When I was first diagnosed with PMP in 2002 there were basically no treatment options presented to me by my local oncologic surgeon besides just more surgery. I was patted on the head and told to go home until it grew back. They estimated that I would have at least a few years (but probably no more that 5) and a few more surgeries before my imminent demise. They even took my case to tumor board and all the other doctors concurred with this. If I hadn’t had the medical background that I did; I probably would have taken that as my only option. My blog today is about giving you permission to be your own best advocate. This is my advice.
1. Seek at least one second opinion
PMP is rare and as such there are a limited number of oncologic surgeons that actually regularly treat PMP. You do not want to go to the surgeons who are ‘learning” on you. You definitely want to go to the doctors that regularly operate on PMP patients. We are hard patients to operate on and you want an expert. If you are like me, that means traveling to where the doctor is. I am alive today because I did not follow my first surgeon’s above recommendations. This is a pretty big deal to me, especially, since at the time of diagnoses I had two small children and my youngest was too young to have retained any memory of me. That same son will be a senior in high school next year.
Not only did I seek a second opinion in 2002, I sought two second opinions. Each with people who regularly treated PMP. I also had my pathology results evaluated by 3 separate labs. The surprising thing about this is that the pathology reports provided for each did not concur. Since then PMP has been more uniformly defined which is a good thing for knowing where you stand treatment wise.
2. Educate yourself on your disease.
This is the age of the internet. With a little reading, you can understand enough to talk intelligently with the doctors. Wikipedia has done a great job, in my opinion, with defining PMP. I just read through it today and feel they have outlined it well. You will feel more in control of your own health if you know what the doctors are talking about. Familiarize yourself with your blood tumor markers and what they mean (like CEA and CA 19-9). Look up the different radiologic options for following your disease (CT vs MRI vs PET). Ask your surgeon if they do genomic testing of the tumor sample removed and if they will store your sample in a way that future immunotherapies, biologics, or targeted treatment therapies can use your tumor genomic profile to specialize your future treatment options.
3. Follow or join a PMP support network.
When I was first diagnosed my inclination was to avoid doing this because I thought that joining a support network would be a downer. I couldn’t have been more wrong. Since PMP is rare, these support networks are where you can find out about oncologic surgeons that specialize in PMP, new research for PMP, and you might just find out that you are not alone in facing PMP. PMP Pals offers a host of free resources, and the PMP Appendix Cancer Support Group on Facebook provides a forum with over 2,000 members that post questions and answers daily.
4. Advocate for the treatment you want.
My first local surgeon did not advocate for HIPEC. After receiving my first debulking surgery with my local oncologic surgeon; I immediately researched and made an appointment with two MD’s who specialized in treating PMP. Both recommended HIPEC but not with the same drug combos, and at that time only one of them did EPIC. When I had made my decision and went into surgery 4 months later, my original tumor had completely grown back and my estimated survival time without surgery was charted at 3 months. If I had waited and done what my original surgeon recommended I would have been dead within a year of my first surgery.
Choosing which option is the right option for yourself is hard. When I was choosing who to go to for treatment after my first local surgery in 2002, I asked the surgeon’s about their 5 and 10 year survival rates for treating similar patient’s with PMP. I also asked about their mortality rates, post operative complication stats, and issues with quality of life after surgery. Ultimately, it is up to you to help decide the level of risk vs benefit you want to take on. I went with the most aggressive action possible and looking back it was definitely the right choice for me.
5. When you decide and go in for a MOAS (mother of all surgeries); Bring help.
– You will need someone in the hospital with you at least during the day. If it’s going to be a really tough surgery I would recommend at least two people to do day/night rotations.
– While in the hospital make a list daily of the things you want to address with the rounding doctors. – Ask to speak to the dietitian about your nutritional status and options.
– Talk to your doctor about managing your pain, nausea, and sleep while in the hospital.
– You have the right to ask people to wash their hands before touching you. I personally prefer this over just having my medical provider using the hand gel sanitizer only.
– While in the hospital there is usually a team of resident doctors that assist the primary inpatient doctor with your treatment (I jokingly call them docklings because they can be seen following your primary inpatient doctor and they remind me of baby ducklings following their parent). The docklings will then often round on you more frequently than the primary inpatient doctor and will report your progress back to your inpatient doctor. You have the right to request to see your inpatient doctor directly if you have concerns. You also have the right to speak to your oncologic surgeon while in the hospital with concerns.
-Recovering from a MOAS surgery is like running a marathon and just as exhausting so be prepared.
Good luck. You can do it!!!