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Kelly Anne Branco Show Notes
A sickly child
0:04:50
Kelly Anne was born in Toronto, St Michael's hospital - grew up in Toroto - mother came from Azores - Dad came after his military service - a lot of family on her childhood street - working class neighbourhood - an awesome place to grow up - late 80s moved to Mississauga at age 10
0:06:30
Mississauga is a suburb just west of Toronto - nearly 1 million population now, but like small town back then - Mom did office work, Dad a construction foreman until his traumatic brain injury (TBI) - this made him more difficult to live with - and he couldn't work
0:08:30
Kelly Anne was a sickly child, always problems with her instestines - but her symptoms dismissed and minimized - but in her 20s, Kelly Anne started to have anxiety and panic attacks associated with stomack pain - terrified to leave the house for fear of being sick
0:09:50
Took a while to get her GP on board - who dismissed her symptoms as psychiatric - and sent Kelly Anne to a gastroenterologist - but had to fight to get referral - took 6 months to get appointment with gastro, but within 5 minutes had diagnosed Kelly Anne with celiac disease - probably since a child
0:11:15
Kelly Anne goes back to her GP and says I told you so - the GP apologizes - is willing to learn is what Kelly Anne likes about her - this is just a few years before her ovarian cancer symptoms emerged
Medical errors start in early life
0:13:15
Kelly Anne describes celiac diagnosis and treatment - gastroscopy found very poor absorption of vitamins and minerals - within a year intestines started to heal
0:14:45
January 2012 Kelly Anne stopped getting her period, it was odd - thought maybe it just stress or her birth control pills, so didn't worry about it - but after months passed she started to worry so went to see her GP - sent for ultrasound and they found a mass on right ovary - referred to gynecologist in August 2012
0:17:10
Stressful waiting for appointments, not knowing what's going on with her body - unknown is the worse part - wondering about having kids
0:18:45
Gynecologist asks Kelly Anne about other symptoms, but she has none - doctor asks why she's worried and to stop complaining, lots of women would like not to have their period - doctor is ending meeting and Kelly Anne asks if the doctor is going to examine her - huffily the doctor acquiesces and Kelly Anne has a 'quite rough' examination - dismisses ovarian mass as probably just a cyst
0:20:15
Doctor did not so usual cancer checks (CA125 test, biopsy) - just sent Kelly Anne away with new birth control perscription - she felt foolish, an idiot, scared, questioning self - the new birth control pill re-started her period and that reinforced the self-doubt and everything is fine with her body - but later, found out her body was not fine
0:23:15
January 2013 her period stopped again - had surgery to have her gall bladder out, so blamed the stress of surgery - had put on a lot of weight, became pre-diabetic, had seen what diabetes had done to relatives, went on strict diet, causing gall stones - pain in hte middle of the night brought Kelly Anne to ER - gets ultrasound, we'll call you with results, but they didn't call her with the results - she has another gall bladder attack
Gallstone surgery
0:25:30
Kelly Anne passes gall bladder stone - 'most horrendous' experience - finds out that she has lots of gall stones and needs surgery - took 2 months to get surgery - living off baby food oatmeal for 2 months
0:26:00
What they didn't know was that Kelly Anne had a tumour and a weakened immune system heading into the gall bladder surgery - infection post surgery
0:28:05
Back to family doctor - another ultrasound and MRI showed the 'mass' had doubled in size - Kelly Anne said she did not want to go back to that same gynecologist - Sept 2013 sees new gynecologist - but got her period again in July, but it didn't stop, getting increasingly heavy flow - pain shooting down her leg, anxiety, bloated - started carrying her 'diaper bag' for such heavy bleeding - new gyno runs fertility clinic - did ultrasounds in her office and reviewed by gyno - great bedside manner
0:32:00
Gyno says could be cyst or fibroid - recommends laproscopy surgery to remove cyst or fibroid - no discussion of running blood work to rule out cancer - for the next months, symptoms worsen - by January 2014 Kelly Anne has surgery with gyno - finds out that the mass had gotten so big, it had consumed her ovary
0:34:10
gyno couldn't remove the mass via laproscopy - so tries to 'schuck' the mass to seperate the mass from the ovary, but couldn't so decided to remove the whole ovary - she morcellated (minced) the mass and ovary - chopped it up and pulled it out - the worse thing you can do with cancer because the cancer cells go everywhere
0:36:50
After surgery, gyno says Kelly Anne will recover in a few days, they'll send the mass to pathology, and she'll see her in 6 weeks - Kelly Anne describes the surgery prep and the gyno's empathy and support and great bedside manner - had a great recovery, felt good
Granulosa Cell Tumor
0:39:30
Back to the gyno for 6 week follow up and Kelly Anne knew that the pathology report would be back - gyno gave a summary of the report, but did not give the pathologists comments or recommendations - gyno says Kelly Anne has granulosa cell tumor but its benign, don't worry, but come back in 6 months
0:41:30
