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.
– Tina
In case you missed it...
Don’t give up hope!
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.
I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!
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.
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.
Can any one guide post-Pseudomyxoma Peritonei surgery care, treatment, measures for stopping recurring of same. I’m case of recurrence can it be given without opening tummy, future surgery, please guide or give suitable site doctor online advice, where we can get for value addition. Thus is for my wife Susmita Roy, Delhi, India. <918860086150> (number withheld by admin) ‘recently undergone cytoreductive surgery and Hipec in Mumbai under Dr Sanket Mehta.
I’m sorry about your wife. I am a 12 year survivor and had the surgery and HIPEC in the US. I traveled away from home to have the surgery but was followed up at home by a regular oncologist who ordered my scans at first every three months, then six months and now I’m on a yearly scan. That is what my specialist surgeon recommended. The oncologist would also order blood draws for cancer markers. Fortunately mine has not reoccurred. You never stop worrying that it will but you can live a good life following all of this. If it reoccurs I see that many have the surgery again and some wait to see how much and fast it spreads. Hopefully someone else can speak up and let you know about that. Wish your wife full recovery and will keep her in my thoughts. Linda
I recovered from PCP after the surgery. They removed my ovaries, uterus, and appendix. The surgery was in August of 2013, I was 69 years of age at the time of the surgery. They also removed copious amounts of the jelly substance. The doctors recommended chemo, but they had tested the jelly that was removed and did not find proof of cancer. I refused the chemo, although they thought of PCP as a type of cancer. I am a retired Licensed Practical Nurse.
I have not gone back after the 2 or 3 appointments since the surgery and they have not attempted to change my mind regarding chemo. I have not had any more of the symptoms since the surgery – that was nearly 5 years ago.and my yearly physicals have all been negative…
Keep positive. I am nearly thirteen years post op. and live a normal life after seeing a wonderful surgeon and I know I can also get in touch with him if I need to.
Did they identify and Genetic Mutations on your pathology?
Can you recommend a qualified doctor as my husband’s PSP is quite advanced and he needs surgery soon. I am in California but I will travel anywhere for the best doctor.
Hi, Stephanie
Pseudomyxoma Survivor doesn’t endorse any one surgeon. We suggest that you have a look at our page for California specialists.
Angela