Overcoming Parathyroid Cancer
The following interview details the recent and remarkable story of a 90-year old woman named Beryl who developed mysterious symptoms that were, at first, misdiagnosed as dementia, and later recognized to be parathyroid cancer.
Thanks to Beryl’s daughter Greer’s herculean efforts to help her mother (who is deaf and relies on lip reading to communicate) during a COVID surge — while masks made lip reading impossible — Beryl finally received the proper diagnosis and underwent surgery with Columbia’s endocrine surgeon, Dr. Catherine McManus.
Happy spoiler: Beryl was able to make a full recovery, but the lessons from her story are crucial for all of us to understand.
Jump to a Section:
- Mysterious Symptoms
- Proper Diagnosis
- Conclusions & Lessons
I was hoping you could start by telling us a bit about yourself and about your mom.
My name is Greer Dawes. I am a Math teacher in a middle school, but before I became a teacher, I was a medical microbiologist, for many years — working in a medical laboratory, studying microorganisms like bacteria, fungi, and viruses. I’m from Kingston, Jamaica, West Indies, where I received my microbiology training.
My mother is 90 years old. A widow for the past 4 years. She has eight children.
And currently, how is your mother doing?
My mother is currently doing very well. Back to her original status, before she got sick. In other words, being very bossy. [laughs] She thinks she owns my apartment.
So that’s a good sign. Her aide says: Ms. Sunshine? Ms. Beryl is back. She’s not so compliant, anymore.
Haha. That’s a good sign, indeed. And what was your mother’s profession? Just to get a sense of her life?
She was a homemaker. Took care of us. Made sure we did all our chores. When we came home, she always made sure we had meals waiting for us.
So how did this whole ordeal begin? What were the signs and symptoms that you noticed, and that ultimately led to her surgery?
Before surgery, it was not a very nice situation at all...
My mother is hearing impaired. She is deaf. She became deaf in her early twenties. Not sure how, I heard different stories, but she is deaf in both ears. And, all my life, I had never heard my mom sing.
And all of a sudden, my mother is singing. I’m not sure how she learned those songs. She was also making songs up. So that’s how the strangeness started. I noticed that she was starting to sing.
Whatever was happening, it seemed like it activated in her brain the musical part. It came alive. And she was making sounds up.
Also, when she was walking, she would walk with a 1-2-3- beat. Like walking down the aisle at a wedding. She would walk with a 1, 2, 3, pause. 1-2-3-pause.
It was very odd. It was pleasant that she was singing, but it was out of her character.
For context, how does your mother communicate back-and-forth with you?
She lip reads. She had full speech and full reading before losing her hearing. If you speak slowly, even over Facetime, she can read lips. She doesn’t distinguish voices. She can hear environmental sounds.
So she does speak, but she had never sung before. What other symptoms did you notice?
After that happened, her walking was affected. Her legs were locking up. Her movement was starting to decrease. And other medical symptoms occurred.
Constipation, which she had mildly experienced before, became magnified. This was terrible.
She also couldn’t sleep at night. She would cry that she wants to sleep. We gave her many different medications, you name it, but none worked.
She couldn’t sleep, she couldn’t walk, she couldn’t pass feces. She was urinating a lot.
Then it came to a point where she wasn’t swallowing anymore, saliva or food.
She lost the ability to eat food?
Her appetite never went, but the food wasn’t going down. So we had to make her open her mouth to show us if there was food.
Then it became very difficult. Because this was happening during COVID, and because the aides had masks on she could not lip read.
We had to write on pieces of paper: “Swallow, swallow, swallow” to remind her. Luckily, her reading was still intact.
...And then it was like she went into dementia.
Did this happen over a long time?
No, this all happened in a short period of time. A couple months.
At this point, you sought out help?
We went to a General Practitioner, first. He thought one of her medicines was causing the movements in her feet. So the GP stopped that medicine. All the symptoms were mimicking other conditions.
I had to rent a wheelchair because her walking was impaired.
When stopping the medicine didn’t help, what happened next?
I said to the doctor, you need to do a full blood work-up. He did the work-up, and the next day I got a call. The calcium. He said, “You need to get her to the ER. You need to call an ambulance.”
So her calcium levels were abnormally high?
