How much do you want to know?

[CLD]

How much information about your disease, treatment, prognosis did you want to know??? If you are dx with MS, diabetes, heart disease, your dr tells you everything. Why is cancer different? If I had 6 months, 2 years, 5 years, I would want to know so I could make treatment (or vacation!) plans. I could quit my job and spend time with friends and loved ones or put in more time at the office because I was gonna be here for awhile! Of course the dr doesn't have a crystal ball, but the whole reason they get a pathology report is to determine the possible course of the disease and the best path of treatment. You are paying for that information, for their expertise. In my opinion, it is not their business to withhold information from you because they don't think you can handle it. My goodness, what we spend 30 mins per appt, if that, and they know everything about you and what you can "handle?"

[jhocno197]

My husband didn't want to know anything.
I did, so I would find out and not tell him.
I didn't like his oncologist, because he doesn't tell us anything, really, but, he was ok with the onc.

[Sams wife]

Good question!! I wanted to ask but didn't know how to word it. I've just come to assume that the people that are on this website want to know everything.

But yes. I'll assume you are talking about onc now. I want to know & I've thought about making an appointment with him by myself. I know there's no crystal ball too. I know y'all are in a different situation. I hope all of y'all are doing ok.

I like the attitude of the guy that moved off to the beach living life. He wasn't at very high stage & his cancer is gone, but I'd do it if I could.
The C word is enough to scare me.
I'm just assuming they really don't know at all.
Or " wait for scans a year later & see what happens"

[JDinNC]

It's been two and a half years since my diagnose. At my initial meeting with my oncologist, I asked what to expect, all he told me was.."we will see what happens at two years". The last time I talked to him was last May and my two years has come and gone..to this day he has never Enlightened me about anything regarding my cancer. If it wasn't for this site, I would have never learned so much about my disease and what to expect and what those two years really meant. I wanted my doctor to tell me about my prognosis but he didn't seem to think it was important at the time. How does one fight the battle if one doesn't know what she's fighting against.

Jan

[GrouseMan]

If you want to know ask, and don't accept no for an answer. It comes down to that. You must be your own advocate! But doctors are not going to be know for certain anything concerning time left, severity of side effects with chemo, or other QOL issues. As you said they don't have a crystal ball. The difference between Cancer, and Heart Disease, Diabetes, COPD, high blood pressure, high LDL, is that I think the doctors have a little better understanding of the effects of these diseases. Generally they don't mutate and change over time, or spread, and effect other organs, or systems like cancer can. Probably the only other disease that is as intractable as cancer is Alzheimer, and unlike cancer, there really at this time no effective treatments in my opinion. Pharmaceutical companies have spent billions on research and have practically nothing to show for it.

Everyone's cancers are different. That is because everyone's DNA and genetics are different. Everyone's multiple mutations that enables them to develop cancers are unique to that person. To be sure there are many similarities. Gross pathological types for example, Breast, Colon, Lung, Hematological, Lymphomas, etc. Within the gross types, there usually are some commonalities. Kras, Braf, EGFr, are common mutations in colon cancer. MSS, MSI status. Even different Mets from their primary will be different from one site in you body vs another. So if you could actually examine every met, and the primary for all their mutations you will find that everyone's mutation profile is likely very different with some commonalities. The various drugs are going to be effective with some, no so effective with others, and the terrible thing is that any new met likely will have mutated further such that different drugs will need to be tried.

The problem is, there are limitations to full genetic profiling. You need enough sample from each met you want to try and treat, in order to select the best drug candidate to treat it. This isn't always possible. You might not get a good representative sample. Even within a single tumor different layers of tumor cells might have different sets of mutations. Also, detailed genetic profiling isn't at all like its shown on TV. It takes time to do the genetic testing. The more detailed the longer it takes. Most tests that are done only look for the most common. They might not even be able to say what the specific amino acid transposition is. As a result oncologists can only make educated guesses. Some do a better job than others.

Now that said. I was a drug researcher for 21 years, most of that time doing Anticancer drug research. I was involved in some of the very first anticancer kinase inhibitors, prior to that I worked on cytotoxic drugs including topoisomerase inhibitors, platinum complexes, and DNA binding drug. In the last 10 years we have learned so much more than in the previous 30 years I believe. The revolution in immunotherapy that is occurring is making the future look brighter than I have ever seen it. A combination of that and new combination chemo drugs including new kinase inhibitors that act selectively against mutant protein receptors may help finally turn the corner. This is a marathon. The goal is to hang in there as best you can to turn the corner with these treatments.

