The Sucker Punch of Unexpected News

Posted on 04/30/2012 by Caren Rugg

When Terry met with his endocrinologist earlier this month she ordered a sonogram to look at his throat where the thyroid was located before it was removed due to thyroid cancer two years ago. We really felt it was just a routine follow up that was not unexpected due to the passing time frame. What wasn’t routine or expected was the news we received as a result.

At the time of the thyroid cancer in early 2010, the mass that was discovered on his left adrenal gland was eventually diagnosed as a pheochromocytoma. This pheo is typically diagnosed in conjunction with high blood pressure, which as a cardiac patient with significantly damaged heart tissue, Terry does not have. He does have a history of a pheo now, so I suspect they will monitor that in his future. It turns out they’re monitoring it now, and the lab specimen came back with an abnormal reading. She wants him to do the 24 hour urine collection specimen again, which is much more reliable as an indicator. I hope she is coordinating that with the doctors he will see in May for the bladder cancer.

Even more unexpected, and the real sucker punch to the news was that they discovered a nodule on his lymph nodes when they did a sonogram of his throat. That cancer had not been a fast growing cancer, and had not been present in the lymph nodes when the thyroid was removed. Now that he’s had the subsequent diagnosis of bladder cancer I don’t suppose we can assume it’s thyroid cancer, if it turns out to be another malignancy. We don’t know anything for sure at this point, but we’re both pretty sure there shouldn’t be anything there.

On May 11 he has an x-ray, a scan, labs, and two doctor appointments. I’ll contact the endocrinologist’s office this week to see if there’s anything that can be coordinated with them that can be done at that time. We won’t know anything for sure about anything until well after that, so it will be another waiting game. Those are never any fun, and when you weren’t expecting to play the game to begin with, it seems even longer than it is.

Terry’s expression when I conveyed the information from the phone call said he was not happy with the news. I worry about him if this is the new trend for us…if he can’t get ahead with one medical issue before a repeat medical issue starts demanding attention again, it’s going to be an even tougher battle. I’m trying not to get ahead of the situation, but we were not anticipating the potential for bad news. We realize and acknowledge that he will have to go through lots of diagnostic testing in the future to ensure nothing bad is making a comeback, but given the type of thyroid cancer it was we didn’t expect a recurrence. And we don’t know that it is. We just know how it should be. It should be nodule free. We’ll soon see.

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What a Difference a Day Makes

Posted on 10/11/2011 by Caren Rugg

I stand corrected…two days ago I was bemoaning the fact that Terry had to go to KU Med for a bladder scope after he had started treatment for a UTI with a long course of antibiotics. The urologist had already told us he felt there was little to no chance of cancer, based on the symptoms Terry was describing. Imagine his surprise, and ours, to find out there was cancer already established in his bladder.

He should have a single surgery to remove the masses in a week and a half, and they will then insert a chemotherapy into the bladder post surgery. Should it all go as planned, it will be an outpatient procedure, and I will bring him home that evening. It does appear that he will need to have his bladder scoped every three months which he’s not looking forward to much, but will do to make sure it doesn’t come back.

It was an interesting conversation afterward with the urologist. He was genuinely surprised to find a malignancy occurring when he legitimately thought cancer was not a possibility. Finding it validated why I had gotten him an appointment when 3 other doctors he’d seen had not made the referral. I understand that at first glance his symptoms belied the true origin of what they were. Thankfully, as the urologist stated, his training included doing the scope that was performed on Terry. He told me some patients cancel because they don’t like the procedure, which is understandable, but it is his responsibility to do what needs to be done, not what they’d like done. His prudence paid off where Terry is concerned.

We have every reason to believe all will turn out fine, but I can tell the continual stream of bad news health wise is taking an emotional toll on Terry. He’s never easily or quickly diagnosed, and he’s been through so much already. It’s that emotional strain on him that I worry about. He has never been good about effectively dealing with his inner turmoils, and that can and does have a negative impact on his physical health.

Yesterday was a surprise, and now after 24 hours to process I know he will get through this and we will go on to see what else comes our way. It’s an affirmation for me that I made the right decision to be at home with him. We can only live the life and make the memories we can make now. We have to be confident that everything we do now will make the future easier. For all of us. It’s the only way we can live.

