Blood Cancer Symptoms

(announcer)major funding for second opinion is provided by the blue cross and blue shield association;an association of independent, locally-operated and community-based blue cross and blue shieldcompanies, supporting solutions that make safe, quality, affordable healthcare availableto all americans. second opinion is produced in associationwith the university of rochester medical center, rochester, new york. (music) (dr. peter salgo)welcome to second opinion, where you get to see firsthand how some of the country’sleading healthcare professionals tackle health

issues that are important to you. now each week our studio guests are put onthe spot with medical cases based on real life experiences. and by the end of this program, you’re goingto learn the outcome of this week’s case and you’ll be better able to take chargeof your own healthcare. i’m your host, dr. peter salgo, and todayour panel includes our special guest, gayle peterson, our second opinion primary carephysician, dr. lisa harris, dr. andrea utz from vanderbilt, and dr. edward vates fromthe university of rochester medical center. welcome to all of you.

all right, we’re going to break with traditiona little bit here because the patient in our case is patty but we’re not going to meetpatty, not just yet. we’re going to break format and insteadwe’re going to hear from our panelists first. and we’re going to meet patty later on. gayle you’ve got quite the story and i didn’twant to wait to share this with everybody. so why don’t you begin at the beginning. (gayle peterson)it started when i was about forty. i started with swelled ankles. they didn’t do anything for that.

they said, you know, just walk more. (dr. peter salgo)and before that you were of normal weight? you were fit? (gayle peterson)yes, exactly. (dr. peter salgo)so then what? (gayle peterson)swelled ankles. then my legs started hurting and getting weak. it was hard to walk up a flight of stairs. and then i would also get shortness of breath.

(dr. peter salgo)okay. hold on right there. lisa, if she had come to you, in your office,complaining mostly of rapid weight gain, unexplained, what would you do? (dr. lisa harris)well there would be a couple of things i’d want to know about. what changed in her lifestyle, if she’shad any recent changes in eating habits and sleeping habits, if she’d been eating moresalt, had she traveled recently and most certainly would do some blood work to see what was goingon with her?

(dr. peter salgo)well here she is. as opposed to our usual case you actuallyhave somebody to ask that question. (dr. lisa harris)that’s right. (dr. peter salgo)did you change anything? (gayle peterson)no i did not change anything. (dr. lisa harris)and you hadn’t been living in a very hot climate? (gayle peterson)no, no, just in upstate new york. (dr. lisa harris)and how much weight did you gain in what period

of time? (gayle peterson)at first it was just slowly twenty pounds and then more rapidly as the years went on. (dr. peter salgo)so what did your primary care doctor do? (gayle peterson)there was nothing wrong and just, you know, lose weight and you’ll get all better. (dr. peter salgo)well you’re an endocrinologist. does this sound rational to you? by the way you didn’t get better doing that?

(gayle peterson)no. no. i did not. (dr. andrea utz)well i think that gayle made one comment that i think is very critically important was oneof the things that she said was that she was having trouble walking up steps. and so i think when i’m seeing somebodythat has weight gain, certainly we think about thyroid disorders, we think about cortisoldisorders. we think about dietary changes and exercisechanges that have led to that.

but it’s looking for the specific othersymptoms that can guide you to look for the really rare disorders and the one she alreadyhas said is that she had trouble walking up steps, so proximal upper body and upper legweaknesses is a very important symptom. (dr. lisa harris)muscle weakness, right. but that would have popped up in my head thinkingthat she had a muscle disorder first before she had an endocrine disorder. (dr. peter salgo)did you eventually get to see an endocrinologist? (gayle peterson)after quite a few years of these symptoms, yes.

(dr. peter salgo)and what did that endocrinologist recommend? (gayle peterson)i had diabetes. was diagnosed with diabetes. (dr. peter salgo)let me catalog these things then, weight gain, proximal muscle weakness, the upper musclesbecause those are the ones you use to climb stairs. (gayle peterson)right. (dr. peter salgo)swelling. and now diabetes.

right. (gayle peterson)well first before that i had the stiffness in the legs. stiff if i wasn’t walking and getting weaklegs, they were stiff and it would take me a while to get the legs moving. also they were very painful to the touch. well all this while, gayle, its years, you’vetold me. (gayle peterson)years, yes. (dr. peter slago)how are you feeling emotionally?

