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"Fatema.tk"~U wrote on the OC forum but I'm answering U where Peritoneal Cancer patients can answer in the future

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello "Fatema.tk" - I've chosen to put your posting of August 2, 2017 under this Peritoneal Cancer forum.  I feel like more people will be able to share their experiences with you.  I have written you quite a long reply, but hopefully it will be of some help.  So here is your letter originally posted under the Ovarian Cancer forum in a very old posting.  Hardly anyone is actively writing on that particular posting anymore.  You deserve to be in a more prominent place where others might be of help. 

Loretta

Your letter is here:

https://csn.cancer.org/comment/1590870#comment-1590870

Fatema.tk

Posts: 1
Joined: Jul 2017

Aug 02, 2017 - 8:11 am

Help required

Hi all here,my mother cez 67 n cez jus diagonesed wid stage 3 peritoneal cancer...doctor suggesting surgery and den cheomo..nt v prefered chemo first so.c will b receiving cheomo soon...cn u pls guide me through d after effects of cheomo...

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Here is my reply to you.

Dear “Fatema.tk”

Actually there is a link right below “Ovarian Cancer” that is for Peritoneal Cancer, so, in the future, it would be more helpful for you to post further comments on that link since all those using that forum have some stage of Peritoneal Cancer.    The link you have posted began in 2009 and is now 8 years old.  Most people are not reading posts that old.  Furthermore, most of those who have posted previously are no longer posting on this OC site.    So if you don’t mind, I will put my answer to you on the “Peritoneal Cancer” forum, where more people will be able to identify with the specific diagnosis of your mother. 

As for the doctor who suggested surgery first and then chemo, in my case it was just the opposite.  My diagnosis was Stage IV to begin with.  (Peritoneal Carcinomatosis/Ovarian Cancer).  I underwent pre-op chemo first, consisting of Carboplatin/Paclitaxel (Taxol) in early 2013 after my diagnosis in late 2012.  Then I had extensive Cytoreductive Surgery (CRS) on July 1, 2013.    That included the removal of my gallbladder, spleen, omentum, ovaries, fallopian tubes and sections of my intestines.  Now often a total hysterectomy will be part of the surgery, but I had already had my uterus removed at age 36.  Also often an appendix rupture can result in Peritoneal cancer, so if I had still had my appendix, it would have been removed as well.  So I’m for taking out ALL that the docs can remove.  That eliminates possible places to which the cancer likes to spread.  These were considered “non-essential” organs in my case.

Now usually Peritoneal Cancer is treated with the same bevy of chemo drugs that are administered to Ovarian Cancer patients.  Granted there will be side effects from the chemo that will not be good, but we have to take the good with the bad in hopes of getting better.  Now for me, my Stage is terminal, and so the aim is to provide me with as long a period of progression free survival as possible.  The cancer will come back again and again, but with the help of chemo drugs, it will be “temporarily” reduced in MOST cases.  Sometimes the drugs that are prescribed do NOT provide a reduction in the tumors.  For that reason, it is good to be tested in between the treatment period to ascertain the effectiveness of the drug.  And in my case, when the chemo begins to have no good effect, I will STOP treatments. 

Each person will react differently to the chemo drugs, but it’s not easy for anyone.  So I suppose it will depend on where your mom is being treated as to whether or not the same drugs will be prescribed for your mom.  So below my name I will give you web links that will give you access to all types of chemo drugs.  When you know which kind will be prescribed for your mom, then you can key in those specific drugs and you will know better what to expect.

Also I had a letter once from a fella named “Brian.”  He wanted to know what to expect as his mom was about to undergo chemo treatments.  So I will give you that link so you can read the letter I wrote to “Brian from the North.” 

And as always, patients need to have a SECOND opinion, because in most cases, FIRST opinions are not always accurate.  When I had my second opinion, my ovaries were found to be infected as well.  So I am currently in between treatments right now.  So I hope your mother will be able to have a second opinion, but do it as quickly as possible. 

And it would be good to have a gynecologic oncologist be the one treating your mom.  They are especially trained in cancers of the female organs. 

I’m really sorry to hear about your mom’s diagnosis.  The road will not be easy, but hopefully, it will not spread to become Stage IV if proper treatments are given, although we all know how cancer loves to grow.  So the sooner you get the correct treatment, the sooner your mom can begin to “tackle that intruder.”

