Bad News
I hate sharing this information.
Today I found out my cancer has most likely metasticized to my adrenal gland. I'd been having some pain on my right side (my surgery side) for several weeks. I decided to email my oncologist yesterday morning to tell him about it. He had me come in and go to urgent care at the City of Hope. They did my CT scans a month early and found that my right adrenal gland (the one that had been attached to my diseased kidney) had enlarged slightly. They looked back and it had been changing for the past year.
My oncologist wants me to have it removed. They assume it's RCC.
There were ok with waiting until after my business trip to Italy. I'm not. I cancelled my trip and have asked them to remove the damn thing ASAP.
So it appears in 2-3 weeks I'll be having my adrenal gland removed. Hopefully, a laproscopy.
It hasn't totally sunk in that I've graduated to Stage 4. I hope removing this will keep me NED for awhile and I'm also hoping that my other adrenal gland can pick up the slack. I have an aunt with Addisons (adrenal insufficiency). It's not pleasant. On the other hand, this adrenal gland is bad anyway, so that can't really be part of the equation.
Will let you guys know. If you're a praying person, please say a pray for me. If not, please send the universe a good thought. I appreciate this board. It's been so helpful to me to have a place to discuss this damn disease.
Todd
Comments
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Very sorry to hear this!
This disease sucks that much is for sure. Hang in there....positive thoughts are headed your way! I have followed you as our tumours were about the same size and grade, mine was staged 1B since they found no other sign of it, as yet. Keep up the good fight. Best regards, Jack
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Praying for you.
Wishing you well with the surgery. Don't blame you for wanting that thing out now. I will be praying for you.
Hugs Melissa
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Hi Todd
I'm sorry but it'sHi Todd
I'm sorry but it's great you listened to your body soon, you may have a successful surgery and recovery. my urologist removde the adrenal gland and infected kidney together but the adrenal gland was not infected based on pathology report, anyway I'm Ok and don't have a problem with just one adrenal gland yet. Your body will adopt to have just one adrenal gland.you're in my prayers.
Forough
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I'm very sorry to hear this.foroughsh said:Hi Todd
I'm sorry but it'sHi Todd
I'm sorry but it's great you listened to your body soon, you may have a successful surgery and recovery. my urologist removde the adrenal gland and infected kidney together but the adrenal gland was not infected based on pathology report, anyway I'm Ok and don't have a problem with just one adrenal gland yet. Your body will adopt to have just one adrenal gland.you're in my prayers.
Forough
I'm very sorry to hear this. But could it still be not cancer? You won't know for sure until it is out, so maybe it hasn't spread yet and it is just an impression the the gland is changing?
I'm sending you good thoughts and wishing a speedy recovery from surgery.
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Thinking of you.
I'm so sorry to hear this, you will be in my thoughts. I can't stop cursing rignt now. So, so, angry at this disease on your behalf.
As far as the adrenal goes, my husband's oncologist said that adrenal glands are TRUE DUPLICATE ORGANS. I hope yours will work fine. I am wishing you NED for a long time once the adrenal glad is out. I'm also crossing my fingers an enlarged adrenal gland can be caused by other things too, I certainly hope that is a possibility.
Keep us updated, I'll be thinking of you during this time.
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Adrenal gland
Todd:
obviously, this is not good news but if the adrenal gland was attached to the kidney that was removed, it is still local.
my husband had the adrenal gland removed when he had nephrectomy and has had no ill-effects from that.
i am sorry that you will have surgery; that doesn't sound good.
Sarah
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Adrenal removed with nephrectomySrashedb said:Adrenal gland
Todd:
obviously, this is not good news but if the adrenal gland was attached to the kidney that was removed, it is still local.
my husband had the adrenal gland removed when he had nephrectomy and has had no ill-effects from that.
i am sorry that you will have surgery; that doesn't sound good.
Sarah
I have no problems related to having one adrenal gland. Mine was removed during nephrectomy and sinice it had a non-contiguous tumor I was considered stage IV from the beginning
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Prayers and good thoughtsthaxter said:Adrenal removed with nephrectomy
I have no problems related to having one adrenal gland. Mine was removed during nephrectomy and sinice it had a non-contiguous tumor I was considered stage IV from the beginning
Prayers and good thoughts going your way. I'm also thinking that íf it's the gland that was on the same side as the kidney that it's not considered a met but a local recurrence, but of course I'm no doctor. In any case, it'll be out soon and I agree that it was wise to listen to your body and also wise to cancel the trip. Wishing you all the best!
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Adrenal glandAPny said:Prayers and good thoughts
Prayers and good thoughts going your way. I'm also thinking that íf it's the gland that was on the same side as the kidney that it's not considered a met but a local recurrence, but of course I'm no doctor. In any case, it'll be out soon and I agree that it was wise to listen to your body and also wise to cancel the trip. Wishing you all the best!
Hey Todd, you know I am not a religeous person. But I've got Karma up the wazoo. What goes around, comes around. And you have helped many. So all will be alright with you. Be well my friend.
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Oh Todd, sorry to hear youAPny said:Prayers and good thoughts
Prayers and good thoughts going your way. I'm also thinking that íf it's the gland that was on the same side as the kidney that it's not considered a met but a local recurrence, but of course I'm no doctor. In any case, it'll be out soon and I agree that it was wise to listen to your body and also wise to cancel the trip. Wishing you all the best!
