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Would you think it important to know your cancer origin?

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

My Onc thinks I have Bile Duct Cancer...my second opinion Onc thinks I have Colon Cancer. 1stOnc says it doesn't matter, treatment is much the same and tests to confirm Dx too costly for being worth the info. I think it makes a big difference and is important to know. Treatment-wise, I do see differences and I can recall when he told me it was BDC not CC, he said BDC was worse...so why wouldn't it be helpful at least to my mind-set to know for sure if it is CC?

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

to the second onc about if treatment is the same as the other say!
Hugs!

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I can't see the 2nd Onc again until I get my Medicaid application approval...she says to stay on the current chemo for now as it is working. But would another chemo drug work better for CC than the Gemcitabine/Cisplatin mix I'm currently using? Also, I hear vitamin D3 is good for CC but isn't effective for BDC...it just seems to me that if I had CC, there are more possibilities than with BDC.

More info: I'm stage4 with liver mets...big ones.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

It's difficult to understand certain things from a European point of view .
Hugs!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

you asked the question, of course get the info if you can.
work your medical system whatever is needed for you to get the best service.
i think the key relationship is your onc secretary. my onc secretary is amazing.
beg , be ascertive you have to push your priorities subltly.

sorry to you got big mets.
hugs,
pete

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

As long as it is an adenocarcinoma, I think the most important thing is CA19-9 (and it you can get it, CSLEX1) status, best if by pathology's tissue stain. These may be hard to get outside of Japan, I used a CA19-9 blood test in the 30s and a lot of other information to estimate odds. These two tests (CA19-9, CSLEX1) overlap a lot, so even one of the two tests largely determines our odds that cimetidine stops/reduces metastastis. CA19-9 is commonly used in the US for blood biomarkers, not sure whose lab might do the stain.

The Japanese often describe using continuous oral chemo with cimetidine and PSK. We have have been using fairly high doses of vitamin D3 to augment cimetidine and chemo, while watching the blood calcium levels. Lite chemo + alternative has seemed to control the metastasis for my wife, but surgery will be necessary to cure the nodes. The Japanese published a case paper for CUPS (cancer of unknown primary origin) that used continuous oral chemo + cimetidine + PSK for over 6 years, and surgery for recurrence before switching to cimetidine + PSK alone, essentially cured.

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

CA19-9 just shows normal for me...not a good marker :(

I'm not familiar with CSLEX1 or PSK...more info?

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

CSLEX1 isn't available in the US, a truly negative CA19-9 would cover that base because Japanese data suggest both positive are when cimetidine works (regular blood tests are sometimes tricky), and either tissue test negative suggested a contraindication for stage III CC. Before cimetidine, high CA19-9 was definitely not a good biomarker result, so be glad.

PSK, a specific Coriolus extract, augments immune function and stimulates bone marrow, handy for chemotherapy. In the US, the closest I've seen is JHS Coriolus extract as a supplement, so far cheapest ($67-$75/bottle ~ 1 month) through Life Extension and is what we buy, amongst a lot of stuff.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Thank you for the input and info!

Best of health,

John

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I asked my Oncologist the same question, "Why is it important of where the cancer started?"
His answer to me was that the importance lies in the spread of cancer and where to look for future cancer or suspected cancer. The organs share blood flow, and so cancer is more logical to flow in a direction, less likely up stream and more likely down stream.

I have a friend whom is a medical researcher on clinical trial drugs. I asked her the same question. She had the same answer.

Different cancer cell types do have different treatment recommendations.

Best Always, mike

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I would difinitely want to know my cancers origin and I think you are valid in trying to get the information. I know where mine started and would have the same concerns. I hope you get your answers Janine.

Gail

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"My Onc thinks I have Bile Duct Cancer...my second opinion Onc thinks I have Colon Cancer. "

Didn't they do a biopsy to identify it? I would think that'd be the first
step they do, since each chemical works a bit differently against
a cancer of a specific origin. I.E. Prostrate cancer is slow moving
and can take an entire lifetime to grow, while Lung cancer can grow
fairly fast. Maybe there's not too much difference between the two
as the onc said, but still..... You do have a right to know.

Ask what the biopsy showed, they owe that to you.

Better days will come!

