This is an archived post from the webpage "healingteddi.com", which is no longer online. Since the posts have been moved off of the original webpage, some of the links may no longer work. You can still navigate through the blog through this webpage, by searching through the blog posts.
I hope these entries can continue to encourage those facing appendix cancer
Original Post: 07 October 2013
Teddi’s Path Forward: Cytoreductive Surgery and Hyperthermic Interperitoneal Chemotherapy
So now that I’ve broken the big news, that Teddi has Appendix Cancer and a condition called Pseudomyxoma Peritonei, I’m sure that many of you have searched the internet for more information about her condition and the treatment options that exist.
We are fortunate that over the past several years, there has been a lot of progress in the treatment of this disease. The modern approach consists of a few stages, undertaken by a specialised team in Sydney at St. George Hospital. This team is their Peritonectomy Unit which is lead by Dr. David Morris, who has performed over 700 surgeries to treat this disease – one of the more experienced surgeons in the world in this area. This is quite a blessing to have this resource so close to us (only a 3 hour drive), with Australia being one of only 13 countries in the world that has specialists in this area.
However that doesn’t take away from the fact that the surgery and treatment Teddi will have to undergo is enough to scare the crap out of you. So grab an extra pair of undies…. here we go.
“These tumours originated from tumour cells which have ‘leaked’ from Teddi’s appendix and implanted on her various organs - this is called ‘seeding’.”
Teddi requires a peritonectomy, which consists of a full clearing out of the peritoneum of all the disease which is present there. The condition, pseudomyxoma peritonei is characterised by the spread of mucinous tumours throughout the abdominal cavity (aka peritoneum). These tumours originated from cancerous cells which have ‘leaked’ from Teddi’s appendix and implanted on her various organs – this is called ‘seeding’.
The problem with this is, that over time, there is a build up of mucinous material in the abdomen. As tumours grow, they rupture and seed more tumours elsewhere, filling the belly up with mucous, hence the disease’s nickname: “jelly belly”. Unlike other most other cancers, this one does not kill you by spreading to your lymph nodes and the rest of your body. Instead it restricts your paristolisis (gut motion which moves food along) to the point of bowel obstruction, which is the killing blow.
“In order to remove the mucinous tumours, this peritonectomy surgery opens Teddi up from the base of the sternum to the top of the pubic bone.”
In order to remove the mucinous tumours, this peritonectomy surgery opens Teddi up from the base of the sternum to the top of the pubic bone. From there, the surgeons start scraping, burning and cutting out all of the disease that they can see. If the tumours are superficial (at just the top of the implanted organ), this is good enough. However, for more mature tumours, the implantation/mutation of the site is too far gone for the organ to be saved, and the entire area must be removed. This was the case with Teddi’s right ovary, in which no ovarian tissue was left (read the pathology report), so it all had to be taken out. It was also the case for the upper half of her left ovary (please consider giving to Teddi’s Fertility Cause).
In Teddi’s case, there is are still several areas of disease that are apparent on her CT scan (download it) and from the C-section surgery. There is mucinous material between the liver and the diaphragm, next to her gallbladder and spleen – so both are at risk being removed, as is a portion of her liver.
There is also tumour material on the right lower quadrant of her Omentum right next to the appendix. This material contains poorly differentiated, low grade adenocarcinoma (cancer). This portion of her Omentum will be removed, as will her appendix.
“Here is where it gets tricky - Teddi has lumps in her Cecum“
Here is where it gets tricky – Teddi has lumps in her Cecum, which is the connection between the small intestine and large intestine, the first portion of the colon just after the appendix. I saw the surgeon find three lumps there during her surgery. This could indicate that Teddi will require a hemicolectomy – meaning that the right half of her colon is removed. This would be mean she would have to have a temporary stoma so the rejoined portions of the intestines heal. And that her recovery time, infection risk are more elevated. We’ll know a bit more after she has a colonoscopy later this month.
And the bonus, the kicker, the real doozie – not all of the tumours show up on the CT scan. Because many of them are very small, or hidden in other fatty tissue layers, we won’t know what Teddi will lose, nor the total extent of the disease Teddi is facing.
“She will then receive a few litres of of high temperature Chemotherapy injected straight into her abdominal cavity (called HIPEC).“
At the end of this 8 – 10 hour surgery, Teddi’s abdomen will be closed up, but she will be connected to several different tubes that are connected to her peritoneal cavity. She will then receive a few litres of of high temperature (Hyperthermic ~100-110F, 40-44C) Chemotherapy injected straight into her abdominal cavity. The purpose of this is to kill any remaining cancer cells, the high temperature chemo is particularly effective at doing this.
In the 5 days following the surgery, Teddi will have daily cold-chemo flushes that last for a few hours, all flushing through these tubes.
She will also have a few tubes under her ribs to drain fluid away from the diaphragm-liver region. She will be on a breathing machine and will come out of the surgery and spend a few days in the Intensive Care Unit
In short she will be part machine for a day or so and I will temporarily be married to a cyborg.
I think we all needed a laugh.
So, phew. This surgery is rather terrifying. I don’t blame Teddi for being very upset and anxious about the whole thing (so send her some LOVE!). It is about as major of a surgery as you can get – so much so that many of the PMP (short for pseudomyxoma peritonea) support websites out there have titled it: MOAS – the Mother of All Surgeries.
Teddi will be in the hospital for a minimum of three weeks, with another week at the Beezina Cancer House (sponsor us for a night!), with the chance for that being extended to six weeks if there are additional challenges to the surgery (e.g. parts of the colon removed, etc). It’s gonna be one helluva a ride.
“Okay, now for the good news…”
Okay, now for the good news. If we do this surgery, Dr. Morris believes Teddi, with her stage, type and extent of disease has a very high chance of being cured. Meaning the disease is gone and never comes back. If it does come back, we still have another chance to get it again (albeit with greatly reduced success rates).
So, for those of you who are terrified (as I was at first!!) – take a collective breath with us. Despite what you may have read online about PMP, its survival rates, etc – this disease is highly variable and depends on each case – we feel Teddi has a great chance to beat this thing if we go through with the surgery, which is going to be in 3-6 months time.
As side note, if you think that is a long waiting period - blame the New South Wales Health Minister.
So, in closing, Teddi has an immense struggle ahead. She has a very major surgery to go through, with months of apprehension to face. With that, she has to spend the waiting time concerned about the spread/extent of her disease (although Dr. Morris says he is confident the spread is not rapid and she will be fine). And then, when she does finally have the surgery, it will take her 6-12 months to be ‘back to normal’.
But let’s not forget, Teddi has a good chance at being disease free after it all!
So if you empathise with Teddi, please send her some LOVE. If you have a medical background, help contribute to the HEAL wiki and take a look at Teddi’s medical data. If feel motivated to do something, head over to the GIVE page, and do whatever feels right to you. I’ll keep you all posted with this blog (have you read the first post?)
Love and Peace to you all. Thank you for your prayers.
Bye for now,