How to Select a Surgeon, Part III: Meet the “Charge Nurse”

While most patients take the time to interview their surgeon prior to scheduling CRS and HIPEC, few take the time to tour the floor of the hospital where recuperation will take place following surgery.

Typically, Pals spend 24 to 48 hours in ICU, immediately following surgery, before being released to the surgery recovery floor for the duration of their hospitalized recuperation.

The “charge nurse” is responsible for supervising the floor/unit where you will recuperate. S/he assigns nurses to specific patients, and monitors the unit to be staffed adequately to meet the needs of the patients. Charge nurses may also provide direct patient care when needed and may serve as liaisons between patients and the nursing staff. Charge nurses may be rotated throughout the week, therefore, the charge nurse may change from day to day. In some hospitals, charge nurses maintain that position for longer periods of time.

On the day you interview your surgeon, request to meet with the “charge nurse” of the floor where you will recuperate. Ask the charge nurse to give you a tour of the ward.  You and your family caregiver will want to see an example of the room where you will recuperate, as well as any amenities the floor or hospital may have to offer, e.g. a lounge for patients and caregivers, cafeteria, access to Wi-Fi, etc.

Prior to meeting with the charge nurse, prepare your list of questions for him/her, just as you prepare your questions for the surgeon. Among the questions to consider asking are the following:

What is the "nurse to patient" ratio on this floor? (How many patients are assigned to each nurse?)

Will the majority of your hands on nursing care be provided by RNs, LVNs, or licensed aides?

How many HIPEC patients are cared for on this floor each week? (How experienced is the nursing staff in taking care of HIPEC patients?)

These are just a few of the important questions patients must consider when selecting a surgeon/specialist. It's important to pay attention to these details regarding the hospital itself because after you are released from the ICU, you will spend the remainder of your hospitalized recuperation on the floor (unit or ward) supervised by the charge nurse.

As a proactive cancer patient and consumer, interview all potential healthcare providers whenever possible. Your health and your future are deserving of your time and attention to investigating your healthcare treatment plan thoroughly, prior to scheduling your surgery.

These are just a few of the important considerations that one must examine prior to selecting a surgeon/specialist. A more detailed and comprehensive list of questions is included in the PMP Pals’ Network Handbook: Preparing for Surgery.This handbook is provided to all new members of the PMP Pals’ Network.

 


Articles posted in PMP Pals and on www.pmppals.org are written from the perspectives of patients and their families and are not intended to substitute for licensed, professional legal or medical advice. Each patient is unique and should seek specific counsel from their own licensed healthcare professional. Copyright © 2012 by the PMP Pals’ Network. All rights reserved.

Diagnostic CT Scans for Appendix Cancer

Several diagnostic tools, including scans and laboratory tests, are utilized to detect and monitor cancer. Among the tools most commonly used are those that utilize imaging techniques. Physicians use X rays, CT Scans, MRIs, Nuclear Scanning, PET Scans and Ultrasonography as tools for diagnosing cancer and metastasis.

In general, CT scans are most commonly ordered for Appendix Cancer and Pseudomyxoma Peritonei patients, however, MRI scans are now being considered for pre and post treatment monitoring. Consult with your physician about which type of scan is most appropriate for your particular medical care.

Prior to the scheduled day of the scan, ask your physician or radiologist the following questions:

Why is this scan being ordered?

Are any risks associated with this test?

Will the test be taken on an outpatient basis?

What “preparations” if any, are required prior or following this test? Fasting? Bowel cleansing?

Can I drive myself home following the test?

How much will the test cost?

Is the cost covered by my healthcare insurance?

Will the test be performed locally?

Who will administer the test?

When will the results be available to me?

What will I feel during the test?

Is the test uncomfortable in any way?

Will I feel claustrophobic in taking this test?

Can I take this test if I have a pacemaker, implants or hearing aids?

How long does the test take?

Does the test have any side effects?

How often should a patient be scanned?

General guidelines differ for American patients, who are generally monitored (including scans) quarterly during their first year, post treatment, as compared with patients in Australia, Canada and Europe. These differences in schedules may possibly be based on individual healthcare (insurance) plans.

Due to recent concerns about radiation exposure from CT scans, some patients have opted to reduce the number of scans during their first and subsequent years post treatment. These concerns are best discussed with your radiologist and/or surgical oncologist.

