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March 15, 2025 • 20 mins
Karen shares a powerful listener story about self-advocacy in healthcare and how trusting your instincts can be lifesaving. After experiencing persistent symptoms that were initially dismissed by a doctor, this listener took charge of her health, sought a second opinion, and ultimately discovered a serious diagnosis.

Visit our website itchyandbitchy.com to read blog posts on the many topics we have covered on the show.
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Episode Transcript

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Speaker 1 (00:00):
The content of this podcast is provided for general informational
purposes only and is not intended as nor should it
be considered a substitute for professional medical advice. Hello everyone,

(00:22):
This is Karen Nichol, family nurse practitioner, and this is
Itchy and Bitchy, a podcasts that provides answers to your
many unanswered health questions. This is a quick reminder about
my course called the Perimenopause Answer. If you're going through
this phase in life called perimenopause, or if you don't
know if you're in perimenopause, I would love to have
the opportunity to talk to you about the course and

(00:44):
see if it's the right fit for you. There is
a link on our website itchymbitchy dot com and our
Facebook page imb Podcast where you can schedule an appointment
for a zoom call with me. This is a zoom
call with me, so when you make an appointment, I
will be sitting at my desk waiting for you to
join the one on one zoom call. If you listen

(01:05):
until the very end of every episode, which I hope
you do, I remind you that your health is in
your hands, and I share that on every episode because
I strongly believe that we all have to advocate for
ourselves when it comes to our healthcare. Today, I want

(01:26):
to share a listener's story about how she advocated for
herself and by doing so, her life was saved. In
twenty twenty three, our listener began having back pain, which
she assumed was related to her job as a farmer,
which is very physical. She figured that she had tweaked

(01:48):
her back muscles. She first tried walking it out, but
that provided no relief. She added cold packs and heat
and over the counter pain medication, with no improvement. Her
work productivity declined by half because of her pain, even
though she had added a back brace and a topical

(02:08):
inset on top of what she was already doing. As
the back pain continued and worsened, other symptoms began to appear,
including constipation and inability to empty her bladder completely. She
became exhausted, but thought it was because she hadn't been
sleeping well and she had a busy life. At this point,
she made an appointment with her family practice doctor and

(02:31):
he diagnosed her with a urinary tract infection based on
her urinary symptoms only there was no urinalysis or exam
done during her ten minute appointment. He gave her a
three day course of antibiotics and prescribed nepoxyen, which is
an inset for her back pain, because he felt she

(02:52):
had a back muscle strain. He told her to keep
up her walking regimen, which she was struggling to do,
and to lose some weight around her belly. Although she
did not see her family practice doc on a regular basis,
she did keep up with regular mammograms every two years
and pap smears every three years, which were always normal,

(03:16):
although beginning in the nineteen nineties, the pap smear was
collected at her exam but no pelvic exam was done
at her gyn visits. She was due for a pap
smear in twenty twenty one, but due to the COVID
nineteen pandemic, the GYN office was on lockdown and her
pap smear appointment was canceled and never rescheduled. By twenty

(03:40):
twenty four, she began to have pelvic pain and had
significant difficulty riding her horse around the farm. She also
noticed that her lower abdomen seemed to be getting bigger,
yet she was losing weight. She could only wear stretchy
clothes to accommodate her growing belly. Her exhaustion also were

(04:00):
She had been listening to Itchy and Bitchy previously called
Sweaty and Pisted as many of you know most of
you know, uh, and she'd been listening for quite a while,
and she re listened to one that I did with
comedian Leanne Morgan during our Ovarian cancer Awareness month. Our
listener didn't connect the ovarian cancer dots at that point,

(04:23):
but she remembered hearing on the podcast that if you
are feeling dismissed but you know something is wrong, you
should keep pushing for an evaluation of the problem by
your provider or get a second opinion. She didn't want
to go back to her family practice doctor because she
was concerned he would think she was a hypochondriac. Unfortunately,

(04:46):
this is a common feeling among women. She also grew
up with the belief that one shouldn't question doctors, but
she felt she should take to heart the encouragement given
on this podcast to self advocate and seek a second opinion.
She decided she would get an appointment with a nurse

(05:06):
practitioner like me, and she found an NP about an
hour away from her town, and it took about five
weeks for her to get in to see her. By then,
our listener was bloated and her urinary and constipation symptoms
were worsening. The NP took a thorough history and found

(05:28):
multiple masses on examination of her abdomen. A pelvic exam
was also performed, which was very difficult and painful, but
absolutely appropriate and necessary considering our listener's history and symptoms.
The NP immediately arranged for a pelvic ultrasound, another good move,

(05:49):
and ordered some blood work. With great relief, our listener
finally had her symptoms taken seriously and someone was acting
quickly to address the problem that feels so good. Within
a few days, she had an appointment with a guynecologist
who was also very thorough. The gyn reviewed the ultrasound