So I call an ambulance. I don’t know how else to get her there, because she can’t walk. It takes me to one of the local hospitals in Flatbush.
Can you set the scene?
It’s very stressful because of COVID-times. Her mask is not on, she takes it off, because she’s very confused now. And we have to do COVID tests.
I have to leave her in the ER, but she cannot communicate because of the masks. She relies on lip-reading. She’s not wearing the mask. She doesn’t want to wear the mask.
And she’s also getting more confused, right?
She doesn’t know where she is. She thinks she is in Jamaica. She’s not even recognizing some other family members anymore.
And then, since I’m a remote teacher, I’m teaching, and my phone rings. I hear my mother screaming in the background like a crazy woman.
They say “You have to come.” They can’t calm her down. She’s thrown out her medicine.
What is your mother feeling at this point?
She was just very scared of her surroundings. She’s not sure where she is. She doesn’t see any family members. Everybody’s in a mask.
And then they're shouting at her, like if they speak louder she’s gonna hear.
So I went. I had the mask with the plastic, but it didn’t work. I had to pull my mask down. I get there, I hear her down the hall. So I go in. She was so happy to see me. I said calm down. She listens. I said to the staff, bring me back the medicine, and I gave it to her.
My mother began explaining to me that they had removed her underwear. She was in terror, and feeling like she was unsafe. She was just crazed. And they didn’t know how to respond to her. Because of the masks, and because she is deaf.
So I had to put a sign: “Patient is deaf. Do not shout.”
Did they address the calcium levels?
They give her IV fluid to titrate, and the calcium level goes down enough to go home.
After three or four days, she became calmer. She was able to walk in the hospital, with us holding her hand. So there were improvements.
Did they offer a diagnosis?
They were fixated on the dementia symptoms instead of the hypercalcemia. And the resident kept asking if I have DNR (do-not-resuscitate) forms.
That must have been scary to hear. What happens when you bring her home?
So I have this task now of monitoring her in terms of intake of calcium. And I have to figure out how much liquid she can get without overpowering her kidneys but making sure the calcium levels don’t go back up. And also monitoring her medicines. It was just very chaotic.
So eventually the calcium levels start to rise again. Everything I did was just not working. I took all the calcium out of her diet. No more multivitamins. I think she was on the water pill. Monitoring her diet, vitamins, and despite all that, it rises again. It just got crazy again.
So this was confirmed with repeated blood tests?
We did blood tests with the nephrologist, but I normally do blood tests before I go. I don’t like to waste the visit.
And the nephrologist calls me and says, “Do you know that your mother’s calcium levels are 13 points up?” And I said, “No, and yes.”
I related to him the episode when she was admitted, before, to the E.R..
Now, I had to take her to the ER a second time.
Describe this second visit.
She goes back in. Goes through the same thing again.
This time, the Palliative Care staff [a department devoted to quality of life and symptom management] has a meeting with me to persuade my mother to go to hospice.
They believe that the calcium will go down with IV treatment, but that it’s simply gonna go back up. And they don’t give me any options or alternatives other than the titration of bringing down the calcium.
In other words, no actual diagnosis of a cause, or possible “cure.”
So the recommendation was to get her in hospice, and if she gets sick again, the nurse could come in and do the IV in our home, instead of her coming back to the hospital, and being terrified in the ward, and so on.
And of course, getting her into hospice is not just a call, it’s a whole procedure.
And I’m at home, I’m working from home.
How were your mother’s symptoms, at this point?
My mom’s dementia was getting worse. In the middle of my class, you hear, she’s sleeping, and then wakes up, and for about 60 seconds, it’s like she’s in this world she doesn’t recognize. Whatever is in front of her, a table, a chair, gets knocked over.
My students knew my mother was ill, so they were very supportive.
What happened next, on the medical front?
So she has an appointment now with a geriatric psychiatrist to monitor the dementia. It was a very long intake. Two hours of intake on the zoom hospital service.
Of course, my mom is not able to answer questions, she was in another world. So I’m the one they’re taking the intake from, and there are a million questions, over and over. This was a resident doing the intake. And they’re asking very basic, tedious, repetitive questions.
Finally the doctor came on. We spoke. And he listened.
I told her that my mother did not have these dementia symptoms until all of this started to happen, the walking, the swallowing, etc..
