Cancer talk- patient2patient
I was diagnosed with pseudomyxoma peritonei in 2002 after surgery with the closest oncologic surgeon to where I lived (six hours away). At the time of diagnoses I was 32 years old, had two small children ages 3 and 7, and was the ‘working mom’ while, by choice, my husband was home with the kids. Ironically, I worked in the health care field and until I was diagnosed with PMP, I had never before heard of it. My symptoms were vague, mild abdominal bloating and some aching into my lower back. I had actually sought 3 different doctor opinions on these symptoms and then had a small umbilical hernia repair, ALL WITHOUT ANYONE FINDING ANYTHING WRONG. Three weeks after the hernia repair, I developed ascites. Within 24 hours I went from thinking I would live a very long life to thinking that my kids wouldn’t even remember me. As all of you know, there are no words to describe that moment. Before PMP I lived a very healthy life. I worked out 3 times a week, ate healthy, had never smoked, and generally been the poster child of health.
My first surgeon told me that there were no treatment options for me outside of surgery and that I should be grateful that it wasn’t ovarian cancer. I wasn’t feeling especially grateful. She explained that when my symptoms returned that I could follow up for more surgery and was discharged from the hospital and sent home to slowly die. I promptly got on the web, thank god for the internet, and looked at my other treatment options. I live on the west coast and found that the most experienced doctors at the time doing surgery for PMP lived on the east coast. So, off I flew with my husband in tow to visit both NIH and also Dr. Paul Sugarbaker (God bless him!!!). I ultimately chose Dr. Sugarbaker to proceed forward and four months after my first surgery I was back on the operating table. Dr. Sugarbaker estimated that without surgery my estimated survival time was 3 months. In other words, everything had grown back. I went through the MOAS with Dr. Sugarbaker; Gastrectomy, colectomy, peritonectomy, debulking, some small bowel removal, cholecystectomy, ileostomy with temporary diverting jejunostomy, omentectomy, etc, etc. Keep in mind that I had already had a total hysterectomy, debulking, and splenectomy with my first surgeon 4 months earlier. Dr. Sugarbaker did the HIPEC and EPIC. As I’m sure all of you know, it’s the ultimate marathon of surgery recovery. I won’t even get into all the post operative complications and issues but I had a lot. Eventually I went home after like 6 weeks in the hospital. Not a fun plane trip home (actually 2 plane trips to get home). I went back for surgery 6 months later as per the Dr. Sugarbaker norm and again went through the HIPEC and EPIC. Then was sent home to do adjunct IV chemo with my local oncologist. I had to do home TPN for 9 months as I could not eat enough to sustain my weight. Very slowly, I recovered. I stayed in remission for 8 wonderful years. In 2010 I had some regrowth which required another debulking surgery with Dr. Sugarbaker. This time Dr. Sugarbaker didn’t do HIPEC and EPIC but sent me home to do focused beam radiation instead. Then I was good until 2014 in which yet again, I had surgery for regrowth. This time with Dr. Bartlett in Pittsburgh. Did the HIPEC but not EPIC and no follow up adjunct chemo or radiation.
So that’s basically the abbreviated version. I am very happy I chose the options I did and very grateful to Dr. Sugarbaker (mostly all due to you Dr. Sugarbaker!!!) and Dr. Bartlett for basically saving my life. My youngest son, who was 3 at the time I was diagnosed, is now 17 and will definitely remember me. I spent a lot of time trying to not make cancer all I ever thought about because I just wanted to go back to living a normal life. However, now, with some reflection…I want to start giving back somehow. I have posted a blog that I just started at https://cancertalk-patient2patient.blogspot.com with the intent of giving helpful hints to others newly diagnosed with PMP. I am not a techie so I hope for anyone interested that it works.
I want to express my sincere thanks to Gabriella Graham, Gigi, for all she did for me during my 2002 time of Moas. That teddy bear warmed my heart and she sent a book as well promoting patient advocacy. I was so touched and thankful toward her that my husband and myself flew out to help her in the hospital for 4 days after one of her surgeries. She was an inspiration and a beacon of hope to me during that time and I will forever be grateful to her. I fell out of touch with her for several years as I got busy working and being a mom and was very sad to hear of her passing. Her efforts inspired me to put out a blog on helpful hints that I found worked for me when dealing with the overwhelming issues of surgery and treatment. I want to also thank Arthur for his prompt help and information when I reached out again recently for any new research options out there.