"I trusted her" - periods normalized, feeling good - felt like normal healthy human being - returned twice to gyno for ultrasounds - gyno says come back in 8 months, June 2015 - but spring 2015 new mild symptoms emerge
0:44:15
Heartburn, bloating but just chocked it up to stress - but still getting period so thought 'its nothing' - but in March called to book June appointment, but got appointment beginning of May - symptoms continued0:46:20Has appointment in mid May for pelvic ultrasound in gyno's office - gyno says there is something big on your ovary and need to get it out - also books Kelly Anne for MRI in mid July
0:47:25
Kelly Anne goes for pelvic MRI - but after, the MRI technician wouldn't look her in the eye - but says, robotically 'you're perfectly fine' - Kelly Anne could tell she was lying - there's something wrong - she actually got the MRI in late May, so had been prioritized - gyno calls Kelly Anne and askd her to come into the office the same day.
0:50:10
Kelly Anne goes to gyno Monday June 1st who says there is a lot of stuff there (ovary) and going to send you to cancer pre-op consult - gyno says just a precaution as her tumour is benign and denies Kelly Anne has cancer and dismisses her concern - Kelly Anne tries to down play her fears, but couldn't imagine it was as bad as it was
0:52:30
On Friday morning, while at work, Kelly Anne gets a call from the cancer centre saying she has to come in that day - Kelly Anne realizes something is very wrong - but is told she has to go to another hospital to pick up her MRI results for the cancer centre
Its not benign, you've got cancer
0:54:20
Borrows Mom's car to drive to get MRI results at one hospital before driving across city to cancer centre - the admin behaviour and facial expressions showed concern, made Kelly Anne feel weird - sitting in waiting room with chemo patients, feeling out of place, didn't click what was going to happen
0:57:30
Onclogist says 'it looks like you have a recurrence of your cancer that you had last year' - this is the first time any one said she had cancer - shocked, all Kelly Anne could say was 'I have cancer?' - the oncologist says 'yes, you have cancer, you had cancer before' - Kelly Anne tells him she's not been told she had concer before, that the tumour was benigh - the oncologist gets frustrated, 'its not benign, you've got cancer'
0:58:45
Kelly Anne asks how bad the cancer is - the oncologist says it is everywhere on her uterus and left ovary that she'll have to have CT, biopsy, surgery, hysterectomy, chemotherapy, blood work, urine example - left with more appointments and to return on June 19th
1:00:00
At that appointment Kelly Anne had Mom and her boyfriend with her - oncologist says cancer is everywhere in her uterus, tubes, ovaries, colon, bowel - we need take out uterus and cervix and appendix - will be a rough surgery, then chemo
1:01:00
The oncologist suggests Kelly Anne see a fertility doctor to harvest eggs before surgery - Kelly Anne is offended and gets angry - she's already decided that if the choice is to delay surgery for a fertility appointment, her life is more important, so not delaying surgery - but oncologist is insistent and gets Kelly Anne into fertility clinic next day
1:03:10
Fertility clinic examines and says there is nothing they can do because of so much cancer around her ovary
1:04:00
Kelly Anne has surgery end of June - hysterecotomy, but save bowel - also removed appendix and other abdominal cancerous tissues - surgery a success, but big scar on her belly - 2 months to recover before starting chemotherapy in late August
Chemotherapy
1:05:50
Because Kelly Anne was stage 3C, fairly advanced, the oncologist wanted to try something different, very aggressive - treated with BEP, that has 3 drugs, including a platinum drug reserved for advanced cases as it is so hard on the body
1:07:00
They wanted 3 cycles of chemo - but also had an infection and open wound - still feeling weak, not sure if healthy enough for chemo, but doctors insist to start - after first cycle of 3 weeks whipped out her white blood cells - developed fever, infection and hospitalized for 5 days with IV antibiotics - realizes they may kill me trying to cure me
1:09:20
Chemo trying to kill cancer cells, but affects other cells - Kelly Anne realizes it is going to get worse before it gets better - Kelly Anne tells her Mom she's not going for second cycle of chemo - but went for her Mother - the worst 3 months of life, felt like she was dying
1:11:40
At the end of a chemo cycle she would have lymphedema, swelling legs, face, nueropathy in hands and feet, losing feeling in arms and legs, intense heart beats, resting on stair case to make it up, vertigo, tinnitus, lots of sleep, loss of hair, pixelated vision - couild only keep oatmeal down due to nausea - it was absolute hell
1:13:20
November 2015 to see oncologist - he says all clear, no evidence of disease - but during chemo, asking herself how this happened - so called gyno office and asked for copies of all her records and went to pick up her records but receptionist pretends she doesn't know Kelly Anne
1:15:00
Kelly Anne subsequenlty learns that when it is cancer, the doctor has to get a second pathology at cancer centre, so she wanted records from the cancer centre too - in reading gyno's notes, the pathologist had said that patient should be referred to onclology for staging and assessment - this is not what gyno told Kelly Anne - but pathologist's January 2014 report said nothing about it being benign.
