Remarks for Bambina43 - Appendix Cancer w/mets to the Liver - Surgery pending HIPEC planned as part

Hello Bambina43~

Since there will be others who will also have the same questions in the future, I decided to put this on a “separate topic forum” so that others who come after you can benefit by the same information.  This has turned into a mini-tutorial.  I already had most of the information stored in my WORD file because others have written previously asking about HIPEC.  It is available in relatively few medical facilities compared to the many hospitals we are blessed to have here in America.  So see my remarks following your entry which I have copied here.

You wrote here: “https://csn.cancer.org/node/316173

Bambina43 - May 05, 2018 - 2:40 am

Hello Everyone,

I'm new to this site and I recently found out I have peritoneal cancer that has metastasized to my liver from my appendix surgery 3 years ago. I’m going in for surgery on 05/08/18 to remove the cancer and then have the HIPEC. This is a first for me, can anyone give me any information on what to expect before and after?

Thank You”

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My remarks:

Though the hour is late as far as informing you about Peritoneal Cancer, and it’s now Sunday morning, May 6, 2018, I don’t expect you to be in a position to quickly absorb this information, or even read all of it at this late hour.  So just “pick & choose” what references you wish to read or listen to the most.  Many are videos.  Perhaps there are those in your family/friend circle who might want to read this letter.  If so, they will understand in greater detail just what you have experienced (& endured) so far, and what the prognosis will be, depending on the outcome of this pending surgery. 

The hour of your surgery is fast approaching.  Since you have just written here for the first time, it has not been possible for us to have previous conversations.  And so, I’ll have to operate under the assumption that you had surgery for an appendix cancer 3 years back, and have now experienced a recurrence.  And as part of your treatment regimen going forward, you were told by your surgeons that you will be able to have the HIPEC treatment.  I am also assuming that you are at one of the major hospitals who major in gastroenterology and their facility is well-equipped to administer this type of chemo treatment.

  Now you didn’t tell me if you just had an appendectomy 3 years ago without any cancer diagnosis, or if you had “Appendiceal” cancer.  So I’m left to wonder exactly where to begin.  So I will just have to “assume” that your first diagnosis was “Appendix cancer” and that it has now spread to the Liver.  Neither do I know what type of treatments you had if that was your diagnosis and what the surgery entailed.  Nevertheless, we know what you are now dealing with.  And in that regard, I will try to be helpful.  Not very many people write on this forum, and I feel you deserve a reply, so allow me to try.  I write from the standpoint of having been diagnosed with Peritoneal Carcinomatosis and Ovarian Cancer Stage IV back in the Fall of 2012. 

When I was at the University of Pittsburgh Medical Center for my own Cytoreductive Surgery, I met a young man 23 years of age.  He was undergoing the HIPEC treatment for his “Appendix or Appendiceal” cancer.  So if you had cancer at the time of your surgery, it would most likely mean that your diagnosis is “Appendiceal Cancer with metastasis to the Liver.  Be that as it may, I’m sorry that you have this cancer diagnosis. 

It’s difficult for me to be brief, but in my own case, if you read my “about me” page, by clicking on the photo of my husband and me, you will see that my cancer was first found in the Peritoneal fluid of my abdominal cavity.  My local ER doctor performed a CT scan and I learned some new cancer terms I had never heard before.  The diagnosis was “Peritoneal Carcinomatosis.”  When I went for a SECOND opinion to UPMC, a PET/CT scan was performed as well as exploratory surgery, and cancer was found in both my ovaries.  So most likely my primary cancer was Ovarian cancer.  In my case there were untold numbers of tumors floating around in the peritoneal fluid in my abdominal cavity.  My doctor pulled up my scan on his computer and showed me the film.  It was like “fireworks on the 4^th of July!”  There were so many “dots”. 