John

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Hi John,

Yes, a biopsy was done but although it identified adenocarcenoma, origin was still unclear...they said they did rule out colon cancer, liver, lung, breast. They said most likely I have bile duct cancer, though it could be pancreas or gall bladder...they did an endoscopy to rule out upper GI cancer. Then they said that it doesn't matter which of those cancers it is as treatment would be the same.

I could deal with not knowing between gall bladder, pancreas, bile duct...but if it is colon cancer, I do think treatments and options and outlook are different for colon cancer versus those others, but the Onc insists it makes no difference. My second Onc is requesting the first Onc provide more tests while I await Medicaid approval...first Onc blustered that this information is not worth the cost of tests, but after checking he found out that the company that provides DNA test will write off the cost for low-income patients...meaning I'll get the test for free. If I had let this doc decide for me, I'd never have known I could get this test at no cost! I'm also getting an MRI which the 2nd Onc hopes will provide a better view of tumor details.

Thank you all for confirming that there is indeed differences that make it helpful to know cancer origin...John, yes, your point that even if treatment is basically the same there are still issues that differ between cancers that would be helpful to know, such as growth rates and future metastasis targets.

And thank you all for the helpful information you've shared...I wish I could afford to try more supplements, but so far I am only taking flax oil, L-lysine, iron, D3 and Bcomplex. I am juicing once per day of apples, oranges, carrots and cherry.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

If your insurance company will cover the cost of the additional testing, why is your first onc. worried about that? Bet he or she would have them if it was him/her. I remember a few years ago talking to my onc about organic foods and him not really saying yeah or nah about it but when I asked what he ate, he quickly said "we eat mostly organic". I laughed and thought of the saying: "watch what they do instead of listening to what they say".

Sister Sledge, I'm with you about wanting to know the origin. Knowing and not having to always wonder and second guess would be much healthier for you too! BTW, I enjoy reading your posts, I like how you think.

Keep us posted.

Lisa P.

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Hi Lisa,

My 1st Onc is making me soooooooooooooooo angry...I can hardly wait until I can move on to a better doc. Dr Doom only cares about costs and supposedly about quality of life...he thinks most treatments are too detrimental to quality of life and too costly and really doesn't recommend much for the future if the chemo stops working. Or should I say, "when the chemo stops working" as Dr Doom puts it, most assuredly. Dr Doom doesn't expect me to survive whatever this cancer is I have, past 1-2 years at best.

I guess his worries about my costs relate to "leaving my family with a huge bill for cancer treatments that will assuredly fail to keep me around for any great length of time"...or he's afraid he won't make as much money off me as I am getting financial assistance from the hospital, which means they reduce my debt and maybe don't collect as much for him? Or he worries I'll be denied Medicaid? Or Medicaid won't cover some of the test/treatment options, such as PET scans and DNA tests, etc. Dunno...

Honestly, this Dr Doom lost my respect when he spent our first visit yawning sleepily while telling me my prognosis...how can you be yawning when you are telling someone they have a cancer that could kill them in one month if they don't get treatment? The second visit, he yawned even more...third visit I confronted him about it and he explained that the consult room was too warm and too soothing colors to keep him perky :(

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I had a first Dr once. He was my primary care doc who happened to be an oncologist. I went for yearly checkups for many years prior to being dx with stage IV colon cancer. After I was dx, he said "what's the rush with getting a port and starting treatments, you've had a cancer for a few years. What's another month or two". Needless to say, he was quickly canned and replaced by my current onc who is wonderful.

Sounds like your onc needs a swift kick in the groin to keep him awake. Please SisterSledge, get away from that clown as fast as you can. He's a hack at best and most likely a dangerous person. Plus, I really have never cared for any doc who says that I have x amount of time left. My current one would never say anything like that at all. We are still talking "cure" here.
-phil
PS: I would like to know what type of cancer I have. I don't particularly care where or how I got it but I'd want to know what it is I have so I'd know how to approach dealing with it. I think it's very important.

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I'm looking forward to the day I don't have to see Dr Doom again...it is hard enough to maintain a positive outlook without having an "expert" tell me all is doom. If I was in a miserable state I wouldn't be disagreeing with him so much perhaps, but I've got good blood numbers, no pain, almost no side affects from chemo, 35% reduction in tumors after only four chemo doses (and my tumors are four big ones), metastasis only in liver, relatively young at 50yrs, very good health history, etc...