Facing mortality
1:16:45
But Kelly Anne discovers that 1.5 years of gyno's notes are missing - and when Kelly Anne gets hospital records, they had no notes from prior to her surgery, no 2nd pathology from gyno doctor - Kelly Anne livid, this is not right - but puts it aside as she is so sick from chemo - lots of support for cancer patients, but when done chemo done and given NED label - 'no evidence of disease' - support ends
1:19:45
That's when the weight of diagnosis and loss of health and grieving hit Kelly Anne - a real eye-opener to address your own mortality - wanted desperately for normalcy - took 6 months to focus on recovery and return to work
1:21:00
But in March 2016 at follow up scan, they found more disease - that's when she started to mobilize to learn and connect with people online with granulousis cell tumours to share - met people who had lived with it for 15 - 20 years - learned that if she had treatment when initially diagnosed, she could have a better potential outcome
1:24:00
Learned of hormone therapy to maintain stability - was a sponge aborbing all the research - tranferred to a medical oncologist (vs earlier gyno oncologist) - wanted to try hormone therapy
1:25:30
Kelly Anne discovers 3 types of doctors: those that want to heal people, have empathy, compassion and listen - also science geeks want to heal people, but only want to deal with the person from neck down - the 3rd type is all ego, love the prestige and misdiagnose - but she had a great doctor who was open to try
1:27:00
Did a couple of months of a medication, hormone therapy - ovarian cancer they now know, is driven by hormones - hormone therapy suppresses hormones - may keep patient stable, and live a long time with cancer, or shrink the cancer - may be able to lead a normal life - whereas chemotherapy is much harder on the body
1:30:20
But the hormone therapy didn't work for Kelly Anne and cancer progressed and they found it on her liver too - so advised to try a different chemo drug and Kelly Anne agreed and started it March 2017
"Forgiveness is a gift you give to yourself"
1:32:00
Different side effect experience on the new chemo drug, but sill lots of nausea and fatigue - from her previous chemo, Kelly Anne became pre-diabetic due to the steroids - this time for chemo, she only did steroids with the infusion - took CBD oil instead and was not pre-diabetic by end of chemo - also took other supplements to help with side effects
1:34:15
But her cancer started to grow exponentially be the end of chemo - felt like she did all this for nothing - during this time Kelly Anne also sought legal advice about her mised diagnosis - the lawyer said that she did have a case, but the reality was that in Canada doctor's are protected by the Canadian Medical Professionals Association
1:35:00
The lawyer says - Tax payers pay the premium that pay the physician's lawyers - will be at least 4 or 5 years before a trial because they always fight and take it to trial - they will put you on the stand and blame you for not following up - it is very difficult to litigate these cases in Canada - it will cost you money and the most you can sue for under the law is your lost wages - and then your employer can sue you to recover the disability payments they paid to you - lot of work for minimal return
1:37:00
In Ontario, part of the physicians agreement with the provincial govt, is that the Ministry pays the CMPA premium - and the Ministry is funded by tax payer dollars - in the news the College of Physiciand and Surgeons of Ontario (CPSO) has had problems with disciplining their doctors
1:39:00
"Forgiveness is a gift you give to yourself" is one of Kelly Anne's values - willing to say the gyno doctor made a mistake, they are human - need to move away from mode of thinking of doctor's know everything - but I needed to know the gyno had learned her lesson so no other woman would go through what Kelly Anne did - so did not move forward with a law suit - instead filed a complaint with the CPSO that the gyno had practiced outside of her area of expertise - she's not an oncologist, just a gynecologist
Stopping the medical harm
1:41:10
Complaint process includes a rebuttal from the phsycian - Kelly Anne was gobsmacked that the doctor would still profess that Kelly Anne never had cancer, she was lying, she was wrong
1:42:29
Kelly Anne replies that the gyno failed to proved Kelly Anne with a year of her file - that Kelly Anne did have cancer and here's the report - but Kelly Anne got great support from the cancer community in preparing her reply
