So, this is my Pseudomyxoma story and I didn’t think I’d be running after cytoreductive surgery and HIPEC…
In 2014 I went to my GP, sick of having horrendous periods. As I had ovarian cysts and had fertility treatment, I was sent for an ultrasound scan… I was told I had a weird looking ovary??? I then had a stroke… oh yes… so rather than risk an anaesthetic, I had a CT scan and then a MRI. Those still didn’t give the doctors any idea what was going on!
So they risked a biopsy. I woke up without an ovary, a fallopian tube or my appendix. The next day was the first time I heard the words… pseudomyxoma peritonei (PMP) and the fact that I would need to go to Basingstoke hospital, as one of two hospitals in England that can carry out specialist surgery for PMP. That all came true after the biopsy confirmed the PMP diagnosis. I am so grateful that the gynaecologist had seen it before and recognised the jelly.
In May 2015, I had my cytoreductive surgery (CRS) and heated abdominal chemotherapy (HIPEC), eight hours in surgery and 16 days later I was on my way home. I felt blessed that I was low grade and lucky to be on the mend.
Now I am three years on and show no evidence of disease (NED) and I’m thankful for every day. I felt after that I had been given another chance at life and that I had to look after my body from now on.
I tried to start running, but unfortunately developed a hernia which got fixed 18 months ago. So, I started again and in just over 6 months, I’ve gone from 0km to 10km runs. So to thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x
Please sponsor me via my Facebook fundraiser as I’d love to get to £500, I will be very grateful and I’m sure Pseudomyxoma Survivor will be too.
Go to https://www.facebook.com/donate/304173330214736/ to donate. Thank you!
– Nicky xx
Pseudomyxoma peritonei survivor
In case you missed it...
The disease was actually growing out of my belly button!
I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis with pseudomyxoma peritonei or PMP.
My belly size surprised the doctor more than my hernia
He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.
This illness sucks but I’m embracing the moment
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
I am now 14 years from having my spleen, gallbladder, ovaries, appendix and various pieces of bowel removed at Basingstoke. What a wonderful team there, I have had confidence in them since having it done and know they are always there. I have been able to see another granddaughter born and my first granddaughter born married early August. Thank you all so much.
I’m in California. My husband was just diagnosed with pseudomyxoma Peritonei. I am searching for someone who knows how to perform the surgery, someone who has experience as his diagnosis is pretty severe. Please let me know where I can find someone who can do the surgery as soon as possible
Hi, Stephanie
Pseudomyxoma Survivor doesn’t endorse any one surgeon. We suggest that you have a look at our page for California specialists.
Angela
Hi Stephanie,
Where in CA are you located? I’m in Los Angeles and have been recently diagnosed with LAMN and PMP. I’m scheduled to have surgery (CRS and HIPEC) next month. I was referred to Dr. Jonathan King at UCLA.
Especially if his diagnosis is severe. . .please consider going to the best: Dr. Paul Sugarbaker at MedStarWashington Hospital Center. He pioneered cytoreductive surgery with HIPEC (also known as the Sugarbaker procedure), which is now the gold standard for treatment. He’s also my surgeon, so I can recommend him highly. It’s worth traveling for medical care as crucial as this. The experience of the surgeon and his documented good outcomes are paramount. (Patients from around the world travel to Dr. Sugarbaker.)
Dr Andrew Lowy at UCSD is world-class. He’s done over 600 of these procedures, me being one of them. I had my surgery at the end of February 2020 and am back to work and out cycling and hiking. I just cycled 50 miles the other day and I attribute this to the expertise of Dr Lowy.
I searched across the country for a surgeon and visited Dr Sugarbaker. My opinion is that Dr Lowy has innovated on what Dr Sugarbaker invented. UCSD has an entire specialty practice for PMP and there’s nothing close to this at Stanford, UCSF, or UCLA.
A great doctor in the Midwest is Dr. Jeffrey Sussman in Cincinnati. I had stage 4 colon cancer and he saved my life.