And I should soon know my cancer origin...DNA test has been ordered from the original liver tumor biopsy tissue and I get an MRI on May10th, or sooner, if I can get it moved up the schedule. Funny thing is (well, not actually funny), if I had paid the $50 copay over the phone I could have gotten the MRI scheduled within two days time, but since I want to come in and pay to get a receipt in hand I have to schedule it out a week beyond when I will be paying in person.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

You must do something about , does your insurance allows you to change the doctor?.

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

We don't have any insurance at this time :(

The thing is, is that the 2nd opinion Onc (Huntsman Cancer Center) wants to wait to take me as a patient until I'm approved for Medicaid (a government program to help the poor pay for medical services). I don't think Huntsman offers financial assistance themselves and they won't work without money from me up front at this time. So, I'm stuck with Dr Doom for a while as I go through way too much red-tape hassle on the Medicaid thing...Dr Doom works within the Intermountain Medical establishment here and they promise financial assistance to me. If for some reason I am denied Medicaid, then I could still shop around for a different Doc within Intermountain but since they all work together I don't see how it would make any difference from my current treatment/tests options. I can withstand Dr Doom's attitude towards my hopes but I can't withstand missing out on the best treatments for whatever cancer I actually have.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

its got some tips about a life of crime. good luck with your funding.
gee dr doom is a good nickname.

hugs,
pete

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

You have my sympathy. I have been known to get into strife over my comments on doctors. Some are genuine humanitarians and being a doctor for them is a calling. A lot of the medical profession are under achievers. The moment you attend an appointment they get paid here in Australia. They don't have to help you ,they just have to see you and they get paid. There is no incentive to cure you. I am way past ca treatment but I have ongoing problems that are believed to be long term effects of chemo. I cannot feel my feet or lower legs and the same for my left hand. I asked what sort of neuropathy is it. What does it matter once the nerves are gone they are gone. well there is a lot of point for me as the nerve loss is creeping up my limbs . When it gets to my neck are they suddenly going to try to find out what the cause is. I don't like the 'lets try approach' they need to find out exactly what is wrong before they treat. Good luck I hope you get the treatment you need,Hugs Ron.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

ron,

god it love it, i am still laughing...

our aussie wit is unique. i hope the yanks get it.

awesome ron. did you see my post about samE. but mate I can feel my feet and my fingers.

not sure how or why. I am not sure about the permanent nature of nerve damage, have you tried any supplements. pm me if your interested.

really piissses me offfff that our side effects are glossed over and we have to fix them ourselves.

hey, but that life, it seems common around the globe as well.

underachievers, you are so kind. I'd give them a free trip on the titantic with a one way ticket.

remember the do no harm quote, well I guess at least do nothing is close.

sorry but I am getting so cynical in my survivorship and I ain't even got the port our yet!

cheers,

Pete

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SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I read the link page, but I just don't know enough about cancer stuff to make much sense of what I read, most times. I'm thinking this article relates more to abilities of a liver damaged by cirrhosis (and we might infer chemo), but except for having tumors that don't seem to be blocking any functions, my liver is dandy/healthy...I don't have jaundice or itch or anything :)

I'll make a new thread when I have more to report on origins info and treatments...for now I'm continuing with the chemo plan set up for Bile Duct Cancer and hope I'm not missing out on something that would be better.

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

My husband once told me that most people get advanced to their highest level of incompetency...

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"They don't have to help you ,they just have to see you and they get paid. "

It's the same thing here, sate-side. I've got bills for co-pays from doctors
I've never seen. It's called "consultation". I guess one physician calls
the other, and once on the gravy train, he gets paid!

I called my secondary insurance provider (Blue cross/Blue shield) and
they said that as long as the physician is a member of the "group",
he/she gets paid; That if I have a problem with that, to call the physician.

Well... If they don't care, I guess I don't care. I can't do much to
stop the doc from getting paid.

Our fine nation's population pays taxes to keep animalistic,
careless serial killers in prison for their entire lives, getting
free health care, food and shelter...... but fights tooth and nail
against paying taxes to pay for the health care of a human
that truly deserves to live.

It makes me sick.

Aside from that, we're a good bunch of Americans!

Peace, and good health!

John

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