Stage 4 colon cancer

[Live And Learn]

Quote:

Originally Posted by MRG I just talked to my Sister today, she has just been diagnosed with colon cancer. It was detected by a colonoscopy. She hasn't informed our other siser of her diagnosis yet. After she does, we will talk about the need for annual stool tests. My Dr. does them right with my prostrate exam. I'm not sure hers would have been detected with a stool test, as it was found in a pallup that was removed. Her Dr. thinks it was caught very early. But she will have to have a section of her colon removed. There's no family history of anything except skin cancer. I encourage all to have the annual tests and regular colonscopy. Some might fear the latter, but it's nothing, the preps not fun, but cancer treatments are much worse than a day spend in the library. MRG

I am so sorry to hear this. Sending good vibes that early detection will lead to a full recovery with no further issues.

[kyounge1956]

I went to pick up a stool test kit on Wednesday, but wasn't able to get one. My primary care doctor had talked with my oncologist, who nixed the screening. I sent an email to my oncologist asking her to clarify what she meant when she told my PCP I shouldn't be screened as with my family history my risk of getting colon cancer is about double what it would be if I hadn't had two close relatives affected, but no reply so far. I hope it is only that the test isn't accurate if done during the kind of treatment I am currently having.

[BigNick]

Quote:

Originally Posted by kyounge1956 That's just my personal view of the matter. Some people with cancer like the metaphor of treatment as a war, with cancer as the enemy. In fact, some people think that their attitude influences how well their treatment works. As far as I know, however, there is no evidence in support of that particular belief.

I strongly agree with this post. There is no evidence, despite what some people who should know better will try and tell you. The fact that it would be wonderful if it were true (that a positive attitude prolongs life) doesn't, unfortunately, make it true. Cancer patients are easy targets for charlatans, including well-meaning charlatans and accidental charlatans. See here for a good polemic post on this topic by a leading figure in psycho-oncology.

[Live And Learn]

Quote:

Originally Posted by kyounge1956 I went to pick up a stool test kit on Wednesday, but wasn't able to get one. <snip> I hope it is only that the test isn't accurate if done during the kind of treatment I am currently having.

That would make sense. Please keep us posted.

[robnplunder]

One mistake my brother made (and regretted) was that he didn't question his doctor's decisions often enough. He gave them too much respect and credit. He trusted his doctors to be looking out for him, which wasn't necessary the case. Doctors have many patients, and most of them merely do their job for $$$. It's amazing how many mistakes they make, forget to communicate key information, overlook MRI/CT scans, etc..

[kyounge1956]

Quote:

Originally Posted by robnplunder One mistake my brother made (and regretted) was that he didn't question his doctor's decisions often enough. He gave them too much respect and credit. He trusted his doctors to be looking out for him, which wasn't necessary the case. Doctors have many patients, and most of them merely do their job for $$$. It's amazing how many mistakes they make, forget to communicate key information, overlook MRI/CT scans, etc..

That is one among many difficult things about being treated for cancer. It used to be that doctors were seen as all-knowing and it was just assumed that they knew best. Nowadays one is supposed to be an "informed patient", but it beats me how it is possible for me to be as informed about cancer as a doctor with four years of medical school plus internship, residency and (I expect for oncologists) additional training in their specialty. There is a series of commercials, I forget for what product, that show doctors trying to do the patient's job and making a complete botch of it, with the voiceover "you wouldn't want your doctor to do your job....why would you try to do your doctor's job?" But as a cancer patient it sometimes seems like that's what is expected of us: the doctor presents one or more treatment options and the patient has to decide which one to go with. How on earth do I know which one is best? A lot of the time your doctor doesn't really know either because there has never been any study aimed at answering the specific question you may be asking to try to decide between them. When I do make up my mind, do I really understand the information I'm basing my decision on, or do I have some sort of fundamental misconception about the treatments or about my condition which is leading me to make a stupid choice? It's frustrating, and sometimes I worry that I will not ask a question that I should, or omit to report some side effect, or make some boneheaded mistake that will cause my treatment not to be as effective as it could be. And as you say, there are also times when a doctor doesn't tell everything s/he knows. That has already happened to me once—a radiologist did not include in his report everything that was visible on my CT scan and, if the omissions hadn't been discovered, I might have decided, based on that incomplete report, to pursue a treatment that would have been totally inappropriate to my actual condition.The omissions were discovered more or less by accident; I asked a question about the scan (not questioning the doctor so much as just trying to understand what was going on); my oncologist didn't know the answer so he reviewed the scan with another radiologist, and then it all came out. OTOH I don't know how the doctors manage to keep track of the multiple treatment options for dozens of patients with different kinds of cancer at different stages and with or without any number of underlying or unrelated health conditions.