Regardless of your testing schedule, be cognizant of any changes in physical symptoms, i.e., bloating, unexplained pain, indigestion, elimination, etc.

Generally, if you remain disease free, your monitoring schedule will be reduced to annual tests, years five through ten, post treatment. After the tenth year, annual monitoring is often discontinued.

Once again, each patient’s case differs; therefore, it is necessary to address questions about your needs for scans to your surgical oncologist specialist.


Articles posted in PMP Pals and on www.pmppals.org are written from the perspectives of patients and their families and are not intended to substitute for licensed, professional legal or medical advice. Each patient is unique and should seek specific counsel from their own licensed healthcare professional. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved.

Disability Benefits Expanded for Cancer Patients

The Social Security Administration (SSA) is expanding the list of "Compassionate Allowances" providing expedited disability decisions, and therefore, benefits to Americans with the most seriously disabling medical conditions.

The Compassionate Allowances program provides for patients with specific medical conditions to receive disability decisions within days instead of waiting months or years.

Fifty two (52) new Compassionate Allowances conditions have been added to the previous list of covered conditions. The newly added diagnoses include cancers, neurological disorders, and rare diseases.

The Compassionate Allowances program focuses on medical diagnoses that clearly meet the statutory standard for disability. When individuals with those diagnoses apply for disability assistance, they receive expedited reviews of their claim, resulting in notification of the final decision within days.

The 52 new Compassionate Allowances conditions become effective in August 2012, bringing the total to 165. The updated list of eligible medical conditions is posted on SSA's website with the 52 newly added conditions are highlighted in red.

Expedited application process

Beginning April 21, 2012, adults who file for SSA benefits online have the option to electronically sign and submit their medical records authorization forms, enabling them complete their disability application in a single online session rather than printing, signing and mailing paper forms.

Among the many cancers and rare diseases included under this program are:

Bladder Cancer - with distant metastases or inoperable or unresectable 
Gallbladder Cancer
Kidney Cancer - inoperable or unresectable
Large Intestine Cancer - with metastasis,inoperable, unresectable recurrent
Liver Cancer
Ovarian Cancer - with distant metastases or inoperable or unresectable
Pancreatic Cancer
Peritoneal Mesothelioma
Pleural Mesothelioma
Small Intestine Cancer - with metastases or inoperable, unresectable or recurrent
Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent
Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent

For more information visit the Financial Aid page on www.pmppals.org


Copyright © 2012 by PMP Pals’ Publishing/All rights reserved

Dr Paul H Sugarbaker and his colleagues will present a workshop on the Management of PeritonealMetastases,June 21-22, 2012, at the Washington Cancer Institute, located at MedStar Washington Hospital Center in Washington DC

The workshop will feature:

Live surgery broadcast from WHC

Expert panel discussion

Case presentations

Featured topics will include:

CRS Technology, HIPEC and Post Op Patient Care

Management of Peritoneal Metastases from Colon and Ovarian Cancers

Laparoscopic and Radiologic Management of PSMs

Perioperative Chemotherapy

Appendiceal Malignancy & Peritoneal Mesothelioma Management

In an interview with PMP Pals earlier this month, Dr Sugarbaker explained,

“The emphasis of this year's workshop is on "proactive management".  If we can get patients with appendix malignancy, peritoneal mesothelioma, and colorectal cancer treated early with a small volume of disease, the long term results are superior and the quality of life issue less prominent. 

“If these treatments become more accepted for colorectal cancer patients with peritoneal metastases we are expecting approximately 15,000 new patients per year in the United States.  Certainly, that will require many additional centers of excellence for CRS plus HIPEC."

>>>Click here for additional details and to register for the workshop


Copyright 2012 by the PMP Pals' Network

The Fourth International HIPEC Treatment Workshop for the Treatment of Peritoneal Carcinomatosis will be held in Tlaplan, Mexico, April 26 and 27.

This event will be hosted by the National Cancer Institute of Mexico.

Treatment for the diagnoses of colon, gastric (stomach) cancer, and ovarian cancer, as well as Pseudomyxoma Peritonei, will be discussed including presentations by the following surgical oncologists:

El Instituto Nacional de Cancerologia le invitan a participar en el IV Curso Taller de Peritoneal Carcinomatosis & HIPEC, en Tlaplan, Mexico, 26 y 27 de Abril, con presentaciones de este profesores (y mas!)

