Story of a Pseudomyxoma Peritonei Survivor, Chaya Gudadhe, Age -54

Diagnosis-

It all started from Jan 2013, probably way earlier than that but I realised then that I am not feeling well in general. I was feeling very tired, loss of appetite, feeling nauseate, didn’t feel like doing anything but sleeping all the time. I, being a very healthy woman in my life, it was very confusing for me. I was thinking am I really sick or I am getting old?  I was 50yrs old and was thinking probably I am getting old and hence I am not feeling healthy like before. But soon I noticed that my stomach is growing unusually and giving stiff feeling inside which was not normal.  I finally decided to see the doctor.

I went to my General Physician in our town. She checked my Blood Pressure which seems to be high because of the disease so she prescribed me a medicine for controlling my high Blood Pressure. And when I asked her about my big stomach, she said it is probably I had gases and I shouldn’t be worry much. I started taking the Blood Pressure medicine for a month but my sickness was not getting any better. I revisited my physician and this time my stomach was noticeably big so doctor suggested me to do abdomen and pelvis sonography. The result of sonography could not conclude anything as my stomach was full of fluid then. The radiologists referred me to the Gastroenterologist. Radiologist also was ready to remove the fluid advising me getting admitted in hospital for couple of days. This was the time I got very panic as I was really not ready to accept that I can have any serious problem with my health. Every visit to the doctor will bring shocking news for me. Finally I contacted my brother in Mumbai and my son who was also away from town for education. My brother was very surprised to hear all about my health and suggested to come down to Mumbai for further health check.  It was just another two days to reach Mumbai but till then things turned worst, I suddenly got into unbearable stomach pain and had to be hospitalised in Mumbai immediately. After going through the health check and number of tests such as sonography, CT-Scan, PET CT-Scan and finally some blood tests CA 125, CA 19.5 resulted to a big shock of my life knowing that I have cancer with rare disease named Pseudomyxoma Peritonei. It took good 11 days for doctors to diagnose and longer than that for me and my entire family to believe that I got this disease.

Treatment-

After the diagnosis, we were referred to Oncologist who concluded that there is no treatment for this disease at this stage in a very blunt way. When my brother and son requested him to do something and very reluctantly he suggested me to undergo high dose of chemo and hope for the best. So we started with chemotherapy which will put me 3 days in hospital for every 15 days which last about 3 months (6 cycles). It was very tough to tolerate with high doses of medicines and was getting difficult to be mobile with my heavier stomach. Doctor has advised to remove the fluid from my stomach regularly as it was causing me uneasiness. My life and my family got completely shattered because of this disease. It was devastating; I lost my hair partially, reduced weight and looked way older than my age. But I tolerated all this for my family; they were the courage of my life.

After 6 cycles there was again PET CT-Scan was done which showed that the disease reduced by 30%. Now we started looking for surgery option which wasn’t open at the beginning. One of the Oncology surgeons accepted to look at the surgery option for me and did a Laparoscopy to see the extent of disease spread in my body. Laparoscopy result was not in my favour as doctor said the disease has been spread all over the stomach and it is dangerous to operate me in this situation. Also he continued saying that it may not benefit me much because it is impossible to remove entire tumour from my stomach and above all it is a life risk. He also suggested to my family that I have no much time to live, may be 6-8 months in total (in Sept’2013), so I should spend some good time with my close relatives.  We were back to square one thinking now what?????

But not losing hopes we went back to Oncologists. He could see little progress of my health after the 6 cycles of Chemo so suggested another 6 cycles of Chemo if it was ok with me in terms of toleration. With no other option in hands that time I agreed to undergo another cycle of Chemo which did not improve my health but affected my look and I lost my hair completely this time, I got very disappointed and depressed. That time I lost all hopes and thought this is end of my life.

But my son didn’t stop searching options to get me out of this rare disease. There he found another surgeon who is based in Bangalore named Dr Aditi Bhatt. He explained her about my health condition and sent her all test reports. Dr Aditi advised us to come down to Bangalore to see patient personally. As Dr Aditi was very positive about the surgery and recovery on the contrary I was internally lost all hopes of me getting any better. I don’t forget the day when I met Dr Aditi and she told me she can do Cytoreduction and will try for HIPEC.  She was very confident and positive about my surgery and recovery thereafter. We all were happy to hear that and once again a new hope developed within me. But it was not looking easy, it required money, mental support and undergoing once again for few pre-operation tests, I did it all.

On 30th Jan 2014, Dr Aditi did the surgery which took good 10 hours for her. At this time she could remove 80% tumour from my body (6-7 Kg in mass) removing Gall bladder, Ovaries, Uterus which were terribly affected by the disease. My health did not permit her for HIPEC although overall it was very successful surgery by Dr Aditi and I survived. Under Dr Aditi’s observation I recovered with my wounds and I was discharged in 20 days from the hospital. There were no much restrictions on my diet and movability and there were no any complication occurred post-surgery which was one good sign towards my new life.

Life after Treatment-

Knowing that I had a very advanced case of appendix cancer, I had to undergo very aggressive possible treatment for this disease. I set out to do all to get better. Now, I am living a healthy life, with no much medical issues, no doctor visits, and no recurrence of the disease so far. I lived disease free for almost a year and could regain my confidence of healthy life. Once again I started living very happily without any deadly symptoms and also eating well. Dr Aditi gave me a second life. If I say I am alive just because of Dr Aditi Bhatt’s intelligence and efforts, I am not exaggerating.