(06:11):
results and said it was definitely advanced ovarian cancer unfortunately,
and a biopsy was done which confirmed both high and
low grade ovarian cancer, the combination of which is relatively rare.
She was quickly referred to a noncologist and it was
decided to immediately proceed with surgery. Unfortunately, at this point,

(06:35):
an MRI revealed metastases to the spine, neck, and pelvis.
She has had additional surgeries and continues to have chemotherapy,
and as you can imagine, she has had significant side
effects from the treatment, but she is still with us
and she feels she has much to be grateful for. Also,

(06:57):
a very skilled group of oncologists and surgeons from Johns
Hopkins have joined her team and are providing excellent advanced care.
How to advocate for yourself in the healthcare system is
up next. After this quick break, I'll be right back.

(07:31):
Welcome back. So how do we advocate for our own health? Well,
let's start by reviewing what it means to be a
health advocate, either for yourself or someone else. Health advocates
take control of their health care experience. You and your
doctors make decisions as a team. You speak up with

(07:56):
your questions, needs, concerns, and preferences. In a twenty seventeen study,
even though some women saw themselves as self advocates, they
struggled to locate the health information they needed and they
hesitated to upset their relationship with their health care providers.

(08:16):
The definition of self advocacy varies from organization to organization,
and here are some of the many definitions. The American
Society of Clinical Oncology defines it as quote a positive
experience that often gives a person a sense of control
in a time of uncertainty. Another definition, quote key to

(08:40):
long term survival, including being willing to question experts if
you don't understand something, is the definition used by Cure Magazine.
An example of that is to be active in treatment
decisions and knowing all options and seeking second options. National

(09:00):
Coalition for Survivorship provides a more detailed definition. They state
that self advocacy is quote a way of taking charge
in an otherwise portentous environment of diagnostic tests, surgery, radiation, chemotherapy,
and doctor's offices. From arming oneself with good information about

(09:23):
their diagnosis, to seeking second opinions, to locating resources for
identifying and obtaining support, to knowing how to ask the
right questions. People with cancer can become self efficacious, and
this doesn't apply just to cancer. This is true for
any health concern. I have a friend who was diagnosed

(09:47):
with anal cancer. She underwent standard treatment for this form
of cancer, and on an MRI that was done following treatment,
it showed complete eradication of the large tumor all also
was shown two very small, under one centimeter which is
about a third of an inch, reactive lymph nodes in

(10:08):
the pelvis. So reactive lymph nodes are sort of angry
lymph nodes and they were found in the pelvis. The
oncologists recommended starting two forms of chemotherapy that would have
significant side effects, including numbness in her fingers and hands.
She's a professional musician who needs healthy hands, so of

(10:29):
course this side effect really concerned her. I urged her
to see another oncologist to get a second opinion before
starting this regimen. She saw an oncologist at a facility
I recommended to her, and that oncologist said the appearance
of those small angry lymph nodes are consistent or were
consistent with nodes that are irritated from the radiation she

(10:53):
had during her initial treatment. He recommended a recheck MRI
in six weeks, and that MRI showed complete resolution of
the angry lymph nodes and no other evidence of continued
presence of the cancer. So instead of undergoing life altering chemotherapy,

(11:14):
she will have regular MRI screening to ensure that there
are no active lesions. Many women would have difficulty telling
their oncologists that they want to see another oncologists for
a second opinion. But my brave friend had that conversation
in a very straightforward way and the change in providers

(11:35):
paid off. Here's how to become your own advocate. Take
some time to think about your health goals. What does
it mean for you to have good quality of life
or what matters most to you when it comes to
your health. Your relationship with your provider should be open, honest,
and trusting. You and your providers are partners. If you

(12:00):
are on the same team, they should listen to your
concerns and answer your questions so you feel comfortable. The
relationship you have with your healthcare professional should be one
in which you feel you can talk about anything with them,
even sensitive subjects like sex or the price of tests
or treatments. The person providing your healthcare should make sure

(12:24):
that you understand and feel comfortable with your health decisions.
It's very important to respect each other's time. Also, show
up on time for your appointments. Let your practitioner know
if you feel rushed during your exams. If you don't
have time to ask all your questions, schedule another visit

(12:45):
so you can talk some more as your own health advocate. Again,
you are part of the team, so doing your part
is important too. Take your medications as prescribed, and be
honest with your healthcare professional if you have trouble taking
the medications that have been prescribed, so that other options

(13:05):
can be explored. Follow health recommendations about diet, exercise, rest, smoking,
and alcohol use. At your appointments, it's important to provide complete,
honest information about your health. If needed, you can keep
a folder or a notebook that has details including your symptoms,
your current prescriptions, your past medical records, or lab results