UPMC recommended I return home and first have Chemotherapy of Carboplatin/Paclitaxel (Taxol), then return for re-evaluation.  That regimen reduced my tumor size and count enough to undergo Cytoreductive Surgery.  My Cytoreductive surgery (CRS) involved the removal of both ovaries & fallopian tubes, gallbladder, spleen, omentum and removal of sections of my intestines.  It is a major surgery.  And to be truthful, the early days I questioned whether or not I had “bit off more than I could chew”!

Just prior to the surgery, my UPMC surgeon, Dr. David Bartlett, indicated that he might, or might not, administer HIPEC at the end of my surgery.  That would depend on the number and size of any remaining tumors I might still have.  When I awoke, he had not given me the HIPEC procedure.  So I wasn’t “cancer free” when I emerged from the operating room.  There were still tumors, and although I wish I had been able to have the HIPEC treatment, I had to leave that up to the best judgment of my surgeon. 

HIPEC stands for Hyperthermic Intraperitoneal Chemoperfusion. 

Since I had my Cytoreductive surgery performed by Dr. Bartlett, I will basically use references related to UPMC’s surgical procedures.  I will tell you that since my surgery back in 2012, I have had “targeted radiation” to 3 tumors on the Caudate Lobe of my Liver in 2014.  Since that time I have had repeated treatment sessions of Carboplatin/Paclitaxel (Taxol).  I now have cancer in my Liver, but no more radiation or surgery is planned since my cancer is systemic (located in more than one place in my abdomen.) I just completed my 4^th (6-session) regimen of chemotherapy on April 26, 2018.  I will be having a PET/CT scan on the 10^th of May to determine the effectiveness of those treatments. 

I had “all” non-essential organs removed at the time of my CRS July 1, 2013.  I can’t “forfeit” anything else.  So for me, the only recourse is to undergo adjuvant (post-op) chemotherapy to “tamp down the spread of these tumors” when things progress, as they continue to do.  (I had already had an appendectomy at age 12 and a partial hysterectomy at age 36, or else those organs would have been removed as well.)  I am blessed to be alive 5 years and counting.  So far my quality of life has been good even though there have been multiple difficulties along the way.  Now that’s not to say that the surgery and repetitive chemo treatments were a piece of cake.  But we have to “go with what we’ve got and make the most of our particular diagnosis.”  And so it will be for you.   And in that regard, I’m including a reference relative to Appendix (aka Appendiceal) cancer with metastasis to the Liver from “Cancer.net.”  I would suggest that you pay attention to all the different segments of that link, as it will cover symptoms, diagnosis, stages and treatment protocol, etc.

Since I don’t know who your surgeons will be and where surgery will take place, I’ll give you information that should be the same no matter the facility where you are being treated.  However, HIPEC treatment is not available everywhere.  We know the HIPEC will be administered at the end of the surgical procedure.  And it’s been noted in clinical trials that those who are eligible for HIPEC fare better than those who do not have that intraperitoneal procedure.  So I’m glad that you are going to be able to have it.  And I trust that you are at one of the highly-rated hospitals that perform HIPEC as part of their specialty.  With the HIPEC treatment the intense chemo is kept within the abdominal cavity and is not circulated throughout the entire body.  In that way you avoid chemotherapy circulating throughout your entire body, going places it doesn’t need to go, and damaging delicate tissue in its wake!  It will also kill tumors too small to be picked up on any scan. 

So for now, with limited knowledge of your past treatment protocol up to this point, I hope that the references will be helpful.  You do know that you are your own best advocate, and that you should be able to ask any and all questions that are on your mind, and expect them to be answered by your medical team.  We here can only share how we have fared, but that’s not to say it will be identical in every patient quite obviously.   So with surgery only 2 days away, I don’t expect to hear from you now, but during your recuperative period, perhaps you would like to check back in and let us know how things went. 

It’s often been said, and is ever so true—“Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” 

Love & prayers that the sun will come out on Tuesday the 8^th 

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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1.     https://www.cancer.gov/publications/dictionaries/cancer-terms

1a.  https://www.cancer.gov/publications/dictionaries/cancer-terms/search?contains=false&q=peritoneal

First of all, this is one site that I think is invaluable.  It is a National Cancer Institute dictionary of medical terms with an “AUDIO” symbol so we can figure out how to pronounce them.  So I just chose the word “peritoneal” to illustrate how it works.  You will be hearing a lot of words that you’ve never heard before.

