Lola's tentative pheo diagnosis

[Erika L.]

Hi,

I'm thrilled to have found this group as it seems like such an informed, helpful and loving group of people.

Lola is a 6 year old bulldog and the light of my life. She is perfectly healthy, happy and energetic (no symptoms of anything). On Christmas Eve I received a shocking call from my vet telling me Lola had a large tumor on her adrenal gland. Since then we have done several tests and talked to several docs (internists, surgeons, etc)
and here are the "facts" about what we know/don't know.

- We can't do the full biopsy needed because of the dangers associated with surgery.
- It "looks" like a pheo on the ultrasound.
- An experimental blood test (they have a pretty good track record) done at UC Davis suggests it is NOT a pheo.
- A low dex test has shown that it is not Cushings or a cortisol producing tumor.
-- Despite the good news from Davis, Lola's vets aren't convinced it is not a pheo...they suspect it is but admit that they really just cannot know for sure.

The surgeon has told me (and it has been confirmed by another surgeon) that Lola's best bet for survival (and to really understand what this darn thing is) would be to have this thing out BUT her chances of surviving the surgery are a little bit better than 50/50. And realistically *if* she survives the surgery, *and* the cancer doesn't return, etc. I can expect it to extend her life roughly 1 to 1.5 years.


Given that Lola is perfectly healthy, happy and energetic in every way. I just cannot bear the idea of taking her in and having her die on the table. The surgery seems to be a HUGE gamble with what is currently a "perfectly healthy" life.... for a relatively small payoff. Compounding the decision is that they really don't know WHAT this is and have said that there's an outside chance it could be a benign mass.

For a month now I have been beside myself with worry, grief, and confusion. I don't know what sort of advice, if any, I'm actually looking for, I just know that the people I have seen here will understand what I'm going through and hopefully will be able to provide hope, strength, information, experience and mostly support during what I anticipate to be a very rocky road that lies ahead.

I'm sorry this is so long, I'm just trying to balance so much information and it all seems excruciatingly relevant .... and yet so iffy and vague.

Erika

[molly muffin]

Hi Erika and welcome to you and Lola.

University of Davis has a pretty good track record with cushing and adrenal tumors, diagnosis, etc. We actually have another member who is going there currently for her dog, that is being treated with radiation for a pituitary tumor (large). Has Davis given any kind of recommendation on what they think it is?

Another of our members dog also currently has a mass on adrenal gland and they are monitoring with ultrasound and Blood Pressure readings and will make a determination on what to do based on what the tumor dose. Her thread is here if you want to read it: http://www.k9cushings.com/forum/showthread.php?t=5904

Speaking of Blood Pressure, often with a pheo you will have fluctuations with blood pressure where it periodically will go up, when the tumor is having an active moment. They aren't active all the time. Kim one of our administrators has experience with pheo's, as does Trish one of our members whose dog Flynn has been through the surgery for removal.

I'm so glad you found us as the worry can be quite overwhelming and a diagnosis of a tumor, very traumatic. We're a great support group here and you aren't alone on this journey.

Sharlene and Molly Muffin

[goldengirl88]

Welcome to you and Lola. I am so sorry you are going thru the ordeal of finding out if your Lola has a Pheo or not. My Tipper has an adrenal tumor that we check every 2-3 months to see if it has grown. Thank God so far it hasn't. Maybe you could do the same by getting your baby checked with a high resolution Ultra sound every so often. I am still not 100% convinced that my Tipper does not have one, but it is encouraging that is has not grown. It could simply be an adenoma. None of this is easy, and none of it is cut and dry. There are always so many twists and turns you kind of have to roll with the punches. It is a shame things aren't more black and white. I hope for both of your sakes it is not a pheo. If it turns out to be one you will have to decide what to do then. I do not want my dog to have to undergo the operation either as I feel she has too many other issues that would make for a bad outcome. I am just in limbo and every time I take her to get the tumor checked I have a knot in my stomach as to what they will come out and tell me. Kim on here is a wonderful resource as her dog had a pheo. So she is really in the know about all things concerning them. I hope things work out for you and Lola. Blessings
Patti

[Renee]

I am wondering what even led to the diagnosis of the tumor.. if your girl is happy, healthy, and no issues? Why was she taken to the vet in the first place? Why was an ultrasound done? What prompted this in the first place?

