Thyroid Cancer – My story
I’ve had various health problems in life, survived quite a few surgeries too. The first major surgery was Caesarean section, as it was done way back in 1974, in emergency in a small private clinic, as the baby started having high pulse rate, i.e. what the Dr. said. At that time, the practice was to cut your abdomen right from below the navel till your groin. I had lots of problems with the stitches, which took about 50 days to heal, as there was some oozing from few of them. It was during pregnancy that I gained a lot of weight, so the last 2 months was told to restrict my diet!! I was a sportswoman, playing badminton for years, which I gave up after marriage, as I had a torn knee cartilage, which I continue to have. In 1978, I had a normal delivery, few stitches were put, as my son literally wanted to push his way into this world, with his hand! My periods were always irregular, so according to the gynecologist, I’d be thankful to be a mother of 2 kids, as when I ovulate is very difficult to know!!! But in 1983, I was in for a shock, as with irregular periods, with out any symptom of pregnancy, I was having continuous stomach ache, especially in the lower abdomen. The Gynae. couldn’t make out for sure it was a pregnancy, then an ultrasound was done, but before that I was admitted to the hospital, as the pain got worse, so the Dr. decided to do surgery, just before I’d be wheeled in to the OT, the radiologist called to say, it is ectopic pregnancy. As my husband wasn’t there, I had to sign the form, but the Dr. refused to perform tubectomy, as my husband’s signature was required.
But during all these years, I continued to have severe pain in my abdomen when I used to walk, which I loved to do. But the Dr. started saying I’m lazy to walk, i.e. why I’m giving such excuses. When the pain persisted, they did barium meal, and then barium enema tests, which didn’t say anything conclusive, said I’d have an exploratory laprotemy (is that the right word?), to find the cause of the pain. It was at this time,they detected that I had an incision hernia at the wall of the intestine, which used to hurt even while I used to eat. So at last the Dr. was aware that I wasn’t feigning pain. This was in 1985. But as I was having continuous fever I was also asked to take the medicines for Tuberculosis, as its incidence are high in India. The hernia growth was about the length of an adult finger. This time too, I had problem with the stitches, which took long to heal. After surgery, I had severe vomiting, throwing up green fluids.
During these years, I was also suffering from severe back pain; first I was treated with painkillers, diathermy, which did help initially. But the pain got worse, so much that being Indian, wearing the sari, was also a problem, as the long skirt that we wear inside touching my thighs used to burn me, my feet felt as if I was walking on burning coal. They did a myelogram in 1984, but sad the radiologist with my luck, couldn’t detect the bulge on my L4-L5 disc. The effect of this was so bad, that the Dr. said that it would last for 24 hours, but my headache & vomiting continued for more than a month. Saw quite a few orthopedics & neurologist, but of no help. Changed the orthopedic, who sent me for acupressure, which again seemed to be a waste of time & money. In that hospital, a physiotherapist who saw me, was absolutely right in her diagnosis, she said – choose a good orthopedic surgeon, who has specialized in spinal surgery, who will finish the surgery within an hour, as that is what I need. But the orthopedic in that hospital thought I was a psychic case! I told my husband, I don’t think I need a psychiatrist, but the orthopedic, said I’ll never visit any more Drs. Then, one of his friend said, I must visit that particular orthopedic surgeon as a last chance, who even fixed the appointment for us. He was an old man, who was also with WHO, all that he noticed me was walking a few steps into his cabin, heard me say my story, then told me after another 5 steps to lie on the bed. The first question he asked was, since how long was I walking like that? I told him, I don’t know what he is meaning. Then he said, didn’t anyone tell me that I was walking differently, my one shoulder was drooping! I said none ever said so. Then, he asked for my myelogram, which was taken 4 years before that, though I had a bone scan too after that. Then, he said it clearly shows the bulge, which was pressing on both sides on my nerves, called a neurosurgeon, didn’t tell him anything about my case, showed him the myelogram, he too saw the bulge. So the surgeon told me, choose a date of my convenience, as my kids were small, as I’d make arrangements at home, and then come for surgery. This was in 1988, when my L4-L5 prolapsed disc surgery was done, soon after which my back pain too disappeared, the only problem like in my earlier surgeries was problem with the stitches. It was for the first time, they gave me a bottle of blood after surgery.
