All Episodes

March 29, 2025 18 mins
Karen shares how a friend's breast cancer diagnosis became a powerful example of self-advocacy in action. From discovering she didn’t need chemotherapy after requesting additional testing, to researching scalp cooling treatments and skin protection during radiation, this story highlights how knowledge and persistence can lead to better care. 

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

Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
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 Nicol, family nurse practitioner, and this is
Itchy and Bitchy, a podcast that provides answers to your
many unanswered health questions. This is a little reminder about
my course called the Perimenopause Answer. If you are going
through the phase of life called perimenopause, I would love
to have the opportunity to talk to you about the
course to see if it's the right fit for you.

(00:43):
There is a link on our website itchyanbitchi dot com
and our Facebook page I and B Podcast where you
can schedule an appointment for a zoom call with me.
This is a zoom call with me. When you make
an appointment, I will be sitting at my desk waiting
for you to join the one one on zoom call.
I had lunch with a friend who was recently diagnosed

(01:04):
with breast cancer. Some of her pathology results were conflicting,
so she was originally told that she would need double
chemotherapy regimen that is notorious for complete loss of scalp hair.
Of course, this is a very overwhelming and upsetting thing
to face. Even though information was coming at her a

(01:25):
mile a minute, she was able to research and make
plans for a treatment called scalp cooling otherwise known as
cold capping, to help prevent hair loss during chemotherapy. She
found someone who provides the scalp cooling and had it
all set up to start when her chemotherapy was initiated.
I'll share details about scalp cooling in a minute. In

(01:48):
the last episode, I talked about being your own advocate
when it comes to your healthcare. Again. As my friend
was still reeling from the diagnosis, from learning that care
chemotherapy was recommended, and from all of the other information
and appointments that were filling her head and filling her days,
she managed to begin researching what additional testing could be

(02:12):
done to better define what type of breast cancer she had,
since that result would determine whether or not she needed chemotherapy.
Her research led her to something called a mammo print
test mammo print that would help confirm her breast cancer status, and,
in an excellent example of self advocacy, she asked her

(02:36):
oncologist to have the mammo print done. Her oncologists agreed
to order the test, and it revealed that she would
get practically no benefit from being treated with chemotherapy, so
treatment with chemotherapy was called off, which lifted a huge

(02:56):
weight off her heart and mind. Health advocacy paid off
in a big way, so she didn't need the scalp
cooling after all, but she learned a lot in the process.
Scalp cooling is a treatment regimen that lowers the temperature
of the scalp with a scalp cooling device, and that

(03:17):
device can help reduce hair loss caused by chemotherapy. The
level of awareness and use of this option among oncologists
is not what you would hope it to be. A
twenty twenty national survey to better understand the positions that
oncologists have on the use of scalp cooling revealed that

(03:37):
one point nine percent of oncologists survey had no knowledge
of scalp cooling, forty five percent were aware of scalp
cooling therapy but were not very familiar with it, fifty
three percent were very familiar with it, and sixty percent
of the providers reported being in favor of scalp cooling

(03:58):
always or most of the time. That means forty percent
we're not in favor of it. Only twenty six percent
of oncologists initiated discussions always or most of the time
about this product. The Rapunzel Project is a non profit
organization that provides information on cold capping resources that are available.

(04:21):
It is also the organization that conducted the twenty twenty
survey I just referenced. They have been trying to increase
awareness of this treatment option because they believe and I
totally agree with them that quote patients can't make a
choice if they don't know they have a choice. So

(04:42):
what exactly is scalp cooling. Well, there are two main
types of scalp cooling devices. One is called automated and
the other is manual. You might hear people call all
of these devices scalp cooling caps or cold caps, but
the two types of devices work in different ways. It's

(05:03):
important to understand the differences before you decide to use one.
Cooling caps or cold caps are automated scalp cooling systems
that are regulated by the FDA. A special cap is
connected to an automated device that circulates a liquid or
gel cooled to a specific temperature. Automated cold caps are

(05:27):
only approved for chemo induced hair loss related to solid
tumor cancers, not blood cancers. There are currently three brands
of automated scalp cooling systems that are FDA approved for
preventing chemo induced hair loss, and those are Dignacap, Pacsman,

(05:47):
and Emma AMMA. On the Rapunzel Project's website, the locations
that offer automated scalp cooling systems are listed by states.
There is one location in Knoxville that I found on
that website. There's one location in Knoxville and they have
the paspin device. Info on the manual scalp cooling option

(06:10):
and a product to protect the skin during radiation treatments
are up after this quick break welcome back. Manual scalp

(06:36):
cooling devices are frozen gel caps and are not regulated
by the FDA. This type of device doesn't use an
automated cooling system. Instead, it is manually cooled in a
freezer or in a cooler with dry ice. The temperature
for the frozen gel caps must be lower compared to

