Tag: Lived Cancer Experience

Guest Blog 7 – PART V

By Mehtap Savaş

January 2025

Ankara, Turkiye

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This guest blog consists of seven parts – hyperlinks will be added as they are published in order:

PART I – INTRODUCTION (please see here)

PART II – LIFE WITH CANCER AND TREATMENT (please see here)

PART III – LIFE WITHOUT A STOMACH (please see here)

PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)

PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS

PART VI – CURRENT STATE & FINAL WORDS (please see here)

PART VII –  SILENCE OF THE MOTHERS (please see here)

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PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS

MY ONCOLOGIST TAKES ONE YEAR UNPAID LEAVE

During my 6-month check-ups, my oncologist took a one-year unpaid leave from the hospital. I was so sad and shaken. Since my doctor was very important to me, I could not imagine his absence. Due to the stress I was experiencing, I developed skin break ups in my abdominal area. 

Fortunately, he opened a private practice before my next 6-month check-up. Now I can make an appointment without any problems. During the years when my oncologist was practicing at the hospital, he would also perform examinations at 5 or 6 am in the morning due to lack of time. I went to him a lot in these early hours.


BEING STUBBORN WITH MY DOCTOR :-)

I have never delayed my check-ups. But sometimes I get stubborn with my oncologist about the tests. He is very detail oriented and does not miss the smallest thing. I didn't want to have some tests done. But I never succeeded :-)  Keep trying :-)


HOW DID MY ANNUAL CHECK-UPS DECREASE TO 3-4 MONTHS AGAIN?

About 3 years ago, during my check-up after my mother's death, my CA 16-19 levels, one of the tumor markers, were high. Thereupon, a special MRI was performed on the liver, pancreas and gallbladder area and a gastroenterology consultation was performed along with other tests. Nothing untoward happened, but the check intervals were reduced to 3 months. My doctor only agreed to take a 4-month break at my request so that I could go to the summer house in the summer.

All my tomography and MRI scans were performed at Hacettepe Hospital, with a few exceptions. But 1.5 years ago, for the first time, I could not find a paid private MRI day. They could give a date 3 months later. I had to have it done at a private imaging center for a very high fee. And I uploaded the previous MRI image and the result report to the imaging center's system.

MRI SHOCK

A few days later, the results arrived in my e-mail. When I read it, it said that I had widespread metastases in many parts of my liver. This time I really had a big shock. At that time, I was a devastated person who could not accept the death of my mother and was experiencing the greatest pain of my life. I also had panic attacks that started with my mother's illness. 

I made an emergency appointment with my oncologist. When I went, he had already read the results of the examination that had been sent to his e-mail. He told me that stomach cancer will not metastasize like this after many years. He called the imaging center and asked them to examine it again. He asked me to get the MRI images from the center and asked for them to be examined by a Professor Radiologists at Hacettepe Hospital.

When I returned home, I compared the areas called metastases with my previous MRI result. They even interpreted the hemangioma (a benign growth formed by the expansion of blood vessels) that had existed in my liver from the very beginning as metastasis.

When I went to the Imaging Center, they asked me to come back 3 days later for the MRI CD taken there. I said that I did not have time and that I wanted both the CD and the MRI results immediately. And I reminded him that the previous MRI images were loaded in the system. 

Frankly, I was annoyed that 3 employees sitting next to each other asked me to wait 3 days to load a simple CD with my imaging results. If I received the CD late, it would cause me to lose time as it would be re-examined at Hacettepe Hospital. This was a waste of my time.

Half an hour later, one of the employees brought the corrected report and the MRI CD. I said I wanted to meet the doctor. They refused, but I insisted. I couldn't remain silent on such an important issue. Our lives are filled with examinations and such a doctor's error was not acceptable.

The doctor came and explained the report to me, stating that she did not interpret the lesion in the right adrenal gland as problematic. However, this didn't matter to me anymore. The MRI would be re-examined at Hacettepe Hospital. Not only would this bring another financial burden, but the consequences of my psychological state would not be easily resolved.

I asked her, "Can you imagine what kind of mood a cancer patient would be in when they see such a result?" I also asked her if this was a control MRI and what she compared it with to reach her conclusion. She apologized to me and said that her staff did not inform her about the previous MRI. I said, as a doctor, I would expect you to ask me for this even if I did not provide the previous images. I told her that I was suffering from major depression and panic attacks, and that such events caused my depression to escalate.  

She apologized again and said she had learned her lesson. 

I wish she hadn't learned her lesson from me.


HACETTEPE HOSPITAL RADIOLOGY DEPARTMENT

We have the opportunity to choose the doctor when we have an MRI at Hacettepe Hospital or when we want the ones taken outside to be re-evaluated. Especially radiology professors are very good in their field. When one of these doctors evaluated the MRI, he stated that no mass or distant metastasis was detected in my liver, however, there was a millimetric lesion in the right adrenal gland and a close follow-up was recommended. 