Due to long term suffering with back pain, I was given a lot of painkillers, which took its toll on my kidneys. In 1989, I suffered with high fever for a long time, after ruling out various diseases, when the pain got worse in my abdomen, mainly on my right upper side, the physician told me to have an ultrasound done, which suggested that both my kidneys were enlarged, also got scarred. My condition was so bad, that I just couldn’t eat any food, as I’d throw it all at once. So, I was put on a drip, with the medication given through that, after 10 days was discharged from the hospital, when my pain, fever, pus & blood cells also reduced in my urine. On discharge they reduced my medication, once again fever started rising, so for some more days was kept on high doses of anti-biotic, which continued for 3 months in reduced dose, as my food intake got reduced, as it was difficult to eat more than a small bowl of rice at a time. I was told to have USG of my kidneys to check for further damage time to time, which is duly done, so far, the scars have been the same (touch wood). But after this I was detected to have high Bp!! For the first 6 years it was controlled by low salt intake, got worse, then just after my mother’s death in 1995, it got worse, so needed tablet to keep it under control. I’m taking the minimum dose for it, so now my Bp is well under control.
During one of my regular checkup for my kidneys with USG in 1992, when it was detected why I was always complaining of severe pain right down in my groin, also used to have severe bleeding during my periods, lasting for 10 days. This USG showed, that there was a big fibroid, that was what it was thought, but when the gynae. opened my abdomen, there was a big cyst, the size was almost 9cm x 12cm., also my uterus was big, the size of an orange, so both were removed, but my ovaries were saved due to my spinal problem. Two years later, had cysts in both my ovaries, another gynae. wanted to open me (I was thought to be a guinea pig, with each surgeon wanting to show their art in stitching me!) But my daughter who was doing her medicine, MBBS, then refused to allow me for it, so a horizontal scar got saved in my abdomen!
In 1990, i.e. 2 years after my L4-L5 prolapsed disc surgery, in the next stage they found another bulge, but the orthopedic surgeon, who did my previous surgery, refused to open my spine, thank God, for that, told me to tolerate the pain as long as possible. For the last 14 years, I’ve learnt to live with it, at times when I exert myself a lot, it does hurt a lot on my lower back, but knowing alternative healing, I use that method, it does give me relief from pain without a pain killer!
I thought having survived without my usual record of 3-5 years with some surgery, I was very happy. But this happiness was short-lived. From 1998/99, I started having problem especially while I lie down to sleep, would find it difficult to breathe. I started having my head propped up against 2 pillows, to make me feel comfortable. Then while walking, I used to breathe so loud, that all the passersby turned to look, but I thought, they’re looking at my bulges, carrying load, so never bothered to consult the Dr. Then, the burping sound started, even when sitting down without exertion, still I thought due to my excessive weight, it is making me difficult to breathe. When my daughter was engaged, is when I got the intuition that I’m going in for cancer, as my daughter was doing her MD in radiotherapy, I thought well, she is there to treat me. But didn’t want to tell her, as, soon after her marriage she was to join her husband outside India, as he was to pursue his PhD studies. On the 3rd day after her wedding, was when I got really sick. I was bending down & packing our stuff, as the marriage wasn’t held in New Delhi. The node had got stuck to my windpipe I think, as I just couldn’t breathe. I was alone at my sister’s house. Tried to contact my daughter, she had gone out with her husband. When she came back late that night, seeing me & by what my husband said, she thought, maybe something was wrong with my heart. She wanted me to go for check up there, but I refused, saying my cardiologist is back home; I’ll consult him soon on reaching home. Which I did, but he refused to believe me, when I said my problem was in my throat. He told my son, that I’m having acidity problem! That I’d cut down my weight & so on. But I had the strong intuition that there was some serious problem in my throat. To make all believe me, God made me have a bad fall in the bathroom when I was having my shower. I hit the back of my head against a tap, was out for few seconds, somehow managed to get up & finish my bath. I started having a splitting headache. I called my physician, told him about my fall, he said I’d need a scan of my head, but my husband felt, if I rest I’d be fine. In 2 days time, a swelling started in my neck & kept growing, causing a lot of pain too. When I called the physician, who said it was acidity earlier said, if there is swelling above my head, I must see a surgeon. I did see one, who couldn’t make out the exact cause of it, as by then the swelling was a lot. He gave me some anti-inflammatory drug & painkiller, told me to see him after 5 days. By then the pain had slightly reduced, so too the swelling. When he felt my neck now, he said it looks like your thyroid.