(13:30):
such as xtrays, personal and family medical history, drug allergies,
over the counter medicines, herbs, vitamins, or supplements that you take.
Let your doctor know if you've noticed any changes in
your health since your last visit, like your weight, your appetite,
your energy levels, bathroom habits, or ability to sleep. Don't

(13:53):
assume anything you've experienced is unimportant. I'm going to say
that again. Don't assume anything you've experienced is unimportant. Another
important piece is to do your homework before and after
each appointment. Researcher symptoms, conditions, treatment options, and tests online

(14:16):
or at your local library. Doctor. Google is not recommended.
Some very helpful free resources for reliable medical information include
WebMD dot com and Mayo clinic dot com. Using resources
like this can help you understand your condition, your treatments,

(14:37):
and any terms you might hear during your appointments. Read
up on any new medications that have been prescribed for you,
and make sure you have been given detailed directions on
how to take the med If you are given a
new medication, ask why you are taking it, the possible
side effects, how and when to take it, and what

(14:57):
to do if you misadose or can't take it due
to side effects. Ask if insurance coverage might be a
problem and if the med is expensive. If your provider
can't answer these questions, ask your pharmacist, who is able
to determine coverage and cost of medications based on your
insurance or cash costs. If you don't have insurance, your

(15:22):
pharmacists can also tell you if there are less expensive
medication options, like another drug from the same family that
is covered by your insurance or is in generic form.
Of course, you can also check your medication formulary to
see if the new medication is an approved med and
what tear the medication is on which determines your copay.

(15:46):
If you don't understand what a condition is, what the
treatment does, or how you should take a med ask
for clear written instructions from the provider. If you don't
understand your diagnosis, your treatment options, or anything that has
been recommended to you, ask the practitioner or a nurse

(16:07):
to explain it in a clear, simple way until you
feel comfortable. During office visits, make sure the following things
are explained to you. All the treatment options for your condition,
why you may need any tests, treatments or procedures, risks,
side effects and costs of any tests, treatment or procedures,

(16:31):
success rates or benefits of potential treatments, and any medical
terms or suggestions you don't understand. This part of self
advocacy can be very difficult for many people, but it's
important to regularly revisit your advanced care planning. By doing so,

(16:55):
you ensure that your wishes reflect any changes in your
head that may have happened since the last draft of
the document. You can change your preferences at any time,
and if you haven't done advanced care planning, I strongly
urge you to do so as I mentioned it's not

(17:15):
always easy to think about your preferences and advance care
planning in case you get seriously ill, But it's more
upsetting to think about the care you might or might
not receive because you didn't make your wishes known. Remember,
planning brings you and your family peace of mind and

(17:38):
is part of getting appropriate care as you age. Quoting
our listener I spoke about earlier, she says, quote, I
think we do know when something is not right, and
sometimes we need a little push to keep looking for answers.
I will be forever grateful to Karen for her podcast,

(18:02):
for her wisdom, insight, expertise, knowledge and friendship during this time.
I am so glad I listened to her and sought
out further help. She saved my life. I think that
statement is way too generous, but I am so glad
that the podcast provided the support for our listener to

(18:22):
seek help, which she so desperately needed it. As she
has said to me, you think you may have many
problems in life, but when you lose your health, you
really only have one problem. So protect your health by
being your own best advocate. I hope her story will

(18:45):
help you move forward and achieve self advocacy. Thank you
to our listener who was willing to share her story
with me and now with you. It is very selfless
and brave of her to share this story, and I
thank her for doing so. Thank all of you for listening.

(19:06):
Wherever you listen to this podcast, please leave a review
and rate the podcast. As I've said before, your reviews
and ratings really really do matter. Also, make sure you
follow the show so that it will be automatically downloaded.
That matters due if you don't tend to listen to
the end of the episode, today might be the day

(19:27):
to do so. I encourage you to visit our Facebook
page IMB Podcasts, where you can give us a like
and leave comments or questions for me. Our website is
itchyandbitchy dot com, where there are blogs with some of
our subjects available for you to read. On the Facebook
page and website, we have the information about how to
schedule an appointment with me so we can chat about

(19:48):
how my perimenopause Chorus can help you if you're going
through this phase in life. As always, thank you. Thank
you to Forrest Winsel, our producer and composer of our
theme music and the person who does all the stuff
you never see to make this podcast possible. Thank you.
Forest Forest has started his second to for semesters to
earn a master's degree in music composition at the prestigious

(20:11):
Peabody Music Conservatory. If you want to listen to some
of his music other than the Itchy and Bitchy theme song,
which I adore, you can go to his website forestwindsol
dot com, f O R R E S t w
E N t z e l dot com and remember,
your health is in your hands.
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