For more information:

Por mas informacion:

Dr Juan Manuel Medina Castro, Mexico: criteria for patient selection for HIPEC treatment

Dr Juan Manuel Medina Castro, Mexico, en procedimiento selectivo seleccion del paciente de HIPEC

Dr Marcello Deraco, Italy: 1) HIPEC treatment for ovarian cancer 2) state of the art HIPEC treatment

Dr Marcello Deraco, Italy, en HIPEC en ovario y historia y estado del arte de HIPEC

Dr Jesus Esquivel, USA: HIPEC for the treatment of Pseudomyxoma Peritonei

Dr Jesus Esquivel, USA, en HIPEC in Pseudomyxoma Peritonei

Dr Horacio Noe Lopez Basave, Mexico: coordinator of HIPEC procedure reviews

Dr Horacio Noe Lopez Basave, Mexico, coordinador de HIPEC procedimiento selectivo

Dr Paul Sugarbaker, USA: HIPEC for the treatment of colon cancer carcinomatosis

Dr Paul Sugarbaker, USA, en HIPEC en carcinomatosis de colon

For more information see the CONFERENCES and EVENTS page at www.pmppals.org



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved

PMP Pals' Network Celebrates 14th Year of Service: 1998-2012

This month marks the beginning of the fourteenth year of service for the PMP Pals' Network!

Our volunteer "grass roots" program serves patients and their families in 49 countries and in more than a dozen languages!

Developed by a cadre of ten dedicated patients and family caregivers in Holland, the United Kingdom and the United States in 1998, our goals have remained consistent and proven to be successful for more than a decade.

Our mission has been to assist patients in obtaining the best possible medical care/treatment for rare cancers/diseases affecting the digestive system,

To educate the public about our rare disease, treatments for our disease and the need to support research for treatment,

To provide practical resources and support (financial, health insurance, transportation, etc.)

To provide pre screened, trained and vetted "Pal Mentors" to share helpful suggestions for pre and post treatment recuperation, 

And, in conjunction with our first goal, to interview, vet and publicize responsible healthcare providers who demonstrate expertise in the treatment of our disease.

Of the Founding Members of the PMP Pals' Network, including Pal Family Caregivers Bernard Goldberg, Sara Shatford Layne PhD, Tom Panek and Audrey Ragan, three remain living today, with octogenarian Mr. Panek having passed away due heart disease three years ago.

The Founding Members of the PMP Pals' Network, included Pal Patients, Elizabeth Collins, Henry den Hartog PhD, Gabriella Graham, Charlotte Lindon, Edie McCall and Joan Panek, two remain living today, with Mrs. Collins, Dr den Hartog, Mrs. McCall and Mrs. Panek having passed away due to complications from cancer.

Surviving Pal Patients, Mrs. Lindon and Mrs. Graham, share the same diagnosis of metastatic mucinous adenocarcinoma with Pseudomyxoma Peritonei. Neither of these patients have ever been cancer free. Both are veterans of numerous surgeries for palliative care, and remain active participants in the PMP Pals' Network today, in spite of their original poor prognoses. Mrs. Lindon recently celebrated her 91st birthday!

The PMP Pals' Network is proud to provide patients and their families with the most comprehensive source of practical information regarding Appendiceal Cancer,Pseudomyxoma Peritonei and all Peritoneal Surface Malignancies via www.pmppals.org, a site so popular that it has been copied by other "support groups" and healthcare industry companies.

The "Pals" pride themselves in providing "real time" and face-to-face support and resources for patients and their families. In spite of the rarity of our various diagnoses, we are able to personally match liked minded patients and their families, in a manner that provides true comfort and assistance at a time when it is needed the most.

PMP Pals puts the "CAN DO!" in Cancer! ®

We CAN outlive our prognosis!

We CAN live well in spite of a challenging and rare diagnosis!

We CAN find a cure for our rare disease!

Thank you for your participation in the PMP Pals' Network!


Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved

I Completed a Triathlon After Cancer!

By PMP Pal Appendix Cancer Survivor, Jeanne

I participated my first triathlon after I had cancer.  For many years prior to cancer I had thought about being in a triathlon - it would be a real physical accomplishment! What a way to impress friends!  Just the word triathlon invokes a sense of awe.  Most people think of the Ironman with its grueling distances.  The triathlon I chose was a shorter distance, called sprint distance - 1/3 mile swim, 9 mile bike, and 2.4 mile run.

