This week brought us fewer medical appointments, and interestingly enough, possibly more information! The prostate biopsy was on Monday, the 24th. The urologist has called to say he did not find a malignancy in the prostate. He thinks it may be chronic inflammation which is causing his pain. They will try him on a 6 week course of antibiotics to see if that makes a difference.
This does make sense, because he didn't have problems with the prostate, and most men are diagnosed because they've started having problems. There usually is no pain associated with it, as it more often presents itself as difficulty in urination, and that has not been an issue for Terry. To be told pain is not generally associated with prostate cancer, but to know he was having a lot of pain that was increasing makes it a little less stressful knowing it's not cancer. Inflammation could be a "good" diagnosis, as anything NOT cancer is the preference. But as a cardiac patient, I'm wondering what unknown damage chronic inflammation might be playing into his heart condition. I know it can't be helping the cardiac side of things, but it was good news to find they don't think he has more than one type of cancer.
The oncologist also called this week to confirm the pheochromocytoma. He spoke the words "you were right" and I know it about had to kill him! Doctors want to be right all of the time, and probably like it even less when it's a spouse who is telling them how things seem to be. But since I'm the one with the vested interest to get Terry healthy, I'm going to keep speaking up. He started on a med that cost $6 per pill, and he had to have 50 of them. It's a small price to pay if this puts him on the road to recovery.
The next appointment is on June 3 with the oncologist, and we should be able to set the appointment for surgery at that time. The medication he's taking is taken for two weeks, so hopefully it will be just another week after that appointment and then he gets rolling!!! We're far, FAR from finality with all of this, but at least it's starting to feel like we've at least headed down the road.
Friday, May 28, 2010
Monday, May 17, 2010
Thursday, May 13, 2010
Oh, The Tangled Web We Weave...
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.
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.
Tuesday, May 4, 2010
Diagnosis Part I
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!
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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