Encasement of the inferior vena cava

Guitardiva

Has anyone experienced growth of the tumor around the inferior vena cava?  My last CT showed partial encasement of the IVC but it was done in the ER to look for something else, the ER doctor didn't mention it, and of course, I can't reach anyone in the cancer center to tell me what that means in terms of symptoms/prognosis.  It can't possbly be making things any better.

Thanks.

LorettaMarshall

Diva~agree with you~this can't possibly B making things better!

Hello “Diva”  – Are you a good guitar player?  - Your name arouses my curiosity.  In any event, looks like you’re going to have to “pull some strings” to find out about this problem.  I don’t know what it means either, but obviously it’s not trivial, or it wouldn’t even have been noted. 

Thankfully, I haven’t had this show up on one of my CT scans, and haven’t the foggiest notion as to what it might mean.  But your post aroused my curiosity, so I asked “Dr. Google” about your “partial encasement of the IVC.   And from the things I’ve read I wouldn’t dare to issue a diagnosis, except I’d be setting up an appointment with my oncologist right away. 

Anytime a CT scan is ordered by my oncologist, he orders a CT and based on time for it to be read, he sets up a follow-up appointment as well.  On my return visit, he explains to me IN DETAIL what is meant by the terms written therein.  Looks like you should be calling your doctor in the morning and setting up an appointment to have this explained to you.

Below my name are some facts about the heart that I will need to know since my husband has Atrial Fibrillation.  I did learn some things like where or what is the vena cava?  I learned how to pronounce it and the definition-- “Definition of ve·na ca·va - [ vee-n uh key-v uh] - either of two large veins discharging blood into the right atrium of the heart, one (superior vena cava or pre-cava) conveying blood from the head, chest, and upper extremities and the other (inferior vena cava or post-cava) conveying blood from all parts below the diaphragm.”

 You should definitely pursue this until you find a reasonable explanation, especially since my first reference below will tell you some alarming things about FIRST OPINIONS. 

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – Diagnosed 11-2012~Still under active treatment

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Interesting references below:

1.  http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

by Melissa Turtinen  - April 4, 2017 12:17 pm

 If you’re diagnosed with an illness, you might want to get a second opinion.

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

• Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
• In 21 percent of cases, the diagnosis was changed completely.
• In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

How to ask for a second opinion

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

Here are some tips about seeking a second opinion:

– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.

– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

For more information on when and how to get a second opinion, click here.”

  melissa@gomn.com”

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2.  http://www.seattletimes.com/opinion/misdiagnosis-millions-of-patients-are-being-treated-for-the-wrong-conditions/

"MISDIAGNOSIS:  MILLIONS OF PATIENTS ARE BEING TREATED FOR THE WRONG CONDITIONS

Originally published April 27, 2012 at 3:00 pm Updated April 27, 2012 at 5:01 pm

Despite expensive new technologies, millions of patients worldwide are being treated for the wrong conditions, writes Evan Falchuk, vice chairman of Best Doctors, Inc., in Boston. Misdiagnosis means needless suffering and hundreds of millions of dollars wasted each year.

By Evan Falchuk

We read and hear a lot of headlines about health-care reform and related costs and hurdles. What we hear a lot less of, though, is misdiagnosis and why correcting the situation should be made a priority.

Despite our “latest and greatest” technologies, 15 percent of all medical cases in developed countries are misdiagnosed, according to The American Journal of Medicine. Literally millions of patients worldwide are being treated for the wrong conditions every year. The Mayo Clinic Proceedings found that 26 percent of cases were misdiagnosed while, according to The Journal of Clinical Oncology, up to a startling 44 percent of some types of cancer are misdiagnosed.

These statistics should be getting a lot more attention.

Misdiagnosis means needless suffering for patients and their families, and in many cases, even lost lives. Secondarily, it also means nearly one-third of the $2.7 trillion spent each year on health care in the U.S. are considered to be wasted dollars.

So how can this still be occurring so regularly, and why have misdiagnosis rates not changed much over the past 30 years?

I believe five root causes explain the situation.

First, our health-care system is greatly fragmented. When there are so many opportunities to delay or misread tests, miscommunicate findings or order the wrong tests in the first place, the odds of getting the right diagnosis and right treatment too often are stacked against the patient.