[Trish]

Hi Erika

Welcome to you and Lola :) we will try and help you as much as we can negotiate your way through this.

You asked for some hope, I can give you this :) My dog Flynn had an adrenalectomy for a pheo 14 months ago. He has no sign of it coming back confirmed by his surgeon that removed a liver mass late November which was not related to the pheo. He said his insides were clean with no sign of recurrence so that was a big relief! I am going to go through your post and add a few questions and comments.


Hi,

I'm thrilled to have found this group as it seems like such an informed, helpful and loving group of people.

Lola is a 6 year old bulldog and the light of my life. She is perfectly healthy, happy and energetic (no symptoms of anything). On Christmas Eve I received a shocking call from my vet telling me Lola had a large tumor on her adrenal gland. Since then we have done several tests and talked to several docs (internists, surgeons, etc)
Why did she have the ultrasound done if she was so well, was there something going on and that you suspected a problem and did the scan? How big is the tumour? What side is the tumour - left is easier to operate on but never fear Flynn's was on the right and his was ok. Any sign of local invasion?
and here are the "facts" about what we know/don't know.

- We can't do the full biopsy needed because of the dangers associated with surgery.
Yes indeed, unfortunately the adrenal gland where it is located makes biopsy a tricky procedure.
- It "looks" like a pheo on the ultrasound.
Often they get a pretty good idea of the likelihood of the tumour type, a pheo is usually seen arising from the medulla of the gland.
- An experimental blood test (they have a pretty good track record) done at UC Davis suggests it is NOT a pheo.
I would be real interested to hear the specifics of that test, there are urine tests that have been done on dogs, but studies do not have many participants to it is difficult to just rely on them. We have had quite a big discussion on testing for pheos on Snug's thread which is the one Sharlene has copied above. UC Davis is a well respected institution so it would be great to hear what they are doing. Was Lola seen by them or was the blood test just sent there?
- A low dex test has shown that it is not Cushings or a cortisol producing tumor.
Same as Flynn, he had two of these and suppressed on both. But Kim, another member here had false positives on her pheo dog Annie who ended up with the pheo diagnosis.
-- Despite the good news from Davis, Lola's vets aren't convinced it is not a pheo...they suspect it is but admit that they really just cannot know for sure.
That is the difficulty with diagnosing these tumours, often they can only tell for sure is by taking it out and looking at it under a microscope.

The surgeon has told me (and it has been confirmed by another surgeon) that Lola's best bet for survival (and to really understand what this darn thing is) would be to have this thing out BUT her chances of surviving the surgery are a little bit better than 50/50. And realistically *if* she survives the surgery, *and* the cancer doesn't return, etc. I can expect it to extend her life roughly 1 to 1.5 years.
Are these board certified surgeons? If surgery is proposed you need the big guns that have a lot of experience with adrenalectomy. If you get to that stage I have a list of questions that might help you when you are speaking with them. 50/50 seems kinda high to me, the studies I have seen have success rates 80/20. Flynn's tumour was invading his vena cava and that makes it more tricky. We have had several dogs have this surgery successfully (not always for pheo) but unfortunately we have had a couple not make it and that has been very sad. I would also respectfully disagree with the prognosis of 1 - 1.5yrs after surgery, they can do very well for a number of years following this surgery and Lola is young too which would stand her in good stead. I have info to back this up if you would like it.
http://www.vetsurgerycentral.com/oncology_adrenal_tumors.html (http://www.vetsurgerycentral.com/oncology_adrenal_tumors.html)
http://www.vsso.org/Adrenal_Pheochromocytoma.html (http://www.vsso.org/Adrenal_Pheochromocytoma.html)

Given that Lola is perfectly healthy, happy and energetic in every way. I just cannot bear the idea of taking her in and having her die on the table. The surgery seems to be a HUGE gamble with what is currently a "perfectly healthy" life.... for a relatively small payoff. Compounding the decision is that they really don't know WHAT this is and have said that there's an outside chance it could be a benign mass.
That is something you really have to be at peace with before going into any surgery for Lola. I told myself if Flynn died during surgery at least it would be quick and he would die peacefully, but you do have to weigh it all up and considering she is well now, but that would be one of my questions to your team... if we do nothing how soon would be expect to see deterioration in her condition?