There are many diseases originating from the adrenal gland. Adrenal hyperplasia, adrenal Cushing syndrome and pheochromocytoma are examples.

The reason why I mention these is that while one doctor gave an examination result in the direction of metastasis, another doctor reached the correct conclusion with a detailed examination to indicate which disease the lesion in the adrenal gland indicated.

Since my oncologist is very careful and experienced, he examines the imaging results performed outside Hacettepe Hospital and often has them re-examined at Hacettepe when necessary. You can see the benefits of re-examination or re-interpretation of medical results.

MY 3RD SURGERY

As a result of the re-examination performed at Hacettepe Hospital, my oncologist referred me to a professor who was an endocrine surgeon at the same hospital. I had likely an adrenal gland-related disease that can be detected very rarely and can cause high blood pressure that does not decrease and sudden deaths due to reasons such as stroke and heart attack. 

If I didn't have cancer and didn't have regular checkups, it might not have been detected, either. Especially considering my hospital phobia...

The endocrine surgeon listed the tests I needed to have first. Since the adrenal gland is an organ that has nothing to do with the kidney and is responsible for the production of many important hormones in the body, the tests were generally related to hormones.

When the tests were completed, my surgery was performed 1.5 years ago. My doctor performed my surgery in a private hospital, not Hacettepe Hospital. The doctor said that he would first start with laparoscopy and then convert it to open surgery depending on the situation. Ultimately, it was converted to open surgery. My brother, who lives in another city, came for my surgery. We used the hospital's companion service for a companion to stay with me.

Before the surgery, I talked to the head nurse and told her that I could not eat sugary things because I did not have a stomach, and I asked for my meals to be arranged accordingly. But since they didn't take this into consideration, dishes like sugary pudding were coming and I couldn't eat them. My doctor said I can't discharge you unless you eat something. 

Of course I couldn't eat it. I had no appetite at all. I stayed in the hospital for three days, but the painkillers made me confused. Those days felt like a month to me. My close friends from my workplace came to support me both in the afternoon and in the evening.

A week later, my brother had to return because of his work. We were alone at home with my two cats. When I returned from the hospital, one of my cats, Monica, never left me alone day and night and always slept next to me. She usually sleeps in her bed on the floor of my bedroom.

After the surgery, a hematoma (blood collection) formed in my stitch area and my doctor said it would go away over time. About 10 days later, dark blood started leaking from one of the laparoscopy holes. I went to the doctor and he explained to me how to drain this blood. I did what he said twice a day for about 10 days until the discharge stopped.

What was more difficult was running between buildings to perform the procedures when the pathology report came out and my oncologist wanted it to be re-examined at Hacettepe Hospital. I had a balance problem, I was walking swaying and I was in no mood. Then, my thyroid check was started immediately and a biopsy was performed. As someone who just had surgery, it was very tiring.

Then my 3-4 month check-ups continued. At my last check-up, my oncologist requested so many tests that I was going to 3 different hospitals a day. And finally I went back to yearly check-up schedule.

NEXT: PART VI – CURRENT STATE & FINAL WORDS

Guest Blog 7 – PART IV

By Mehtap Savaş

January 2025

Ankara, Turkiye

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This guest blog consists of seven parts – hyperlinks will be added as they are published in order:

PART I – INTRODUCTION (please see here)

PART II – LIFE WITH CANCER AND TREATMENT (please see here)

PART III – LIFE WITHOUT A STOMACH (please see here)

PART IV – RETURN TO WORK AND IMPACT OF CANCER

PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)

PART VI – CURRENT STATE & FINAL WORDS (please see here)

PART VII – SILENCE OF THE MOTHERS (please see here)

PART VII –  SILENCE OF THE MOTHERS (please see here)

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RETURN TO WORK

I was a Civil Servant working as a lawyer at the headquarters of a large institution with a very high workload. Even though I had a long sick leave, I returned to work quite early. 

When I started working, our female General Counsel, who was our supervisor before my illness, was very understanding, helpful to me, and supportive. But the attitude of some of my colleagues, especially their lack of empathy, was annoying. I didn't care about it at the time. 

It was great to get together with my favorite friends at the workplace. We were having a good time together. I regained my old joy. I also started to do things that I couldn't do before. I was making time for myself, going to concerts and having fun with my friends. We also took tennis lessons together.

MY TREKKING ADVENTURE 

When I felt good physically, I started trekking. It was very difficult at first, then I started walking as good as my group mates. We were having so much fun. Every week we were walking up the mountain on a different track and getting clean air. I attended regularly for 2.5 years. Once we got lost as a small group in front. Our situation was very funny 😊 One of our guides found us.

