I had hoped that I will exit this world without getting into the clutches of the medical profession. I also had a good reason to be hopeful. In my almost 57 years of life I had not spent a single day or night in a hospital as a patient. I often use to boast about it. Unlike my four siblings, I was even born at home. But recently my hope got shattered.
“To do nothing is sometimes a good remedy” – Hippocrates
Let me start at the beginning. In 2005 after experiencing some uncomfortable symptoms I got an ultrasound scan done of my whole abdomen. I had multiple myomas (fibroids) in my uterus. Up to 2018 I had mild symptoms like gastritis; occasional left abdominal pain; occasional frequency of urination which required no treatment.
In February 2018 I had pain in left lower abdomen for a few days. Ultrasound scan (USG) showed multiple uterine fibroids one of which was enlarged and right side pleural effusion – an accidental discovery made by the radiologist. Over the next two months I consulted several doctors including two chest specialists, three gynaecologists, a heart specialist, a general physician, etc. I also met a well-read doctor (M.D. in internal medicine) who opined that it could be pseudo-Meigs syndrome.
I was prescribed many tests. I got all the tests done which were not invasive like blood tests, x-ray etc. All the tests for tuberculosis (T.B.) were negative and the reading of CA125 (a controversial test) was raised. One doctor suggested that he will remove the entire pleural fluid and start me on T.B. drugs. I decided not to get the entire fluid removed as that would have made proper diagnosis impossible. I got a pleural tap done in which a small amount of fluid is removed for testing purpose. The cytology report of the fluid showed no evidence of either T.B. or malignancy. This period of two months was very stressful as generally pleural effusion is an indication of T.B. or spread of cancer. Two doctors – my general practitioner (G.P., a rare breed in these days of super-specialization) and secondly a physician gave wise advice. They both asked me to wait and watch. And within two months the pleural effusion disappeared on its own. I was happy and relieved that without any treatment the problem had resolved itself. This is actually true for most medical conditions. A very wise doctor friend, Dr. S has often told me that allopathy has cure for only about ten medical conditions out of a thousand! Everything else is managed symptomatically.
As I was already menopausal I decided not to do anything about my uterine fibroids as they are anyway supposed to shrink after menopause. Though sometimes they do create a lot of problems.
A Diagnostic Conundrum
In September 2020, I again started having problems. This time symptoms were severe. On 12 September, 2020 I developed gastritis, constipation and could not eat anything for few days. On 24 September I developed pain in lower abdomen, very severe on the left side and fever. I was doing symptomatic treatment for about two weeks. Even in the midst of the COVID-19 pandemic (India ranks no. 2 in the number of cases globally and Delhi where I reside was one of the worst affected places in India), I was however quite sure that it is do with my fibroids and not COVID-19. After about two weeks of unresolved pain and fever on 26 September, 2020 I got ultrasound scan of whole abdomen done which showed multiple uterine fibroids, and a giant fibroid distorting the anatomy of uterus and its appendages; plus right side pleural effusion and ascites in lower abdomen. The radiologist, Dr. D said that my fibroid is huge extending from below the lungs to the pelvic region. He could not see the ovaries and in a private conversation (a few days later) with Dr. S – a mutual friend – Dr. D was very pessimistic about the outcome!! The following exchange took place between Dr. D and Dr. S (as told to me by Dr. S much later):
Dr. D: I had palpated the abdominal swelling. It is hard. Besides there is ascites and pleural effusion. No surgeon would touch her. This is what we have been taught in the medical college.
Dr. S: What could be done for her?
Dr. D: We have not been taught that!
After getting the USG done, the same day I visited a gynaecologist (an endoscopic surgeon) Dr. N who suggested various tests. She insisted that I should get a CECT of pelvis, abdomen and lungs done the same day at 5.30 p.m. at a radiologist’s clinic suggested by her and without even an attendant. I had to use all my willpower to decline. I was tired after whole day of running around and refused to get it done without a friend or relative present. Soon I realized that she was pushing me because she was leaving for Mumbai after a day and was hoping to operate upon me the very next day. She said with great pride that she practices in three cities, one of which is not even in India (that by itself disqualified her in my eyes as the operating surgeon is expected to be available for few days after an operation). Even about CECT she was being highly unethical, as this test is done on an empty stomach (which she did not even suggest) and an attendant’s presence is a must. However I got some other blood tests suggested by her done at her clinic. She had even advised pre-operation blood tests without asking me if I was going to get operated by her! Those tests I did not get done. The clinic later refused to send me the results by email. I had to threaten them and also complain to Dr. N (who by then, I had discovered, was also the managing director of the clinic) before I finally got my test results. Most blood tests were normal except CA 125 (Cancer Antigen 125) which was raised much beyond the normal limits. It was 458.58 against the normal biological ref. interval range of 0.00 – 35.00. There was of course no question of going back to either this clinic or the doctor.