For a month now I have been beside myself with worry, grief, and confusion. I don't know what sort of advice, if any, I'm actually looking for, I just know that the people I have seen here will understand what I'm going through and hopefully will be able to provide hope, strength, information, experience and mostly support during what I anticipate to be a very rocky road that lies ahead.
Well it is lucky you have found us then!! What is the plan for Lola at this stage?

I'm sorry this is so long, I'm just trying to balance so much information and it all seems excruciatingly relevant .... and yet so iffy and vague.
Don't worry about how long it is, some of us are more long-winded than others :D:D they are all acceptable though especially when you are trying to get info on your sweetie Lola!


Erika

Hope this helps in some way, please come back and ask any questions and we will do our best to help you and Lola
Trish :)

[frijole]

Hello! My Annie had a pheo tumor as well. I am interested in knowing location and size... We have seen before where huge wasn't really huge.

My story is different than Trishs because 4 yrs ago very little was known about pheos. It took me over a year and firing 4 vets before we figured it out. My girl by then wasn't a good candidate for surgery. However she lived with the tumor for two years and her quality of life was good. What did her in wasn't heart failure as I predicted, it was loss of muscles in the legs. She lost so much weight and fought Hard, she justs lost the use of her legs over time.

Feel free to click on our profiles to read our long stories. Glad you are at Davis ! Kim

[Erika L.]

Gosh, it was great to come home to all these responses. I will try to answer your questions. I'm not exactly sure how to respond to each person directly but I'll address some of the things you have asked.

- I originally took her in because of some small lumps on her nipples. Since Lola was a puppy she has had a very full vulva and enlarged nipples. She always looks as if she is heat or has recently had puppies. It's all just part of being Lola. However she developed small lumps on several of her nipples that make her skin look like the surface of a raspberry. The biopsied them and they are benign BUT they wanted to see what was going on internally (was some bit of tissues missed when she was spayed? or was there an issue with her kidneys?). This is when they found the tumor.

-The tumor showed on the ultrasound. It is about 1 3/4". They did a fine needle aspiration but didn't get many cells and they were fearful of being more aggressive because of the vascularity of the area.

- Chest Xrays, blood work, etc. are all very normal. They do not believe that the cancer has moved to the VC or surrounding organs but they cannot be sure without actually doing surgery.

-The test at Davis is brand new research done over the last few years and the study was published in 2013. Apparently it has been adapted in tests used in humans. It has successfully been done on horses for several years, and some of the folks in the endocrinology dept. have been adapting it for dogs. The research is very new but promising. When I talk to Lola's vet I'll try to get more specific information about it...but it theoretically has the capacity to rule out pheos...and according to the test Lola's was NOT a pheo...but the surgeon (board certified) and other specialists are not fully convinced.

-Lola is currently on a "wait and watch" which includes me monitoring her behavior and then going in every couple of months for additional ultra sounds to see what, if anything, the tumor is doing.

-The summary I have received from all the docs involved is that they strongly suspect it is a pheo but they can't really say ANYTHING for certain.

I'm trying to be strong and focus on the dog I have before me and not project into the future and worry about the myriad of possibilities and outcomes...but it is hard. Some days I'm pretty good with it, some days I just lose it.

[Erika L.]

Oh, and the tumor is on the right adrenal :(

[Erika L.]