While in my thirties, as my three sons became more self-sufficient, I had taken up bike riding and particularly enjoyed riding with my bike club.  Shortly after turning 40, my bike riding was briefly interrupted when I was diagnosed with melanoma.  It was caught early only required one surgery.

Following a complete recovery, I rode around the lake near our house feeling more powerful than ever because I had beaten “The Big C”.  I reasoned that the chances of getting cancer again were miniscule. I vowed to myself that I would still be pedaling this bicycle around this lake when I was 50!  The idea that I would participate in a triathlon one day was still there - I figured there was plenty of time.

Over the next four years, cancer returned two more times interrupting my reverie that I would do a triathlon one day.  This time I was diagnosed with appendiceal cancer. Two abdominal cytoreductive surgeries with HIPEC, each requiring a month in the hospital, and three months recovery, put me at a physical low.

I flirted with discouragement that I would ever even ride my bicycle again.  Yet, as I walked and trained and slowly built myself back up, I started to ride again and my thoughts turned back to participating in a triathlon.  It felt impossible.  I felt like I could never get up that much energy and stamina.  That’s when I took a risk and pursued it with renewed vigor.  To complete a triathlon became a statement to me - a statement that I am now a healthy woman!

I expected my biggest challenge to be the physical exertion necessary to train in order to complete the course.  I soon found out my biggest challenge was not physical, but emotional.  Repeatedly, I had to face fear that plagued me with doubts.  First my fear told me I shouldn’t sign up because I’m making an unattainable commitment.  I faced that fear by reaching out to others and recruited my son and a friend to sign up with me.  Then my fear told me I’m too weak to train reminding me I’m a cancer patient.  I faced that fear one night during a training swim when I felt tired yet repeated to myself with each stroke, “I am a healthy woman, I am a healthy woman.”

As race day approached, fear persisted and I compared myself to others who appeared healthier than I.  Afraid I may not complete the event, I joked about just wanting to finish it with some semblance of dignity!  As the race started, I became aware that there was no value in comparing.  I recognized that there was no competition with others, there was no performance requirement - all I had to do was relax and enjoy the experience!

As the race progressed, I did just that - I relaxed and enjoyed my sense of physical wellness.  I exhilarated in the downhill rush of the bike ride and the icy cold sprinkler showers during the run.  I delighted in crossing paths with my son and my friend.  I was warmed when I heard the encouraging yell of friends who came to watch.

As I crossed the finish line, I felt strong and satisfied!  My pre-cancer reverie had come true and I was elated that I had overcome the physical obstacles and faced the fear.  I claimed that “I am a healthy woman!”



Editor’s note: Jeanne has been a member of the PMP Pals’ Network since 1998 and has been cancer free for more than a decade!

Read other inspirational stories like this and view our Pals’ photo galleries on www.pmppals.org




Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

Cancer Patients Are Not Losers!

It happened again today.

The front page of the local paper paid tribute to a local elementary school principal who died from cancer. The headline read “Mrs. Smith Loses Battle with Cancer.”

“Loses battle with cancer.”

What a slap in the face to the memory of Mrs. Smith. What a slap in the face to her grieving family, students and colleagues.

Mrs. Smith, the article continued, died at the age of 52, after battling cancer for nine years.

Nine years, ladies and gentlemen. Nine years of testing, chemotherapy, radiation and surgery.

Does anyone who endures nine years of cancer treatment, sound like a “loser” to you?

Cancer, or any chronic illness, is not for wimps and certainly not for losers. I have never known any cancer patient (and I know and have known thousands, many still living and some who have passed away) whom I would describe as “losers” or having “lost their battle.”

One only needs to take a look at the Memorials page on www.pmppals.org to see that there is not one single loser among the tributes. On the contrary; our memorials page is filled with tributes to    brave warriors.

I have always found it disturbing to hear that any cancer patient has “lost their battle with cancer.” Imagine if we referred to deceased soldiers as “Sgt. Jones’ body was returned to his family in the US for burial after he lost his battle with the Taliban.” The public, including family, friends, veterans’ groups and politicians would be outraged, by such a statement, and rightfully so.

As an incurable cancer patient who has been fighting a fifteen year battle I am outraged by what appear to be daily reports in the media of celebrities and neighbors down the street “losing their battle with cancer.” As a patient advocate who has witnessed the bravery of thousands of my fellow patients, I am offended.

Ad an editor who has written more obituaries than I care to count, I simply will not allow the phrase “lost their battle with cancer” to be included in any obituary that I post.