Even when she came out of the hospital, on both occasions, the amount of dementia decreased, each time. It only got back out of whack as the calcium increased. It was cause and effect. And the ER doctors just hadn’t listened to the context.
They assumed because of her age, it was dementia. What did the geriatric psychiatrist say after you gave him the full context?
The doctor said to the resident: “We are not going to do anything with psychiatry.”
Wow, so he was ruling out dementia, for the time being.
And then he pointed at me, and said “You need a second opinion.” And then he said to me, “a second opinion from a Manhattan doctor.”
From a “Manhattan” doctor?
Yes. And at that point in time, I felt that the level of care you get from borough to borough is really not equal.
Did he recommend any particular doctor?
He said he would consult his wife, who was a recently-retired endocrinologist from NYU. But I said, I am able to maneuver. Having been in the medical field myself, I know how to find the doctors.
How did you know to look for parathyroid / endocrinology, was it the wife of the psychiatrist?
Because she has border-line diabetes she was previously being seen by an endocrinologist. Her Parathyroid Hormone (PTH) levels were being monitored by him. They had been somewhat elevated, so she was prescribed Cinacalcet to regulate the hormone.
Monitoring had fallen off during the heart of COVID-19, as doctor's offices were closed and as they shifted to virtual consultations.
In fact, there wasn't any discussion about her parathyroid, until it was out of control and we sought emergency services for her hypercalcemia. Only after her second ER visit, did the blood tests and discussions focus on PTH levels.
So now, based on the elevated PTH levels, you knew you needed to look for an endocrinologist? How did you start your search?
The next day, I just went to Mr. Google. I typed in and I saw Parathyroid and Thyroid Center. This was a designated part of the hospital that deals with this only.
And the secretary answered, and I told her the situation.
Dr. Catherine McManus called me back, I think, the next day. I gave her the history. She saw my mom. My mom waved a little bit. Of course my mom doesn’t know what’s happening. Dr. McManus accepted Medicaid. And that’s where the story started.
How did things proceed with Dr. McManus?
She listened. And my mother’s age was not an issue. The other doctors had just figured, my mom is 90 years old, she is ready to go to her coffin. And that I was in denial of that situation.
My mom celebrated her 90th birthday in August, 2020, and we had a zoom party. And she was able to participate with everybody who was all over the world. And in the space of 2, 3 months, she became a different person. And I know dementia is not a thing that just happens in 2 months, but they figured I hadn’t been paying attention to her dementia signs, since I live with her.
So, it was now clear from the PTH and calcium levels PLUS the consultation with Dr. McManus that this was parathyroid-related. Was the plan to get to an exact diagnosis with more specific testing? How did this proceed?
Yes. But first, Dr. McManus told me the person from the COVID center would get in touch. Because my mother had to do the Covid test again.
This was all taking place during COVID spikes, right? So what happened next?
I had to take my mom a week before the surgery to get a special x-ray. And it was very difficult.
It was a long x-ray. And my mom could not do it. She couldn’t keep still. She had to stay in this machine, and I wasn’t there. And the mask was off. So it didn’t go for the required length of time. So she couldn’t get through the whole thing. It provided some information, but not the complete picture.
The people were very nice, nonetheless.
Next, she did a sonogram. My mom was a bit agitated, but a little more relaxed than she had been at the E.R. She was now with two women, Dr. McManus and myself. That helped.
We also showed her the snow outside, which calmed her.
It’s a good reminder that comfort between the patient and the doctor comes from trust and understanding. Did the incomplete X-ray and the sonogram reveal sufficient information to proceed?
From the sonogram, Dr. McManus did not yet know it was cancerous, but she said she had enough information based on what she saw. But she didn’t know it was cancerous then.
The secretary then says, so when do you want the surgery? How about this date? And she just gave me a date. And I never knew it was so quick. And then everything happened exponentially after that.
How did all this play out against the backdrop of COVID?
When we had to go back on a Thursday, the elevator in my building was not working. And the ambulance was downstairs waiting for my mom to go and do the COVID test. If she doesn’t get the Covid test, she cannot do the surgery on the following monday.
I had to call the fire department. I called 911. The ambulance came. They said they can’t carry her down, unless they take her to Downstate Hospital. So they left.