One question for those who have lived with pheos. The doc has me on the lookout for symptomatic behavior (ravenously hungry or thirsty, lethargic, etc.). Since Lola is an English Bulldog she is always extremely hungry or thirsty and has a tendency to fluctuate between lethargic and ridiculously hyper (which causes her to pant a lot). When I mentioned this to the vet she told me, "You are looking for behaviors that are uncharacteristic for her. You'll know them when you see them."

Do those of you who have dealt with this condition agree with her assessment. As it is anytime she begs for food as if she's starving to death (completely normal for her), is taking a nap, or begins to pant after playing, I get a sick feeling in my stomach and wonder if this is actually something I should be "noticing".

[Renee]

I have pugs, and much like english bulldogs, they are ALWAYS hungry. And can be very lethargic all day and night. Even so, I could tell, and I think you will be able to tell too. Just watch the subtle differences. My girl never, ever bit me to get food... when her cushings was very bad untreated, she was so hungry, she would bite me taking a treat. And she started getting in the trash (or trying to), which she never did before.

[frijole]

One question for those who have lived with pheos. The doc has me on the lookout for symptomatic behavior (ravenously hungry or thirsty, lethargic, etc.). Since Lola is an English Bulldog she is always extremely hungry or thirsty and has a tendency to fluctuate between lethargic and ridiculously hyper (which causes her to pant a lot). When I mentioned this to the vet she told me, "You are looking for behaviors that are uncharacteristic for her. You'll know them when you see them."

Do those of you who have dealt with this condition agree with her assessment. As it is anytime she begs for food as if she's starving to death (completely normal for her), is taking a nap, or begins to pant after playing, I get a sick feeling in my stomach and wonder if this is actually something I should be "noticing".

Annie's symptoms included lethargy at times but the ones that were most noticeable were full body shaking (like shivering) - it came and went. I now know it was because the tumor was active (they are usually dormant and when they excrete the 'adrenaline' they are active). At times she panted heavily and on about 5 occasions in 2 years her heart raced so fast and her breathing was so fast I could not simulate it myself.

After the episodes I noticed her skin was bright pink/reddish. (blood flow) and her skin was damp (sweat) She usually napped or laid with her eyes closed afterwards. (I read they could get migraines from the blood rush)

She also would not eat. She wanted to but it was as if she had nausea. She would run to the bowl take a bite and spit it out or sniff and turn her head. She would usually eat a different type/flavor of dog food after several attempts and she ate well then. But there was no pattern I could ever find of why she wouldn't eat that particular flavor that day. I often opened 5 different flavors of dog food in a day. She quit eating all human foods she used to love like cheese, peanutbutter, eggs - you name it. It was quite stressful.

That and the adrenaline caused her to lose weight. She went from 18 lbs down to less than 11 lbs. She was a walking skeleton. she also lost alot of her hair - I didn't notice it at first - I thought the groomer was shaving her too close.

She too had an enflamed vulva. That and the hair loss I believe are from elevated sex hormones as a result of the pheo.

Re the test you described to rule it a pheo - we have read about it and some have had it done. I think the reason the vets are still not convinced is because they have found that it isn't 100% accurate.

In the early stages my dog was a very normal looking dog also. My only signs were the full body shaking and then I noticed the skin/sweat. That and the heavy panting (more than normal) would be what I would be on the lookout for.

That said - I don't think Trish's Flynn had the same symptoms that I did. Hang in there - it is a tough journey but at least there are some of us with experience now. 4 years ago I about drove this board crazy (she was misdiagnosed as having cushings)

Take care, Kim

[Erika L.]

Renee, Lola's "brother" is 1/2 Pug and 1/2 English bulldog. He looks like a giant pug with a very broad chest. He's a handsome guy. :). Pugs are the most wonderful little spirits. Is that her in your meme? She's adorable. I'd like to put Lola's pic up as mine, where do I go to upload her?

These examples of abnormal behavior make a lot of sense; things big or small that just register as abnormal, odd, or just out of character. I'm pretty certain that right now I'm over analyzing everything I see.

[frijole]

Annie is the one in the background. Haley is in the front. Haley had cushings and that's how i found this group over 8 yrs ago! Sigh.. I understand over thinking things. :) Hang in there.