1:44:30
Gyno claims to have called the cancer centre, but no records exist - and not proper protocol by gyno
1:45:45
With ovarian cancer, it is not uncommon for doctors to ignore or mis-attribute symptoms - that's why mortality rate so high for ovarian cancer - 50-60% diagnosed pass away in 5 years
1:47:10
Complaint went to CPSO committee, 6 months later Kelly Anne got the decision - they said they sent gyno to remediation - made her change her practice so no longer allowed to do ultrasounds in her office without a radiologist reviewing the scans
1:49:00
CPSO not looking to see if other of gyno's patients also harmed - Kelly Anne's doctor is 'type # 3", it is all about her ego
1:50:30
Kelly Anne hopes gyno has learned her lesson and that other women aren't harmed - making her change her practice is a huge win because a radiologist will review scans - hopefully remediation and the slap on the wrist will help people get right diagnosis - prevention and early diagnosis is key
1:51:45
Has been a spiritual journy - 'forgiveness is a gift you give yourself' - when facing your mortality, start to ask what is my purpose, what do I want out of this live, what do I regret - wants to leave place better then I found it - went to CPSO and made complaint
1:53:00
Kelly Anne has come to a place where she accepts this is her journey and this is how it unfolded
1:54:00
Finished chemo July 2017, disease really accelerated - fluid in lung, abdomen, couln't eat, couldn't breathe, constant pain - made decsion to do surgery again - drain lung first by going in through rib cage with a tube and pump out fluid, 2 litres - could breathe when she woke up, felt marvellous - then being able to walk and eat, had regular bowel movements
Dying
1:57:00
Was dying before surgery - but they were able to resect her liver, removed spleen, resected bowel and reattach - cleaned as much disease / cancer they could see, but some left behind - removed 5 litres of fluid - 170 staples and tension sutures - lost a lot of blood - woke up without pain meds - lots of pain, had to wear binders to hold stitches - under for 9 hours of surgery
1:59:30
Heart took a hit - took 8 months for resting heart rate to get back to normal - but within 2 months more cancer - at this point it is chronic, not hoping for a cure - stability is realistic goal - have met women that have lived 20 30 years - just matter of finding right combo of meds - ongoing discussions with oncology doc about meds to try
2:03:07
In 2017 sought 2nd opinion from US hospital - and oncology doc was open to their opinion2:04:30Canada behind updated cancer monitoring - the last year has been trying to find right meds combo - including $10k a dose med 4 times, but it didn't work - new med means small tumours have stopped growing, medium sized tumours are slowing down their growth, but large tumours are being stubborn - added another med suppresses hormones and seems to be helping
2:07:30
Some meds tolerated better than others - side effect caused blood clots and trips to emergency room - pain and fatigue - can sleep 12 hour and nap 4 hours and feel like need more - losing hope will be able to return to work
Making meaning out of life
2:09:00
Gifts from this experience is advocating with Ovarian Cancer Canada and a program called Survivors Teaching Students for medical schools and nurses and share their stories - worked with pharma companies, share her experience at conferences - also Patient and Family Advisor for psychosocial care - when you're ill it affects physical, emotional and spiritual
2:12:30
Whole life trajectory changed, want something different - healing journey - meet, connect, bond with other patients - a lot of good has come out of this tragedy - there is old Abroriginal saying that when you heal yourself, you heal 7 generations behind and forward - healing family relationships because of cancer experience
2:15:15
Wouldn't trade cancer because all of these great things have happened - perspective shift is the gift of cancer - connecting deeply with others is meaningful is liberating - feels freer, happier, more joyous having gone through all this - I like the person I am now then I was before
2:18:10
When you're sick you realize you can't take anything with you, and what you really want is to have the people that love you, around you - I've accepted and embraced that this is how my life is unfolding
The Gift of Cancer
Connect with Kelly Anne Branco on Instagram:
@BrancoBookNerd
The Granulosa Cell Tumor Research Foundation