(gayle peterson)terrible. just terrible emotionally because physicallyi knew there was something wrong but they kept telling me it’s all in your head. we’ve had many tests for many differentthings and everything came back normal so they had me convinced i was just fine andi just kept trying to go on living my life but emotionally and mentally i was feelingterrible. (dr. peter salgo)were your docs actively at some point, did they just stop looking for a cause and juststart throwing meds at you? (gayle peterson)exactly.

that’s exactly right. you know medicating each item that was goingon. at one point i did have a blood clot in myleg so then i was on another med for that. (dr. peter salgo)now docs you can hear. i hear the frustration. she clearly had lots of symptoms, symptomsof something. (dr. andrea utz)well i think again her presentation, the initial symptoms were very common. it’s the adding in like we’ve alreadymentioned the proximal muscle weakness and

now a dvt. so a venous thrombosis. (dr. peter salgo)dvt is deep venous thrombosis. (dr. andrea utz)so that again, again it’s something that can occur in the setting of increased weight. but it also can occur in the setting of variousendocrine disorders as well. (dr. lisa harris)and particularly if she’s telling you that she’s gaining weight and she hasn’t madeany changes in her lifestyle. we’ve really honed in that and there’sbeen no changes in diet, no changes in sleep

or activity patterns and you’ve really gotto start searching. (dr. andrea utz)can i ask one question? another, i think, important thing to ask isalso in a premenopausal woman is what your menstrual function was. were you continuing to have regular periods? was there, had there ever been any issue withinfertility in your past. those are, you don’t necessarily have toanswer those but it’s just an important thing to think about that i think sometimesgets dismissed and its very good insight into what may be going on in endocrine problems.

(gayle peterson)no, those were normal. (dr. andrea utz)normal. (dr. peter salgo)now there you were sitting in yet another doctor’s office and you picked up that famousmedical journal, the reader’s digest. exactly. (dr. peter salgo)and what did you see? (gayle peterson)on the cover it said misdiagnosed. and i thought wow that sounds interesting. and it was a patient who had a certain diseaseand i looked at all of them.

she had it for over fifteen years and i saidthat’s me. that’s me. that sounds exactly like me. (dr. peter salgo)and what disease was that? (gayle peterson)that was cushing’s. (dr. peter salgo)cushing’s disease. and that was a eureka moment. did you carry this into the office? what did you do?

(gayle peterson)i took it home and showed my husband and he said, yeah, yeah. that does. that does sound like you. (dr. peter salgo)let’s start with that. what is cushing’s disease? (dr. andrea utz)a disease where someone’s body is making too much cortisol, which is an important hormonein the body for regulating metabolism and bone health and your immune response.

if you have too much cortisol it can havedevastating effects. (dr. peter salgo)what are those devastating effects? (dr. andrea utz)devastating effects, so excessive cortisol, in a generic term we call cushing’s syndrome. and cushing’s syndrome can be caused bya number of different types, of different tumors within the body. so the devastating problems can be high bloodpressure, diabetes, osteoporosis. a lot of times people will present with proximalmuscle weakness, venous thrombosis, they’ll have rapid weight gain in certain distributionsof their body, so they’ll have a rounded

face, what we call moon faces. they’ll develop abdominal obesity with thickred stretch marks on the abdomen that we call striae. a dorsal fat pad sometimes called a buffalohump. (dr. peter salgo)how common is this disease? you know i want to make it very clear. there’s cushing’s disease which is whentoo much cortisol is produced by the pituitary gland and cushing’s syndrome which is everythingelse with too much cortisol. is that fair?