On 30 September, 2020 I got CECT (chest & whole abdomen) done at a well-known imaging centre. The report was inconclusive and suggested MRI abdomen for further characterization of the mass in the pelvic region. The doctors doing the CECT were perplexed by what they saw in CECT. They even did an USG to crosscheck. But still could not arrive at a confirmed diagnosis.
On 2 October, 2020 I got the MRI done. With my fever, back pain etc it was a horrible experience. The banging noise were terrible. Immediately after doing a normal MRI the doctor suggested that I get a contrast MRI done as he also could not arrive at a diagnosis. I refused as I just could not take it any longer. The MRI report was as inconclusive as CECT and suggested that I get CEMRI/ PET CT done which may help in further evaluation. But by then I was realizing the futility of all these tests. All tests were inconclusive and were only adding to my distress. I was through with such tests and decided to go the old fashioned way and get a surgeon to open my abdomen to see what is wrong.
Basically the purpose of all these tests was to identify where the pelvic mass is originating from and if it is malignant. With these inconclusive test results and raised CA 125, the first possibility in the mind of every doctor I met thereafter was malignant tumour and that became the deciding factor for the future course of treatment. Even though my gut instinct was that I don’t have cancer, I prepared myself mentally & emotionally to deal with any eventuality.
Dr. S summarized my medical history to save on consulting doctors’ time. The very first line was “Follow up case of pseudo-Meigs syndrome”. I kept it on top of my medical reports and every doctor I consulted after that first went through it. Dr. S also contacted a long-lost gynaecologist friend, Dr. P who went through the reports and suggested that I get the surgery done by a general surgeon as gynaecologist would not be able handle any complication like adhesions etc. He suggested an onco-surgeon, Dr. A to do the surgery in whose hands he said he would trust his own family members.
I consulted Dr. A. I liked him as he had no airs about him, was simply dressed and easy to talk to. He seemed like a good person. In his differential diagnosis he was keeping two possibilities in mind – benign pelvic tumour or malignant pelvic tumour. At one point when I used the term ovarian mass he corrected me and pointed out that the reports are not definite on it. We had a discussion on “frozen section”. I said that often the results of frozen section are not accurate. He said only 5% are wrong in that that they give false negatives. I would have liked to skip frozen section (as they do give false positives) but kept quiet. I told him that I do not want extensive surgery. I would prefer dignity of life over longevity. (I had seen enough cancer patients who had suffered immensely in their last days after opting for radical surgery, chemo and radiation). Even as Dr. A was suggesting the future course of treatment in case my pelvic tumour was malignant, I kept quiet as I wanted my operation to be done by him and not antagonize him at that point. However in my mind I was sure of two things:
- That it is not cancer;
- Even if it is cancer I was not going to take any treatment like radiation, chemo etc except minimal surgery to alleviate symptoms.
Cancer is a profitable industry. Once a person is diagnosed with malignancy she becomes a patient for life in the hands of unscrupulous doctors who keep giving radiation and chemo therapy even when they know that such treatment will be of no use. Having had such an experience with a close family member way back in 1986 I have become wise.
Preparing for Death!
I was to go through an exploratory laparotomy after a week which is a major abdominal surgery in which one large vertical cut is made in the middle of the belly area. “By definition, an exploratory laparotomy is a laparotomy performed with the objective of obtaining information that is not available via clinical diagnostic methods.” As all surgeries are inherently a life threatening procedure I used that week to prepare for death – just in case I did not come out alive from the operation theatre. I prepared my Will and left detailed instructions on how to cremate my mortal remains. In view of COVID-19 pandemic I wanted my body to be taken straight to the electric crematorium from the hospital with no accompanying Hindu rituals. In any case to get the surgery done during the COVID-19 pandemic was not an easy decision as I was risking the life of my near and dear ones who would be accompanying me to the hospital. I almost backed out two days before admission as some of my symptoms had eased off. But as it was a matter of time before symptoms reappeared I went ahead with the surgery. I would be forever thankful to the four people who took the risk of contracting COVID-19 by coming to the hospital. Thanks to Mother Nature no one got infected with COVID-19 during that period.