Here is a link on how to post a photo/create an avatar. Kim


http://www.k9cushings.com/forum/showthread.php?t=5555

[Erika L.]

I have pugs, and much like english bulldogs, they are ALWAYS hungry. And can be very lethargic all day and night. Even so, I could tell, and I think you will be able to tell too. Just watch the subtle differences. My girl never, ever bit me to get food... when her cushings was very bad untreated, she was so hungry, she would bite me taking a treat. And she started getting in the trash (or trying to), which she never did before.


Annie's symptoms included lethargy at times but the ones that were most noticeable were full body shaking (like shivering) - it came and went. I now know it was because the tumor was active (they are usually dormant and when they excrete the 'adrenaline' they are active). At times she panted heavily and on about 5 occasions in 2 years her heart raced so fast and her breathing was so fast I could not simulate it myself.

After the episodes I noticed her skin was bright pink/reddish. (blood flow) and her skin was damp (sweat) She usually napped or laid with her eyes closed afterwards. (I read they could get migraines from the blood rush)

She also would not eat. She wanted to but it was as if she had nausea. She would run to the bowl take a bite and spit it out or sniff and turn her head. She would usually eat a different type/flavor of dog food after several attempts and she ate well then. But there was no pattern I could ever find of why she wouldn't eat that particular flavor that day. I often opened 5 different flavors of dog food in a day. She quit eating all human foods she used to love like cheese, peanutbutter, eggs - you name it. It was quite stressful.

That and the adrenaline caused her to lose weight. She went from 18 lbs down to less than 11 lbs. She was a walking skeleton. she also lost alot of her hair - I didn't notice it at first - I thought the groomer was shaving her too close.

She too had an enflamed vulva. That and the hair loss I believe are from elevated sex hormones as a result of the pheo.

Re the test you described to rule it a pheo - we have read about it and some have had it done. I think the reason the vets are still not convinced is because they have found that it isn't 100% accurate.

In the early stages my dog was a very normal looking dog also. My only signs were the full body shaking and then I noticed the skin/sweat. That and the heavy panting (more than normal) would be what I would be on the lookout for.

That said - I don't think Trish's Flynn had the same symptoms that I did. Hang in there - it is a tough journey but at least there are some of us with experience now. 4 years ago I about drove this board crazy (she was misdiagnosed as having cushings)

Take care, Kim

Gosh Kim that sounds just awful. It seems like a pheo is one of the worst things a dog can be diagnosed with. I'm so thankful to have found a support group as none of my friends have ever heard of it and are obviously confused about what to say or what kind of advice to offer.

Was Annie's swollen vulva something she had all her life? When I told the vet that Lola's has been swollen since she was about 6 months old she speculated that there was a chance that the tumor has been there since she was a puppy; she didn't think it was likely, but it was possible.

[Trish]

One question for those who have lived with pheos. The doc has me on the lookout for symptomatic behavior (ravenously hungry or thirsty, lethargic, etc.). Since Lola is an English Bulldog she is always extremely hungry or thirsty and has a tendency to fluctuate between lethargic and ridiculously hyper (which causes her to pant a lot). When I mentioned this to the vet she told me, "You are looking for behaviors that are uncharacteristic for her. You'll know them when you see them."



Hi Erika - if you go back to the first page of Flynn's thread I go over the symptoms he had when first diagnosed http://www.k9cushings.com/forum/showthread.php?t=4242

I had written.... "Flynn had nondescript symptoms that included weight gain we thought because of his ravenous appetite so put him on a diet, less energy, panting when stressed ie if we were eating, lipomas removed a year prior but mainly all back again, pot belly, shaky like a lot of foxies and he has always done this but it is much more pronounced, not so good at jumping"

Another big one for him was hypertension, caused by the cathecholoamines like adrenaline that the pheo secretes. They can do this even when they are teeny tiny which made his diagnosis difficult, he had four scans including a CT before they finally found it and in that year to 18 months it had grown into his vena cava. Don't worry too much about it being on the right, our surgeon said that while it is a bit more fiddly to get to the right side and remove, it did not impact on mortality in the cases he had done :)