And it may be that in the not-too-distant future a lot of the current "standard of care" will be changing because of the new research and treatment approaches that group cancers by the mutations present in the tumor, rather than what organ it developed in. It makes me think of "All Creatures Great and Small" and the other books by James Herriott, and the changes in veterinary medicine that he experienced during his career, when the sulfa drugs and antibiotics came in and made most of what he had learned during his training obsolete.

[imoldernu]

The subject of doctor's skill and patient's responsibility is very interesting, but I believe there are degrees of responsibility for both.

An excerpt from Kyounge1956's post:

Quote:

Nowadays one is supposed to be an "informed patient", but it beats me how it is possible for me to be as informed about cancer as a doctor with four years of medical school plus internship, residency and (I expect for oncologists) additional training in their specialty. There is a series of commercials, I forget for what product, that show doctors trying to do the patient's job and making a complete botch of it, with the voiceover "you wouldn't want your doctor to do your job....why would you try to do your doctor's job?"

My relatively young (35 years old) lady doctor is, in my opinion... brilliant, and the best doctor DW and I have ever had. Concientious and totally dedicated to her patients... and perhaps the most respected physician in the area... with two excellent hospitals. An example of her concern is that our annual physicals are one full hour of Q & A, delving into any possible concerns.
Yet, even with this, before the visit, I spend hours... sometimes many hours on the internet, researching every possible concern. For general look ups, WebMD or Mayo... but for specifics, deeper research into the specialty websites for whatever concerns...
I have the time to do this, but after my own encounter with colon cancer many years ago, would do it anyway. Had I known the symptoms I might have avoided a resection, and three months of recuperation.
Now, when we go in to the doctor for any reason, we know the basics, and understand the symptoms, treatment, (if any), medications and interactions, and most importantly, the medical terms. We then have time to ask questions about what we don't understand, or need more information.
Fortunately (and I realize this is not always the case) our doctor does not take offense, but welcomes the input, as it makes her work more efficient.

Would I self doctor? Absolutely not... After a tussle with an olecranon elbow a few years ago... and reading about dire consequences on-line, it was a panic situation. The doctor pointed out where I had misread the medical journal... suggested I wait three or four months, and of course she was right... fixed itself. So the final word... listen to the doctor.

At the same time, understanding the finer points of a medical issue, doesn't hurt, and unless the doctor is perfect already... may help.

[kyounge1956]

Quote:

Originally Posted by Live And Learn Quote: Originally Posted by kyounge1956 I went to pick up a stool test kit on Wednesday, but wasn't able to get one. (snip) I hope it is only that the test isn't accurate if done during the kind of treatment I am currently having. That would make sense. Please keep us posted.

My oncologist replied to my email. She said I shouldn't interrupt my treatment to have a colonoscopy, which I take to mean they don't like to do routine screening colonoscopies during chemotherapy. She also said, without explaining why, that the fecal test was inappropriate, but it seems well within the realm of possibility that the chemo meds could affect the test and make it give false results. Even if not, maybe they just don't want to be faced with deciding whether a positive test warrants interrupting treatment to do the colonoscopy.

Quote:

Originally Posted by imoldernu (snip)Yet, even with this, before the visit, I spend hours... sometimes many hours on the internet, researching every possible concern. For general look ups, WebMD or Mayo... but for specifics, deeper research into the specialty websites for whatever concerns...

I have to confess I have given up on doing this without really trying. I could spend every waking hour in online research, and still have little confidence that I actually know what is going on, that I understand the rationale behind choosing one treatment over another, that I am avoiding stupid mistakes or that I will know what question to ask to catch any mistakes my doctor may make; and maybe more important than any of those things, I don't think that putting all that time and effort into research, even if I did it absolutely perfectly, would have any major effect on the success of my treatment. And that's not to mention the possibility that, immediately after I had made some major decision about treatment based on study X, study Y would be published with additional data, contradicting X and making its conclusions obsolete.

I guess I have become something of a fatalist. I make the best decisions I can based on what I know at the time, and if I don't have enough facts to base a decision on, I follow a suggestion I got from someone at the breast cancer forum I frequent and take the "path of least regret"—the decision I will regret least, regardless of how it turns out. If my treatment is going to work, it will work whether I spend all of that time researching or not, and if it isn't, all that effort won't make it any more effective at controlling the cancer. I have a subscription to a service that notifies me of upcoming clinical trials that I might be eligible for, and I hang around a lot on a forum for breast cancer patients and get information there about research and new treatments, plus psychological support.