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Is This Really Necessary?

Posted on 10/10/2011 by Caren Rugg

The labs came back on Terry’s blood work, and he does have a urinary tract infection that is being treated with a 90 day course of oral antibiotics. Because they identified the cause of the blood in his urine as the UTI, we were surprised to find out he is still scheduled to have his bladder scoped tomorrow afternoon. While I obviously want them to find anything that is medically wrong with him before it becomes a major health threat, I am starting to question how much is done in the name of effective diagnosis, and how much is done in an attempt to prevent liability suits from being filed.

I understand if there is a risk of cancer, given his history, that it may make them want to conclusively rule out its potential. I get that. But if they’re concerned about cancer in the bladder or urethra that would encourage them to do more comprehensive testing, why are we not aware of their concern? It’s a frustrating dance we dance of too much unnecessary or repetitive testing that they want, and not nearly enough of what we think would narrow in on his problems. Because of his Medicare and supplemental coverage, doctors are all but guaranteed to get reimbursed for their services. I don’t want to start traveling down the road of cynicism, but it’s harder all the time to consider all they do as strictly in Terry’s best interests.

When I take a step back and try to look at the situation objectively, I’m forced to admit that of all the medical events he’s been through, not one of them was easily or quickly diagnosed. From that perspective I should be glad they are doing too much if it means they stumble on to something that may truly be problematic for him. That’s how the pheochromocytoma and thyroid cancer ended up being diagnosed. As a result, I know I shouldn’t complain. Doctors have gotten lucky when we’ve needed them to be. Evidently I’m thinking skill and expertise should trump luck.

We’ll have to see where it goes tomorrow. Chances are (hopefully) that they won’t find anything. We’ve been surprised before, but maybe the surprise this time is they don’t find a problem or additional health risk to monitor and follow. It COULD happen….

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Starting the Search Again

Posted on 09/26/2011 by Caren Rugg

Terry had an appointment today with the urologist. He’s been having some blood in his urine that continues to come and go. They did labs and a urine sample, and he’ll go back in a couple of weeks to get scoped and look up into the bladder. Hopefully we’ll hear back fairly quickly on the PSA, and whether it’s elevated from last year. They’re leaning towards chronic inflammation, or prostititis as the culprit, but have to rule out the chance it’s cancer in the bladder or urethra.

Interestingly, as we waited for the doctor to come in I was reading a magazine article talking about the increasing number of patients who cannot get a conclusive diagnosis. There are approximately 23 million Americans who cannot get an accurate diagnosis of their medical problem. I know that Terry has never had a condition that was easily or quickly diagnosed, but the number 23 million seemed staggering to me.

That’s 23 million people, as well as the people around them, who are dealing with chronic health problems of an undiscovered cause. I know the frustration we’ve endured trying to get a diagnosis, or at least an idea of the cause of Terry’s vomiting. I know that when they’ve been unable to tell us what he’s experiencing, they’ve attempted to deflect their inadequacies at diagnosis by making it Terry’s fault. If they can’t figure it out, it must be because it’s psychosomatic, or all in his head. I had no idea there were so many other Americans out there dealing with the same disruptions in their lives, not knowing why something was happening to them. It’s the type of club you shouldn’t want to join.

It’s a sad commentary, in light of what health care costs are in this country, that there is such a level of substandard care. The article listed 3 reasons it’s difficult to get a diagnosis in difficult cases. One is the result of medical school training that says to look at the most common reasons for the symptoms being exhibited. It also talked about a reliance on labs and testing, and finally, the overuse of specialists. It’s easy to see how the that trio of actions can work together against the patient if it’s a rare or unusual condition. If doctors only look at what labs and testing can tell them, and if specialists only consider their discipline, it’s going to limit options. When a doctor only considers those conditions that are more common, it’s hard to get that thinking out of the box.

I’m sure there are no easy answers, but I do know that it requires extra vigilance on those who have health concerns, and those who care for them, to keep pushing until the diagnosis is made, and correct. There is no hope for effective treatment when you don’t fully understand what you’re treating.

So as we enter yet another phase of finding out what we’re dealing with, I encourage you to keep pushing when necessary, to get the answers you or someone close to you needs. We have to advocate for ourselves and the ones we love when it comes to health. There is nothing more important than your health, and nothing more worthy of your time than making it all it can be.