(dr. andrea utz)right. all of them are rare. all of the tumor causes of too much cortisolare very rare disorders and i think it’s why it goes missed for so long. (dr. edward vates)and even though it is uncommon, if someone’s coming to their doctor that often with thatmany complaints. (dr. edward vates)that’s when you really got to think about it, it’s not just a lifestyle problem. (dr. edward vates)this could be a true metabolic or other kind

of syndrome that’s giving rise to. (dr. peter salgo)now let’s talk about the pituitary gland. where is it? what does it do? i think we’ve got a picture. (dr. edward vates)yes. (dr. peter salgo)a picture that we can show. so the pituitary gland we think of as themaster gland. and because it’s so important it’s sittingat the center of your head.

so this is a picture showing the brain sittingabove and then right at the center of this picture you see the pituitary gland. the pituitary gland connects to your brainthrough a stalk and like anything that’s important it has important neighbors. the most important neighbors being the opticchiasm which is the crossing point for the nerves that connect your eyeballs to yourbrain and allow you to see, and then on either side, like the rocks of gibraltar are thecarotid arteries, which are the major blood supply to your brain. (dr. peter salgo)so gayle there you are.

you’re going eureka. (gayle peterson)yes. (dr. peter salgo)i’ve got cushing’s. and you go to your doctor expecting this overwhelmingjoy and what happens? (gayle peterson)i went to my endocrinologist on a regular checkup. at that time i was on many meds and he saysto me no you don’t have that. you’re not fat enough. (dr. lisa harris)wow.

(dr. peter salgo)so then what happened? you had to wait some more. (gayle peterson)yes i had to wait some more. i went to another endocrinologist and shesaid well sure i can check you out for cushing’s. that’s you know, that’s not unreasonableand she started the long series of many tests and to find out if i really did have it ornot. (dr. peter salgo)so what tests do endocrinologists run to look for cushing’s? (dr. andrea utz)whenever i’m first evaluating someone for

cushing’s i always sit down with them andsay that this is a very step wise approach. that there are a number of tests that we’regoing to do to rule this in or rule this out and once we think you have it it’s thenanother number of tests to do to figure out where the problem is coming from. so the basic test that most endocrinologistsdo, are they measure your urine, twenty-four hour collection of urine for cortisol. and another screening test is to measure yoursaliva at nighttime between eleven and twelve o’clock at night because cortisol is releasedin a circadian rhythm with more being produced in the morning and very little being producedat nighttime.

so we can actually have them measure theirsaliva at home and if its elevated that’s suggestive that they may have a cortisol problem. (dr. peter salgo)you got the blood test, right. you got some studies. and what did your doctor say? (gayle peterson)she said its cushing’s. you do have cushing’s disease. (dr. peter salgo)so you established the fact that your cortisol was high.

(gayle peterson)aha. (dr. peter salgo)right. then they went looking for where it was comingfrom. (dr. peter salgo)they started with your head. and what did they find on your mri? (gayle peterson)actually on mine they did not find a tumor there until i did have surgery. (dr. peter salgo)so they went in and operated without evidence on the mri but with evidence on your bloodtest.

is that common? it seems a bit courageous. (dr. edward vates)for cushing’s disease it is surprisingly common. so a lot of pituitary tumors will be big enoughthat you see them on an mri scan and often times the size of the tumor actually fitswith how severe the patient’s symptoms are. but for cushing’s disease this is the oneexception. here you can have even a one millimeter tumorcausing phenomenal changes in the patient’s body.

(dr. peter salgo)master gland, little tiny changes, huge effects on the body. (dr. edward vates)exactly. (dr. peter salgo)and what did they find? did they find a tumor? (gayle peterson)yes they did find a tumor. (dr. peter salgo)how big was it? (gayle peterson)very small. very small.

it was hidden in a crevice, which that iswhy it could not be seen on the best mris. (dr. peter salgo)i’m told on good authority it was one millimeter. (gayle peterson)oh thank you. (dr. peter salgo)it was small. how big is a millimeter? (dr. edward vates)a millimeter is about the size of the tip of a pencil. when you do this kind of surgery typicallywe use either an operating microscope or nowadays we use endoscopes so that you have very bigview of a very tiny area.