I had a google on that UC Davis study you mentioned that was published last year and wonder if this is the one, Dr Feldman who is known here by a few of the members is one of the authors: http://onlinelibrary.wiley.com/doi/10.1111/jvim.12027/full it will be interesting to hear back from your vets if this is the blood test they are used. The full study is available to read, but it is a fairly heavy going :eek: . But interesting nonetheless! Plus it is great to see more studies coming out that will help with diagnosis of adrenal tumours. I saw it was first presented at a veterinary conference in 2006, so the info has been around a while but it still does not seem to be routinely used by specialist vets and I wonder if it is because of the small numbers in the study.

[frijole]

Erika, I have to be out today but wanted to get back to you just to let you know that while those symptoms sound just awful I feel Annie's quality of life was quite good despite. Otherwise I would have let her go earlier. I never heard her whimper or whine as if in pain. I think it was harder on me than on her. There are other potential pheo candidates on the forum right now that are going through the same thing so you truly are not alone. Hang in there, Kim

[Erika L.]

Trish, although I can't remember the names of the authors or the study itself, this looks to be the one. And yes, I think the small sample size is one of the stumbling blocks for the reliability of the study. I was very pleased about having the test for Lola not just for what it could tell us about her, but I'm fairly certain that they will be using her results to help further the study. If she has to go through all of this, the knowledge that it can help further this important research is nice.

Kim, I'm super heartened to hear about quality of life with this dreadful disease. Of course the most I can hope for is that this isn't what it appears to be an it's some innocuous blob. But, if that is not the case what I want most for Lola is quality of life: whether she has 8 months, or 8 years of it.

In the past I have gone through 'heroic gestures' to save my animals. Of course hindsight is always 20/20, but I think in some cases I made their lives worse rather than better while they were here. I have already had discussions with some close friends who also love Lola. I have asked them to be very honest with me about what they see in Lola's quality of life as time goes on. I can't quite bear to write why as my eyes are brimming with tears right now, but I'm sure you get it.

[Kenai's mom]

I can definitely relate, as I have just learned that what I thought was Cushing's is actually pheo. (Incidentally, I am very glad to have found a forum where pheo is being discussed.)

My Kenai, a 14-year-old husky mix, has a tumor on his right adrenal gland. This was discovered over 2 years ago via ultrasound. Based on the results of his "Tennessee adrenal panel" (done at UT Knoxville), I received a diagnosis of atypical Cushing's.

His primary symptom then was weight loss. He weighed about 45 pounds and was losing weight at a rate of 3 pounds per month. When he practically stopped eating altogether, I earnestly began my quest for answers.

Fast-forward to now. His primary symptom is frequent urination. The ultrasound shows that the tumor and right adrenal have both enlarged since the ultrasound 2 years ago. (...a bit disappointing, since his 6-week follow-up ultrasound -- 2 years ago -- had shown that the tumor had shrunk). The low-dose dex indicated that his condition is not Cushing's. So the internist ordered a urine cortisol/creat ratio test to help determine whether the tumor is Cushing's or pheo. And the answer is pheo.

However,... the internist is not convinced that the pheo is the cause of the frequent urination. So today we have an appointment with their Chief of Surgery.

...and the saga continues.

Like yours, my dog is very happy and energetic. My neighbors are amazed when I tell them about his condition, since he looks so healthy,... especially for a 14-year-old.

I wish you well in your journey for answers. Each day is a gift to be treasured.

[molly muffin]

Hello Kenai's mom. I sent you a PM, but I wanted to let you know that I also copied your post into a thread of your own, where you can update and ask questions that are specific to Kenai if you like.
We have several dogs currently with pheo diagnosis. One who has had surgery our Flynn and Trish, and an administrator Kim, whose Annie, did not have surgery, but lived many years with the pheo.

It can be found here:

http://www.k9cushings.com/forum/showthread.php?t=6058

welcome to the forum.
Sharlene and Molly Muffin