David A. – It May Not Be As Bad As You Think
Aging men often grow what is commonly referred to in Australia as a “Beer Belly.” Whilst not a drinker I too managed to acquire such a thing which, I believe, began to appear when I was in my early fifties. In my mid sixties, (I am now 71) finding it increasingly difficult to pass through a narrow gap between two buildings to inspect the storm water drain, I decided to begin exercising in earnest and commence a diet. Each morning around five I would walk the streets of my suburb in Northern New South Wales for an hour or so. With this exercise and better food choices I gradually began to lose weight. This continued until I started to look unwell. Of particular concern was that, despite my weight loss, my “belly” had become larger than when I began. This situation should have alerted me to the fact that I had a problem but for reasons I can’t explain it didn’t.
Towards the end of 2010, in an effort to get some relief from persistent reflux, I borrowed one of my then wife’s prescription heartburn/reflux tablets. When it worked, and not wanting to run her short, I visited my GP to obtain a prescription for myself. An ‘off the cuff’ remark by me as he prepared the prescription that I thought my growing belly may be the cause of my discomfort saw me on the examination table and shortly thereafter at the local radiology centre for an ultrasound and some blood tests. The ultrasound was inconclusive so it was decided I should have a needle biopsy and CT scan. Several days later I received a call from the surgery and was told that my blood tests were okay but that the doctor wanted to have a chat with me. I made an appointment and a day or so later was in his surgery.
Over a period of years I had become quite familiar with my chosen GP, a man close to my age who’s specialty was Diabetes, so it was immediately evident by his body language and attitude that this was not just a ‘normal’ visit. “I have the results of your CT scan” he said, still reluctant to look directly at me, “and you apparently have a condition known as Pseudomyxoma Peritonei” “So it’s not Cancer!” my then wife who had accompanied me said somewhat relieved. “I am afraid it is” the doctor replied turning to me and handing me several sheets of typewritten paper. “I have to admit that I have never heard of this cancer and had to look it up online.” I took the proffered pages and began to read. Realizing that it would take some time to take it all in I said “and the prognosis is?” “Maybe twelve months I am afraid and there is no cure!”
As fate would have it my GP attended a gathering to celebrate the opening of the new radiology centre to which I had been referred for my scans and at some point in time found himself in conversation with the practice head and a local Colorectal surgeon. Given the rarity of my condition it soon became a topic for discussion at which time the surgeon revealed that he had studied under Professor David Morris and recommended that I be referred to him. Back at the ranch I was in the process of considering my options when the phone rang and I was asked to visit the surgery once more. My GP explained what had transpired and offered me a referral to visit the Professor at St George Hospital in Sydney.
Just before Christmas 2010 I attended the hospital to discuss my case with the professor and his team including the resident oncologist and chief of surgery. Whilst waiting for my appointment with the Oncologist in a crowded room teaming with other cancer patients we were set upon by two uniformed nurses who asked if I was in fact who I am “We saw you in the hallway and thought you must be ours” one nurse said. “You are probably the worst case we have seen!” the other added observing my pregnant looking abdomen. “I would say you have about three months!” she added matter-of-factly.
At this point it needs to be said that Australia has an amazing health care system known as Medicare which provides those without private health care insurance free hospital treatment in public hospitals and subsidized medical visits. Medicare dependent patients must pay themselves if they are treated in Private hospitals. The public hospital system is overburdened with surgical patients and therefore operates on a needs basis. I am Medicare dependent and have no private hospital cover. With this in mind you will understand that following my short, inconclusive appointment with the Professor, who works 24 hours a day seven days a week and sleeps by taking cat naps in theatre, I went home to wait. I was given no indication as to when or if I may expect surgery. The eight hour road journey back home was agonizing made worse by the memory of those few words “you have three months!”