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Doctor, Doctor Give Me the News

Posted on 05/09/2011 by Caren Rugg

Terry had a follow up appointment with the cardiologist two days ago. Dr. Brown has been really good about seeing him more often post thyroid cancer and pheochromocytoma, so it was a chat about how things are going. It truly is hard to know how much those two separate conditions played into his overall cardiac health, so I have appreciated the additional visits with him.

It has been frustrating, however, that he has not been willing to consider how the nausea and vomiting that have occurred for almost seven years might be tied to his cardiac condition. After some discussion regarding theoretical causes, he was willing to consider a problem with either a blockage or potential limited blood flow to his intestinal system. Dr. Eck, his endocrinologist, has supported that idea with us, so we were able to secure a referral for a dye contrast scan to look at blood flow.

He gets that scan on Tuesday, the 10th of May. That gives us the opportunity to get those results to KU Med for his appointment with the GI department the following week. It was the vomiting that prompted the referral to KU Med last year, but once they found the other problems the vomiting issue went to the bottom of the heap. Discovery and treatment of the two conditions last year did not have the additional benefit of eliminating the nausea and vomiting, so we have hopes this test may yield information. There has to be a physiological cause. End of discussion. Just because they have not determined what it is yet does not mean it is not real.

All things considered, his cardiologist is pretty encouraged he’s doing as well as he is. Terry did admit to him, and had not admitted to me, that he’s noticing he’s getting winded and needing a break if he’s out in the garden or trying to work on something for 30 minutes or more. There have been several times when I felt he was breathing harder than usual, but he always minimized any concerns. Listening to him confess to the cardiologist confirmed what I’ve noticed. He’s not having much swelling to his hands or feet yet, so I hold onto that piece of good news while we have it.

While it won’t surprise me, it will be disappointing if we find out his nausea is a by product somehow of his cardiac disease. I realize everything he’s gone through has been difficult to diagnose, which I reminded Dr. Brown, but I have pushed hard on the cardiac side of things for answers for a while now, and we could not get any doctors, much less the cardiologist, to consider the connection. As long as we finally get some answers I’ll forgive him if it turns out to have a cardiac component. We just need to know.

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Does Quality of Life Matter?

Posted on 05/02/2011 by Caren Rugg

After Terry had a three day hospitalization earlier this month, we have decided it’s time to ramp up the diagnostic end of things again. The hospitalization was for the extreme vomiting, which we truly had hoped would abate in time after his surgeries last year. It has not. Apparently we are no closer to understanding this than we were in November, 2004 when it all began.

To that end we are headed back to the GI Department at KU Med next month. There’s a part of me that thinks we need a predetermined amount of time we will invest without answers, and then request the referral to Mayo Clinic. I had originally believed if we found out the problem locally it would make whatever treatment was deemed appropriate easier if it was all within the same facility. That no longer is a concern for me. I, and the rest of our family just want answers. It has impacted all of our lives for too long, and has taken too much of a toll on Terry to go through this so often. Aside from those considerations, we would just like some semblance of normalcy in our lives. With recurrent vomiting that presents the possibility every day, his, and by association, our qualities of life have suffered.

He’s awakened early each day with discomfort that leads to pain, and pain that leads to eventual nausea. Whether he ends up getting sick or not is anyone’s guess, and we never quite know until he starts feeling like he’s past it whether it will go away or lead to the uncontrollable vomiting. As a result, he’s uncomfortable riding in the car for very long, and I’m reluctant to make any more air travel arrangements for him given the uncertainty of each day’s potential for vomiting. Not much fun for him, and not much fun for me. I’d like this time I’m at home with him to be an opportunity for us to do things together and travel some while we can. We talk about traveling, and “plan” short excursions, but don’t seem to make it far from home. When it gets down to it we’re both afraid he just won’t be able to do it.