(dr. peter salgo)and i think we have some pictures. this is a pituitary gland tumor. (dr. edward vates)this is an example of a tumor that’s about twelve or fourteen millimeters in size. so if you look on the. (dr. peter salgo)that’s a bigger tumor. (dr. edward vates)on the left side of the picture, what’s actually the right side of the patient, yousee the tumor. and it’s squished or compressed the pituitarygland off to the other side.

and it’s also caused that stalk that connectsthe pituitary gland to the brain to be pushed over or what we call deviated. now we got a tumor over here which clearlywas producing stuff. and in medical terms that’s a productivetumor. (dr. edward vates)correct. (dr. peter salgo)there were also tumors which can be this big if not bigger and they’re not producinganything. those are none functional tumors. what gives?

how comes sometimes they produce stuff andsometimes they don’t? (dr. andrea utz)well it depends on the cell from which the tumor was derived. so the pituitary gland has a number of differentcell types and if you happen to develop a tumor from the cells that normally make acth,which is the hormone that stimulates your adrenal glands to make cortisol then you havecushing’s. if you develop a tumor and the cells thatmake prolactin then you have a prolactinoma. if you develop a tumor in the cells that makesthe hormones that stimulate your gonads which make you make estradiol in women and ovulateand in men make testosterone and sperm, those

tumors from that cell, that different, thatspecific cell type generally don’t make a hormonal problem. a hormonal syndrome so we call them non functioningtumors. non functioning tumors certainly need to bewatched over time, particularly if they’re of the larger size, which what we just sawon the picture because they can gradually grow over time and the main concern with themis they will start to push on the nerves to the eyes, to the optic chiasm as you saw ranright over the top of the space where the pituitary sits and you can start to have visionproblems from that. (dr. peter salgo)you had problems with cortisol.

(dr. peter salgo)there’s prolactin as you mentioned and there’s also growth hormone which the pituitary, makesan awful lot of very important stuff. how long did it take for you, from the timeyour symptoms started to the time you got a diagnosis? (gayle peterson)ten years. (dr. peter salgo)ten years. another very long period of time. (dr. edward vates)and not uncommon. (dr. peter salgo)and not uncommon.

all right. i want to pause for just a minute and sumup where we’ve been. pituitary gland tumors have many various differentkinds of symptoms and some, in fact, have no symptoms. even experts often misdiagnose the conditionor it can go undiagnosed altogether. so you got to pursue this diagnosis if you’reexperiencing life altering symptoms as you did in the face of doctors, perhaps, who aren’tpursuing it for you. persistence pays off. alright well now of course we’ll be talkingto you, gayle.

and it took ten years but you finally figuredout with your doctors that you had a pituitary tumor and cushing’s disease. but i want to introduce another case. now lisa, i want to tell you about patty. patty is thirty-three years old. and she’s in a motor vehicle accident. she’s treated at the scene by paramedics. we’re told by a bystander that she had beenbriefly unconscious at the scene. she has some bruises, injuries to her rightknee.

off she goes to the emergency department. you’re in the emergency department, what’sthe first thing you want to do and why? (dr. lisa harris)well first we want to stabilize her first and foremost. (dr. lisa harris)hopefully she was stabilized at the scene so you want to make sure that her vital signsare intact. certainly the abcs are the first things thatwe do, airway, breathing and circulation. you then want to assess her since she wasin an accident whether did she have her seatbelt on?

whether or not she had a head injury? one of the biggest things we worry about inmotor vehicle accidents are called head injuries. (dr. peter salgo)and she was unconscious so there’s at least a suspicion that she might have had a concussion. (dr. lisa harris)absolutely. so she’s going to. from my prospective she’s going to needan imaging study of her brain to make sure that she’s not bleeding. (dr. peter salgo)all right.

on exam she has multiple soft tissue injuriesand a fractured right knee. and they send her to ct scan. they were listening to you. and it does not show any intracranial injury. nothing wrong inside her head but it doesshow something else. a 0.9 centimeter pituitary tumor. (dr. lisa harris)on a ct scan. (dr. peter salgo)that she never knew she had. so now what?

(dr. andrea utz)well we call this an incidentaloma. meaning a lesion found when the scan was notdone to look at that area of the body. so she has been diagnosed with a pituitaryincidentaloma. i see plenty of patients just like her andthe first thing i do is i sit them down and i say you probably have a tumor in your pituitarygland but it’s extremely unlikely that this represents cancer. (dr. andrea utz)and i also say that this is not a part of your brain, this is a part of a gland, thepituitary gland. so then there’s instant relief that theydon’t have brain cancer because i think

a lot of times people are sent off with justthis report that they have tumor in their head and they think that they now have braincancer. so we look for any evidence that they haveany hormonal producing syndrome like cushing’s. and then also i think it’s very important,especially on these tumors that are borderline. and what i mean by borderline is we draw it,we as pituitary endocrinologists draw this cut off at ten millimeters as being a tumorless than ten is considered small. a tumor greater than ten is considered largeor macro. hers is borderline. so with these borderline tumors its possiblebut she may also not have normal function

of her normal pituitary gland, so hypopituitarism. it’s important to assess her for that. (dr. peter salgo)well while she’s in the hospital they call one of your friends and one of your friends,the surgeon and the endocrinologist both see her and they do some testing. and they do some blood tests, urine tests,and they find that everything is normal except for a borderline elevated prolactin level. what’s prolactin? what does that mean?

