REAL STORY: 1

37 year old social worker from Delhi,

(she was interviewed by swaasthya Sanchar)

Intro: Today we will talk to a medical social worker who is working with a
government hospital and even when she is a medical social worker, still she
suffers from breast cancer.

-You yourself are a medical social worker in a government hospital you must
have helped many people.

-Yes,

-And today you yourself require help!

-It all started in Sept 2002, when I felt a radiating pain in the left breast and
along with that a small lump. After that for regular examination, I started going
to a senior surgeon of my hospital as I was not very confident of doing a breast
self examination. He started me on hormones and I kept on going for regular
checkups, according to him it was normal for age and nothing to worry about
and that a lot of women come to him with these kind of problems. He
prescribed me Vitamin E and some other medicine. I took all the prescribed
medicines. Couple of times he also suggested FNAC and some other
investigations as well. The reports turned out to be negative for cancer. Here I
would like this message to be going to others that the inadequacies of the
doctors played a role in my suffering and it needs to be brought out. When I
went for FNAC, the doctor kept asking me that where should she put the
needle. See, I am a patient. How do u I know all these? It was a doctor’s job to
decide where to put the needle and take the sample from. It went on for two
years and all the reports turned out to be negative. Then I suddenly thought of
taking a second opinion from the same hospital. Immediately on seeing me, the
doctor suggested me a mammogram. And the radiologist while doing
mammography told me that what he was seeing, was not good. He said that if I
wanted to live, I should get an ultrasound guided FNAC next day. One naturally
gets disturbed on listening this. The next day sample was taken and in the
evening I was told on phone that it was cancer of breast. Just imagine it started
with one lump and it increased to 6.

-How long it took?

-In two years time the lump increased from one to six in number and I could
feel it all. Although only one was malignant out of these six.

-You knew you had a lump, and for two years, even after going to doctor
regularly, proper diagnosis could not be made!

-I am surprised that even on my insistence of getting a mammogram done; the

doctor kept saying that there is no need for a mammogram and in fact
discouraged me from getting it done and said everything will be fine.

-You went to a second doctor and you took this decision on your own. So after
two years of regularly going to a doctor still your disease could not be detected
properly. How did you feel? How angry you were on the first doctor?

-Let me tell you, basically I am a strong person (said coyly), For a moment I
felt...In fact the whole night I cried a lot. I thought I will have to go to hospital
all my life, lifelong I will stay in hospital. I will have to go to hospital for follow
ups, something might happen beyond this, my life will be spent in hospital, and
my mind will never be free again for doing other activities or so.
My mother and everyone thought that the world has come to an end,
everything is finished. On 13th November 2004 my treatment was started. My
surgery was done. 21 days later first chemotherapy was given to me at AIIMS.

-How much problematic was surgery?

-By the grace of God I had no problem in the sense that the operating surgeon
was very cooperative and in fact he called me the same day to come at 7am in
the morning. In fact when he was examining he felt some nodes in
supraclavicular region. When he was operating, I was on OT table and during
surgery he told me that he would like to take those nodes out and examine and
if they are also malignant then he will stop the surgery. Because he will have to
think about other line of treatment. He took those out but they were not
malignant. So he went ahead with the surgery.

-Was the cancer restricted to breast or was axilla also involved?

Axillary lymph nodes were also taken out. Out of 18, 8 were malignant.

-How much was the cost of surgery?

-The cost involved was Rs. 45,000.

-What happened after 21 days of surgery as you were telling…... what all
happened.

-As, my house was away from the hospital, I had to come for radiation daily
and everyday journey of 2 hours would be difficult, so I thought of shifting to
AIIMS. We consulted the RT OPD at AIIMS. RT people asked for slides. The
doctors over there reviewed case and decided their line of treatment.
Chemotherapy started exactly 21 days after surgery. Chemotherapy drugs itself
cost me Rs. 75,000 and after first cycle I had febrile neutropenia. Hurridely I
was admitted .TLC was very low. This costed me around 35,000.

-So approx 1 lakh 10,000 was the money spent? How many cycles of
chemotherapy did you take?

-Six cycles.

-This 1 lakh and 10,000 was for I cycle or …….

-For one cycle.

-You mean for 6 cycles you spent around 6 lakhs 70,000 or approximately 7
lakhs.

-absolutely

-Well a small question.. Going back to 2002, if in the beginning, it could be

known that the lump which you were feeling was cancerous, then would all
your problems been less, your difficulties would have been less, money spent
would have been less.

