SilentRenegade said:

This is a familiar story....

This is a familiar story.... A little different in terms of detail, but the same idea...

My dad was diagnosed after a year of bleeding in 2013(he didn't go in until after he turned 65 and the supplemental insurance kicked in because he knew). Went to an oncologist, but none of us got to really meet him. The guy was very chemocentric if you will. At the time, well, what we were told, is a sigmoid tumor, a rectal tumor, a small met to the liver and two very tiny lung mets. Guy said you'll live for years.

My parents asked no questions. This was good, they would listen and follow what the doc said - as they put it. My dad started chemo soon after - a very powerful cocktail for a 65 year old. Knocked him on his ****. Follow up a few months later showed the mets disappeared (yay), but the colon was still big. Guy said more chemo... Dad asked about radiation, onc said no. Dad begged for radiation after second chemo round because he knew the tumors were still there and he didn't want a colostomy bag.

Onc angrily walked him to radiation and left him there. Fine, talk to them, they can't do anything. 

Meanwhile - on the first PET, activity was shown in his thyroid. Onc ignored it... 

Radiation - 5 weeks. Follow up with surgeon. Nothing to remove. Complete response on both tumors. (Still true 2 years later)

Two years after diagnosis - wakes up one morning and blood pours out of him. He calls GI, GI does scope, bleeding gets worse, sister drives him to the hospital. He almost dies of blood loss... Yeah they let him bleed all over the ER waiting area. 

Two transfusions, totally clears up. 

Then they tell us - your thyroid is out of control. 

Thyroid becomes aggressive, encases the entire neck. Local surgeon causes a tumor spill, says he can't get it. Needs to go to a big center. 

Go to center a month later, surgeon gets out the impossible tumor. 95%. Medullary thyroid cancer. 

radiation on neck, he cuts it short against doctors advice, they say it'll come back. Didn't come back.

March 2016 - has a stroke. Two large brain mets. He refuses surgery. They do whole brain. Complete response. 

After the stroke, I got access to his records... Found out that a blood clot in 2014 was actually a tumor and the oncologist never told him, but put him on blood thinners for 6 months. 

Thyroid was active at time of diagnosis of colon cancer. Never said anything.

Chemo was barely working, never told him, said it was working great.

So, a few things:

1. Question your doctors

2. Read your scans (he's afraid to every time still)

3. Don't hide things from caretakers. If you don't want to read them, let them, and take them to appointments with you! 

4. Speak up if you feel something isn't right (he's better at this now).

5. If you even feel slight distrust, go to a new doctor.

6. His goal - survive even longer, go back to old onc, flip him the bird, and leave. 

 

 

 

Thanks for sharing.  I definitely like #6. 

My wife was an RN and she was diagnosed with colon cancer in 1994.  She could have been diagnosed in 1993 but the internal medicine specialist that saw her basically told her it was (and I'm paraphrasing from what my wife told me) "just female problems". 

She was diagnosed at age 42.  We were both in healthcare and, of course, cancer was the last thing either of us expected at her age.  She was used to taking orders from doctors and came from that period where nurse's didn't question doctors.  So she believed the "diagnosis" and it wasn't until about 6 months later she was feeling lousy at work and one of the doctors asked her what was wrong and she described her symptoms. She also mentioned the doctor's name that she'd seen previously and what his "diagnosis" was.   This doctor had her come to his office the next morning and he started ordering and running tests and within a week they came back with the results and a diagnosis of Stage IV colon cancer.  He wasn't an internist or an oncologist but he was a really good doctor, empathetic, and a little on the OCD side (which I happen to consider a good trait). Just based on a 10 minute conversation with her he recognized that she needed to be evaluated. 

She was given 6 months to a year (very common guess at the time) and began chemo and then surgery and then back on chemo. That became the cycle for 4 years with some chemo breaks in between.   I went to every appointment with her. My background was mostly medical surgical, telemetry, and psych, but I began learning what questions to ask, what to follow-up on, and when to argue.  Plus I took lots of notes and at one point started carrying a tape recorder with me. 

She survived for 5 years. At the beginning of year 5 she decided she'd had enough.  The tumors kept growing and no longer responded to the chemo and many of them could not be reached by surgery.  A surgeon (the only one I trusted out of the three she'd seen) basically said that he would do one last surgery and remove everything he could which he believed would extend her life for about a year.  For the remainder of year 5 she was on Hospice. 

A major lesson that got drilled into my brain during that 5 years was to learn how to "read" a doctor.  There are some doctor's who basically just want good, quiet little patients who would do as they were told and wouldn't question anything the doctor told them they should do.  If the patient did ask questions the doctors might condescend to answer one or two questions but after that they tended to become impatient and in some cases defensive.  It's not too difficult to learn to spot them.  and when that happens it's time to find someone else.

People want to trust the doctors and the other healthcare professionals who are treating them. It's like wanting to trust the mechanic you take your car to, the computer geek you take your computer to for repair, or the lawyer you rely on to give you good advice.  These professionals all come with their own sets of jargon, moral code (sometimes a very flexible one), levels of experience and knowledge, and their personality.  It's that last one that many people go by when selecting someone to work with.  It's important, but a good personality alone won't make good decisions without the knowledge, experience, drive, empathy, and energy to back it up.

