007 and another resection. After the October 2007 surgery, the surgeon told us there was no evidence (visual or in testing) of any spread of my husband's cancer when he removed the sizable tumor in my husband's abdomen. We took a very deep breath and hoped that our ordeal was over.

In September 2008, a routine CT scan showed a nodule in the fat layer of my husband's abdominal wall (but no evidence of cancer anywhere else) and a subsequent biopsy showed cancer cells in the abdominal wall nodule. We were devastated to learn that the cancer had returned but all of our doctors (the surgeon and the oncologist) counseled us that this recurrence was confined to the fat layer of the abdominal wall and would be relatively easy to remove.

My husband had surgery last Thursday to remove the nodule. The pathology report from that surgery showed clear margins. The first two surgeries were very difficult but this surgery was much easier on my husband. He was allowed to come home the day after the surgery.

We had a follow-up visit with the surgeon today and he was very positive in his evaluation of my husband's situation. He told us that he felt the recurrence was a result of some microscopic cancer cells that were left in the abdominal wall fat at the time of the 2007 surgery. He said there was no evidence of penetration of the abdominal wall by this cancerous nodule. More importantly, he told us there was every reason to believe that my husband would continue to enjoy good health. Our oncologist told us the same thing.

I'm writing this note because I believe my husband's experience reinforces the message that it is possible to beat (or at least manage) this awful disease.

Like many of you, I suspect, I have considerable cancer "baggage." My father died many years ago of multiple myeloma. His disease was awful and that experience broke the spirit of everyone in our family. Because that happened to my father, it has been very difficult for me to trust doctors (and others) during the progress of my husband's illness. But....my husband's case is proof that there is hope and there has been much progress in the treatment of this disease.

My husband's case also points to the fact that no one, of whatever age, should give up when faced with this disease. One of my fondest memories of our surgeon's interaction with my husband was when, at the time of the 2007 recurrence, my husband told the surgeon "I'm 89. I've had a long, good life. This will be a difficult surgery. Maybe I should just accept my fate and give up on fighting this disease." The surgeon looked my husband firmly in the eye and told him how otherwise healthy he was and encouraged him to fight for his life and for our life together.

My husband will be 91 years old in January.

Hatshepsut

clgregory
Posts: 5
Joined: Oct 2008

I was diagnosed at the age of 43 with stage 4 colon cancer. No history in my family. From the time I was diagnosed I have refused to hear a prognoses and I refused to read about stage 4 on the internet. My doctor let me ask the questions- and I appreciated that. If I am going to fight this I have to do it my way... without negativity. I had colon resection right away and they found cancer in 10 of the 11 lymph nodes- that was hope! I had 2 tumor's on my liver, one was small and one was the size of 2 grapefruits- but they were removable-that was hope! I had chemo and was VERY sick thru it- but I knew when I was done with chemo I was going to have the tumor's removed- that was hope! I had liver resection surgery to remove the large tumor that had shrunk 40%, the smaller one was gone- that was hope! I was to go thru 4 more chemo treatments after surgery- but only had to do 2- that was hope! Fifteen months later and feeling GREAT- the day after Relay For Life- I was told that I had another spot on my liver and would need chemo and surgery- it was small and caught early- that was hope! So here I am today- I had 4 months of chemo, liver resection surgery to remove the VERY SMALL tumor and am currently still in chemo- but I have nothing but HOPE that this is my last round with this crazy cancer!! My family, friends and faith keep me going keep me hoping, they encourage me to not feel sorry for myself, they encourage me to keep my life as normal as possible they encourage me to stay strong. There is hope for stage IV colon cancer and I intend to prove it!~ Hang in there! Cindy-SURVIVOR

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I just want to echo what everyone else has said. Read their posts and really think on what is being said here. We all have had cancer or are caregivers of loved ones who have cancer and it doesn't really matter what stage they were diagnosed at, the reality is that cancer has taken root in our bodies.