Wishing you all the best,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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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.

TOPIC WORTH A READTAGS - HEALTH- 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.

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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://csn.cancer.org/node/301646

This is my letter to “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”

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4.       http://www.chemocare.com/

Drug Information

Find the latest information about chemotherapy drugs including how they work, their potential side effects, and self-care tips while on these therapies…”

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5.       https://www.cancer.gov/about-cancer/treatment/drugs

 “This list includes more than 200 cancer drug information summaries from NCI. The summaries provide consumer-friendly information about cancer drugs and drug combinations.

Summaries for individual cancer drugs cover the uses of these drugs, research results, possible side effects, approval information, and ongoing clinical trials. The list includes brand and generic names for the drugs…”

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6.       http://emedicine.medscape.com/article/281107-overview

Practice Essentials

Peritoneal neoplasia can originate de novo from the peritoneal tissues (primary) or invade or metastasize into the peritoneum from adjacent or remote organs (secondary).

Primary peritoneal cancers, some of which have been implicated in many cases of carcinomas of unknown primary origin, include ovarian cancer arising in women several years after bilateral oophorectomy. Other described primary peritoneal cancers and tumors include malignant mesothelioma, benign papillary mesothelioma, desmoplastic small round cell tumors, peritoneal angiosarcoma, leiomyomatosis peritonealis disseminata (LPD), and peritoneal hemangiomatosis.

Signs and symptoms

Primary peritoneal carcinoma usually manifests with abdominal distention and diffuse nonspecific abdominal pain secondary to ascites. This tumor is described almost exclusively in women.

Patients with malignant peritoneal mesothelioma usually manifest with symptoms and signs of advanced disease, including the following:

  • Abdominal pain
  • Ascites
  • Weight loss
  • An abdominal mass

See Clinical Presentation for more detail…”

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7.       https://www.ucsfhealth.org/conditions/peritoneal_cancer/

“Peritoneal Cancer

Peritoneal cancer is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen.

Peritoneal cancer looks and behaves like ovarian cancer, but the ovaries are minimally involved. Women who develop ovarian cancer after having had their ovaries previously removed likely have peritoneal cancer.

The surface of the ovaries also is made from epithelial cells. Therefore, peritoneal cancer and the most common type of ovarian cancer, called epithelial cancer, produce some of the same symptoms and are often treated in the same way. In addition, women who are at an increased risk of developing ovarian cancer, particularly due to the BRCA1 and BRCA2 genetic mutations, also are at increased risk for peritoneum cancer.

In its earliest stages, symptoms for peritoneum cancer can be very vague and difficult to spot. Like ovarian cancer, the condition often does not produce any symptoms until late in its development. When symptoms of peritoneum cancer do develop, they are similar to those of ovarian cancer. Symptoms may include:

  • General abdominal discomfort and pain, such as gas, indigestion, pressure, swelling, bloating or cramps
  • Nausea, diarrhea, constipation and frequent urination
  • Loss of appetite
  • Feeling full even after a light meal
  • Weight gain or loss with no known reason
  • Abnormal bleeding from the vagina…
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8.       https://www.ucsfhealth.org/conditions/peritoneal_cancer/treatment.html

Peritoneal Cancer
Treatment

Treatment for peritoneum cancer will depend on a number of factors, including:

  • The stage of your cancer, or how advanced it is
  • How extensively your cancer has metastasized, or spread to other parts of the body
  • Your general health

You and your doctor will work together to develop the most effective treatment plan that best meets your needs.

Treatment for peritoneum cancer may include combinations of the following approaches:

Surgery

Surgery may be used to diagnose and treat peritoneum cancer if the place where the cancer first started to grow is unclear, or if you have a pelvic mass. This procedure is called exploratory surgery, during which the tumor is removed from the lining of the abdomen where the cancer has started to grow.

Chemotherapy

Chemotherapy uses anti-cancer drugs, which are usually injected into a vein. The drugs used for peritoneum cancer are similar to those anti-cancer drugs used for treating ovarian cancer. Depending on the type of chemotherapy drugs used, this treatment can be given weekly or every two to three weeks. In most cases, patients receive the treatment on an outpatient basis…”

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