(06:57):
the automated cold cap systems. Because as the cap starts
to warm as soon as you put it on your head.
You also need to switch to a new frozen cap
every twenty to thirty minutes. Compared to automated scalp cooling systems,
frozen gel caps are less expensive, but since they aren't

(07:18):
FDA approved, they are less likely to be covered or
reimbursed by insurance. So how does scalp cooling prevent hair loss?
Chemo therapy travels to all of the tissues through the bloodstream,
and when cold is applied to the scalp, it temporarily
decreases blood flow to that area. This reduces the amount

(07:42):
of chemo that gets to your hair follicle cells. Protecting
hair follicle cells from being damaged or killed by chemo
can prevent or reduce scalp hair loss. Scalp cooling does
not prevent hair loss or thinning caused by immuno, their therapy,
and targeted drug therapy. This is because these treatments don't

(08:04):
work in the same way as chemo. However, chemo is
more likely to cause hair loss compared to most immunotherapy
and targeted drug therapies. Cold caps and other scalp cooling
devices aren't recommended for everyone. It depends on several factors,
including the type of cancer you have. Scalp cooling is

(08:26):
not recommended for people who have central nervous system cancer,
are getting chemo to prepare for a bone marrow transplant,
had or will have radiation therapy to the skull. Also,
if you have leukemia, lymphoma, or multiple myeloma. These cancers

(08:47):
travel through the blood and lymph systems, so we don't
want to reduce the amount of chemo going to the
head and scalp because of the possibility of cancer cells
developing in these areas. People who have cold a gluteninm disease,
which is a rare autoimmune disorder that causes the body's
immune system to attack red blood cells when exposed to

(09:11):
cold temperatures. Also cryoglobulinemia, a rare condition that causes blood
to clump when exposed to cold tempts, or post traumatic
cold dystrophe, a condition in which pain is induced by cold.
If you have one of these disorders, you are not
a good candidate or scalp cooling therapy. And scalp cooling

(09:35):
might not be as effective for people with severe liver
problems because scalp cooling affects how long a medication stays
in your system. Also, since it has not been well
studied or approved for those under the age of eighteen
years old, scalp cooling is also not recommended for children.

(09:55):
Each person responds differently to scalp cooling these these devices
work better for certain types or doses of chemo, and
some research also suggests that scalp cooling to prevent hair
loss might not work as well for people with thicker
hair layer. That would not be my problem. Thicker hair layer,

(10:16):
so that compared to people with a thinner layer of hair,
and this could be because thicker hair insulates the scalp,
preventing it from cooling down enough. Research also suggests that
the fit of the cooling cap is very important. Cooling
caps that aren't fitted tightly have been linked with more

(10:37):
hair loss. Increased hair loss often happens in patches where
the caps contact with a scalp is poor. Scalp cooling
side effects are rare and usually tolerable. The most common
side effects reported include headaches, nausea, dry skin, claustrophobia, and
general discomfort related to feeling cold. Cooling caps work by

(11:00):
reducing the amount of chemo that gets to the hair
follicle cells on the scalp, so some people want to
know if this increases the risk that their cancer could
spread to the skin of their scalp. So far, studies
looking at this have mostly been in people with breast cancer,
but in general the risk of scalp metastases is already

(11:24):
really low. No studies have shown that scalp cooling increases
your risk for developing scalp mets anymore than if you
don't use scalp cooling. Cost concerns of scalp cooling is
the most common reason people don't ask about it or
use it. Medicare started covering scalp cooling in twenty twenty two,

(11:46):
with a one time benefit of one eighth and fifty dollars.
This applies to automated scalp cooling systems which are FDA approved.
As I mentioned before, Medicare might also so cover certain
supplies needed for scalp cooling, such as extra caps. Many
insurance companies now also cover or reimburse for these systems.

(12:11):
New York State is the first state in the nation
to pass a bill that requires insurers to pay for
scalp cooling go New York. Manual cold caps are not
regulated or FDA approved, so they may or may not
be covered by insurance. Medicare does not cover manual cold caps.

(12:33):
Hair to Stay is a non profit organization that helps
low income families pay for scalp cooling treatment. So if
your insurance doesn't cover it and you are unable to
pay for scalp cooling out of pocket, there are organizations
like hair to Stay to help you cover the costs.
There are also many state and local organizations that offer

(12:56):
financial assistance. You can search for free and reduce used
cost resources in your area through a website called find
help dot org find help dot org. If you are
considering using either form of scalp cooling, it's important to
discuss the pros and cons with your cancer care team.