A second root cause, according to Dr. Eta S. Berner and Dr. Mark L. Graber’s compelling article “Diagnostic Error: Is Overconfidence the Problem?”, may well be a physician’s overconfidence in his or her diagnostic ability. Once doctors have made up their mind about a patient’s condition, and once a diagnosis has been reached and the patient is sent down a treatment path, it’s very, very hard to step off that path.

This leads to the third root cause of misdiagnosis, which stems from the way doctors are trained to think. Dr. Jerome Groopman, one of the world’s foremost thinkers on diagnostic error, believes today’s “rigid reliance on evidence-based medicine” (reaching treatment decisions based on statistically proven data) is largely to blame for many diagnoses that are missed or off the mark.

The fourth root cause boils down to time, or lack thereof. Many time-strapped doctors today typically spend 10 to 15 minutes or less with each patient — not because they don’t care, but because there simply are not enough hours in the day to meet demand for in-depth, more detail-oriented care.

The fifth root cause of misdiagnosis is the still-growing number of subspecialty areas in which physicians practice. Whereas in earlier years doctors might specialize in one certain type of cancer, a growing number of them now choose to focus on the subset of a subcategory of a particular type of cancer. This is less than ideal if your initial treating doctor lacks in-depth training in the exact type of illness you have.

So what can be done to reverse course and shrink misdiagnosis rates to something closer to zero?

Raising awareness of the issue and its causes among physicians is sorely needed, as well as more in-depth exams and data analysis, to include such vital factors as carefully examining a patient’s complete, detailed medical history.

Teaching medical students in a way that doesn’t always center on looking for the quickest, easiest diagnosis could mean better diagnoses for millions of people every year. Medical students are trained that “when you hear hoof beats, think horses, not zebras.” This cognitive shortcut generally works well, but combined with the pressured reality of modern medical practice, it impacts a doctor’s capacity for critical thinking.

In today’s system, doctors easily see a hundred or more patients a week, and often spend scant minutes with each — nowhere near the time needed to examine all medical possibilities and important related factors like a patient’s full family medical history. With even an additional 10 minutes with patients, diagnoses would have much less of a “best guess” approach. And if hospitals and doctors would track instances of misdiagnosis — and give their colleagues regular feedback on misdiagnosed cases — the impact would be substantial.

By starting to really press the discussion of medical quality in this direction, doctors, the people at the front lines of the battle for better patient care — as well as their patients — can start to make an enormous difference.

Evan Falchuk is vice chairman of Best Doctors, Inc., a global health company based in Boston. He is an active member of the National Business Group on Health’s “National Leadership Committee on Consumerism and Engagement,” the National Governors Association and the American Benefits Council.”

Evan Falchuk

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3.  http://www.healthline.com/human-body-maps

Here is a great body map.  You can move the cursor on the bar below the picture and view the organs in “3-D” fashion.  So after you pull up the site, you can look at the list on the left, and choose any part of the body you wish to know more about.  I find it fascinating to “look inside” and see the intricate detail woven into sync by our Creator God.  And I’m glad He gifted certain people down here with the ability to reach the right diagnosis, and hopefully “fix a few things”!

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4.  http://www.healthline.com/human-body-maps/heart

So since my husband has an appointment with a heart specialist tomorrow, this is a good reference site for me as well.  I’m certain I will hear words I’ve never heard before, and I will have to come home and do my “homework!”  So when you do finally get an explanation, you can come to this “body map” and see exactly the places that they are describing.

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5.  http://www.healthline.com/human-body-maps/heart#seoBlock

"In Depth: Heart

The heart is a mostly hollow, muscular organ composed of cardiac muscles and connective tissue that acts as a pump to distribute blood throughout the body’s tissues.

The heart is the epicenter of the circulatory system, which supplies the body with oxygen and other important nutrients needed to sustain life.

The heart has a double-pump feature that transports blood away from it and back to it. Freshly oxygenated blood leaves the left side of the heart through the ascending aorta—the largest artery in the human body. Blood flowing through the right side of the heart is returning from all over the body before it is sent to the lungs where it receives oxygen. 

The heart has three layers. They are the:

• Epicardium: This thin membrane is the outer-most layer of the heart.

• Myocardium: This thick layer is the muscle that contracts to pump and propel blood through the body’s tissues.

• Endocardium: The innermost layer is thin and smooth.

  The heart is divided into four chambers: two atria and two ventricles. Blood is transported through the body via a complex network of veins and arteries.