[whitestick]

Quote:

Originally Posted by kyounge1956 I have a subscription to a service that notifies me of upcoming clinical trials that I might be eligible for, and I hang around a lot on a forum for breast cancer patients and get information there about research and new treatments, plus psychological support.

Do you have a link, and is only for breast cancer, or the colon cancer and others as well. It seems that the latest data claims that there are a variety of "abnormalities" within the particular cancer cell, and each of these has an affect on the effectiveness of the particular drug or treatment. Do these upcoming clinical trails indicate which abnormalities and strains of cancer cells that they are targeting?

[NW-Bound]

Quote:

Originally Posted by kyounge1956 My oncologist replied to my email. She said I shouldn't interrupt my treatment to have a colonoscopy, which I take to mean they don't like to do routine screening colonoscopies during chemotherapy. She also said, without explaining why, that the fecal test was inappropriate, but it seems well within the realm of possibility that the chemo meds could affect the test and make it give false results. Even if not, maybe they just don't want to be faced with deciding whether a positive test warrants interrupting treatment to do the colonoscopy.

I think that although different chemo drugs target different cancer cells, a drug used for breast cancer would also stop the growth of a colon tumor if not shrinking it. This would make the internal bleeding stop, and render the fecal test ineffective. A colonoscopy would still spot a tumor, but the prep may not be appropriate now, as your oncologist said.

In any event, it might be too much for you to worry about another type of cancer while you are already under treatment for one already. And I read somewhere that some chemo drugs are indeed used for multiple types of cancer.

[kyounge1956]

Quote:

Originally Posted by whitestick Do you have a link, and is only for breast cancer, or the colon cancer and others as well.

Did you mean a link to the forum I mentioned? It's called breastcancer.org, and is specifically for breast cancer although some other types do come up occasionally because of the inherited types of breast cancer, because breast cancer is sometimes caused by treatment earlier in life for other cancers (specifically chest radiation for Hodgkins lymphoma IIRC) and because at least one drug (tamoxifen) which is used to treat breast cancer can itself cause endometrial cancer. There is an informational website as well as the discussion groups. If you meant the clinical trials site, it's called breastcancertrials.org and is also specifically for breast cancer, but I would imagine there are similar sites to find clinical trials for other kinds of cancer.

Quote:

Originally Posted by whitestick It seems that the latest data claims that there are a variety of "abnormalities" within the particular cancer cell, and each of these has an affect on the effectiveness of the particular drug or treatment. Do these upcoming clinical trails indicate which abnormalities and strains of cancer cells that they are targeting?

Some of the new drugs currently in clinical trials are aimed at breast cancers with specific genetic characteristics, but I think the research on genetic pathways that are similar across several different types of cancer is too recent for any clinical trials which are testing treatments on the basis of that new information to have been completed. To the best of my memory, I've only heard this personalized medicine, as it is called—that is, basing a patient's treatment on the genetic nature of their specific cancer cells—spoken of as something that is coming in the near future, not something that already exists. Also, the same research that is discovering which genetic pathways have gone wrong in order to convert normal cells to cancerous ones has also revealed that even within the same tumor, the cells are not all alike. Cancer cells can continue to mutate over time and that is one reason various treatments tend to stop working after a while.

Quote:

Originally Posted by NW-Bound I think that although different chemo drugs target different cancer cells, a drug used for breast cancer would also stop the growth of a colon tumor if not shrinking it. This would make the internal bleeding stop, and render the fecal test ineffective. A colonoscopy would still spot a tumor, but the prep may not be appropriate now, as your oncologist said.

I looked this up out of curiosity a few days ago. There are some drugs that are used for both colon and breast cancer, but not as many as you might think, and they don't include my current treatment.

Quote:

Originally Posted by NW-Bound In any event, it might be too much for you to worry about another type of cancer while you are already under treatment for one already. And I read somewhere that some chemo drugs are indeed used for multiple types of cancer.

Well, I'm not sitting around wringing my hands over it. Even with the elevated risk due to my family history, the odds are against my getting colon cancer. And like I said, I've become something of a fatalist. But given my "druthers", I'd rather be screened when I can, and hope for an all-clear or at least to catch any abnormality at a pre-cancerous stage so it can be removed before it goes really haywire, than go along in blithe ignorance until I develop some symptom that can't be ignored, and discover at that point that I have a second kind of advanced cancer.