(13:18):
You might also want to ask if your treatment center
has experience using cooling caps and how successful they've been. Okay,
I have another, yet another example of how my friend
advocated for herself. Once she was given the diagnosis of
breast cancer. She is going to start radiation therapy and
she researched how she could protect her skin from radiation

(13:40):
damage and in the process of research, she found a
product called mepitel film. Mepitel film is an ultra thin,
soft and comfortable transparent film dressing that provides gentle, breathable
protection for fragile and sensitive skin. It minimizes the risk

(14:01):
of skin breakdown. Clinical studies have shown that mepateel film
significantly reduces radiotherapy induced skin damage after radiotherapy treatment of
breast cancer specifically, it is very possible that your radiation
oncologists and or radiation department will not know about this

(14:23):
film or seen it used before, so it would be
best to discuss the use of mepitel film with your
radiation oncologists prior to the start of your treatment. The
mepateel studies showed that the use of this film reduced
the risk of skin side effects in people receiving radiation
therapy for breast cancer and they were less likely to

(14:45):
need topical antibiotics. The study results are on breast cancer
dot org website. I recommend printing that out and bringing
it to your appointment with your radiation oncologists. This information
can and help you advocate for the use of mepitel
if it is appropriate for you. Mepitel contains a silicone product,

(15:08):
so you should not use this product if you have
a silicone allergy. It is recommended that you apply the
film the night before a radiation treatment session, and then
prior to applying, you should have clean, dry skin and
you cannot apply deodorants or lotions or creams to the skin.
Once applied, you will keep the film in place on

(15:30):
your skin throughout the radiation treatment process and for two
weeks following completion of radiation. The edges that become frayed
or curled over that time period can be patched with
smaller pieces of the film. My understanding is that the
only place you can purchase this in the US is

(15:50):
on the Mayo Clinic store website, and one ten x
twenty five centimeter film on their site costs sixteen dollars
and ninety five since they can also be purchased on
a Canadian medical supply website, and the one that I
checked out sold a pack of ten of the ten

(16:10):
by twenty five centimeter films for fifty four dollars, a
significant savings compared to the Mayo Clinic pricing, and since
several sheets are required to cover the area that will
undergo radiation treatment. It really can save you some bucks.
I wanted to share the information about scalp cooling and

(16:31):
mepitel so that if you or someone you know receives
a diagnosis of breast cancer, you will be aware of
these options to help protect your skin and help keep
your hair. Thank you to my friend who was so
kind to share her health journey with me and she
hopes that other people can be helped by the knowledge

(16:54):
she has gained on this journey. I congratulate her on
actively participating in her care so she can have the
best outcome possible. Thank you all for listening. Wherever you
listen to this podcast, please leave a review and rate
the podcast. Your reviews and ratings do matter. Also make

(17:16):
sure you follow the show so that it will be
automatically downloaded. That also matters. I encourage you to visit
our Facebook page imb Podcast, where you can give us
a like and leave comments or questions for me. Our
website is itchyandobitchi dot com, where there are blogs with
some of our subjects available for you to read. On
the Facebook page and the website, we have the information

(17:40):
about how to schedule an appointment with me so we
can chat about how my paramid A Pause course can
help you if you're going through this phase in life.
As always, thanks to Forrest Winsel, our producer and composer
of our theme music and the person who does all
the behind the scenes work to make this podcast possible.
Thank you for us. We'll be traveling to Baltimore soon

(18:02):
to hear an orchestral piece he's composed. It will be
performed by the Peabody Symphony. We're super excited. If you
want to listen to more of his music, you can
go to Forrestwinsle dot com, f O R R E
S t w E N t z e l dot com.
And always remember that your health is in your hands.
Advertise With Us

Popular Podcasts

On Purpose with Jay Shetty

On Purpose with Jay Shetty

I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!

Crime Junkie

Crime Junkie

Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.

Cardiac Cowboys

Cardiac Cowboys

The heart was always off-limits to surgeons. Cutting into it spelled instant death for the patient. That is, until a ragtag group of doctors scattered across the Midwest and Texas decided to throw out the rule book. Working in makeshift laboratories and home garages, using medical devices made from scavenged machine parts and beer tubes, these men and women invented the field of open heart surgery. Odds are, someone you know is alive because of them. So why has history left them behind? Presented by Chris Pine, CARDIAC COWBOYS tells the gripping true story behind the birth of heart surgery, and the young, Greatest Generation doctors who made it happen. For years, they competed and feuded, racing to be the first, the best, and the most prolific. Some appeared on the cover of Time Magazine, operated on kings and advised presidents. Others ended up disgraced, penniless, and convicted of felonies. Together, they ignited a revolution in medicine, and changed the world.

Music, radio and podcasts, all free. Listen online or download the iHeart App.

Connect

© 2025 iHeartMedia, Inc.