The C Word – Day 13 The Enemy Has A Name

The name is Pseudomyxoma Peritonei (PMP for short).  It is rare, extremely rare.  The treatment of it will be almost purely experimental because there are few case studies available.  Even the literature that the oncologist gave us was printed off the internet from the United Kingdom.  On top of that is the peritoneal carcinomatosis which he showed on the CT scan as sort of a hardening of the lining of the stomach.

On the “plus” side, if you can call it that, is that we can attempt to treat it (there is no cure).  At the very least we can buy some more time, maybe lots more.  That part is an unknown.  The fact that George has not had symptoms and is in relatively good health means that we are going into this able to fight as hard as we can.  (The doctor expected to see a patient that was in extreme pain and with no energy.) George is somewhat relieved because he was preparing himself to be told that there would be no treatment at all - but there can be some hope if everything falls into place.  

**********  This section is copied from a website, my comments follow below the ********

Here is what PMP is:  A very rare type of cancer that usually begins in your appendix as a small growth, called a polyp.  The polyp eventually spreads through the wall of your appendix and then spreads cancerous cells to the lining of the abdominal cavity (the peritoneum).  These cancerous cells produce mucus, which collects in the abdomen as a jelly like fluid called mucin.    The causes for this cancer are unknown but could be caused by a number of factors working together.  PMP does not act like most cancers and does not spread through the bloodstream or the lymphatic systems.  It spreads inside the abdomen.  It develops very slowly and it may be many years before you have any symptom from this type of cancer. 

The treatment could include any or all of the following: The treatment of PMP depends on a number of factors. These include how far the tumor has spread and your general health. Some of the standard cancer treatments, such as radiotherapy, aren't suitable for treating PMP. This is because PMP cells aren't sensitive to radiotherapy and they are often spread over too large an area for this treatment.

You may be offered surgery to treat this kind of cancer. There are two types of surgery:

Cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC).

This may be an option for some people. It‘s an intensive treatment that aims to remove the tumor to try to cure PMP.  Once the surgeon has removed all or most of the tumor, a heated chemotherapy drug is put in the tummy (hyperthermic intraperitoneal chemotherapy) for 90 minutes during the operation. The combination of the chemotherapy drug and heat aims to kill any tumor cells that are left behind. This is a major operation and may take up to 10 hours. Afterwards, you’ll be nursed in a critical care unit for several days and will stay in hospital for about 2 weeks.

Debulking surgery

This is done when it’s not possible to have cytoreductive surgery. It aims to remove as much of the tumor as possible to reduce the symptoms of the cancer. Unfortunately, this surgery will not take away all the tumor cells and the PMP is likely to grow back. Further debulking operations may be needed. However, each operation becomes more difficult to do, with less benefit and more risks of complications each time.

Chemotherapy

Chemotherapy can be used to treat PMP. Some people who can’t have surgery may benefit from chemotherapy. It does not cure the cancer but can be used to slow it down. Research into other treatments for PMP is ongoing and advances are being made. Cancer specialists use clinical trials to assess new treatments. You may be asked to take part in a clinical trial. Your doctor must discuss the treatment with you so that you have a full understanding of the trial and what it means to take part.

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Our testing starts with a full CT scan and lab work. The full scan is needed to see if there are any more pockets of fluid or tumors anywhere else. In two weeks we meet with the oncologist again and hope that he has found a surgeon willing to take the case.  Given that this is rare, the surgeon may never have had the opportunity to perform such a surgery.  The objective would be to remove as much of the bad stuff as possible so that chemotherapy is possible. 

George can start short term disability at any time but I have expressed to him that he should at least try to go to work this coming week.  With the exception of perhaps the CT scan there are no other tests required this week.  Keeping occupied and taking care of loose ends at work will keep his mind on other things. 

Our prayers today are that a GOOD surgeon is found who is willing to take on the case.  After meeting the oncologist and his associates today we are confident that they will do everything they can to bring us through this. 

We, of course, are still digesting all of this information.  Tears will come and go as we fully realize the scope of what this treatment will involve.  While there is still much unknown, we now know the name of the enemy and we are preparing for battle.