My daughter was away from India, sent her an e-mail, describing all the conditions, as if for my friend, as I didn’t want her to panic when she knows it was for me. I also read a lot about thyroid cancer in the net by then, knew about the USG, FNAC. When my ultrasound of the neck was done, I knew what was the outcome, the only thing the radiologist told me was, get it out at once. I knew, he also suspected it to be cancer, as he was my good friend. I told my husband, to take me to Mumbai, as they’ve one of the oldest & renowned cancer hospitals in this country. After going there, as the Drs. too thought it was cancer, I had also learnt that there were chances of me losing my voice, was prepared for that, but felt sad if I had to, as I’m a person who loves talking. In that aspect God was really very kind, as He gave my voice back. A lot of blood work was done. The 1st FNAC showed as Hoshimotos. The Drs. felt it was wrong, the general surgeon told me to see one of the oldest endocrinologists there. He suggested that I’ve a 2nd FNAC, at a different place. This time they drew it deep from 2 different places, it hurt a lot. This report came as Adenoma/carcinoma, to be done under frozen section. I was asked to consult a cardiologist, as I just couldn’t breathe in supine position. So he had mentioned that my surgery should be done with my head propped up. I did see my oncologist, surgeon, who was going to do my surgery. He asked me very odd questions- like was the size of the swelling bothering me, would I socialize without it. I told him, I’m not one who is bothered by what others say, and it was the pain that was bothering me. Later he told me, he said such things to gauge my mind.
Before this surgery, I did meet the anesthetist, she was nice lady, told her, each time after surgery I’ve severe vomiting, if she’d do something that would be great. She gave me two tablets to take the previous night & repeat it the morning of the surgery at 4 am on empty stomach. There, I didn’t have my usual vomiting, when I came to my senses, my husband told me that the operation was fine, they had removed my entire thyroid gland & one side para-thyroid too. I was lucky as the surgeon put staplers instead of stitches for me. On the 5th day, he removed my staplers, it was then he saw that I was getting severe cramps in my hands, told the nurse to give me calcium, which was prescribed to me along with other tablets. But he didn’t tell me the reason for the cramps. It was later that I came to know that along with my thyroid, one side parathyroid was also removed. The remaining one wasn’t functioning properly. So now life long along with my Eltroxin (thyroxin), I’ve to take calcium . I was asked to see the nuclear medicine Dr. on the 7th day, he told me that after 2 weeks, I’ve to get my TSH level done, if it was above 16, then I’d call him, take an appointment for my ablation dose. To be frank, I didn’t think I’d need this ablation dose, thinking as my entire gland was removed so what is the need for it!! But soon I learnt that I had a lot to learn from the various thyroid cancer sites I had subscribed to. It gave me hope, learning that people have survived this cancer for more than 30 years.
The best advice I got was from one of our friend who is a cancer surgeon that never let anyone pity me, nor pity myself, if I wanted to survive. I’ve always been a person, who never liked to depend on anyone for anything. Even after my surgeries, I’ve always managed to have my bath on my own, as soon as the drip was removed, as it gave me confidence. Right from the 8th day after my cancer surgery, I’ve been doing all my work like before. Even when I was off my thyroxin for 6 weeks for the whole body scan, managed to walk, do my work. I’m going for my regular follow-up as told by my surgeon, also get my TSH&Tg done to see the levels are well below the normal levels, so that recurrence of thyroid cancer hasn’t taken place. Serum calcium is also done, as soon after my surgery the level was very low. Now with change of my calcium tablet, it is much better now.
This year, when I visited my daughter, she saw the mole in my chest had changed color & size, being a Dr., she was suspicious, she said; please get it out as soon as I get back to India. I did exactly that, though my surgeon was confident it was fine, I didn’t want to take any chance if it was cancer. The lab test also showed it to be benign. At the same time, had my mammogram, after 2 years, now they said looks like some new nodes are there, had an USG in the hospital with my surgeon being present incase they had to do a FNAC, but luckily there was no need of that, as the radiologist said such nodes are common at my age, felt really relieved.
Now, my aim is to help thousands of poor cancer patients in my country who can’t afford the tests, by talking to labs & diagnostic centers to give concessions to such patients. I also talk to cancer patients to give that moral support, try to make them positive, as that is essential to fight any disease.
Hope my story is helpful to someone.
Best wishes & good health to all.
Geetha