In early March 2011 my body began to shut down or at least that is how it felt. With nobody else to talk to I phoned the hospital in Sydney and spoke once more to a nurse. I explained my symptoms and sought some indication as to what, if anything, I could do. She was sympathetic but noncommittal and eventually had to hang up to take another call. And that I believe is when fate stepped in once more. The other call she had to take was from the professor on an unrelated issue but the nurse mentioned my conversation and as a result phoned me back. Two days later I was admitted to the hospital via the emergency department to be assessed by the team. A week later I was on the operating table oblivious to the fact that my then wife had been told it was exploratory surgery and that they may close me up again and send me home.
I was discharged from the hospital sixteen days later having undergone some fifteen hours of surgery with several days in ICU and HDU where I received HIPEC andEPIC. During the surgery I received many full blood transfusions. My discharge notes state the following:- Finding. High volume yellow jelly and large omental cake. Procedure: extraperitoneal disection; diaphragm stripped; Liver stripped; Cholecystectomy; Splenectomy; Hilus/IVC dissn; Omentum and stomach stripped; transverse colon pelvis en-bloc radical resection, retained bladder and ureter. 3 meters small bowell retained. HIPEC 90 minutes 41.5 degrees Mitomycin C. On leaving the hospital I was told that my Ileostomy bag/stoma would be removed/closed in three months but given my dependency on Medicare and the backlog I soon learned that this would not be the case and may take many years. Given complications with the stoma I even considered the option of paying for a private hospital bed. This was abandoned because nobody would give me an indication of the possible cost Never-the-less, I was determined to find a way to have it closed and eventually organised a referral to a local colorectal surgeon who agreed, after much persuasion to carry out the surgery within three months.
I have just had my last check up as I am now five years into recovery. To date there have been no indications of a recurrence of the disease and I live as close to a normal life as possible (with my wonderful new wife of four years), notwithstanding my dependence on medication to control my waste. A good friend who, at the age of eighteen, underwent similar surgery for a ruptured appendix, told me that I would need to know the location of every public toilet in the world. I am working on that.
And so to the heading “it may not be as bad as you think” Whilst laying on my back in the hospital bed late one night, tubes poking out from all parts of my body, I felt someone tug at my toes. It was a young surgeon on the professors team. Having established that I was indeed awake he said these few words “It was low grade”. Up ’till then it had not occurred to me that PMP came in grades as do other cancers. It took me a while to appreciate the ramifications of this revelation. It was indeed “Not as bad as I thought”.
In closing I would like to thank all those who devoted their skills to my care. I can never repay the professor and his team or the people who gave blood so that I may live.
Steadily over a few years in the early 2000’s, I’d put on a few extra pounds around my stomach area but thought it was normal as I had just entered my fifties. That was until I had a bout of feeling sick and bloated which led me to seek my general practitioner’s advice. After a second opinion from a practice colleague I was quickly referred to the local hospital’s fast track clinic where upon I had a preliminary diagnosis of Pseudomyxoma Peritonei and an appointment immediately made to see the specialists at Basingstoke some 240 miles away.
Read through my chronology, and you’ll see I’ve navigated multiple surgeries and have learned to live well with a modified digestive tract and various ostomies:
- Dec/2001 Confirmation from Dr. Brendan Moran that I did indeed have an advanced form of the disease.
- Jan – Mar/2002 Gym workouts regularly to enable me to withstand the proposed lengthy surgery.
- Apr/2002 Surgery carried out at Basingstoke hospital lasting more than 10 hours which resulted in debulking and the removal of 4 stone of jelly and tumour. It was nearly not carried out since it was one of the worst cases they had ever seen of bulk built up due to ‘jelly belly’ and could not be treated by insertion of drugs. This resulted in about 5% of residue left behind, some of which surrounded my Liver. My wife Lynda was told by Dr. Moran later that same evening that I had as little as two months left to live.
- Nov/2003 Further surgery to debulk and resite my stoma away from the waistband area, something that was causing all sorts of problems.
- 2005 Debulking and repair of stoma
- Nov/2008 Surgery again to debulk and to resite the stoma from my left to right side following more problems with the skin and tissue on the surrounding area.
- Sept/2012 Further repairs to hernias having developed on the both the stoma side and the previous stoma site and debulking yet again.
- Between these dates I also underwent both ankle joint replacements at Nottingham City hospital during 2010 and 2012.