Good luck

GrouseMan

[rp1954]

We don't want to be hammered with yesterday's treatment stats as our predestination, but we do want to know when things are deadly serious and why.
We don't want to be short changed on details. Those that are known spell it out, even if it is complex.
We want to know that there are manifold options, beyond std of care. At least, the possibility.
If diagnostic information is missing or uncertain, we want to know that too, so plans can be made to rectify it where possible.
We want to know about advanced diagnostic techniques that aren't common, or who might know.
-------------
We had problems with drs not being candid the first several months, even out to a year or more, probably in part to not hammer us with bad news that they thought would not be treatable or had some uninformed doubt. Partly there was a lack of info on both sides, partly they weren't listening, partly they weren't understanding what they were seeing, and we had limitations too. The doctor that was most candid still flunked telling why he was pessimistic, sounded hollow on important points that seemed too pharma friendly. We had to thread the eye of the needle ourselves.

For those on the indefinite edge of stage III-IV or with smoldering recurs, some papers indicate the standard blood surveillence programs are inadequate and can be improved with existing technologies, for frequency and/or markers and panels. We think this, too, based on our experience and reading. Several people on the forums have picked up their recurs with CA19-9 and tests other than CEA and PET, MRI or CT scans.

Part of drs effort to investigate depends on whether they think you are treatable or curable. This is where it gets self-fulfilling. If they don't adequately test or tell us enough, we won't get to search for better or newer tx options beyond the local pond of drs.

Examples of things we here wanted to know, often not offered by local oncologists:
- multi modal treatments beyond "std of care"
- ALPS and other advanced/aggressive surgeries
- laser lung surgery
- metronomic chemo
- HAI chemo
- molecular and immune therapies with generic substances, considered CAM or experimental
- advanced, intensive bloodwork

[Val*pal]

This is just my humble opinion, but I think that most oncologists have a pretty good idea as to the likely outcome and timeline of most of their patients. It's true that no one case is totally predictable, so I think that's why most oncologists do not like to go into details, and rightly so. But, if pressed, the doctor can give his/her opinion.

In my husband's case, the first oncologist we saw post surgery was an in-your-face guy who misread how much we knew about my husband's cancer. (Due to the fact that my husband had had many complications following his resection and had almost died, we were not as focused as much on his staging as we were on the realization that he had survived.) He was VERY blunt and left me in tears, so then he quickly backpedaled a bit. However, his initial assessment of how much time my husband had left was spot on. But, and this is a big but, my husband's prognosis was very bleak and probably very measurable due to the fact of a lot of lymph node involvement, and this is probably why that first onc could predict so well.

Also, you have to factor in that most doctors are not thoroughly trained in how to handle possible terminal illnesses. They just aren't.

My doctor's second oncologist, who took over after Mr. Wonderful escaped to sunnier climates, was very good about letting us know the progress of my husband's disease without scaring the living daylights out of us. With her, you had to sort of sit back and re-examine her words. When you did, you could see that she was suggesting things about outcomes. For example, she would say, when asked by my husband, that his cancer was not curable. She'd repeat this whenever he'd wonder why the cancer wasn't going away. She did not say, "Sorry but this is hopeless," but would remind him that he was on chemo for life. I was able to read between the lines because I am a practical person who needs to know - though I'm not sure I would be the same as the patient.

The thing is, without hope, most people would fall apart since hope is essential to happiness. My husband never lost his hope until his last few days, and I am so thankful for this. Hospice workers told me that about 75% of their patients do not accept the fact that they are dying. And one never knows for sure anyway, so I can see why docs don't want to take that away.

Obviously, it's very complicated.

[DarknessEmbraced]

I wanted to know everything when I saw the oncologists. I didn't have chemo and was told the stats. Chemo wasn't recommended because of the side effects and the oncologist said that it would only give me another 3% to 5% chance. He said I had a 10% to 15% chance of recurrence. I am waiting to get my genetic testing done. I'm in Canada and there is only one genetic testing facility for Atlantic Canada so it's a 18 month wait for an appointment for genetic counseling. Not sure how long the testing takes. I want to know everything about the genetic testing and results as well. I feel better the more knowledge I have. I am currently NED.

[Lisa90]

If you want to know ask, and don't accept no for an answer. It comes down to that. You must be your own advocate!

This! A thousand times this! Make them answer your questions. I think they also need to be reminded sometimes that you are a person and not just a file number.

I will say that it's easier if you've been through this before or studied something to do with medicine, as they seem to like it when they can speak "medicalese" with you much more than having to speak in layman's terms. This being my fourth cancer, with a much better prognosis than I've had at some points, my onc has been quite keen to answer my questions. I recently asked him about other cancers I've never even had and he was happy to discuss them with me. Granted, this was after I gave him a huge fright by challenging his 'suggestions' and telling him directly that he needs to take me more seriously in the future.

Bottom line is, try to interact with your doctors on a different level, and make yourself heard too - they can't do everything