When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…
Once he opened me up he realized that it was the rare appendix cancer and had another surgeon perform the procedure.
This surgeon performs the HIPEC procedure, but on his own admission, he does not see many appendix cases and only does a few surgeries a year. He even went as far as to chide me for suggesting that I get an opinion from Dr Sugarbaker (the pioneer of this treatment), saying, “Well, if you want to go to an 80-year-old man”. They also intimated that Dr Sugarbaker was only taking cash-paying customers!!
The head of the surgical oncology department met with me and was very disparaging, giving me the statistics for colon cancer. He even referenced if I needed palliative care in the future, the options they had for me. Just because you get a diagnosis of stage four cancer does not mean these kinds of conversations need to occur. It hindered my recovery and sent me spiralling into depression.
When I researched online and found the support group, I remember feeling kind of overwhelmed and took it even a little bit personally that someone would suggest that my doctor wasn’t “good enough“ or that I didn’t know what I was doing. At the time I thought due to my insurance (being on public assistance/ disability) that I didn’t have any choices but had to continue with the doctor that I had seen. Many individuals on this site encouraged me that that was not the case and that I definitely needed to seek out a specialist. Due to their recommendation, I found one at Froedtert in Milwaukee. Any reputable oncological surgeon will be more than happy to give a second opinion.
Dr Mogal has an outstanding track record and warm bedside manner. I had significant disease and probably have had this for years so I understand when the diagnosis comes and you feel helpless. For those of you who have not already please for your own sake, health, and well-being find an appendix cancer specialist even if it means travelling a distance. I know it’s easy for me to say that because I was blessed to have one 60 miles from my house and a backup in Chicago if I needed it. The recommendations from the people in this group are because they care.
The decisions we make are literally life and death.
In case you missed it...
On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.
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.