2nd Cytoreduction Surgery –

As I said earlier that in the first surgery there was only 80% of tumour got removed from my body so as advised by Dr Aditi I agreed to undergo another Cytoreduction surgery which was done on 26nd Nov 2014 and it took good 8 hours this time. Dr Aditi could remove another massive portion of tumour with some unwanted part of intestine etc. I was out of hospital in 10 days with no further complications. In fact I recovered faster than earlier. Once again Dr Aditi was successful pulling me out of this deadly disease.

Present Condition-

As it was understood that I may face some complications or minor health issues after the surgery but practically I am living much better life now. I feel normal, energetic and full of life. No regular visits to the doctor and with very less medication I am living overall good life. I do monitor my diet very closely and take some supplements to improve my immunity power. I may not be 100% disease free but I feel I am back to normal life doing day-to-day activities and being social too.

Million thanks to Dr Aditi for her efforts, confidence and positive approach towards the demotivated patients like me. She is gifted with very high level medical skills and there is no comparison for her hard work. I also learned one thing from her is rather thinking will I survive? You should believe in “I WILL SURVIVE!”

Cytoreductive surgery and HIPEC by Dr Aditi

Dr Sumaira Pervez, a radiologist from Pakistan, whose mother had Cytoreductive surgery and HIPEC by Dr Aditi, talks about her experience with HIPEC

When my mom was diagnosed with pseudomyxoma peritonei I was told by the surgeons that the only treatment was cytoreductive surgery with HIPEC but nobody was enthusiastic about doing it. Nobody offered any hope and they chose rather not to do it. One reason was that the HIPEC component was not available in Pakistan and another was that since it is such a rare disease nobody had any experience with cytoreductive surgery. At most the surgeons had done 1 or 2 procedures with not very favourable results.

It is known as the “Mother of all Surgeries”. The procedure is of a radical nature and carries high morbidity and mortality. It is relatively new procedure but the technique has been refined over the last few years. The greatest fear stems from ignorance. Many surgeons have just heard about the procedure and have no experience with it. A surgeon who is a specialist in peritoneal surface malignancies knows how best to chose patients for this procedure. Done properly and having a low grade tumor increases your life expectancy by upto 15-20 years.

It is a serious surgery and requires careful monitoring and might result in extended stay in the hospital. Life changes after the surgery but it nothing that can’t be managed. Recovery is slow and prolonged. An advantage that I felt over other tumour therapies was that since the chemotherapy is direct and is a single session the patient does not have to undergo the many side effects of systemic chemotherapy like nausea, vomitting and hair loss.My mom has a pretty reasonable quality of life. She suffers from loss of appetite, abdominal cramps and altered bowel habits but is recovering well and getting back to her routine. She is physically active and is slowly improving.

Given the fatal nature of the disease and a reasonably good outcome of the surgery with the ability to maintain a fairly good quality of life patients of pseudomyxoma peritonei should undergo the procedure.

My experience with cytoreductive surgery

We are resident of Hyderabad india, my mother aged around 65 years was diagnosed with rare type of disease called pseodomaxima peritonia in 2009 Aug ust in mediciti Hospitals in Hyderabad while CT scanning and they advised us to meet surgical oncologists and for further tests biopsy etc and in biopsy they confirmed the same ,we went to many hospitals in Hyderabad ,Mumbai (Tata hospital , breach candy & other famous doctors) and even American hospital in Dubai in 2010 but we are not satisfied with their advised because of different opinions of the doctors but finally we went to a famous hospital in Hyderabad OMEGA HOSPITALS they advised us to go for surgery immediately , as my mother health was deteriorating every day and we decided to do the surgery , they opt for laproscopic surgery first , but it was failed they were unable to remove any thing and can’t find the origin of the primary tumor hence they did open surgery after 3 weeks but they just remove some mucus without touching the tumor ( Appendix tumor found) they decided to do other surgery after giving chemo few cycles and they did surgery after 6 weeks but unable to remove completely , after 3 major operation my mother health was same because the jelly like substance formed again and the hospital refused to do any further treatment and they didn’t left with any option.


Then we searched for other hospitals we have found two specialists in these ( HIPEC) field ,one from Mumbai and other from Bangalore , we decided to go Mumbai first and we met the doctor but we were not satisfied with his approach then the next day we left to Bangalore to meet Doctor Aditi Bhatt and we fully satisfied with her plan and approach and also she told us the chemo given in Hyderabad was completely wrong medicine , after a detailed meeting she advised us to go for a surgery ( if possible Hipec) and finally she did the cytoreductive surgery and it was a successful surgery and this time the CEA level also come down to normal range nearly 3.0 , ( In Hyderabad they did 3 surgeries but it remains same around Cea level was 45.0 after surgeries and chemo) ,now more than a year completed and my mother’s health is very good and energetic she is doing all the household works ,shopping and travelling etc and she was on fast whole month of Ramadan , unfortunately the doctor unable to do the Hipec because of her BP was going down while operating but still my mother is fine without Hipec and 3 months back we did ultra sound and there was no free fluid , what I feel the surgery is more important in these kind of disease and surgeon like Dr Aditi Bhatt who did the surgery with patience unlike the famous busy doctors who just look commercially .
Best of luck to Dr. Aditi bhatt.


Regards.
Mohammed Khursheed.
Hyderabad India.