Doctors are amazing and intriguing human beings. When things go wrong, physically, with our bodies, we depend on doctors to fix it. With their training and, hopefully, ongoing learning, they are the ones who hold the key to making us healthy again. To be able to do this, they have studied for years, read studies until they are coming out their ears, and then have applied their knowledge to live, human cases. When they are working on our treatment plans, monitoring our progress, changing things if something isn't working out, the expectation of them now switching gears and giving hope, positive stories of patients they've had, etc. is probably next to impossible. It's sort of like asking a plumber who is fixing a massive leak if he can guess at why the light over the front door is flickering. Depending on the plumber, he may just happen to have some electrical knowledge, but the majority of plumbers would have to say, "Sorry... that's not something I have any expertise on".

It sounds like a very simple request to ask our oncologists to give us reason for hope, but for some of them, they are extremely skilled oncologists but not so good on the psychology skills. I am assuming they don't want to come out and say, "Well, if you thought this and these thoughts, you will do fine and beat this cancer!" That is so foreign to them because they deal with statistics. Statistics say "THIS" and for those patients who defy statistics and don't do what statistics say, then they are brushed off as an anomoly... rather than thought of, "Hmmm... maybe this statistic DOESN'T mean this." They leave that kind of thinking up to the researchers who may or may not do a study on it.

So, where does that leave us?? It leaves us with talking to others who have gone through this journey and come out fine on the other end. What did they do to defeat the odds? Was it attitude? Was it a combination of treatments, attitude and support? Was it partly the attitude of their medical team? It's probably a combination of all of the above and then some.

I am 53 yrs. old. I am a Stage IV Colon Cancer patient. I have had a bunch of treatments and surgeries, after being diagnosed as a Stage III. I am still getting used to the label "Stage IV" because in my mind, I have always thought of Stage IV as being the last stage before death... and why would anyone fight the battle when they are so far along. In medical terms, they have "Advanced" cancer. Well, I'm now in those shoes and what is absolutely amazing to me... I feel no different than I did prior to being diagnosed. I feel great! I am busier than ever, even though I'm on Long Term Disability so I'm not going to work... but I'm actually physically and mentally busier than I was when I was also holding down a full time job. My only complaint is the arthritis in my knees (which changing to Celebrex seems to be helping big time there) and my nerve damaged feet. But both those complaints, although they may have been caused or aggravated by chemo, are really non-cancer related conditions.

I do NOT have any cancer-related symptoms, pains, aches, or even meds... yet, I am a Stage IV. I did have my right adrenal gland removed since the cancer had spread to that gland of all places (and yes, that was a rather painful surgery), and now, we are working on what to do with the small spots on the lungs. Since they are so small and slow growing, we are taking our time and seeing if we can have them ablated (burned) rather than going the chemo/surgery route. This takes time since there is only one radiologist in all of BC who does this procedure... but I have time because these spots are not growing quickly at all.

So hope? There is no doubt in my mind that should the cancer show up elsewhere in my body, I will fight it just as I have fought the others... and "giving up" or "letting go" is just not an option for my life.

Chin up and onwards we go!!

Hugggggs,

Cheryl

hopefulone
Posts: 1048
Joined: Jan 2007

Sounds like a change in oncologists might be what your dad needs. It's hard to keep a positive attitude when the person treating you has a negative one. So many advances have been made and so many more will be made. It's so important to keep hope alive. I think some doctors become cynical after a while and just like "ordinary" people some see the glass half empty rather than half full. Get one that looks at the glass half full. Keeping your dad and you in my prayers. God Bless, Diane ( ps.. my husband has surprised his oncologist many times.. so her attitude has done a 360 degree turnaround ). His surgeons are two of the most upbeat and positive people I've ever met. It made a huge difference for us by going to experts who refuse to think the "old way" and are teaching the doctors of tomorrow new techniques and new attitudes. God Bless and keep the faith.

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