Your dad had the right idea.  One thing I can't tolerate are bullies and not all bullies use physical intimidation. Some Doctors have become very good at verbal intimidation and are more than willing to use it if they can get their way.  The sad thing is, some of them using bullying tactics because they actually believe they are right.  Some do it because they hate losing an argument.  Others do it because they don't want to believe they might have been wrong (which I've only met one who ever admitted they were wrong and that was over 30 years ago.)

I wish your Dad a long life and please, take a picture of when your dad flips off the oncologist and post it somewhere. I'd love to see it.

Bill

John23 said:

CEA Rise Due to Death of Cancer Cells

CEA Rise Due to Death of Cancer Cells

 

This is the original post from Thu, 09/05/2013 - 9:25am:
 

"I had posted this in a personal message, and felt it should be
posted where it might be of help to others as well:"
__________________________________________________

The CEA count is nearly meaningless without other tests; the CEA
is only one marker out of many, that is evaluated for health concerns
and/or the presence of cancer.

The “CEA” count can go up or down for many reasons, including
(but not limited to) dietary changes. It’s for that reason, that changes
in the CEA should not be taken too seriously if one ignores all
the other markers that the presence of cancer can change.

Another thing that should be kept in mind (and remind the physician
of as well), is the fact that dying cancer cells will emit
chemicals that will be reflected as a change in the CEA count.
Dying cancer cells will equate to a noticeable rise on CEA!

I had posted periodically that fact (and links to the medical
Journals that support it) on this website. It’ been noted that
many Oncologists had been taking patients off their specific
chemical treatment due to a rise in CEA, feeling that the rise
was an indication that the treatments were not working. The
abandonment of the treatment was causing the loss of patients,
since those treatments were actually working better than expected!

It’s that kind of misinterpretation of diagnostics that is most harmful !!

So….. not only can the dietary matter of herbal remedies change
CEA, but so can an herb’s ability to kill cancer cells. The rise
in CEA - if attributable to the death of cancer cells – could
very well be a sign that the herbal remedy is working!

Cancer cells are not complicated, they are a one cell life form
that began as a normal cell gone bad. They began their new life
using the fermentation process, and continue to survive using
that process. A cancer cell isn’t that much different than an
amoeba or a mold spore as far as it’s simple and basic life
support system; it is not complicated, it is very basic. The only thing
complicated, are the methods used to isolate the single cell and
remove it; our immune system is to date, the only method that works
for that isolation process.

The “complicated cancer cell” notion is brought forth by the
industry alone; the speculation of it's reasons are left to one's
own reasoning.

Here’s a copy of one post I made regarding CEA and dying cancer cells:
____________________________________________________

"Chemotherapy and radiation therapy can cause a temporary rise in
CEA due to the death of tumor cells and release of CEA into the
blood stream. Benign disease does not usually cause an increase
above 10 ng/ml."
From: http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

---------------
"The data presented in this study support both lines of
thought concerning CEA production; however, these results
strongly uphold the theory of CEA release by dying cells."
From: http://etd.lib.ttu.edu/

--------------
"recent observations of CEA upregulation in CRC cell lines by cellular stressors such as
hypoxia9 or exposure to cytotoxic drugs such as 5-fluorouracil.10,11 Moreover, it is plausible
that apoptotic release of CEA from dying cells could trigger transient increases"
From: http://cigjournals.metapress.com/index/8278xq0v077w2166.pdf

-------------
"One possible explanation for the rise in marker levels among
patients with regressing tumor is that the dying cells may
release large amounts of marker into the blood."
From: http://www.faqs.org/abstracts/Health/Tumor-marker

------------
"Colorectal cancer patients whose CEA blood tests rise at the
beginning of chemotherapy and then fall (CEA flare) do better
than patients with a consistently rising CEA. CEA flares don’t
necessarily predict worsening cancer.

Compared to patients with consistently rising carcinoembryonic
antigen (CEA), patients who had a CEA flare had more tumor
shrinkage, longer time before their cancer got worse, and longer
survival time."
From: http://fightcolorectalcancer.org/research_news/2009/

------------
"If we had followed this ASCO guideline of measurement of CEA
level every second month, one of the surge patients would have
been incorrectly interpreted as having experienced treatment
failure, and therapy would have stopped. The patient would have
been incorrectly removed from the treatment, giving her a time to
progression of 11.2 months and 27.3-month survival. To avoid
inappropriate therapy changes based on clinical misinterpretation
of a CEA surge as an impending disease progression, we suggest
that future ASCO guidelines should mention the possibility of CEA
surge. Furthermore, we suggest that no therapy changes should be
based on CEA levels alone at all during the first 6 months of therapy.

An initial rise in CEA level during effective chemotherapy in
colorectal cancer patients may not always indicate progression of
disease but may be a transient CEA surge in patients responding
to chemotherapy. In monitoring tumor responses and in future
guidelines for the use of tumor markers, the possibility of a
surge phenomenon should be taken into account. This will
especially be important if a new, more effective treatment with
high response rates or rapid tumor destruction is introduced. "
From: http://jco.ascopubs.org/content/21/23/4466.full

___________________________________________________

I hope that’s of some help to you (and the physician) !

Stay well,
John

 

I needed more reading material.  Thanks for sharing this.

Bill