As frustrating as it is to feel like quasi hermits, it’s even more frustrating to not be understood by medical professionals. There’s a tendency by healthy individuals to gloss over notions like quality of life. When someone has faced life threatening situations, multiple times especially, it’s easy for others to think whatever life we have together should be satisfactory, because he is, after all, still with me. I understand the motivation in telling me that, but being on the receiving end of attitudes that essentially say it doesn’t matter if our lives are less than satisfactory if we are still together, feels a bit like being unvalued. I don’t care much for that attitude, and think if they could live this life for a while they would understand. They would want answers, too.

Just because doctors and specialists have not been able to diagnose his problem does not mean we should just give in and accept this way of life. Terry is still too vital a person, and we are both too young to be expected to just accept this is how life has to be for us. I refuse to, and am thankful that our primary care physician is on our side and supports what we do.

I spoke with him after Terry’s discharge, and asked about the possibility of a letter from him for Terry’s file at the hospital. When I take him in, they do not start any fluids or meds until they’ve scanned his abdomen and run labs on his blood. While I appreciate they have protocol to follow, from my perspective it’s just additional costs to Medicare that are unnecessary. We have been through this too often to not recognize the symptoms when they rear their ugly heads. I’m hopeful if they start IV fluids and anti-nausea medications faster than they have in the past, it may help end the vomiting sooner, and that would allow him to go home, rather than be admitted yet one more time. We received a copy yesterday of the letter our physician submitted to the hospital to be put in his record. It may not help, but at least it feels like getting a little bit of control.

Control is good, but answers are better. As he goes through additional testing and diagnostics, I’ll try to keep this up as a chronological record. It seems like to much to ask for, but if they can’t diagnose and treat, I hope they can at least give him tools to help cope. Whether it’s a medication or a behavioral change, he needs something. I may need something myself if he doesn’t get it!!

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Oh, The Tangled Web We Weave…

Posted on 05/14/2010 by Caren Rugg

This feels like it’s starting to work its way toward a plan. There is still too much unknown for my comfort level, but at least we know that by a month from now he SHOULD have one surgery completed, with one to come. At this point, it may work out exactly opposite the way they originally indicated they wanted to address the masses. Go figure….

I know that there have to be times when Terry thinks I have too much to say to the doctors, but I hope in the long run he realizes that I truly am only trying to keep them on task where he is concerned. Today was yet another example of feeling like it makes a difference that I’m there.

The adrenal gland mass is a source of concern as far as Terry and I are concerned. We both think based on the way he feels, and the symptoms they list as a consequence of having the pheochomocytoma, that he does. The oncologist has seen two labs, one showing an increase in hormone production, and one that was less conclusive. From his perspective, based on a 50/50 with the labs and the fact that Terry did not have high blood pressure that there really wasn’t a pheo at work. He didn’t dispute the mass, but didn’t think it was functioning in the absence of high blood pressure.

Terry has an ejection fraction of 20%. The oncologist is not familiar with Terry’s cardiac history, so I felt compelled to ask with an ejection fraction that low, was it even possible for Terry to HAVE high blood pressure. He agreed that was not a likelihood. I asked if he had seen labs that had been processed through our primary care physician’s lab. He had not. So the report that the PCP, the local surgeon, and Terry and I have seen showing all hormones tested outside the normal range has not been seen by anyone from KU Med.

This continual dance of one step forward and two steps back is getting very wearisome. From my perspective, when the oncologist’s office called to verify the thyroid cancer, I told the doctor’s nurse that the surgeon had this concern and had attempted to contact him. Evidently they still had not communicated. I do know if the pheo exists that it would have been determined by the time surgery got scheduled. The day of his prostate biopsy they have a nuclear scan scheduled to check out the adrenal mass. By raising the issue of his ejection fraction and the other labs he has not seen, the oncologist had some blood drawn before we left KU Med today, and Terry was in possession of the infamous orange urine jug.

Now, if the results of the blood and urine work ups show the adrenal gland mass is functioning, he won’t have to have the nuclear scan scheduled for May 24. He will have to take an alpha blocker to reduce adrenal production, and a beta blocker to protect his heart, for two weeks prior to his surgery. By determining this before the prostate biopsy, he should be able to have surgery sooner. I asked if the thyroid could be removed at the same time the oncologist removes the adrenal gland mass, and he believed that could be accomplished. The benefits of that are only two surgeries and recoveries rather than three. Right now it’s looking like that first surgery can happen early in June.