MY WORKPLACE AND MY PSYCHOLOGY

I think it was 3 years after my treatment when our supervisor retired. One of my colleagues was appointed in her place. Let’s face it; lack of understanding and accommodations may be a reality for employees affected by cancer at the workplace. I struggled for a year. I felt that even going to the hospital for my tests could be a problem. And my psychology collapsed. As someone who has faced death, my tolerance limit has fallen very low. It was like I was being punished for having cancer. After a nervous breakdown at work, I went to a psychiatrist.

Even though the supervisors changed, I continued to feel issues until I retired 5.5 years ago. I struggled constantly in the last years of my working life.

MAJOR DEPRESSION

My desire for life decreased, I became someone who couldn't sleep, couldn't laugh, didn't want to do anything, and cried over ridiculous things, even though I didn't even cry when I was diagnosed with cancer. Also, the idea of jumping from the 11th floor was constantly floating around in my mind. I didn't have a suicidal idea, but it was involuntarily messing with my brain. 

That's why I kept myself away from windows. If we ask why the 11th floor, the answer is that it is the floor where my office is located.

After listening to me for a long time with my questions, the psychiatrist said, "In cancer patients, the psychological process is experienced as REBELLION – DENIAL - DEPRESSION and ACCEPTANCE, but it seems that you have directly moved to the acceptance stage."  

He explained that my problems at work had triggered this process that I was experiencing incompletely, and that this process that I had to go through before was now starting to be completed.

He diagnosed me with major depression and started me on medication. He also gave me a 2-month sick leave report and asked me to stay away from my workplace and reminders of negative experiences.

Later, a male colleague of mine at work said that there were no tests for depression, how could doctors make the diagnosis without a test, that there was no such disease, that I had actually lost my determination to work, and that I would get better if I worked harder. Isn't it a joke?

Some people confuse unhappiness with depression. And the most common thing I'm told is that everything ends in the mind and that I shouldn't worry about it. Such people: please do not try to give us advice. Depression is not a whim.

Unfortunately, I have had this disease (depression) for 10.5 years. Because for the reasons I will try to explain, my depression can escalate and, according to my psychiatrist, it is recurring again and again. I go back to the moment I was diagnosed with cancer. After my mother's death, I went to therapy for nearly two years. I want to get better, but I still haven't been able to do it.

CAN I HAVE A HOBBY IF I HAVE A PHOBIA?

When I started to feel a little better after being diagnosed with major depression, I took up hobbies to keep my mind busy. I dealt with things like purse designs, wood painting, sewing, knitting, and watercolor painting. This felt good to me. I was giving the bags as gifts to the people I loved. I still continue with old and new hobbies.


MY SECOND SURGERY

In the ultrasound taken during a check-up in the fourth year after my treatment, the assistant doctor detected 3.5 cm mass in my ovary. I experienced another shock. MRI showed that there was no such mass. But my doctor wanted me to have surgery for preventive reasons, saying that it could reduce my future potential cancer risk. It was a very mild surgery compared to my first surgery. My sister accompanied me in the hospital. We had so much fun the night before the surgery. Thank you my dear sister :-)


OUR RIGHT TO SICK LEAVE

We have up to 12 months of paid sick leave for each illness and up to 36 months for diseases like cancer. After one year, this right is renewed. For this, a committee consisting of three doctors must report. 

I was experiencing depressive attacks from time to time during my severe depression. By the way, I mentioned above that I had a second surgery. When I fell due to neuropathy, I broke my ankle ligament and there was also a fracture where it broke. Since I could not work in these cases, a sick leave report was given. From time to time, a report was given by my oncologist.

I mostly experienced issues at work because of my sick leave. They also suggested that I could retire due to disability. As a lawyer, I knew my rights. It was frustrating. I retired 9 years after my treatment because my work was affecting my health negatively.


AN EXAMPLE OF MY DEPRESSION ATTACKS

Orthopedist who thinks he is an endocrinologist: At one point, I had bone pain throughout my body, mostly in my hip bones. I went to an ORTHOPEDICS professor in a private hospital. Films were shot and other examinations were conducted. The doctor ordered a PET CT scan because I had intense bone pain and because of my medical history. I discussed this with my oncologist before the scan, and when he approved, I got the scan. 

As a result, only a minimal increase in retention in the thyroid was noted. The doctor told me I had thyroid cancer. I found myself in the corridor with the report in my hand and stood there again. I am someone who has had my thyroid checked regularly for 15 years. Where did this come from? 

I took the results to my surgeon who performed my stomach surgery at the first opportunity and my doctor said the results were great. I didn't have cancer or anything. It is an organ that retains radioactive substances given to the body due to its thyroid function. It was a huge mistake and even arrogance for the orthopedist to diagnose me with cancer on a subject that had nothing to do with his field of expertise.

My psychiatrist said it took me back to the moment I was diagnosed with cancer. And he named another doctor, saying that the most cruel doctors come from among surgeons.

NEXT: PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS