Building a Relationship with your Physician: a patient’s perspective

Transcript

00:00 --> 00:03Support for Yale Cancer Answers comes from
00:03 --> 00:05AstraZeneca, introducing Your Cancer.
00:05 --> 00:07A program to spotlight the cancer
00:07 --> 00:09community and recognize those at
00:09 --> 00:11the forefront of cancer care.
00:11 --> 00:15Learn more at yourcancer.org.
00:15 --> 00:17Welcome to Yale Cancer
00:17 --> 00:18Answers with your host
00:18 --> 00:20Doctor in Anees Chagpar,
00:20 --> 00:22Yale Cancer Answers features the
00:22 --> 00:24latest information on cancer care by
00:24 --> 00:25welcoming oncologists and specialists
00:25 --> 00:28who are on the forefront of the
00:28 --> 00:30battle to fight cancer. This week
00:30 --> 00:32it's a conversation about building a
00:32 --> 00:34relationship with your physician with
00:34 --> 00:36Santana Hazel. Miss Hazel is an author,
00:36 --> 00:38healthcare advocate, and founder of the
00:38 --> 00:40Sister Girl Foundation. Doctor Chagpar
00:40 --> 00:42is a professor of surgical
00:42 --> 00:45oncology at the Yale School of Medicine.
00:46 --> 00:49Maybe we can start by you telling us
00:49 --> 00:52a little bit about yourself and your
00:52 --> 00:54journey.
00:54 --> 00:55I am a healthcare advocate,
00:55 --> 00:58I actually dealt with a lot of
00:58 --> 01:00health and wellness issues myself,
01:00 --> 01:03which brought me to becoming an advocate.
01:03 --> 01:05I am a mother, a grandmother,
01:05 --> 01:07I have several grandchildren, and
01:07 --> 01:09I'm so excited about doing that
01:09 --> 01:11because that's a lot of fun.
01:11 --> 01:13You have little ones running around
01:13 --> 01:16to keep you energetic
01:16 --> 01:18as well as keep you on your toes and
01:18 --> 01:20I am so passionate about the work
01:20 --> 01:23that I do and I wanted just to make
01:23 --> 01:25sure that things that I went through
01:25 --> 01:27in life and in my journey of having
01:27 --> 01:29over 16 surgeries with endometriosis.
01:29 --> 01:31I wanted people not to
01:31 --> 01:33suffer in silence.
01:33 --> 01:35I wanted everyone to have a voice and not
01:35 --> 01:38go through the different channels that I did.
01:38 --> 01:40And so I'm giving
01:40 --> 01:41them the cheat sheet.
01:41 --> 01:43It was a long journey.
01:43 --> 01:44Like I said,
01:44 --> 01:46I spent a lot of days and nights
01:46 --> 01:48in hospitals and doctors offices.
01:48 --> 01:50And so I'm off to a better start
01:50 --> 01:52these days and it's all about
01:52 --> 01:53giving back to the community.
01:54 --> 01:57So tell us how did your journey start?
01:57 --> 01:59I mean, tell us from the beginning.
01:59 --> 02:02Usually people's story starts,
02:02 --> 02:04Once Upon a time I was perfectly
02:04 --> 02:06well and then dot dot dot.
02:06 --> 02:08Once Upon a time I was
02:09 --> 02:11really healthy so I thought,
02:11 --> 02:13my symptoms started when I
02:13 --> 02:15was 11 years old with my menstrual
02:15 --> 02:18cycle and I didn't have any idea
02:18 --> 02:20that what I was experiencing,
02:20 --> 02:22the heavy cramping, the heavy bleeding,
02:22 --> 02:24just the pain of it all
02:24 --> 02:25during my menstrual cycles,
02:25 --> 02:27I thought it was normal.
02:27 --> 02:29My mom used to tell
02:29 --> 02:31me to use a heating pad or
02:31 --> 02:32take certain things to
02:32 --> 02:34help with my pain and drink tea,
02:34 --> 02:36anything warm makes
02:36 --> 02:38the body feel great and so none
02:38 --> 02:40of those things worked for me and
02:40 --> 02:42it became time to where over the
02:42 --> 02:43years it started getting worse.
02:43 --> 02:44And you know,
02:44 --> 02:46I started going to the doctors and I was
02:46 --> 02:49told that I would never have children.
02:49 --> 02:50As I said in the beginning,
02:50 --> 02:52I am a grandmother and I have children.
02:55 --> 02:58Going back and forth to the doctors
02:58 --> 02:59offices and not really understanding
02:59 --> 03:02that I had an illness at the time.
03:02 --> 03:03And so,
03:03 --> 03:04as you can imagine,
03:04 --> 03:06it was very frustrating because
03:06 --> 03:08endometriosis is a disease that not
03:08 --> 03:10many really talked about at that time.
03:10 --> 03:13We're making a lot of leeway now and so
03:13 --> 03:16I started going back and forth to
03:16 --> 03:18different facilities trying to get relief,
03:18 --> 03:20trying to get an answer to
03:20 --> 03:22what was happening to me.
03:22 --> 03:24Because at some point I realized
03:24 --> 03:26it wasn't normal that something
03:26 --> 03:28was really going on with me.
03:28 --> 03:30And I needed some medical attention.
03:30 --> 03:33And so what I did was I ended up having
03:33 --> 03:35an ectopic pregnancy throughout my
03:35 --> 03:38journey and that was the turning point
03:38 --> 03:41for me of getting diagnosed
03:41 --> 03:43and getting the proper treatment.
03:43 --> 03:45But even though it took awhile,
03:45 --> 03:48it took a lot of different medications
03:48 --> 03:50and I started off with
03:50 --> 03:52a team and I didn't understand
03:52 --> 03:54the importance of building my
03:54 --> 03:56relationship with the physician.
03:56 --> 03:58Being open and honest with them.
03:58 --> 04:01And so I used to hold back a lot
04:01 --> 04:03and you know I started dealing with
04:03 --> 04:05depression and anxiety because
04:05 --> 04:06it was very tough.
04:06 --> 04:08Having pains and things happening to my
04:08 --> 04:11body and not understanding what it was.
04:11 --> 04:13And so I went many years
04:13 --> 04:14undiagnosed about 14,
04:14 --> 04:17and I just kept going and living on.
04:17 --> 04:19I thought I was living and I wasn't.
04:19 --> 04:22I've had a lot of days to where
04:22 --> 04:24I couldn't get out of my bed,
04:24 --> 04:25excruciating pain,
04:25 --> 04:27fatigue, you name it, I had it.
04:27 --> 04:29I wasn't always
04:29 --> 04:31the greatest person to be around
04:31 --> 04:33because going through those changes
04:33 --> 04:35you could imagine that it became
04:35 --> 04:37times to where I didn't even
04:37 --> 04:39really like myself at some points,
04:39 --> 04:40because I just felt like I
04:40 --> 04:42was always the sick girl.
04:42 --> 04:44Always the girl complaining about
04:44 --> 04:46something being wrong and it was
04:46 --> 04:48hard for my family and friends to
04:48 --> 04:50understand what was happening to me
04:50 --> 04:51when I didn't understand it myself.
04:51 --> 04:53And so I
04:53 --> 04:55suffered in silence because I
04:55 --> 04:58used to hold it all in and at some
04:58 --> 04:59point I stopped really complaining
04:59 --> 05:01because I felt like no one wanted
05:01 --> 05:03to hear that.
05:03 --> 05:04Everyone has their
05:04 --> 05:06own things that they're dealing with,
05:06 --> 05:08and so no one really wants to
05:08 --> 05:10hear the girl that cries
05:10 --> 05:11wolf as they would call it.
05:11 --> 05:13And I really had something happening
05:13 --> 05:15to me and it really was a horrific
05:15 --> 05:17time because I felt isolated.
05:17 --> 05:19Although at points I did have some
05:19 --> 05:21great support and then I also had
05:21 --> 05:23people who I thought would support
05:23 --> 05:25me but they actually turned their
05:25 --> 05:27backs on me.
05:27 --> 05:29I don't hold that against anyone
05:29 --> 05:31because you don't know what you don't
05:31 --> 05:34know and so that brought me to today.
05:34 --> 05:35Through that journey,
05:35 --> 05:38which has been over 30 years of living with
05:38 --> 05:41endometriosis as well as other health issues,
05:41 --> 05:42I'm better.
05:42 --> 05:44I'm better in a sense,
05:44 --> 05:46but I'm not cured and so I like
05:46 --> 05:50to say I am living a whole life
05:50 --> 05:52regardless of the illnesses I may have.
05:53 --> 05:54This started when you were 11
05:54 --> 05:57years old and you were having
05:57 --> 05:59difficulty with your menstrual cycle.
05:59 --> 06:01You went back and forth to the doctor.
06:01 --> 06:04Was it really an issue of them not
06:04 --> 06:07being able to diagnose your issue or
06:07 --> 06:10what was really the issue that
06:10 --> 06:14you found problematic in terms of that?
06:15 --> 06:17The issue for me was not being heard
06:17 --> 06:20and I'm not quite sure if the doctor
06:20 --> 06:22that I had at the time understood
06:22 --> 06:24the level of endometriosis,
06:24 --> 06:27even to the capacity that I had it,
06:27 --> 06:30so I'm not really sure on his end,
06:30 --> 06:33but I can speak to how I felt and I
06:33 --> 06:36felt as if I was being dismissed.
06:36 --> 06:39I felt as if no one was listening to me.
06:39 --> 06:42I knew I had the pains,
06:42 --> 06:44but I actually had the doctor telling
06:44 --> 06:47me that it was all in my head.
06:47 --> 06:49And you start believing that
06:49 --> 06:51after a time if nothing
06:51 --> 06:54comes up and they do blood work and
06:54 --> 06:56that's all they ever did was run
06:56 --> 06:58labs and that wasn't the answer.
06:58 --> 07:01The answer was really taking my medical
07:01 --> 07:03history and going from there and that
07:03 --> 07:05didn't happen for many years to come.
07:05 --> 07:07And like I said,
07:07 --> 07:08just not being heard,
07:08 --> 07:10that was the biggest thing not being
07:10 --> 07:12heard. The doctor not being knowledgeable
07:12 --> 07:15of what was going on with me and
07:15 --> 07:17not being honest enough to himself
07:17 --> 07:20to say this is beyond my realm,
07:20 --> 07:22I'm going to have to send you to another
07:22 --> 07:24specialist and that should have happened,
07:24 --> 07:26but it didn't.
07:26 --> 07:29So was it your your family physician
07:29 --> 07:31that you went and talked to initially?
07:31 --> 07:33It was actually I was young.
07:33 --> 07:35I was a teenager at the time.
07:40 --> 07:41It was kind of like a clinic
07:41 --> 07:42in a sense.
07:42 --> 07:44It was one of those types of
07:44 --> 07:46facilities that I visited as
07:46 --> 07:49a teenager and when I became a
07:49 --> 07:51mom I actually had my own OBGYN
07:51 --> 07:53at that time and this is who
07:53 --> 07:55was treating me or not treating
07:55 --> 07:56me for the endometriosis.
07:57 --> 07:59So at 11 years old it was
07:59 --> 08:01initially going to this clinic.
08:01 --> 08:03Had you been to the clinic before?
08:03 --> 08:05I mean, did you have a relationship
08:05 --> 08:07with the doctors there or was
08:07 --> 08:09that part of the problem?
08:09 --> 08:13Well, at 11 I didn't go to the doctors at 11.
08:13 --> 08:15I actually didn't start going to
08:15 --> 08:18the doctor until I was in high
08:18 --> 08:20school I was about 16-17 years old
08:20 --> 08:22and at that point it was just bad.
08:22 --> 08:24My symptoms had intensified
08:24 --> 08:27and my mom said OK let's go to the
08:27 --> 08:29doctor and that's
08:29 --> 08:32when I started going as a teenager
08:32 --> 08:34and it was the clinic where there was
08:35 --> 08:37a pediatrician there that I had seen
08:37 --> 08:39on a regular basis.
08:39 --> 08:42And so it was more of them
08:42 --> 08:44just not knowing and just thinking
08:44 --> 08:46because it ran in my family,
08:46 --> 08:48the menstrual cycles being abnormal or heavy,
08:48 --> 08:50painful all of that I've seen a lot of
08:50 --> 08:53women in my family deal with the same thing.
08:53 --> 08:55And so when I did give a little bit of
08:55 --> 08:58my medical history in the beginning,
08:58 --> 09:00it was just brushed off as something
09:00 --> 09:00like that.
09:00 --> 09:01Well,
09:01 --> 09:04if your mom went through it or if you
09:04 --> 09:06had an aunt that went through it or
09:06 --> 09:08anyone else close to you and your family,
09:08 --> 09:10then that's what it is.
09:10 --> 09:13So really, not diagnosing the issue
09:13 --> 09:15or being able to treat it right.
09:15 --> 09:17Absolutely it was masked
09:17 --> 09:19for a long time,
09:19 --> 09:21by taking something over the counter
09:21 --> 09:22and that
09:22 --> 09:24never worked for me.
09:24 --> 09:28You may take the edge off a little bit,
09:28 --> 09:30but I still was in pain
09:30 --> 09:32every day of my life.
09:32 --> 09:33Imagine from 11,
09:33 --> 09:35I am 45 today, I've been
09:35 --> 09:37having pain this long.
09:37 --> 09:41Oh my goodness and so you said that
09:41 --> 09:42during this journey of yours,
09:42 --> 09:44you had an ectopic pregnancy
09:44 --> 09:46and you thought that was
09:46 --> 09:47really the turning point.
09:47 --> 09:50Tell us a little bit more about that.
09:51 --> 09:54When I had the ectopic pregnancy
09:57 --> 10:00no one listened to me.
10:00 --> 10:03I went back and forth to my doctors office,
10:03 --> 10:05to the hospital, and finally one of the
10:05 --> 10:07lab technicians decided to draw my blood.
10:10 --> 10:12This one day in particular,
10:12 --> 10:14and I'll never forget this because it's
10:14 --> 10:17so vivid in my mind because it was
10:17 --> 10:19such a horrific time and the doctor
10:19 --> 10:21walked out of the the visiting room,
10:21 --> 10:23the room that I was sitting
10:23 --> 10:25in and he said,
10:25 --> 10:28I'm kind of tired of you coming
10:28 --> 10:30here, and that crushed me.
10:30 --> 10:32It completely crushed me and so the
10:32 --> 10:34nurse heard what he said and I actually
10:34 --> 10:36knew some of the the nurses and
10:36 --> 10:38medical assistants that worked there.
10:38 --> 10:40And so they went and they talked to the
10:40 --> 10:42lab technician and she actually came in
10:42 --> 10:44and it was an order from the doctor,
10:44 --> 10:47but she drew my blood and she took
10:47 --> 10:49a urine and when she took my urine
10:49 --> 10:51nothing showed up when she drew
10:51 --> 10:53my blood and did a quant test.
10:53 --> 10:55It's called a quant and when she
10:55 --> 10:56did that test,
10:56 --> 10:58I think that's an abbreviation and it showed
10:58 --> 11:01my levels being really high to be pregnant.
11:01 --> 11:02And she thought it was odd
11:02 --> 11:04that it showed up one way,
11:04 --> 11:06but didn't show up another when the
11:06 --> 11:08numbers were high enough to actually
11:08 --> 11:11be able to show up in my urine.
11:11 --> 11:13And so she brought it to the
11:13 --> 11:13doctor's attention.
11:13 --> 11:16Now I was at this appointment for two
11:16 --> 11:18hours because the doctor refused to let
11:18 --> 11:20me come back in and for him to talk
11:20 --> 11:23to me about what possibly could be happening.
11:23 --> 11:25And so I found myself in the
11:25 --> 11:26ER because I couldn't stand,
11:26 --> 11:27I couldn't walk.
11:27 --> 11:29I was basically almost crawling
11:29 --> 11:31into the office at that point.
11:31 --> 11:33And it took me so long just to get
11:33 --> 11:36from the car to the door and then to
11:36 --> 11:38get in there to be told, that
11:38 --> 11:40I'm kind of tired of seeing you
11:40 --> 11:42in here and you're just
11:42 --> 11:44complaining and it's not that serious.
11:44 --> 11:47And that's what I was being told at the time,
11:47 --> 11:48not knowing that I had an ectopic
11:48 --> 11:50pregnancy until much later.
11:50 --> 11:52Almost until it was too late and
11:52 --> 11:54my mom was an advocate
11:54 --> 11:56for me and I'm so thankful for that,
11:56 --> 11:59because she said, I had enough
11:59 --> 12:01and this doctor is going to admit you,
12:01 --> 12:03we're not going to leave the hospital.
12:03 --> 12:04And so,
12:04 --> 12:06even the hospitals were sending me back home,
12:06 --> 12:08they would tell me to follow up with
12:08 --> 12:11my OBGYN, and when I go to see him,
12:11 --> 12:13he'll tell me there's nothing I
12:13 --> 12:14can do for you.
12:14 --> 12:16And so at some point my mother got
12:16 --> 12:18involved and she was very frustrated with
12:18 --> 12:20the situation and she had some not nice,
12:20 --> 12:22words for my
12:22 --> 12:23doctor and long
12:23 --> 12:25story short, I got admitted and I
12:25 --> 12:27remember my mom left to go get me some
12:27 --> 12:29clothes because all of this happened
12:29 --> 12:31so quickly and she left the hospital
12:31 --> 12:33once they had me situated.
12:33 --> 12:35And by the time she got from
12:35 --> 12:37the inside of the hospital,
12:37 --> 12:40and drove her car to a stop
12:40 --> 12:42light outside of the garage,
12:42 --> 12:44they were wheeling me back into
12:44 --> 12:46the operating room for emergency surgery.
12:46 --> 12:49They told me that I had internal bleeding
12:49 --> 12:53in my back cavity and I almost died.
12:53 --> 12:55Wow, so eventually by the time things got
12:55 --> 12:58to a point where they seem to be
12:58 --> 13:01pretty bad and you ended up in the
13:01 --> 13:03emergency room, you needed surgery.
13:03 --> 13:05Yes, I needed surgery and
13:05 --> 13:07had they listened to me before,
13:07 --> 13:10this wouldn't have been a situation to where
13:10 --> 13:13I would have been almost losing my life.
13:13 --> 13:16And the reason why I had so much pain
13:16 --> 13:18and I couldn't really move properly
13:18 --> 13:21was because of the internal bleeding.
13:22 --> 13:24And then after the
13:24 --> 13:27surgery, what happened?
13:27 --> 13:27After the surgery,
13:27 --> 13:30I remember the doctor went on vacation.
13:30 --> 13:32He left me in the hospital and went on a
13:32 --> 13:35vacation and another doctor had to take over.
13:35 --> 13:37Now when you're going through surgery,
13:37 --> 13:40I'm not sure if many people know this,
13:40 --> 13:42but when you have surgery and you
13:42 --> 13:44need to follow up with the doctor,
13:44 --> 13:46most doctors are not going to see
13:46 --> 13:48you and correct someone else's work
13:48 --> 13:51or even just look at anyone else's
13:51 --> 13:53work for that matter
13:53 --> 13:55and so anytime anything went wrong,
13:55 --> 13:56once I was discharged,
13:56 --> 13:59I had to wait for this same doctor and
13:59 --> 14:01honestly I didn't know any better.
14:03 --> 14:05I thought that the doctor knew what he
14:05 --> 14:07was doing and that he was right and I
14:07 --> 14:09was wrong because he went to school.
14:09 --> 14:11He is the professional and this
14:11 --> 14:13is his expertise and so I second
14:13 --> 14:14guessed myself a lot.
14:14 --> 14:17We're going to learn more about how this
14:17 --> 14:20story ends right after we take a short
14:20 --> 14:22break for a medical minute.
14:22 --> 14:24Support for Yale Cancer Answers
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14:25 --> 14:28supporter of the many individuals and
14:28 --> 14:29organizations who are working together
14:29 --> 14:31to end cancer as a cause of death.
14:32 --> 14:34Learn more about the Your Cancer
14:34 --> 14:36movement at yourcancer.org.
14:36 --> 14:40This is a medical minute about survivorship.
14:40 --> 14:42Completing treatment for cancer
14:42 --> 14:44is a very exciting milestone,
14:44 --> 14:47but cancer and its treatment can be a life
14:47 --> 14:50changing experience for cancer survivors.
14:50 --> 14:52The return to normal activities and
14:52 --> 14:54relationships can be difficult and
14:54 --> 14:56some survivors face long term side
14:56 --> 14:59effects resulting from their treatment,
14:59 --> 15:00including heart problems,
15:00 --> 15:01osteoporosis, fertility issues,
15:01 --> 15:04and an increased risk of 2nd cancers.
15:04 --> 15:07Resources are available to help keep cancer
15:07 --> 15:10survivors well and focused on healthy living.
15:10 --> 15:12More information is available
15:12 --> 15:13at yalecancercenter.org.
15:13 --> 15:16You're listening to Connecticut public radio.
15:17 --> 15:19Welcome back to Yale Cancer Answers.
15:19 --> 15:22We're discussing ways to build
15:22 --> 15:24a relationship with your doctor and
15:24 --> 15:27you were telling us about your
15:27 --> 15:30experience with endometriosis and some
15:30 --> 15:33of the difficulties that you had first
15:33 --> 15:35in getting diagnosed with endometriosis
15:35 --> 15:37and treated appropriately.
15:37 --> 15:40And then you left us right before the
15:40 --> 15:43break at the part of the story where
15:43 --> 15:46you were continuing to have symptoms,
15:46 --> 15:49you went to the emergency room.
15:49 --> 15:52And by that point were diagnosed
15:52 --> 15:54with internal bleeding and
15:54 --> 15:56taken back to surgery.
15:56 --> 16:00But after the surgery your doctor went
16:00 --> 16:03on vacation and
16:03 --> 16:06left you in the hands of another doctor.
16:06 --> 16:08But subsequent to that went back
16:08 --> 16:11to the first doctor with whom
16:11 --> 16:13you really didn't have
16:13 --> 16:15it seems a great relationship.
16:15 --> 16:18So tell us what happened after that.
16:21 --> 16:24I can say now that I don't think I
16:24 --> 16:26had a great relationship with him.
16:26 --> 16:27And what happened was once
16:27 --> 16:30I had to go for my follow up,
16:30 --> 16:32he was back in town and so that was
16:32 --> 16:35maybe a week or so later I went for my
16:35 --> 16:37first week follow up and I expressed to
16:37 --> 16:40him at that time how I felt because I
16:40 --> 16:42started to grow very agitated at this point.
16:42 --> 16:44And just to find out that I
16:44 --> 16:46could have died in that process.
16:46 --> 16:48And so I wanted him to be clear
16:48 --> 16:50on how I was feeling.
16:50 --> 16:52And this is when I started utilizing
16:52 --> 16:54my voice a little more with him,
16:54 --> 16:56and that's when he grew kind
16:56 --> 16:57of more frustrated with me.
16:58 --> 17:00And so he started allowing the
17:00 --> 17:02other doctors within the practice
17:02 --> 17:04that he was bringing in to actually
17:04 --> 17:06see me when I came in.
17:06 --> 17:08So my communication with him
17:08 --> 17:09and my interaction became very
17:09 --> 17:11minimal with him at this point.
17:11 --> 17:12And so
17:12 --> 17:14fast forward to two years later,
17:14 --> 17:16I get diagnosed with endometriosis.
17:16 --> 17:18Thankfully he did pass me on to
17:18 --> 17:20one of his other colleagues.
17:20 --> 17:21Because they was familiar with
17:21 --> 17:23the symptoms and
17:23 --> 17:25kind of the things that I was explaining
17:25 --> 17:27to them with my medical
17:27 --> 17:29history and things of that nature.
17:29 --> 17:30So this doctor,
17:30 --> 17:32as soon as I met with him the first
17:32 --> 17:34day and I told him what I've been
17:34 --> 17:37experiencing all these years and he said,
17:37 --> 17:38have you ever heard of
17:38 --> 17:41endometriosis and I said no and I
17:41 --> 17:43remember his name and everything,
17:43 --> 17:44and I'm so thankful to him
17:44 --> 17:46because he scheduled surgery.
17:46 --> 17:47I remember May 18, 2001.
17:47 --> 17:49I got diagnosed and I thought
17:49 --> 17:51that would be the end of it
17:51 --> 17:54and that I would be better because
17:54 --> 17:57there would be something I could take for it.
17:57 --> 18:00And then when I woke up and I found out I
18:00 --> 18:04had this disease and then there was no cure,
18:04 --> 18:05that was another bummer,
18:05 --> 18:07especially after finding out when I had
18:07 --> 18:09the ectopic pregnancy that I wouldn't
18:09 --> 18:11be able to have kids moving forward.
18:11 --> 18:14And that was another blow for me so
18:14 --> 18:16I've been having a lot of hard hits
18:16 --> 18:18throughout life because of dealing
18:18 --> 18:20with endometriosis and then also
18:20 --> 18:22being told that it's a possibility
18:22 --> 18:25because of the medication that they
18:25 --> 18:28had me on at the time that I am very
18:28 --> 18:30prone and I could get cancer and
18:30 --> 18:32that's where my advocacy comes in
18:32 --> 18:34with breast and ovarian cancer.
18:34 --> 18:35Because of the prevalence
18:35 --> 18:36with endometriosis.
18:36 --> 18:39So tell us a little bit more about that.
18:39 --> 18:41Tell us about your transition
18:41 --> 18:43into advocacy and how
18:43 --> 18:44that kind of took shape.
18:46 --> 18:48It was about 2010 and I said to
18:48 --> 18:51my husband at the time, I'm
18:51 --> 18:53just really frustrated with not being
18:53 --> 18:55heard and I remember having these
18:55 --> 18:57conversations with him and expressing
18:57 --> 19:00that I didn't want other people to
19:00 --> 19:03experience what I did in a way that I did.
19:03 --> 19:05As I told you in the beginning that
19:05 --> 19:08it was a lot of not being heard,
19:08 --> 19:10and so because I started doing more
19:10 --> 19:12research and I started getting
19:12 --> 19:14into research and just wanting to
19:14 --> 19:16know more about my body in these
19:16 --> 19:18different things that was happening.
19:18 --> 19:20And not just taking the doctors
19:20 --> 19:22word for what was happening to me,
19:22 --> 19:24I asked more questions and so when I
19:24 --> 19:26started to get answers and I really
19:26 --> 19:29started to feel more excited about how
19:29 --> 19:31things were turning in my life even
19:31 --> 19:33though I was still going through surgeries.
19:33 --> 19:35I said I wanna help other people.
19:35 --> 19:38I want them to know that it's OK to actually
19:38 --> 19:40voice their concerns and their wants and what
19:40 --> 19:43they want their medical health to look like.
19:43 --> 19:45And so I started the Sister Girl Foundation
19:45 --> 19:48and I did that because like I said,
19:48 --> 19:49no more suffering in silence.
19:49 --> 19:52And that's my tagline.
19:52 --> 19:54You know empowering women through it,
19:54 --> 19:55so we're no longer suffering in silence.
19:55 --> 19:57Our voices are heard and we are a
19:57 --> 20:00part of the care plan, and so
20:00 --> 20:01when the advocacy started and I
20:01 --> 20:03had to do it for myself first,
20:03 --> 20:05I had to learn how to actually stand
20:05 --> 20:07up for myself and with education
20:08 --> 20:11I didn't have to be a doctor to be educated,
20:11 --> 20:13I just had to really understand
20:13 --> 20:14what was happening to me,
20:14 --> 20:17so I knew the right questions to ask.
20:17 --> 20:19And the right things to do in
20:19 --> 20:20regards to how to research.
20:21 --> 20:22It's not just about Googling,
20:22 --> 20:24it was more so asking the right question
20:24 --> 20:27to the doctors to their team to know
20:27 --> 20:29what reputable sites I can look on to
20:29 --> 20:31see what information they can give me.
20:31 --> 20:33And so I wanted to pass that
20:33 --> 20:35information along to other women who
20:35 --> 20:37may actually be going through the
20:37 --> 20:39same thing that I was going through.
20:39 --> 20:41Be it endometriosis,
20:41 --> 20:42breast cancer,
20:42 --> 20:43or ovarian cancer.
20:43 --> 20:45So it sounds like
20:45 --> 20:46finding a good relationship
20:46 --> 20:48with your doctor has
20:48 --> 20:51many different facets to it.
20:52 --> 20:54I think one of the things
20:54 --> 20:57that you mentioned before the
20:57 --> 20:59break was finding a doctor,
20:59 --> 21:02not only whom you feel comfortable with,
21:02 --> 21:04but somebody who is
21:04 --> 21:05knowledgeable in the field.
21:05 --> 21:07So what practical advice
21:07 --> 21:09do you give to women?
21:09 --> 21:11And in fact, men,
21:11 --> 21:13all patients in terms of finding
21:13 --> 21:16a doctor with whom you can
21:16 --> 21:17really build a relationship?
21:18 --> 21:21One thing I would say is we don't always
21:21 --> 21:24know just by looking them up on line.
21:24 --> 21:26We can read their bio and see
21:26 --> 21:28what their expertise is when we're
21:28 --> 21:29referred to these physicians.
21:29 --> 21:31But one thing is you can figure
21:31 --> 21:33these things out when you have
21:33 --> 21:34that initial appointment.
21:34 --> 21:36When you have that appointment.
21:36 --> 21:38I've learned to be open and honest about
21:38 --> 21:41what I'm looking for and my concerns,
21:41 --> 21:42and so when you're looking and
21:42 --> 21:44vetting your doctor,
21:44 --> 21:46you have to really do your homework,
21:46 --> 21:49but you have to actually sit in that
21:49 --> 21:51appointment and be open and honest.
21:51 --> 21:53An even with your past hurts.
21:53 --> 21:54I've learned to actually express
21:54 --> 21:56that to my new Doctor,
21:56 --> 21:58so they will see and understand
21:58 --> 21:59if I'm reluctant in any way.
21:59 --> 22:01And then they can assure me that
22:03 --> 22:06I'm in the right place and so
22:06 --> 22:08they won't look at it as if I'm
22:08 --> 22:10being a tough patient or I'm
22:10 --> 22:12a difficult patient so
22:12 --> 22:13we don't want that
22:13 --> 22:15stigma placed on us and so
22:15 --> 22:17building your relationship in
22:17 --> 22:18with your physician.
22:18 --> 22:20Is it the initial being honest?
22:20 --> 22:22If we have to start somewhere?
22:22 --> 22:24And in order to build that trust,
22:24 --> 22:26the physician in return has to give
22:26 --> 22:28us something we have to see them
22:28 --> 22:30actually put in something that says,
22:30 --> 22:32OK, they're listening to me.
22:32 --> 22:34It can be whether we're building our
22:34 --> 22:36care plan together and you're actually
22:36 --> 22:38sitting and having dialogue with me,
22:38 --> 22:39making me feel as if you're
22:39 --> 22:41actually wanting me to be a part.
22:41 --> 22:43And you're inviting me to be a part
22:43 --> 22:45of my care plan.
22:46 --> 22:48Yeah, that's so important.
22:48 --> 22:51What advice do you have in terms of,
22:51 --> 22:53you know, knowing that the care
22:53 --> 22:55plan that you're building together
22:55 --> 22:57with your doctor really is something
22:57 --> 23:00that is going to work for you?
23:00 --> 23:03Because I think that the other part of
23:03 --> 23:05your frustration when we were listening
23:05 --> 23:09to your story was the fact that you were
23:09 --> 23:11going back and forth to the doctor.
23:11 --> 23:14First of all, it sounded like you didn't
23:14 --> 23:17feel that the doctor listened to you.
23:17 --> 23:19But the second part sounded
23:19 --> 23:23to be frustrating to you was really that
23:23 --> 23:25there wasn't any security or symptoms,
23:25 --> 23:28so you were continuing to have
23:28 --> 23:30this excruciating pain and
23:30 --> 23:31really nothing was helping.
23:31 --> 23:35So you know what advice do you have for
23:35 --> 23:38people when your doctor may or
23:38 --> 23:41may not have the answer to your problems?
23:42 --> 23:44So what happens is and this, and
23:44 --> 23:46something I had to really teach
23:46 --> 23:48myself throughout the years,
23:48 --> 23:50and it's still a daily practice
23:50 --> 23:52because what I realized is nothing
23:52 --> 23:54happens overnight and everything takes
23:54 --> 23:56trial and error and it's a process
23:56 --> 23:59through it and what I had to really
23:59 --> 24:01do was to realize is to take care
24:01 --> 24:04of my mind and my body and my soul,
24:04 --> 24:06not just the illness at hand.
24:06 --> 24:08And so when we're doing that because
24:08 --> 24:10when one thing isn't working,
24:10 --> 24:12another thing may not work properly.
24:12 --> 24:14And so when we're actually putting
24:14 --> 24:17our lives into these doctors hands,
24:17 --> 24:20one thing I would love for everyone to
24:20 --> 24:23realize is we are all human at this.
24:23 --> 24:24At the same time,
24:24 --> 24:27we are all human and we have to deal
24:27 --> 24:30with ourselves before we can expect this
24:30 --> 24:32grandiose reaction
24:32 --> 24:34and end result from our physicians.
24:34 --> 24:36Meaning if I'm dealing with
24:36 --> 24:37mental health issues,
24:37 --> 24:39my anxiety and depression
24:39 --> 24:41when I go into the office.
24:41 --> 24:43If I'm expressing to my doctor
24:43 --> 24:45what I'm feeling, even if it's not
24:45 --> 24:47something that he's treating me for,
24:48 --> 24:50the doctors need to know everything
24:50 --> 24:52that's happening with us as a whole,
24:52 --> 24:53so that way they would know
24:53 --> 24:55how to treat us as a whole.
24:55 --> 24:57When you're treating my illness,
24:57 --> 24:59I want you to make sure that you know that
24:59 --> 25:01I'm dealing with mental health issues or
25:01 --> 25:03I'm just not happy about certain things,
25:03 --> 25:05even when there's not a cure.
25:05 --> 25:06I had to deal with that.
25:07 --> 25:08I had to go to therapy.
25:08 --> 25:10So that's when I said,
25:10 --> 25:12when you take care of your mind while
25:12 --> 25:13they're taking care of your body,
25:13 --> 25:15then everything kind of works
25:15 --> 25:17together and so when that happens,
25:17 --> 25:18because a lot of people are
25:18 --> 25:20diagnosed with incurable diseases,
25:20 --> 25:21and when that happens,
25:21 --> 25:22how do you handle that?
25:22 --> 25:25What are you doing to take care of that?
25:25 --> 25:27Because just when they are taking care of
25:27 --> 25:30the cancer or the illness it is not
25:30 --> 25:32going to make that mental anguish go away.
25:32 --> 25:35It's there in the back of your mind,
25:35 --> 25:37and so if we're actually seeking
25:37 --> 25:39that help because my doctors,
25:39 --> 25:40now my team is amazing.
25:40 --> 25:42And so what happens is
25:42 --> 25:43they ask these questions,
25:45 --> 25:46well, how is your mood?
25:46 --> 25:47In the beginning,
25:47 --> 25:50when that question was posed to me,
25:50 --> 25:51I didn't like it.
25:51 --> 25:53I didn't like it because I didn't
25:53 --> 25:55realize that I really was feeling
25:55 --> 25:57these anxiety and depression symptoms.
25:57 --> 25:59I didn't know what that looked like,
25:59 --> 26:01and so I feel like if we
26:01 --> 26:02actually take those components
26:02 --> 26:04while we're treating whatever,
26:04 --> 26:07that treatment looks like and we add that
26:07 --> 26:10in and we treat the patient as a whole.
26:10 --> 26:11I think that we
26:11 --> 26:13will have a better outcome
26:13 --> 26:14between doctor and patient.
26:14 --> 26:15Yeah, and it sounds like
26:15 --> 26:17communication is really the key here,
26:17 --> 26:19not only being heard but being
26:19 --> 26:21able to voice your concerns.
26:21 --> 26:23And also being able to hear questions
26:23 --> 26:26like how is your mood and knowing
26:26 --> 26:28that that's coming from a good place,
26:28 --> 26:31a holistic place in terms
26:31 --> 26:33of your care.
26:33 --> 26:36What are your thoughts on getting a
26:36 --> 26:39second opinion if you go to
26:39 --> 26:41that initial appointment and you are
26:41 --> 26:44sitting in that office with the doctor
26:44 --> 26:46and it you just aren't clicking?
26:46 --> 26:48I mean there's something that you
26:49 --> 26:51feel is not quite right either.
26:51 --> 26:53You just feel like the Doctor isn't
26:53 --> 26:56listening to you or might not have
26:56 --> 26:58the expertise that you're looking for.
26:59 --> 27:01Do you feel any trepidation in kind
27:01 --> 27:04of seeking another opinion and
27:04 --> 27:05how do you do that?
27:05 --> 27:07And what advice do you have for other
27:07 --> 27:09patients who might be in the same situation?
27:10 --> 27:12I would say yes, you definitely feel
27:12 --> 27:15intimidated because you want you don't
27:15 --> 27:17want to hurt anyone's feelings even
27:17 --> 27:19though you're hurting yourself by
27:19 --> 27:21not being honest about what you need.
27:21 --> 27:23And so what I always tell
27:23 --> 27:25patients and I tell myself,
27:25 --> 27:28is you gotta speak life into
27:28 --> 27:30any situation that you have.
27:30 --> 27:32You have to tell people and
27:32 --> 27:34show people how to treat you.
27:34 --> 27:37So if it's something happening in your life,
27:37 --> 27:40you have to be the one to say,
27:40 --> 27:42this isn't working for me
27:42 --> 27:44and it may be hard at times,
27:44 --> 27:45and so you actually you take
27:45 --> 27:47a moment even if you don't say
27:47 --> 27:48it in that exact appointment,
27:49 --> 27:51you know there's different outlets
27:51 --> 27:53to where you can let that doctor
27:53 --> 27:54know you can call the office.
27:54 --> 27:56You can talk to the nurse, you can
27:56 --> 27:58talk to so many different avenues.
27:58 --> 27:59If you're not comfortable with
27:59 --> 28:01sitting with the doctor face to face
28:01 --> 28:03to say that you would
28:03 --> 28:04like a second opinion,
28:04 --> 28:06but another point that's
28:06 --> 28:08helpful if the doctors offer that.
28:08 --> 28:11If they're telling you, you have this illness,
28:14 --> 28:15and you're welcome to
28:15 --> 28:16do a second opinion.
28:16 --> 28:19I can actually refer some physicians to you,
28:19 --> 28:21one or two at least.
28:21 --> 28:23So if the Doctor is doing that,
28:23 --> 28:24that would even make me
28:24 --> 28:25feel even more comfortable,
28:25 --> 28:27even if I had to use that doctor if
28:27 --> 28:29I decide to use that doctor overall
28:29 --> 28:32and it just shows that the doctors
28:32 --> 28:34actually respecting my wishes and
28:34 --> 28:36respecting me being apart of my care plan.
28:36 --> 28:38And so it looks so many different
28:38 --> 28:40ways that this can be handled.
28:40 --> 28:42And I know for myself, no,
28:42 --> 28:43I never asked for a second opinion
28:43 --> 28:45in the beginning.
28:45 --> 28:46I was so nervous to do that
28:46 --> 28:48because I really didn't understand.
28:48 --> 28:50Like I said, what I actually needed.
28:50 --> 28:52And so for patients who don't
28:52 --> 28:53understand
28:53 --> 28:54coming into their appointments,
28:54 --> 28:56feeling the same way, you're just frustrated.
28:56 --> 28:58And now the doctor that you thought
28:58 --> 29:00was gonna be able to help you,
29:00 --> 29:02they are not able to help you.
29:02 --> 29:03So now what do
29:03 --> 29:05you do? You ask for a second opinion,
29:05 --> 29:07Shantana Hazel is an author,
29:07 --> 29:08healthcare advocate and founder
29:08 --> 29:10of the Sister Girl Foundation.
29:10 --> 29:11If you have questions,
29:11 --> 29:12the address is canceranswers@yale.edu
29:13 --> 29:15And past editions of the program
29:15 --> 29:17are available in audio and written
29:17 --> 29:18form at Yalecancercenter.org.
29:18 --> 29:20We hope you'll join us next
29:20 --> 29:23week to learn more about the
29:23 --> 29:25fight against cancer here on
29:25 --> 29:26Connecticut public radio.

Information

Building a Relationship with your Physician: a patient’s perspective with guest Shantana May-Hazel August 9, 2020 Yale Cancer Center visit: http://www.yalecancercenter.org email: canceranswers@yale.edu call: 203-785-4095