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1b.  https://www.cancer.gov/publications/dictionaries/cancer-terms/def/metastasis

listen (meh-TAS-tuh-sis)

The spread of cancer cells from the place where they first formed to another part of the body.  In metastasis, cancer cells break away from the original (primary) tumor, travel through the blood or lymph system, and form a new tumor in other organs or tissues of the body.  The new, metastatic tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the lung, the cancer cells in the lung are breast cancer cells, not lung cancer cells. The plural form of metastasis is metastases (meh-TAS-tuh-SEEZ). “

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2.     https://www.cancer.net/cancer-types/appendix-cancer/introduction

Appendix Cancer: Introduction

Approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Appendix Cancer. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

About the appendix

The appendix is a pouch-like tube that is attached to the cecum, which is the first section of the large intestine or colon. The appendix averages 10 centimeters (about 4 inches) in length. It is considered part of the gastrointestinal (GI) tract. Generally thought to have no significant function in the body, the appendix may be a part of the lymphatic, exocrine, or endocrine systems.

Appendix cancer occurs when healthy cells in the appendix change and grow out of control. These cells form a growth of tissue, called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. Another name for this type of cancer is Appendiceal cancer. A benign tumor means the tumor can grow but will not spread.

Types of appendix tumors

There are different types of tumors that can start in the appendix:

1. Carcinoid tumor. A carcinoid tumor starts in the hormone-producing cells that are normally present in small amounts in almost every organ in the body. A carcinoid tumor usually starts in either the GI tract or lungs, but it also may occur in the pancreas, a man’s testicles, or a woman’s ovaries. An appendix carcinoid tumor most often occurs at the tip of the appendix. Approximately 50% of all appendix tumors are carcinoid tumors. This type of cancer usually causes no symptoms until it has spread to other organs and often goes unnoticed until it is found during an examination or procedure performed for another reason. An appendix carcinoid tumor that remains confined to the area where it started has a high chance of successful treatment with surgery. Learn more about carcinoid tumors.

 

2. Appendiceal mucoceles. Mucoceles are swellings or sacs from swelling of the appendix wall, typically filled with mucous. There is a range of benign to malignant conditions that can occur in the appendix to form a mucocele. Two of these conditions are mucinous cystadenomas and mucinous cystadenocarcinomas. Mucinous cystadenomas are benign and do not spread and they are similar to adenomatous polyps that can develop in the colon. When contained in the appendix, they can be completely removed with surgery. However, if the appendix ruptures, the cells may spread in the body cavity and continue to secrete jelly-like substance called mucin in the abdomen. The build-up of mucin can lead to abdominal pain, bloating, and changes in bowel function including bowel obstruction (blockage). Mucinous cystadenocarcinomas can have similar effects with mucin in the abdomen but they are malignant, meaning they can spread to other parts of the body.

 

3. Colonic-type adenocarcinoma. Colonic-type adenocarcinoma accounts for about 10% of appendix tumors and usually occurs at the base of the appendix. This type of cancer looks and behaves like the most common type of colorectal cancer. It often goes unnoticed, and a diagnosis is frequently made during or after surgery for appendicitis. Appendicitis is inflammation of the appendix that can cause abdominal pain or swelling, loss of appetite, nausea, vomiting, constipation or diarrhea, inability to pass gas, or a low fever that begins after other symptoms.

 

4. Signet-ring cell adenocarcinoma. Signet-ring cell adenocarcinoma is very rare and considered to be more aggressive and more difficult to treat than other types of adenocarcinomas. This type of cancer usually occurs in the stomach or colon, and it can cause appendicitis when it develops in the appendix. It is called signet-ring cell adenocarcinoma because, under the microscope, the cell looks like it has a signet ring inside it.

