Gallbladder cancer and peritoneal

Dad needs 2nd opinion~helpful references~personal remarks

Dear “GBC123”

Although you haven’t told us the age of your father or if he has other health conditions in addition to his present cancer diagnosis, I would urge you to have a 2^nd opinion as soon as possible.  And you don’t want one in the same medical group.  Neither do we know in what area of the country you live. While the surgeon is dragging his feet, you can drown yourself in deep despair.  No matter the age, we don’t want to lose one of our family, especially your dad. 

My story has both similarities and differences of that of your dad, but if I can, I will share briefly my own story.  My first diagnosis was discovered when I went to the ER thinking I had a hernia.  A couple of hours and a CT later, I learned the truth about the pain in my abdominal area.  It was diagnosed as Peritoneal Carcinomatosis.  A second opinion at the University of Pittsburgh Medical Center included exploratory surgery, and the PET/CT revealed that cancer was also in both ovaries.  To make a long story short, I was first diagnosed in November of 2012, had 2^nd opinion in December 2012.  Started Carboplatin/Paclitaxel (Taxol) chemotherapy regimen here at home in early February 2013.  Completed treatments and returned to UPMC for Cytoreductive Surgery July 1, 2013.  This surgery was never intended to be “curative” but intended to remove ALL NON-ESSENTIAL ORGANS to which the cancer would likely spread.  Had previously had a partial hysterectomy and appendectomy early in my life, or else they would have removed as well.  But surgery consisted of removal of both ovaries, fallopian tubes, gallbladder, spleen, omentum and resectioning of small intestines. 

Subsequently I would have 3 cancerous nodes on the Caudate lobe of my Liver.  That was successfully treated in 2014 by “Cyberknife”—(targeted radiation).  This is designed to eradicate the tumors without damaging delicate surrounding tissue.

However, since surgery wasn’t curative, I always knew that any treatment I undertook would be to try to stave off continued spread of the cancer.  My tumor markers started rising again in 2015.  So subsequently, I had more chemo in 2015 and then again in 2016.  Now yet again my tumor markers (CA-125) started rising steadily.  Each treatment served to “knock back” or reverse the spread for a time.  However, I always knew it would rear its ugly head again.  So the last time my oncologist said, “If you don’t consider starting another treatment soon, you may get so far down we can’t “bring you back up!” 

In December of 2017, I began to have a sudden rise in tumor markers, and new pains not noted before.  So I told my doctor, “I think I had better do something.”  However, he suggested taking a different drug, DOXIL.  Having researched the toxicity of that drug, and talking with patients here who have been taking it, I said, “No thank you!  The only drug I’m willing to take is the same one I’ve been on.”  He never argued with me, although he said, “I think you are developing an immunity to it, and perhaps you should consider another one.  But I remained firm in my conviction, and I had prayed about it too.  And so I have had 2 more treatments of Carboplatin/Paclitaxel (Taxol) and am scheduled to have my 3^rd one this coming Thursday, February 15^th. 

And may I say, the treatments are not without pain and side effects.  However, so far it seems that the treatment regimen has afforded me about 10 to 12 months of “PFS” progression free survival.  And with a Stage IV diagnosis, the PFS factor is the goal of any treatment.  Thus I had concluded that the period in between the treatments afforded me a quality of life that made them worthwhile.   So my tumor markers will determine whether or not I have indeed become immune to this particular treatment.  No matter whether my original diagnosis was Ovarian Cancer or Peritoneal Cancer, the treatment is still the same for both cancers.  I have told my oncologist, “You know I’m a Christian and I know where I am going when I die.  But I’m not going to kill myself with chemo that is not going to be curative, when the effects exceed the quality of life.”  He totally agreed with my analysis and agreed to schedule me for the same treatment regimen.  However, this will be my last attempt at staving off the spread because I do know that one does develop an immunity to a certain chemo combo after several regimens of that same drug.

I’ve told you all that to say this, “My palliative treatments have afforded me 5 additional years I never imagined God would give me.” 

As for your dad, with what you have told us, it probably means that at the least another opinion by another medical group would suggest at the least, palliative treatment with a chemotherapy regimen.  And if that is the case, it would depend too on your dad’s overall physical condition.  Let’s face it—chemo can be brutal, but it is doable.  That’s the price we pay for gambling on life.  Believe me, I know the dilemma you and your family are in.  It’s a place no one wants to be but who among us gets to pick and choose.  If that were the case, we would never choose cancer, would we?  So while I can say, living with this diagnosis has given me a closer relationship with the Lord, and a deeper compassion for my “fellow cancer patients” in particular, I know that there will be a time when my cancer will refuse to respond to treatments.  There will never be a time when I want to leave my loving family and friends here on planet Earth, even though Heaven in far better.  But my times are in the hands of the Lord.  He has given me some excellent surgeons—for one Dr. David Bartlett @ UPMC, and understanding oncologists and radiologists here at home.  I’m confident I have had the best treatments. 