The fire department came. They didn’t have the assistance chair to take her down the street. So they had to call the ambulance back to borrow the chair. My street was fully blocked. And it was so cold outside.
That sounds like a nightmare.
On top of this, her general practitioner says he doesn’t want her to get surgery unless she gets a chest x-ray first to assure her safety. Two doctors needed to sign off, because of her age.
So then she had to be transported from Columbia to another location in Brooklyn to get a chest x-ray. And of course, I have no way to get her back up to my apartment, because the elevator’s still broken.
So I had to make an arrangement with lift assist, and they were two hours late to pick her up. It cost me $750.
Wow. Once she was approved for surgery, what then?
The morning of the surgery, the elevator is not working again. And my mother has to get to the hospital for 6am. I hire the lift assist, but by the time they arrive, the elevator is finally working. And they were very kind, they just signed off and said the patient doesn’t need any service anymore, so I didn’t have to pay that extra 500 dollars, again.
However, we had to stop along the way, because they were picking up other people, something they hadn’t told me. I called the hospital and said I’m still on my way. At this point, I’d been going since 4:30am. The hospital said it’s okay.
I got to the hospital quarter to 7. And by 7:15 she was in surgery.
How was your mother handling this ordeal?
At that point, I hadn’t told my mother that she was going to have surgery. She’s hypertensive, I didn’t want her to get excited. I took her in her nightclothes. We changed her into the OR apparel.
Then she started to figure it out, she started to get a bit antsy. So I told her the doctor is going to fix her throat so she can swallow better.
By the time she realized she was going to have surgery, she was on her way to the O.R. But she knew she was going back to the “far doctor,” because Columbia was so far.
And because it was so far, I would be unable to travel back-and forth to Brooklyn. So there’s a little hotel not very far from the hospital, about four blocks down. I booked it for the amount of days. Because I anticipated her getting antsy, and they can’t control her.
And did she get antsy?
After surgery, when did you learn that your mother’s parathyroid was found to be cancerous? And how did you feel hearing that?
Dr. McManus called me. She said everything went well, and she had to take out two parathyroid glands and half of the thyroid gland, because one of the parathyroid glands was very stuck to the thyroid gland.
And it was after the pathology reports came back that she told me. I did not anticipate that it was cancerous.
And so she told me she had tested other parts of the parathyroid. It didn’t seem the cancer had spread to other areas.
[NOTE FROM DR. McMANUS: Beryl ended up having parathyroid cancer, which actually can only be diagnosed in the operating room by the diseased parathyroid gland appearing more “stuck” to surrounding tissues. The only way to cure it is to remove everything “en bloc,” meaning removing all of the tissues around the suspected parathyroid cancer (including taking out half of the thyroid). I recognized it in the OR, took out half of the thyroid, and based on the pathology, we removed all of the cancer, and she is essentially surgically cured.]
From the very first time I spoke to Dr. McManus, she was very positive, upbeat, encouraging, so I didn’t have any fear — and remember, my mother didn’t have any other alternatives — so I was not fearful.
From the get-go, Dr. McManus seemed like she knew what she needed to do. She said maybe the hospital would give a little hard time, because of the mom’s age, and the risk of complications.
What kind of complications did she say might have been problematic?
When two of the four parathyroids over-produce, the other two go to sleep. So by removing two of them, there could be a situation where the remaining two would take a long time to wake up.
And if that happened, my mother would begin experiencing symptoms of hypoparathyroidism. She would have had tingling all over her body, and it could have been too much discomfort for her, post-surgery. Also at her age, she needed a few days in the hospital. So that needed approval.
[NOTE: Because of COVID and restrictions with the O.R., special permission was required to keep patients overnight].
Dr. McManus said she would present the case, and explain that it was a necessary surgery, and I believed her. And so, I wasn’t scared of the surgery. I went to the hotel, and I logged into my class. And I waited until visiting-hours.
How was she when you saw her?
She seemed fine! And all the time that she was there, not once did they have to call me, nor was ever uncontrollable.
She loved the ladies who were there to help, because she is older. She says they are nice people. And so she was able to differentiate the care that she got from those people versus from the ones she got at the other hospital. She felt very relaxed.