The Final Diagnosis
After getting my preoperative tests done, on the appointed day i.e. 12 October, 2020 I went to the hospital. On that day I had another discussion with Dr. A. I reiterated that I don’t want extensive surgery and the mass in my pelvic region is not cancer. Under no circumstances I want to compromise my excretory functions. I don’t mind reduced life span but don’t want colostomy at any cost. He said you are tying my hands. I reluctantly agreed that he could take out lymph nodes and omentum in case of malignancy. Dr. A agreed that he will leave my intestines alone. After negotiating this compromise about my own body I got admitted to the hospital.
On 13 October, 2020 the operation was done. During pre-op consultations I was seen by three different anesthesiologists which in itself is absurd as anesthesiologist plays an important role and patient’s preferences are not conveyed from one to another. Just before the operation I had to argue with the fourth anesthesiologist that I do not want epidural catheter. I had not met this one earlier even though I had already intimated this to the anesthesiologist who had visited me the day before in the hospital. The anesthesiologist said that we will do what we think is best. I had to insist that he abide by my wishes. He did not put the epidural catheter but passed a comment after the operation when I was in pain that I should have listened to him. My pain subsided with simple intravenous paracetamol. There was actually no need for epidural catheter. Despite the associated risks, epidural catheters have become routine during delivery and surgeries. Opiates are given through it for pain control which in itself has become another money minting industry, but that is a discussion for another time.
Well the frozen section which was done during the operation tested negative for malignancy. So my lymph nodes got saved. I was lucky not to get a false positive. The mass in pelvic turned out to be benign ovarian mass/tumour. All of my reproductive organs – uterus, fallopian tubes, ovaries plus some other parts were removed. The histopathology report concluded that it was fibroma of the left ovary, benign hyperplastic endometrial polyp and leiomyoma. No further treatment was required.
From Pseudo-Meigs to Meigs Syndrome a Diagnostic Nightmare
It was the presence of ovarian tumour with ascites and right side pleural effusion which made all doctors first think of malignancy. It was actually Meigs syndrome which is “defined as the triad of benign ovarian tumour with ascites and pleural effusion that resolves after resection of the tumour. Ovarian fibromas constitute the majority of the benign tumours seen in Meigs syndrome.” Even in differential diagnosis not one doctor except Dr. S thought that it could be Meigs syndrome. It should have been part of the differential diagnosis. The Meigs syndrome has been well documented since 1937 and accounts for about 1% of ovarian tumours. A rare condition and difficult to diagnose. But can the doctors be excused for not keeping this possibility in mind? Even though my medical history started with the line “Follow up case of pseudo-Meigs syndrome” no one even used the term. In 2018, I probably had pseudo-Meigs syndrome, which includes myoma of the uterus with pleural effusion among other benign tumours of the ovary. From pseudo-Meigs syndrome to Meigs syndrome is perhaps even rarer. But the presumption of malignancy overshadowed the possibility of considering other conditions in doctors’ minds.
On 9 December, 2020 I got a repeat chest x-ray P.A. view done. It showed that the right side pleural effusion had resolved itself confirming the diagnoses of Meigs syndrome.
“If you are not your own doctor, you are a fool” – Hippocrates
A patient always knows and feels. My first instinct was to go to an old conservative hospital and get a radical hysterectomy done through open surgery which would have been fine with additional hindsight now gained. May be an exploratory laparotomy could have been avoided. Doctors need to spend more time in taking patient’s history rather than just relying on expensive tests. In this whole process I had to – at each step – negotiate about my body’s integrity viz which parts to be taken out, what tests to be done, which painkillers to be taken etc. It is not that easy. Many tests I went through like – CA125 – were totally useless as diagnostic tools and are in most cases just money making racket for the medical industry. In my case even exorbitantly expensive tests like MRI & CECT also proved useless. I managed it as finances were not an issue for me. People who suffer the most are the poor. A more workable system needs to be put in place which gives the patients complete control over their bodies and the right to say NO – to both investigations and treatment.
[Patient ‘X’ is a patient rights activist for over three decades.]