  The average human heart weighs between 6 and 11 ounces. The muscle is strong enough to pump up to 2,000 gallons — as much as a fire department’s tanker truck — of blood through one’s body every day.

  The average heart beats between 60 and 90 times per minute, but this depends on a person’s cardiovascular health and activity level. The more physically fit people are, the lower their resting heart rates will be.

  Hormones released because of emotions and other stimuli affect the heart rate, which is why the heart was historically associated with emotions.”

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  6.  http://www.medicinenet.com/script/main/art.asp?articlekey=10781

  Superior vena cava: A large vein that receives blood from the head, neck, upper extremities, and thorax and delivers it to the right atrium of the heart.

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  7.  http://www.medicinenet.com/script/main/art.asp?articlekey=26566

  Medical Definition of Superior vena cava

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  8.  https://www.ncbi.nlm.nih.gov/pubmed/18512544

  [MY NOTE "DIVA":  Just posting this here but I have no idea if it has anything to do with your situation.  It just came up in my searches.]

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  “Vasa. 2008 Feb;37(1):68-80.

  Surgery of inferior vena cava associated malignant tumor lesions.

  Eder F¹, Halloul Z, Meyer F, Huth C, Lippert H. - Author information - ABSTRACT

  BACKGROUND:

  Tumor lesions of the inferior vena cava (IVC) can originate from the vein or can develop by malignant tumor infiltration from the surrounding tissue. In this context, particular attention should be paid to tumor lesions with pegs into or within the IVC. The aim of this series of a single surgical center was to analyze the perioperative management, the individual-specific and -adapted surgical technique, as well as the outcome including prognostic considerations in IVC-associated malignant tumor lesions.

  PATIENTS AND METHODS:

  Over a 6-year time period, all consecutive patients with IVC-associated malignant tumor lesions and their patient- and finding-specific characteristics were registered, data and parameters of the diagnostic and therapeutic management were documented, and both the short- and long-term outcomes (complication rate, perioperative morbidity/mortality, tumor recurrence rate, survival) were assessed with periodic follow-up investigations.

  RESULTS:

• Overall, 12 patients were enrolled in the study from 1/1/2001-31/12/2006:6 primary IVC-tumors (leiomyosarcomas, 50%)

• and 6 secondary IVC-tumors (2 retroperitoneal tumor lesions, 16.7%, 3 renal cell carcinomas 25% and 1 carcinoma of the adrenal gland, 8.3%).

• 4 of the secondary tumors had pegs into the IVC.

• The RO resection rate was 83%.

• The perioperative morbidity was 33%; whereas, the hospital mortality was 8.3% (n = 1).

• Surgical reconstruction of IVC was achieved in each case (100%).

• There was a mean postoperative observation period of 20 months (range, 1-58 months). Complete follow-up documentation was obtained for all of the patients (100%). Three patients experienced recurrent tumor growth (27.5% out of n = 11). While the overall mortality through the follow up observation period was 27.5%, the tumor-specific mortality was 16%.

CONCLUSIONS:

The primary surgical aim is RO resection to provide a long-term outcome with no tumor recurrence including the reconstruction of the IVC based on a reasonable risk-to-benefit ratio. The favorable outcome of this case series demonstrates that IVC-associated tumor lesions can be approached if there is an appropriate expertise of the surgical team, a sufficient perioperative management and an adequate financial background with a reasonable survival rate. The variable prognosis of the various tumor lesions depends on tumor entity, stage, resection status and individual risk factors.”

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Guitardiva

Loretta,

Loretta,

Thanks for your response.  The reason I haven't had follow up with the oncologist regarding the vessel encasement is because the CT was ordered by an ER doctor, not her, and she didn't know about it until later.   I emailed the "gyn ocn team" about the results, but I have no idea if she knows about it now.  But when you call, the response is always the same:  "She will discuss that with you at your next appointment."  The "patient navigator" simply ignored the email I sent to her about it.

It's going to be quicker to be seen at MD Anderson on Monday, so that's what I'm doing. Maybe someone there will actually tell me what is really going on.

Unfortunately, our options for oncology treatment are very limited in New Mexico.

LorettaMarshall

Diva~U've waited 2 long already~B forceful on Monday's visit!

Hello again “Diva”

What you are telling me is most “unfortunate”.  “Some patient navigator, I’d say!” 