Even when I left, it wasn’t an issue. She seemed very relaxed based on the care and the comfort she was getting from the people around her in the hospital room.
Tell me about her post-surgery recovery.
From day one, the day of the surgery, when I went back, I could see that the saliva was not coming out anymore. So her muscles were starting to respond.
Her mouth was not filled up. She was not spitting anymore. Because I had had to go online and get a spitting cup, and the place had so much saliva because she was missing the cup. That was the first thing I noticed, she was not asking to spit.
This was the same day she had the surgery, there were improvements, because the calcium level had fallen and the hormone levels had fallen. So it was like her body started to revert, right away.
And then I told the staff that when she is at home, she can sit up. So the young woman, who was there, together we took her out, and put her in the chair. And the next day, there was a sliding chair. I said, let’s push her over to the window. And she was eating, and the food was not lingering in her mouth.
What about her mobility?
She was able to move, with help. We could move her from one place to the next, without using the wheelchair. She didn’t verbalize it, but when we got home she was able to say to family members, she thanked God that she could walk again.
And how about the dementia?
As for the dementia, it is G-O-N-E, gone. Every single day, that improved. And it improved 100 percent. It went away. She doesn’t have any dementia. Oh, and the constipation went away when she was in the hospital.
Were there other concerns to think about, post-surgery?
Dr. Rubin, the endocrinologist, explained to me that it’s always possible a single cancer cell could have escaped, and so we would monitor her closely.
We could help her out with her diet, because she needs some calcium. You don’t want the calcium to start leaching from bones, because the body thinks it is calcium-deprived. But we limit her calcium intake so the levels don’t start to go up. We give her some dairy. We’ve had appointments with the nephrologist, too.
And she’s fine, back to her old self. Back to the old Ms. Beryl.
What are some important takeaways from this experience?
One of the things I want people to know — physicians, first of all — is that they need to listen to patients and their family members. Regardless of what the medical information is showing, do not discount the background information.
Dr. Cohen — the geriatric psychiatrist — is an older doctor. He knew that there are other things that can cause dementia. And he understood that I kept insisting, “It only started when...”
When all the other symptoms occurred, and the calcium levels rose, right? What’s another takeaway?
Another thing is age is just a number. And just because you’re 90 years old, doesn’t mean you have to go to hospice.
Great point. It sounds like your persistence was also extremely valuable.
And there’s nothing wrong — and your doctor should not be offended — if you say I would like to get a second opinion. Second opinions are very important. It doesn’t hurt. And in this case, it saved my mother’s life.
Finally, can you expand on this extremely important point you brought up about the referral to a “Manhattan Doctor” and about inequity in healthcare?
I’ve thought about this a lot. It’s a shame in America, in New York City: the medical care you get from one borough to the next should not be so different. There should be some sort of equity.
We have inequality in education, and in health care it’s there, too. I was never even referred to an endocrinology department. I know it was COVID times, but this was an emergency. If they can’t do it there, refer out.
The inequality of health care, it’s an issue for minority communities. It should be the same for everyone.
It sounds like she was discriminated against because of her age, and also effectively because of where she lives.
It makes me wonder how many other older people have been sent home to get hospice care, when a two-three hour same-day surgery could solve this. She never had any complications. Her parathyroid glands woke up by themselves. Everything went fine. You can’t even see the mark on her neck, it’s in the fold.
So this inequity of health care is the same as the one I have observed in the education field. Inequity.
I think anyone reading this will take away some great lessons, and recognize the ordeal you had to go through to get your mother the care that saved her life.
And trust me, during COVID times, being in a small room, where some of the medical professionals don’t even have masks... I was terrified.
My mom got her first COVID vaccine before she had the surgery. And she got the second one a week after the surgery. No complications, and she’s doing fine.
And I must say kudos to Dr. McManus and her team, including her secretarial team. They were always available, and they call you back. Everything was clear. It was just very straightforward. 1,2,3, and it happened.
Same with the surgery, and information was passed along. I was always kept in the loop. So the team was wonderful, and I’m very grateful.
- About the Parathyroid Glands
- About Parathyroid Cancer
- About Parathyroid Surgery
- Overcoming Hyperparathyroidism: An Interview
- Columbia Parathyroid Center