The bad news, and there always seem to be some, is that based on the ultrasound done prior to the thyroid biopsy there are lymph nodes on both sides of the thyroid showing mass. The oncologist says there will be a pathologist in the ER to check tissue until all cells are clean, but I’m concerned this means there will be a need for chemo and or radiation now. I know he was hoping, and I was hoping I know, that he wouldn’t have to go that route. Now we just need to find out for sure about the adrenal gland mass and the prostate. That’s all… For now….that’s all.

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Diagnosis Part I

Posted on 05/05/2010 by Caren Rugg

To say we have part one of the diagnosis is a good thing, but to have been working as long as we have to get a diagnosis, and still not have a complete one is frustrating. Considering that the news we’re learning is not all we’d hoped for, the longer it drags out the more frustrating it becomes.

When Terry saw the local surgeon last week who believes the thyroid is connected to the functioning adrenal gland, we felt he was on track to something that would prove conclusive. At the appointment with him today, we found the thyroid biopsy results were not yet in. He told us he had attempted to contact the oncologist to speak with him directly, but could not get a call back.

Even more evidence of how convoluted and confusing this experience has become came when he told us he’d spoken to the primary care physician who had made the original referral to the KU Med system. Our PCP had no clue of any of what was happening, but as soon as the surgeon started giving him lab results, he realized what was going on immediately.

This is where it starts to get complicated, so bear with me….

The labs Terry had showed that all hormone levels were outside the normal range. They were all too high, and adrenalin in particular was very elevated. This proved to him that while the adrenal gland mass was non malignant, it was functional. Because of the continued increase in hormones, Terry had developed secretions called calcitonin or c cells. These c cells create a pheochromocytoma, or tumor in the thyroid the surgeon thinks is causing medullary thyroid cancer.

There are two reasons this matters. First, it compromises his ability to safely get through whatever surgeries come his way. There is already discussion about removing the thyroid and prostate, but before he can endure those two procedures he needs to have the adrenal gland mass removed so he is not bombarded with increased hormones when his body is stressed from surgery. The second reason it matters what kind of cancer this is is the medullary thyroid cancer is more aggressive than more commonly diagnosed thyroid cancers. This strain can spread early in the disease process, so it needs to be addressed before it does that kind of damage.

After his appointment, I did get a call from the oncologist’s office who confirmed the biopsy showed malignancy. I told her what the surgeon had to say and that he had tried calling the oncologist, but it turned out he’d been on vacation. (That’s two of the doctors Terry needs who are/were on vacation…I’m trying to be mindful of the fact these doctors deal with hardcore stressful situations, but it doesn’t make my situation any less stressful to be in a constant holding pattern trying to figure out what’s going on with Terry.) I called the surgeon’s office to inform them the biopsy was positive, but they weren’t saying it was medullary cancer. He was going to call the oncologist and confer with him because he is convinced the oncologist is not seeing the total picture. In the meantime, there is an appointment scheduled for Monday with the urologist who will do the biopsy, and what eventually may be the prostate removal. None of that starts until after the biopsy, which is at LEAST another week away.

Interestingly, Terry got a number from the national cancer website and called and talked to someone. He, like I, is concerned they are going to find more. He wanted to know how early it is that you can track these cells that either metastasize or create malignancies, but they couldn’t answer his question. Earlier we had discussed how confusing it is to think about what it is we want to be told is going on now that we have confirmed the presence of cancer in at least one of the two sites. We literally have no idea where we’re headed. Yet. We’re hopeful each new appointment will yield insight, but they mainly serve to let us know we don’t know much. Yet.

He also had an appointment yesterday with his cardiologist who reminded us his heart is still in tough shape. His ejection fraction is fairly consistent in the 20% range now. The cardiologist did not feel that would change much, but Terry did need to do what he needed to do to keep it from going down any more. He was a bit surprised, as I think we all are, that Terry is going through yet another life compromising health situation.

So, next week brings consultations with the urologist, the oncologist, and hopefully the scheduling of both his biopsy of his prostate, and removal of adrenal gland mass. That would certainly feel like movement in the right direction!

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The Medical Mystery Tour

Living with chronic illnesses, and the challenges they present in diagnosis, treatment, and quality of life. Come along for the ride with us!

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