You may as well have reached an “automated” phone answering machine.  It sounds like your trip to the ER produced only more anxiety.   I’m glad you’re going to MDAnderson on Monday with a copy of your report in hand.  Be sure to ask for a copy of all the results of your consultation as soon as they are available from MDAnderson as well.

We were out of town on May 25^th when my husband had a mini-stroke and was hospitalized for 2 days.  We asked the hospital to send a copy of the reports to our two doctors here, our GP and our Oncologist.  However, we had a complete copy of all the reports and a disc that we brought home with us.  Otherwise, it would have been much longer for our doctors to have received the reports.  Our GP worked us into the schedule the same day we called.  Not only do you have to be your own “navigator”, you also have to be an “agitator” at times.  I’ve known patients that have received that inadequate, automated, impersonal response from the clerk at the front desk—“we’ll take care of that at your next appointment”.  And the patient suffered needlessly! 

From what you’ve described and based on what I have read, it seems to be a serious problem that should have gotten someone’s attention well before now.

When you get to MDAnderson, be sure to tell them that you want someone to tell you what this report means.   You know that it won’t be “fixed” the day you arrive, or maybe can’t be “fixed”, but you certainly want a full medical explanation in layman’s terms THAT VERY DAY!      You’ve waited too long already. 

So do inform us, because we learn a lot from each other’s problems.  I’m certainly curious to know what it all means.  We never know when the same condition might become ours to cope with as well.    

Hope Monday’s visit will provide some answers.

Loretta

Guitardiva

The doctors at MD Anderson

The doctors at MD Anderson confirmed the diagnosis and also that my oncologist in New Mexico is doing the right things.  They mentioned other drugs to try if the side effects get to be too much.  He also said the encasement of the inferior vena cava was not serious right now as the vessel function is not affected, and that if it started to be a problem, and the current chemo didn't shrink the tumor around that, they could try targeted radiation.

He didn't have any new bad news, fortunately, but no one can tell you how long you might have because they just don't know.  While the average time after recurrence is 18-24 months, "average" means it could be six months, it could be six years.  It comes down to better management of all the side effects, which I'm going to have to find a way to work on.  He recommended continuing the Doxil and Avastin, or just Avastin if the Doxil was too much, for now and see what kinds of results I get.  No one knows what is going to happen with any of this.

In Houston, I met a woman who has been coping with breast cancer for fourteen years, endless radiation/surgery/chemo.  I don't know how she has done that for so many years.  I didn't get a chance to ask her, but I gave her my email and hopefully she will contact me.

I knew the doctor wasn't going to have any magic answers for me, I was just irrationally wishing he could have found something to say to make me feel better about all this.  But those words just don't exist.

Kaleena

Soft tissue mass?

Do they know for sure what the mass is?   I have a PET positive "Soft Tissue Mass"   In fact, my left ureter passed through it which eventually caused me to have a ureter stent placed.   And then I have surgery to have reimplantment of my ureter.   During the surgery, due to the severeity of my endometriosis, it took a long time to get to the part of the ureter because every thing was attached and especially part of ureter was attached to my vena cava.   I was to have another biopsy on the mass but by this time they couldn't get to it and they had already had a serosa injury which they repaired.   I still have the mass which is still has a low FDG uptake (currently 3.2) and its growing again.   

I guess what I am trying to say is are they going to do a biopsy on it first to determine exactly what it is?   Or get a PET Scan to see if it is active?

Its really frustrating.   Hang in there.  My best to you.

Kathy

Lou Ann M

Chiming in

i belong on the Uterine board, but since there are similarities I often check here.  I resently went through a very similar situation. the CT scan I had in March showed that a tumor had grown between my Vena Cava and my spine, around my spine and into the IVC.  No surgeon in our area with the qualifications to tackle this.  My medical oncologist was afraid that radiation Would open up the IVC and and the end of me.  But he did ask the radiologist oncologist who said he could do something with this.  After a planning CY scan and an MRI and a week's planning, he was able to successfully radiate the mass and shrink it.  He was not worried about the IVC because scar tissue forms were the mass was and seals it off.  Must have worked, I am still here.

Hugs and prayers, Lou Ann

Guitardiva

I've had a biopsy; it's a

I've had a biopsy; it's a spread of the tumor.  I have an appointment with my regular oncologist tomorrow, maybe she will tell me something.  I am having issues with her but have no idea how to deal with them, either.  I am so overcome by severe anxiety about all of this that I can't even begin to think straight these days.