 

5. Goblet cell carcinomas/Adenocarcinoids. Goblet cell carcinomas have features of both adenocarcinomas and carcinoid tumors. They are more aggressive than carcinoid tumors, and treatment is often similar to treatment for adenocarcinoma.

 

6. Paraganglioma. This is a rare tumor that develops from cells of the paraganglia, a collection of cells that come from nerve tissue that persist in small deposits after fetal (pre-birth) development. Paraganglia is often found near the adrenal glands and some blood vessels and nerves including in the head and neck region of the body. This type of tumor is usually considered benign and is often successfully treated with the complete surgical removal of the tumor.

 The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide…”

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  3.     https://www.cancer.net/cancer-types/appendix-cancer/treatment-options

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. It is the most common treatment for appendix cancer. Most often, appendix cancer is low-grade (see Stages and Grades) and, therefore, slow-growing. Often it can be successfully treated with surgery alone. A surgical oncologist is a doctor who specializes in treating cancer using surgery.

Types of surgeries for appendix cancer include:

• Appendectomy. An appendectomy is the surgical removal of the appendix. It is usually the only treatment needed for an appendix carcinoid tumor smaller than 1.5 centimeters (cm).

If appendix carcinoid cancer is discovered unexpectedly after an appendectomy that was performed for what was originally thought to have been appendicitis, a second operation to remove more tissue using surgical techniques (described below) is often recommended.

• Hemicolectomy. For a carcinoid tumor larger than 2 cm or appendix cancers that are not carcinoid, a hemicolectomy may be recommended. This is the removal of a portion of the colon next to the appendix. Removal of nearby blood vessels and lymph nodes is often done at the same time. A right hemicolectomy is surgery performed on the right side of the colon. Even though a large amount of the large intestine is removed, the operation usually does not result in the need for a colostomy or stoma, which is an opening in the abdomen through which the bowel contents are emptied into a bag.
•  Debulking surgery. For later-stage appendix cancer, debulking (or cytoreduction) surgery may be performed. In this surgery, the doctor removes as much of the tumor “bulk” as possible, which can benefit the patient even though it will not remove every cancer cell from the body. Sometimes, debulking surgery will be followed with chemotherapy (see below) to destroy remaining cancer cells.

When the tumor produces mucous, much of the bulk of the abnormal tissue often is not cancer but is due to accumulation of the mucous. The mucous looks like jelly, and this condition is often referred to as “jelly belly.” Removing the mucous from the abdomen can often relieve a patient’s symptoms of bloating.

• Removal of the peritoneum. There is some controversy about the extent of surgery that is necessary in patients with slow-growing, low-grade appendix cancer that has spread beyond the colon to involve other areas of the abdomen. Some surgeons recommend aggressive surgery that includes the removal of the peritoneum (the lining of the abdomen) to remove as much of the cancer as possible. This type of surgery is also called a peritonectomy.

 In patients with a very slow-growing tumor, such surgery can be effective in removing the majority of the cancer cells. This can benefit the patient by reducing the amount of cancer, even if it does not remove every cancer cell. However, it is a difficult operation that can have significant side effects. The doctor will consider many different factors, such as the patient’s age and overall health, before recommending this extensive surgery. Patients should talk with a specialist with expertise in this type of procedure beforehand.  

Learn more about the basics of cancer surgery…”

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4.     https://www.cancer.net/cancer-types/appendix-cancer/questions-ask-doctor

Appendix Cancer: Questions to Ask the Doctor

Approved by the Cancer.Net Editorial Board, 04/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

 Questions to ask after getting a diagnosis 

1. What type of appendix cancer do I have?
2. Can you explain my pathology report (laboratory test results) to me?
3. Is the cancer considered to be localized, regional, or advanced? What does this mean?
4. How often do you treat people with appendix cancer?
5. What are my treatment options?
6. What clinical trials are available for me? Where are they located, and how do I find out more about them?
7. What treatment plan do you recommend? Why?
8. What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?
9. What is my prognosis?

Questions to ask about having surgery

 Can surgery be done to remove all of the cancer?

1. Can surgery be done to debulk the cancer? How will this help me?
2. How experienced is the surgeon with this type of operation?
3. What will my recovery be like after this operation?
4. Do you recommend chemotherapy or other treatment after surgery?

Questions to ask about having chemotherapy or radiation therapy

1. What type of treatment is recommended?
2. What is the goal of this treatment?
3. How long will it take to give this treatment?
4. What side effects can I expect during treatment?
5. What are the possible long-term effects of having this treatment?
6. What can be done to relieve the side effects?

Questions to ask about choosing a treatment and managing side effects

1. Who will be part of my health care team, and what does each member do?
2. Who will be leading my overall treatment?
3. What are the possible side effects of this treatment, both in the short term and the long term?
4. How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
5. Could this treatment affect my sex life? If so, how and for how long?
6. Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?

Questions to ask about planning follow-up care

1. What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?
2. If I’m worried about managing the costs of cancer care, who can help me?
3. What follow-up tests will I need, and how often will I need them?
4. Who will be leading my follow-up care?
5. What support services are available to me? To my family?
6. Whom should I call for questions or problems?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide…”

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 5.     http://www.upmccancercenter.com/cancer-care/surgical-oncology/koch-regional-cancer-therapy-center/treatments/hipec?&gclid=COKrsOvtyNMCFV6BswodqugDQg

“Hyperthermic Intraperitoneal Chemoperfusion (HIPEC) Treatment

Many tumors too advanced for surgical removal remain confined to a single organ or region of the body. Hyperthermic intraperitoneal chemoperfusion (HIPEC) is a surgical technique that we use to treat these types of tumors.

What Can I Expect During Hyperthermic Intraperitoneal Chemoperfusion?

In HIPEC, our surgeons may first debulk, or partially remove, the tumor prior to treating.

• Afterwards, the surgeon makes two small incisions and inserts tubes:
• One to pump the heated chemotherapy solution into your body.
• One to circulate the fluid back to the heating equipment.
• Once the treatment begins, the temperature in the chest cavity rises to between 105 and 107.6 F (40.6 and 42 C).
• The chemotherapy solution circulates for several hours to kill the cancer cells.
• The pump is turned off to allow the treated region to cool to normal temperature.

6.     https://www.youtube.com/watch?v=bqJiyMEMamk

HIPEC Patient Education Video Series - Introduction

 HIPEC Treatment - Published on Sep 17, 2012

7.     https://www.youtube.com/watch?v=bdNtah1mpg4

Published on Sep 17, 2012 - UPMC physician's assistant discusses HIPEC pre-operative workup, orders and consent forms

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8.     https://www.youtube.com/watch?v=NHNoeMxqnro

Published on Sep 17, 2012 - A UPMC nurse practitioner discusses Perioperative care

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9.     https://www.youtube.com/watch?v=uI2GYjxM8_o

18.09 minutes - HIPEC Patient Education Video Series - Operating Room Nursing & Perfusion

Published on Sep 17, 2012 - A UPMC clinical specialist discusses the operating room nursing and perfusion aspects of HIPEC

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10.                        https://www.youtube.com/watch?v=VRfU-oOBNGU

Uploaded on May 17, 2011- Dr. David Bartlett explains how UPMC Cancer Centers streamlines cancer care.

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11.                        https://www.youtube.com/watch?v=J6DpWGEKQ3g

Uploaded on May 17, 2011- Dr. David Bartlett discusses treatment options for cancer that has advanced beyond surgical treatment.

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12.                        https://www.youtube.com/watch?v=f3CuRx7JaDo

Hyperthermic Intraperitoneal Chemotherapy for Ovarian Cancer

Published on Sep 17, 2012 - Dr. Steven Ahrendt discusses post-operative issues and follow up care.

[My note: This is my doctor who came in to visit me every day, following my Cytoreductive Surgery, at Passavant Hospital in Pittsburgh.] _____________________________________________

13.                        https://www.youtube.com/watch?v=ot3YAxpOLR0

HIPEC Shows Promise for Treatment of Abdominal Cancers

Published on Apr 5, 2013 - David Bartlett, MD, vice chairman for surgical oncology and gastrointestinal services at UPMC, discusses HIPEC as an approach that may improve the long term survival of patients diagnosed with abdominal cancers when used in conjunction with other cancer therapies.

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14.                        https://www.youtube.com/watch?v=eiAu-LHQHoY

15.                        https://www.youtube.com/watch?v=OHK23AWoG0Q

Dr. David Bartlett discusses the HIPEC program at UPMC

Published on Jan 22, 2014 - Hyperthermic (or Heated) Intraoperative Peritoneal Chemotherapy (HIPEC) is used to treat cancers that have spread to the lining of the abdominal cavity, such as those of the appendix, colon, stomach, and ovaries.

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18.                        https://www.youtube.com/watch?v=UeDDYt_5-Gw

Published on Feb 6, 2014 - Hyperthermic intraperitoneal chemotherapy, or HIPEC, is a treatment option for patients with advanced cancers that have spread to the abdominal cavity or peritoneum.  First, the doctor performs an operation to remove all visible tumors from the abdominal cavity. Then, the HIPEC is administered, which is a heated chemotherapy treatment aimed at killing any remaining cancer cells that cannot be seen.

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19.                        http://www.hipec.com/

20.http://www.hipec.com/peritoneal-cancer/treatment-options/

“…Peritoneal Cancer - What is peritoneal cancer? ……………….Incidence ……………..Symptoms ……………..Diagnosis

o    Treatment options

o    Treatment with palliative intent

o    Treatment with curative intent…”

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21.http://www.hipec.com/hipec/

“The HIPEC-treatment - The HIPEC treatment strives to radically remove all cancer cells from the abdominal cavity by combining surgery with heated chemotherapy in the abdominal cavity. The goal of this treatment is to promote long-term survival or even to cure the patient. The operation is performed under general anesthesia and typically lasts for 6 to 9 hours. However, lengthier procedures may be required.

Learn more about the HIPEC treatment…”

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22.http://www.hipec.com/hipec/treatment-after-hipec/

Treatment after HIPEC and results

“Although the HIPEC procedure is performed with the intent to cure a patient, it should be realized that peritoneal cancer is an aggressive disease, which often recurs even after a successful HIPEC-procedure. Prognosis after HIPEC is influenced by many factors such as the origin and the extent of the disease at the time of diagnosis, the possibility to remove all visible cancer during surgery and the condition of the patient. Certainly not all patients are cured after a HIPEC-procedure but generally speaking, survival after HIPEC is expressed in years rather than in months. Cure may be achieved in select patients.

To further improve outcomes after HIPEC, the treating physician may advise additional systemic chemotherapy. Such chemotherapy, which is typically started four to six weeks after the HIPEC procedure, is administered by infusion and/or pills. The aim of the chemotherapy is to prevent or delay peritoneal recurrence and metastatic spread to other organs, such as the liver or lungs. The medical term for chemotherapy in this situation is “adjuvant chemotherapy”.

Chemotherapy is not beneficial for every patient following HIPEC, and the decision to pursue chemotherapy depends on many factors that should be considered in every individual patient.

Patients may encounter specific problems and may have questions years after HIPEC. Therefore, close follow-up by a physician with knowledge of peritoneal cancer and HIPEC is highly desirable during this period. The results after HIPEC in terms of survival-benefit vary widely among patients. For example, results depend on origin of the peritoneal cancer and the extent of the disease at the time of diagnosis.

In general, prognosis of patients with pseudomyxoma peritonei in whom complete removal of the tumor can be achieved is good after HIPEC and the majority of such patients may even be cured. Cure is less often achieved in colorectal cancer patients and those with malignant mesothelioma but generally speaking, survival after HIPEC in these patients is expressed in years rather than in months as used to be the case with other treatments.”

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