The human body was designed or evolved (take your pick) to live a finite number of years, give or take 75. One way or another, either due to chronic illness or so called “natural causes” the physical body expires.

 We don’t describe a deceased 76 year old who died of “natural causes” as having lost their battle with life. Whether a human dies as a 6 year old leukemia patient or a 76 year old with atherosclerosis, that person’s humanity and spirit far outlives a few mere decades of physical life.

The physical body is temporary. The essence the person who lived in that body is what we remember; what they taught us, how we enjoyed knowing that person, how having that person in our lives made us feel better, how that person contributed to the good of his/her family, community or the world…these are the factors that truly matter.

These are the factors of survivorship and survivors don’t lose the battles; their positive influence on those whose lives they touched while they were alive, always remain and lead to victory.




This is an excerpt from the book “Cancer Can’t Defeat Us!” by Gabriella Graham/ Copyright © 2012 by Red Tailed Hawk Publishing/All rights reserved.

Fred Suggests a Frank Discussion About Post Op Recovery!

By “Pal” member, Fred, from the USA

“A frequent concern that arises among patients who are planning to, or have had CRS and HIPEC, is the length of time required to recover.  A corollary to recovery time is what “recovery” actually means.   Before addressing these issues, I should emphasize that each patient’s experience will differ depending on a host of factors (e.g., age, general health, extent of tumors, type of cancer, invasiveness of surgery, etc.).  There is no simple rule of thumb to determine an expected recovery time.

What is recovery?  How do patients and surgeons define “recovery?”

This question is one that never occurred to me in my initial discussions with my surgeon; as a result there was a misunderstanding.  He did not mince words regarding the seriousness of my condition and the necessary surgery.  However, he indicated that I should be back to “normal” in a few months.  The problem was his idea of “normal” and mine were different.  I viewed “normal” as my state of health prior to developing the disease.  His notion was apparently being able to return to work and everyday activities free of the disease. 

In brief, my post operation weight dropped from about 150 to 109 before recovering to 118, which is my new “normal” (permanent weight loss is a common result of the surgery) and the necessary removal of various organs and sections of organs has had a major impact on my digestive system, which in turn has affected my quality of life in certain ways.  As I’ve often joked, I’ve developed a close personal relationship with my bathroom and have become much more aware of the locations of public facilities.  Thus, in one sense I’ve never “recovered” from the surgery; I have not returned to my prior state of health.

However, I did return to work, returned to my nature photography, and took up competitive table tennis after a 30 year hiatus. I am physically able to do most things I did pre surgery, including working out at a fitness center several times a week, but am acutely aware of the limits due to the digestive issues.

Time frame for recovery

My particular surgery was about 10 hours. I spent almost a month in the hospital before being released, then another few days a week later due to dehydration. 

At home, I began walking around the neighborhood gradually lengthening the time and distance as I felt stronger   I was able to return to my desk job on a part time basis 3 months after surgery and on a full time basis a couple of months later. 

I began doing my nature photography carrying very limited equipment about 4 months after surgery and a full backpack about a year after surgery.

Recovery, the “new normal”, and Senior Olympics!

I retired 14 months after the surgery and began playing table tennis at a local club soon after, winning two bronze medals and a silver medal in the local senior Olympics and a bronze medal for my talent level at the 2011 U.S. nationals this past December. 

Looking back, I’d say full recovery for me, which I’d define as reaching my new “normal,” took about 9-12 months.  As noted above, and as a former economist, I again emphasize that I represent just one data point.  Recovery time will vary considerably across individuals.”





Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

Should I Use Marijuana for Pain Relief Before Surgery?

Today’s question comes from SS who is preparing for CRS and HIPEC:

“I am scheduled for CRS and HIPEC in ten days. I am experiencing a lot of pain, but my physician has only prescribed Tylenol and no other pain killers. My son has suggested that I use marijuana for pain relief. Are there any accounts of PMP patients using marijuana to relieve pain?”

GG responds:

“When you experience pain, you must bring your symptoms to the attention of your attending physician. S/he may be able to refer you to a pain management specialist.

Since you are scheduled for surgery in ten days, you must be especially careful to discuss any medications, even vitamins and “natural” herbs, whether prescribed or OTC, with your anesthesiologist and your surgical oncologist, as these medications may have an effect on your preparation and recovery from surgery.


Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org