(dr. andrea utz)so prolactin is made by lactotroph cells. one of the primary reasons that we make prolactinis women make prolactin to lactate, so after they’ve delivered a child it’s an importanthormone and stimulating lactation. but sometimes you develop tumors in thesecells and then you have excessive production of prolactin. and the primary presenting complaint is usuallyin younger woman who say my periods have stopped. (dr. peter salgo)so basically she’s got a tumor in her head and she doesn’t know it. how common is that?

(dr. andrea utz)so estimates have suggested, autopsy reports have suggested up to ten percent of peoplemay have incidentalomas in their pituitary gland but we haven’t heard how high herprolactin is. (dr. peter salgo)just borderline is what i’ve got in the chart. (dr. andrea utz)just borderline. okay. so very critical not to absolutely diagnoseher with a prolactinoma yet. and it’s on the differential.

well she now has a known tumor. no symptoms she reports and relatively normalblood work. okay experts what do you want to do? (dr. edward vates)if she has no symptoms and it’s a mild elevation of prolactin that is not disrupting her menstrualcycle or her fertility, which is another important topic that we frequently discuss with patients. then there’s not much for us to make betterand treatment can make things worse. i’ll tell you what they do. they start patty on bromocriptine therapy.

what is bromocriptine? (dr. andrea utz)so bromocriptine suppresses prolactin production by the normal pituitary as well as from tumorsthat make too much prolactin. after three months the tumor didn’t change. similarly at nine, twelve and fifteen months. she keeps coming back to look at this. they take her off the bromocriptine and she’stold that they’re going to just keep watching it. now i don’t know about you.

if somebody says well you got a tumor in yourpituitary and its right there in the middle of your head but we’re not going to do anythingabout that. (dr. edward vates)one of the things that i always emphasize to patients is that surgery can make you worse. and if it can’t make you better why do it. often times what i’ll tell patients is youknow the good news is that you don’t need brain surgery. the bad news is that i don’t get to operateon you and i’m very disappointed. but i will get over my disappointment andyou will continue to go on and lead a normal

life as long as we keep a close eye on this. (dr. peter salgo)gayle, you’re surgery. how successful was it? (gayle peterson)it was very successful. they, he found a tumor in a crevice and tookit out and i’m. i’m feeling great. (dr. peter salgo)so let’s just take a look at this in the big scope of things. patty has a tumor found incidentally on act scan.

no symptoms. you have a tumor so small it doesn’t evenshow up on scan, huge problem. both are caused by the same gland, right,tumor in a gland. and different approaches to dealing with itbased on what the gland is doing. the difference is secreting versus non-secreting. functioning versus nonfunctioning tumor, right? (dr. andrea utz)that’s exactly right. and i want to make one point which is it iscertainly the best case scenario as in your scenario where you can remove all the tumorand that is certainly what we go for, for

functioning tumors like acromegaly, growthhormones secreting tumors and cushing’s disease tumors. but unfortunately there are patients who havelarge tumors or even small tumors that cannot safely be accessed through surgery and thenendocrinologists do need to treat with medical therapy and sometimes radiation therapies. (dr. edward vates)and you also really need experts. you need to be going to people who understandthe disease. (dr. edward vates)who understand the surgical techniques as well as the medical nuances.

and that’s why going to a dedicated pituitarycenter is really important. (dr. peter salgo)all right, let’s pause for a minute. pituitary gland tumor treatment is based onthe specific type of tumor and the symptoms that it is causing. there are lots of treatment options and treatmentas a rule is very successful if you get good folks operating, good folks taking care ofthe hormones, the endocrinology afterwards. i want to tell you a little bit more aboutpatty. its three years now after her motor vehicleaccident. after which she did not have a bleed.