Throughout these years I’ve had some struggles and also learned how to overcome them or simply live with them:
(1) Ileostomy pouch leakages have been problematic, but cured usually by a change of supplies and/or suppliers.
(2) Hernias develop despite being careful what I do. It’s as though they remain impossible to avoid and/or predict, and seemingly impossible to cure properly by surgical methods.
(3) Blockages have occurred, due in part by some foods as well as internal polyps/scarring. I’ve learned dietary-wise, stick to foods unlikely to cause blockages in the first place, and eat less than before surgery. Find and use a proper diet sheet compatible with the disease, some foods will no doubt have to be omitted from a diet regardless. I maintain that real ales help in this respect, Lynda thinks otherwise though.
Since Nov/2002 Lynda and I have visited relations in Australia three times, each time spending three months there
using extra supplies of pouches taken in hand luggage. Insurance problems have recently curtailed our trips there but the imminent delivery of a new compact motorhome complete with generous toilet facilities should prove that our OZ jaunts might not be missed as much as we first thought.
In conclusion, people have frequently said that my ‘bloody minded’ Yorkshire attitude to life is what’s kept me going throughout the past 14 years, that may be so but it’s most probably the acceptance that you should simply ‘get on with things’ and sod the future – whatever that is though to be!.
Rod H. – North Lincolnshire
My diagnosis came as a complete surprise even though once discovered, my condition had progressed to a remarkably extensive degree. Never felt ill, never felt run down, never felt any pain, and never felt off kilter from the usual everyday self. Being an outdoor and hiking enthusiast I did, however, feel a need to lose some weight, especially from what I consider to be your basic aging paunch. Thinking back, another (missed) clue was that a couple of friends had asked me how I was feeling. My reply was that I was “perfectly fine.” The thought was then dropped. Apparently, my friends had noticed something off in my skin tone. I personally had not recognized this.
How I came to discover my situation was almost by accident. While traveling in Turkey, I developed a small and annoying groin hernia. Per the local doctor I was good to continue my trip “as is.” So the plan was to get the hernia fixed once I got back home. Several weeks later and safely in San Francisco, I had a “routine” hernia operation. All went well. Nothing unusual was noticed. A week or so later, I began to notice a pain down my left thigh. I sought the advice of a back-spine specialist. Physical therapy was recommended, and the PT guy had difficulty determining what was causing the pain. I offered that perhaps it was related to my stomach paunch and the weight I wanted to lose. At that, he felt my abdomen and rather causally suggested that I get it checked out as it seemed “too firm.” I nearly dismissed his subtle remark, but eventually decided to see a gastroenterologist. His first thought was this might be ascites. Subsequently, a following blood test showed a very high CEA count. Apparently, 60 (20 times the norm) is not necessarily a medical given for cancer, so a biopsy was recommended. The biopsy doctor had difficulty extracting a sample from my abdomen, so a minor operation was recommended and performed. A large amount of mucin was found that tested positive for cancer. My surgeon removed some 10+ pints of “gunk.” Given a following CT scan, my oncologist confirmed my diagnosis as Pseudomyxoma Peritonei (PMP) and recommended that I work directly with a specialist. Given that I lived on the West Coast, I was referred to Dr. Lowy at the Moores Cancer Center at the University of California San Diego. I was eventually provided an interview with Dr. Lowy to determine if Cytoreductive (CRS) surgery with HIPEC was right for me. Given his analysis and our discussion, I was accepted for an operation. Hooray!
We decided to give my body a few more months to heal because of the recent biopsy operation. So, I simply returned to a normal life with the usual activities including a nice vacation in Mexico. Throughout the discovery process, I frequently searched the internet for information. Mostly, I just found historical studies and/or lots of medical terminology. Applicable suitable information was difficult to find, and equally difficult to understand in order to digest how it might apply to me, unlike the PMP website. Fortunately, and much to my relief, Dr. Lowy’s assistants provided the link to the information friendly PMP Pals website. Twice Hooray!