-Obviously. I think, at that time if that was cancer that would have been
restricted to breast only. I say may be. May be that was not cancerous. Even f
that was cancer then it would be limited to breast. Lymph node would be free.
Since it spread to lymph nodes, so I had to undergo chemotherapy and all the
associated misery happened to me. Only a person who has gone through the
misery can describe and no body else. For others it’s like a story.

-You were regularly doing BSE?

-Yes, in fact I told you since I was not confident I went to the surgeon regularly.

-What was the size of the lump then when you felt it?

-3cm

-No, I mean the very first time when you felt it?

-Oh, it was very small may be roughly about the size of a small gram.

-Size of the lump which was like a gram, continued to increase in size?

-Yah, I am sure.

-Besides that you also got newer lumps.

-Oh yah.

-You could also feel the new lumps.

-yah, sure.

-Ok, What do you have to say about chemotherapy? We here that it very bad
side effects.

-Chemotherapy is very painful. Drugs are like poison it is often said that “Poison
kills poison” that is what it does. These drugs are really like poison. Its very
painful. You can not eat or drink anything. All the time you have nausea,
vomiting, pain in abdomen, you loose your taste buds, you have very big mouth
ulcers. Rest other superficial things like hair fall occurs, you get lot of
pigmentation. Meaning, the person gets completely shattered. Neutropenia
occurs, you get admitted in hospital. You have to wear mask all the time. Life
becomes very restricted. At times I felt during the chemotherapy that I should
stop the treatment and let myself die since I have to die any way.

-Right now I am seeing some bandage in your arm tell us about it?

-In 2004 when I was operated I was told a swelling of the arm could arise but
nothing happened for one year. Jan 2006 all of a sudden a swelling started in
my left arm, the side on which operation was done, it kept increasing slowly. I
consulted the cancer surgeon, who prescribed antibiotics and pressure garment,
both all these did not help. Again I have consulted the doctor and he has
advised me antibiotics and to wear a pressure garment for 24 hours. I am
wearing the pressure garment 24 hours a day and it is improving now. But I feel
like a handicap as I can only work with one hand there is no grip and power in
the other hand. The hand feels heavy and it pains all the while.

-Now regular check up and every other thing needed is going on perfectly?

-I heard one has to go for follow up to the doctor once in 3 months time but in
my case in a week at least one to two days I still have to spend in the RT OPD
as something or the other keeps cropping up. I don’t want to repeat the same
mistake like I did of relying on one doctor and neglect myself anymore. This is a
mistake I did. Now even for very small problems I go to my doctor. Weekly
once or twice I keep going to hospital.
-One lady and a disease in a very sensitive part of her body. She catches the
disease in very early stage. But the doctor cannot perform his duty perfectly.
Not only the lady but her whole family suffers from the problems. Lot of money
is spent. Is it needed that some special training needed to be imparted to
doctors for treating breast lumps effectively? What’s your opinion? Should there
be new guidelines? All the doctors and surgeons those who deal with breast
lump, should get separate training?

-See, everything has many facets. May be my previous doctor was preoccupied
with too may patients. May be he acted according to his experience. The doctor
should never be casual about the complaints .I now firmly believe in that a
patient is never wrong it is the doctor who is not able to understand the patients
complaints, may be it is the limitation of their subject. Whatever the patient is
saying has some basis or the other. For no reason no one complaints. Every
complaint must be addressed properly.

-For such serious problems do you think a group of doctors should see him in a
set up or that a patient should go to more than one doctors?

-Yes, now I definitely think that one should go for second opinion. One should
have blind faith in one doctor. Unfortunately, (with a sigh) this is happening in
medical science that the doctors do their work as some mere job, very casually
not as a service to humanity, social values have changed, everything has
changed, the attitude of serve has gone away… (with little smile) Patient for her
safety should go to more than one doctor for opinion.

-To save oneself from breast cancer BSE is not enough. Do you feel special
training of the doctors in the field of breast cancer is essential?

-yah, absolutely, for sure. Patient does not know the whole thing, she has
limited and half knowledge. But when she goes to the doctor, she thinks that
she is going to a specialist, who will see the patient thoroughly, understand the
problem in totality and treat accordingly. I am surprised in my case the doctor
could not suggest a basic investigation like mammogram. Where as a patient
like me could suggest that. I am really surprised. This indicated his lack of
training or experience for which he did not feel the need to get even a basic
investigation done.