(dr. lisa harris)thank you. (dr. peter salgo)and no traumatic brain injury. now she’s starting to notice changes inher vision. she goes to an ophthalmologist and the ophthalmologistsays she’s experiencing what’s called a visual field cut. what’s that? (dr. andrea utz)well first let me say that patty should have been followed with serial mris. (dr. lisa harris)right.

(dr. andrea utz)after this was originally diagnosed to watch for growth, so. (dr. peter salgo)well she was. we know that she had scans. (dr. andrea utz)okay. (dr. peter salgo)at three, five months. (dr. andrea utz)so if there was some evidence of growth certainly she needed to be followed and it was alsoimportant to determine from the start how close was this tumor to her optic chiasm meaningwas it very close, was it butting the optic

chiasm when it was found or did it ultimate. (dr. peter salgo)no. (dr. andrea utz)it obviously ultimately grew to get to that. (dr. peter salgo.) now patty’s got visual field issues. you going to send her to him? (dr. andrea utz)i am. (dr. peter salgo)so she’s coming to you, what are you going to do?

(dr. edward vates)that’s where you take the tumor out and the goal is, if you can, to take the wholetumor out safely. if you need to leave a little bit behind youdo but really you’re primary directive is to get the optic nerves out of trouble. to take enough of the tumor out that the pressureis gone, the nerves are not being compressed and when you can do that vision, quite often,is restored. (dr. peter salgo)okay, again i think it’s important to understand this. the problem here is not necessarily with thetumor.

that is to say that it’s not producing hormones. (dr. edward vates)right. (dr. peter salgo)its not producing acromegaly or cushing’s, now it’s the physical pressure. (dr. peter salgo)of this mass on the optic. (dr. edward vates)and that’s why. (dr. lisa harris)which is an important distinction why we didn’t operate initially it wasn’t creating a problem. it was just kind of there.

well patty did have surgery. she is recovering at home and what is therecovery process from this kind of surgery. (dr. edward vates)the tumor that we saw that was quite large there, the patient went home the next day. she actually had a very gratifying returnof vision within a couple of weeks. she was back to work within, i believe, itwas five weeks and often times as patients really have a very rapid recovery that allowsthem to go back to their normal lives. gayle, how are you going? (gayle peterson)i’m doing great.

thank you. (dr. peter salgo)how long has it been since your surgery by the way? (gayle peterson)it will be three years. (dr. peter salgo)three years. and you’re feeling alright? i am. i’m down on my meds. my.

i’m only taking one diabetes medicine rightnow and they say that the diabetes was caused because of the cushing’s and that shouldgo away totally. (dr. peter salgo)so it’s slowly going back to where it should have been. everything’s slow. i mean it took ten years to get there so it’sgoing to take a little time to get back. but just the cortisol and the initial recoveryperiod was a good two to three months getting the cortisol out of my muscles to get thoseback to normal. (dr. edward vates)and that’s a critical point for this too.

these patients, like gayle, who have changesthat build up over years, will have a recovery process that also takes years. and you need to balance their hormones andsometimes give them some hormones and sometimes not replace hormones. that’s also something that really needsto be shepherded over by an experienced endocrinologist. (dr. andrea utz)and it’s a very important point to make that unfortunately even if someone, i actuallyuse the word remission with cushing’s to say that when we do biochemical testing aftera person has had their surgery and everything looks good, they’re cortisol levels arelow, unfortunately sometimes there are a few

tumor cells still left within the pituitaryand it’s important to follow them for the rest of their life for the possibility thatthey may have a recurrence of the cushing’s syndrome. (dr. peter salgo)i think i can speak for all of us here that we’re just thrilled that you’re doingwell. (gayle peterson)well thank you. (dr. peter salgo)and i want to thank you so much for joining us and sharing your story with us. with that we are out of time.

i hope you continue the conversation on ourwebsite and there you’re going to find a transcript of this show, more videos aboutpituitary gland tumors and links to resources. the address is www.secondopinion-tv.org. thanks for watching. thank all of you for joining us, and especiallyyou for sharing your story. i’m dr. peter salgo and i’ll see you nexttime for another second opinion. by the blue cross and blue shield association,an association of independent, locally-operated