On February 27, 2014, a twelve+ hour CRS- HIPEC operation was performed and was considered a success. Unfortunately, I exceeded the anticipated two week hospital stay by an additional couple of weeks because my chest/abdomen was slow to drain. After a month though, I was finally ready and by personal choice, rented a beach-side apartment. I spent another 3-4 weeks in San Diego rebuilding my strength before returning home. My recovery consisted of mostly walking, proper eating, and minor in-home physical therapy. The outstanding weather and the beautiful coastal trails further contributed to my returning health. Ultimately, it was my brother and girlfriend with their saintly patience, caring, and support that made my month-long hospital stay and four week recovery so much easier and happier.
Over the next six months, walking the San Francisco waterfront and eventually the seven hills really got me back up to speed. Recently, I’ve been hiking and traveling with my girlfriend – Appalachian Trail in Vermont & Smoky Mountains (7 months after CRS), skiing Colorado (11 months after), visiting Washington DC for the Cherry Blossom Festival (13 months after) and in June (15 months after) a hiking vacation to the South West and Rocky Mountains. Last and definitely not the least to wrap up the year is my upcoming trip to Malaysia-Japan (Kuching to Kyoto). Thrice Hooray!
Going forward, I take a blood test & CT scan every 6 months and have yet to determine my decision on fixing a recent abdominal/ventral hernia. It’s not painful nor worrisome, just something I have the option to fix or not.
Overall, slightly more than a year after my operation, at 69 years young and happy, I am very fit, active, healthy, and definitely wishing everyone else the good fortunate and speedy recovery that I have had.
Approaching the Christmas season of 2004 I was at the top of the world with a new job at a pharmaceutical company, attending a top-tier business school, and my wife was pregnant with our first child. On Christmas Eve I learned I was also a cancer patient with advanced PMP.
I was lucky my local surgeon had seen one case of PMP before in his career and mentioned HIPEC as a treatment option. I was also blessed my father found PMP Pals on the internet. I traveled to some of the best health care facilities across the US and, like many PMP patients, was told I had a year to live.
I then visited the HIPEC specialists, chose Dr. Sardi as my surgeon and began my year-long treatment that included chemotherapy, cytoreductive surgery and HIPEC. Ten years later I remain free of disease. My body is changed from the surgery, and some days are difficult, but I’m grateful for the days I’m given.
During my recovery I had the pleasure to become friends with Gabriella Graham, the founder of PMP Pals, as I lived nearby. I was a caregiver and a confidant but most importantly a friend. I’m grateful my family got to know Gabriella who was always a lady, no matter how difficult her circumstances.
Gabriella’s journey was different than mine: She was never free of disease and knew she never would be. But Gabriella made a conscious decision to focus on her blessings and be grateful for her portion, rather than focusing on her plight. Gabriella dedicated her life to helping PMP patients with a message of hope, tirelessly supporting them to the very end.
The point of this story is, no matter what your circumstances are, you need to know there’s hope. Maybe you’re afraid because you’re watching and waiting; please understand that although this is difficult emotionally, it may be the best thing to do. Perhaps you’re depressed because you’ve had a recurrence; don’t be, because we know patients who’ve had many HIPEC surgeries before finally becoming free of disease. Maybe you’re disheartened because you can’t find a surgeon to help; be encouraged, because we know patients who have been turned down by specialists but accepted by others.
The truth is, even if you’ll never be free of disease, there is reason to be hopeful. Regardless of your circumstances or the challenges of your disease, you can do great things in this world, just like Gabriella and other PMP Pals. I’m grateful to have the opportunity to lead an organization dedicated to giving you help and support while you navigate life with PMP.
If you want encouragement and support, visit the PMP Pals website at pmppals.net. It would be our pleasure to put you in touch with someone in similar circumstances. PMP Pals has HOPE for YOU.
I am 73 years old. I have pmp. I have had an ileo-colectomy, two HIPEC procedures and a full course of FOLFOX chemotherapy.
I am also a retired surgeon. I practiced pediatric surgery for 37 years. Despite multiple oral and written exams to retain my board certification in both general and pediatric surgery, I never encountered a question concerning pmp. In my years of practice, I had only one patient with PMP.
Despite my medical background, when I was first diagnosed with adenocarcinoma of the appendix I did not know where to turn. Luckily, I found the PMP Pals web site. Without the web site I would have been lost. Using pmppals.net I found help in locating a physician and learning how to care for myself after HIPEC surgery. The site was invaluable.