Overall, the two treatments I have had have reduced some of my symptoms, and my tumor markers have gone down from 188 to 120.  That’s fantastic I think.  Nevertheless, I am a realist, and have set a standard for myself to know “when enough is enough!”

Probably this might not be the response you expected, but it is my own personal experience with a Stage IV cancer.  Below my name I will list a few references which may be helpful in helping you know where you might go for a SECOND opinion for your dad.  Bottom line for me was that while I was diagnosed as “terminal” from the beginning, God has given me 5 extra years.  Today happens to be my 79^th birthday.  And when I do depart this life, I’ll be in Heaven, a place where there will be no more cancer or sickness of any kind.  We’ll never grow old.  That is how I cope with the “present”.  I’ve never allowed the “present” to cloud my “future”.  This may be more than you asked for, but just maybe at the least, your dad may be offered better options when you consult another set of surgeons and oncologists. 

May God bless and lead you to a good medical team that will offer you more hope than the current doctors that have been attending your father.  I pray that would be so.

Sincerely,

Loretta

P.S.  Among the references below, the first one from Mayo will tell you how to seek a Second Opinion. 

The second reference will give you the top hospitals as ranked by USNews&World health report.  There may just be one near you.  And I would hope that your insurance will allow for a 2^nd opinion—most do.  And note the “specialties” for which the hospital is noted.  Different hospitals will be ranked with different numbers depending on the type of treatments they specialize in.  So there are “distinctions” between hospitals in the treatment of cancers.  Just like one surgeon cannot be the “best” in all types of surgery—neither can one hospital excel among all others when treating cancers in general. 

Thirdly, will be a link telling about Gallbladder cancer surgery according to the stage. And then there a couple of videos as well.

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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

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…”

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2.      https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

Best Hospitals for Gastroenterology & GI Surgery

You can find information here about 1,566 hospitals in Gastroenterology & GI Surgery that see many challenging patients; listed hospitals had to treat at least 438 such Medicare inpatients in 2013, 2014 and 2015. The 50 top-scoring hospitals are ranked. The rest are listed alphabetically…”

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3.      https://www.cancer.org/cancer/gallbladder-cancer/treating/treating-by-stage.html

“TREATING GALLBLADDER CANCER

• Surgery for Gallbladder Cancer
• Radiation Therapy for Gallbladder Cancer
• Chemotherapy for Gallbladder Cancer
• Palliative Therapy for Gallbladder Cancer
• Treatment Options Based on the Extent of Gallbladder Cancer

 

Treatment Options Based on the Extent of Gallbladder Cancer

The extent of a gallbladder cancer is an important factor in determining treatment options. Doctors use the TNM system to formally stage the cancer (as described in “How is gallbladder cancer staged?”). But for treatment purposes, doctors generally divide gallbladder cancers into 2 groups:

• Resectable cancers are those that doctors believe can be removed completely by surgery, based on the results of imaging tests and other tests.
• Unresectable cancers have spread too far or are in too difficult a place to be removed entirely by surgery.

In general, some cancers that have not spread far beyond the gallbladder may still be treatable by surgery, unless the cancer has spread into major blood vessels. For instance, if the cancer has only invaded the liver in one area and not too deeply, it may be possible to remove all of the cancer by surgery. On the other hand, if the cancer has spread to both sides of the liver, to the lining of the abdominal cavity, to organs far away from the gallbladder, or if it surrounds a major blood vessel, surgery is unlikely to remove it all.

In terms of stages, stage I and II cancers and some stage III cancers may be resectable. Still, other factors, such as whether a person is healthy enough for surgery, can affect whether it’s a good option.

How the cancer is first found can also affect treatment options. For example, some cancers are found on imaging tests before surgery, while others are discovered only after surgery is done to treat another condition such as gallstones.

If gallbladder cancer is suspected or diagnosed, it’s a good idea to be seen by a surgeon with experience treating this type of cancer. Gallbladder cancer is uncommon, and not all surgeons are skilled at the more extensive operations needed to treat this cancer.

No matter what stage the cancer is, it’s very important that you understand the goal of treatment before it starts – whether it’s to try to cure the cancer or to help relieve symptoms – as well as the likelihood of the benefits and risks. This can help you make an informed decision when looking at your treatment options…”

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4.      https://general.surgery.ucsf.edu/conditions--procedures/gallbladder-cancer.aspx

IntroductionGeneral Information About Gallbladder Cancer

Stages of Gallbladder Cancer

Treatment Option Overview

Treatment Options for Gallbladder Cancer

To Learn More About Gallbladder Cancer

About This PDQ Summary

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5.      https://www.youtube.com/watch?v=Zc_gAoMZ5kQ

A 5-minute video about Gallbladder Cancer

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6.      https://www.youtube.com/watch?v=qaxSvM7Dk_Y&t=106s

Cytoreductive Surgery and HIPEC in the Management of Peritoneal Surface Malignancies

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

My Dr. David Bartlett discussing Cytoreductive Surgery and the debulking and HIPEC procedure.

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KCFlash said:

Gallbladder Diagnosis February 2018

Hello, I am new here and looking for some encouraging stores and a bit of advice.   

February 22, 2018 I had my gallbladder removed due to mild problems/symptoms and 3 gallstones.   Upon removal of my gallbladder post surgery pathology indicated PT2NX gallbladder cancer where the cancer was through the muscle layer, but not the serosa.  However, I did have positive margins in the cystic duct.    After CT Scan and MRI Scan it was determined that I would be a candidate for the liver resection etc.    During that surgery on 3/13 there was a liver lesion that was identified as cancer upon frozen section and the surgery was abandoned.    However upon Final Pathology it was determined NOT to be cancer.    I did go for a 2nd opinion at Mayo Clinic in Rochester MN and have had additional CT Scan/PET scan which is negative for metatisis at this point.   However, this last week I developed a bile duct blockage due to inflamed lymph nodes  which they are attributing to post surgical changes since nothing is showing up on my scan(s) other than the residual turmor from my first surgery.    On Friday 4/17/2018 I did have a stent placed to help with the bile flow as I continue through treatment.   If all goes well and my liver functions return to normal I will start chemo on 5/4/2018 for 4 rounds of cisplatin and gembzr then additional scans and possible surgery.    

I am interested in hearing some positive stories; tips/tricks on how to manage the emotional roller coaster ups and downs; Mangement of symptoms specifically nausea.   

KC~Unfamiliar w/GBC but perhaps some web links R helpful

 Hello “KC”

Since I’ve never had Gallbladder cancer, but only had my gallbladder removed as part of another surgery, I cannot speak “experientially” on the particulars of gallbladder cancer.  However, I am familiar with nausea meds.  Below my name I’ve given you a few references which might be helpful, but one in particular should interest you.  There is an antiemetic (anti-nausea med) called “KYTRIL” (generic name Granisetron) which I have used throughout all my chemotherapy treatments.  It has served me well.

Also a word about mediports--much to my amazement all oncologists are not recommending medi-ports for their patients prior to the start of chemotherapy sessions.  If you have not had a medi-port placed for your upcoming chemo treatments, by all means I would insist on one.  There’s no sense in wearing out one’s veins when a medi-port is much better.  So I have included a link for that as well.  Sorry I can’t be more helpful, but perhaps something I’ve said will be helpful.  This, of all the cancer forums, is one of the “quietest” so you may not hear from many on this link.  So if there are any out here, I hope they will share their experiences with you. 

As for tips, summer is coming on and you should absolutely not be out in the direct sun for extended periods of time.  Skin is especially sensitive during chemo treatments and I’ve seen patients with some very bad burns.

Also keep your mouth moist at all times.  Moreover, I would request “hydration” on a regular basis because it is one of the main causes of “fatigue”.  I’ve yet to meet a chemo patient who isn’t “tired” all the time.  I know I am.

As for tips, I would make myself very familiar with “my cancer” and make a list of questions you need to ask each time you visit the doctor.  I would expect an explanation that I can understand.  Don’t be intimidated by how much the doctor knows, as opposed to how little you know about this cancer.  This should be a “one-on-one” interaction between the two of you.  It is your life and you will be much more confident about your particular cancer when you do some research of your own.  You are blessed that it has not metastasized.   

Absolutely wishing for you the very best results.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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

This is a letter I wrote to “Brian from the North” when he wanted to know things his mother could do that would be helpful during her chemo treatments.

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2.     https://www.mdedge.com/obgynnews/article/112000/gynecologic-cancer/extended-release-granisetron-superior-antiemetic

 “Extended-release granisetron superior antiemetic for cisplatin chemotherapy

Publish date: August 27, 2016 - By Bruce Jancin - Ob.Gyn. News

 AT THE ANNUAL MEETING ON WOMEN’S CANCER

SAN DIEGO – An investigational extended-release formulation of granisetron outperformed ondansetron as a component of triple-drug antiemetic therapy for patients on cisplatin-based highly emetogenic chemotherapy, Dr. Lee Schwartzberg reported at the annual meeting of the Society of Gynecologic Oncology…”

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3.     https://www.cancer.org/cancer/gallbladder-cancer/detection-diagnosis-staging/staging.html

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4.     http://chemocare.com/chemotherapy/drug-info/cisplatin.aspx

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5.     http://chemocare.com/chemotherapy/drug-info/gemzar.aspx

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6.     http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/gc-gemcis

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7.     https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

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 8.     https://www.cancer.gov/publications/dictionaries/cancer-terms/def/gemzar

[My note:  I find this link extremely helpful.  It has an audio symbol that pronounces the name of the drug or condition for you--plus an explanation of how it is used.]

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