Oh Todd, sorry to hear you have to go through another hurdle and surgery.
But.. you listened carefully and now are going to get that C word out of you!!
Know that we're here for you, I am. We'll walk this journey along side you.
Hugs to you~
Jan
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Echoing what others have saidthaxter said:Adrenal removed with nephrectomy
I have no problems related to having one adrenal gland. Mine was removed during nephrectomy and sinice it had a non-contiguous tumor I was considered stage IV from the beginning
I also lost my adrenal gland along with the kidney and have felt no ill effects. Obviously its a blow to recieve bad news but as another stage VI I can assure you life goes on.
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Surgery - Adrenal Gland
I spoke with one surgeon last night. He's going to be out of town for 3 weeks and was going to do it if I waited. Tomorrow I talk to the other one and find out when, etc.
My surgeon that did my nephrectomy left my adrenal gland without even discussing it with me. He told me after the fact. I don't think my tumor was near there, but he went into the surgery thinking I was Stage 1 and it turned out to be Stage 3 due to invading some microscopic veins in the kidney. My oncologist said there's lots of vascularization between the adrenal gland and the kidney, so it's a pretty common site for recurrence. I'll bet if I'd had my surgery at a cancer center, they would have removed the adrenal gland.
One can still hope it's a benign change in the adrenal gland. It's grown from 12x10 to 15x12 (I think that's mm) in 5 months. They can see a nodule, though and when they looked back, they could even see it on the previous 2 scans, but 3 scans back it wasn't there at all.
Compared to the nephrectomy, this will be a walk in the park. I'm somewhat glad my oncologist is so aggressive with his approach. He says if it's resectable, let's get it out of there. (And he's not a surgeon, so I trust his opinion a little more than the guy who gets paid to cut stuff).
Thank you everyone for the kind words.
Wishing you all well.
Todd
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No excusestodd121 said:Surgery - Adrenal Gland
I spoke with one surgeon last night. He's going to be out of town for 3 weeks and was going to do it if I waited. Tomorrow I talk to the other one and find out when, etc.
My surgeon that did my nephrectomy left my adrenal gland without even discussing it with me. He told me after the fact. I don't think my tumor was near there, but he went into the surgery thinking I was Stage 1 and it turned out to be Stage 3 due to invading some microscopic veins in the kidney. My oncologist said there's lots of vascularization between the adrenal gland and the kidney, so it's a pretty common site for recurrence. I'll bet if I'd had my surgery at a cancer center, they would have removed the adrenal gland.
One can still hope it's a benign change in the adrenal gland. It's grown from 12x10 to 15x12 (I think that's mm) in 5 months. They can see a nodule, though and when they looked back, they could even see it on the previous 2 scans, but 3 scans back it wasn't there at all.
Compared to the nephrectomy, this will be a walk in the park. I'm somewhat glad my oncologist is so aggressive with his approach. He says if it's resectable, let's get it out of there. (And he's not a surgeon, so I trust his opinion a little more than the guy who gets paid to cut stuff).
Thank you everyone for the kind words.
Wishing you all well.
Todd
Todd,
Isn't it a little early for the surgeon to take a golfing vacation. At least that is my understanding of how they schedule surgery. Sorry I can not help you with the diagnosis one way or the other as it is above my pay grade.
Do however stay away from Vegas this time as part of your recovery.
Icemantoo
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Argh
Can't stand this frickin' disease. But it sounds like it could be worse, man. I like your attitude in wanting to attack it right away. I agree. How the heck would you be able to focus on anything business knowing what's going on? It's the right choice.
Stay positive, sir.
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I'm sorry to hear your news.
As bad as it is that you have heard this news it's great that you're taking charge and getting it removed asap! You're still in control of cancer. Go get 'em and swift recovery!
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Sorrytodd121 said:Surgery - Adrenal Gland
I spoke with one surgeon last night. He's going to be out of town for 3 weeks and was going to do it if I waited. Tomorrow I talk to the other one and find out when, etc.
My surgeon that did my nephrectomy left my adrenal gland without even discussing it with me. He told me after the fact. I don't think my tumor was near there, but he went into the surgery thinking I was Stage 1 and it turned out to be Stage 3 due to invading some microscopic veins in the kidney. My oncologist said there's lots of vascularization between the adrenal gland and the kidney, so it's a pretty common site for recurrence. I'll bet if I'd had my surgery at a cancer center, they would have removed the adrenal gland.
One can still hope it's a benign change in the adrenal gland. It's grown from 12x10 to 15x12 (I think that's mm) in 5 months. They can see a nodule, though and when they looked back, they could even see it on the previous 2 scans, but 3 scans back it wasn't there at all.
Compared to the nephrectomy, this will be a walk in the park. I'm somewhat glad my oncologist is so aggressive with his approach. He says if it's resectable, let's get it out of there. (And he's not a surgeon, so I trust his opinion a little more than the guy who gets paid to cut stuff).
Thank you everyone for the kind words.
Wishing you all well.
Todd
But would that really mean stage 4 that is not a distant spread good luck on your upcoming surgery
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Not all stage 4 is equal
A solitary Met that can be surgically treated is very different from many mets. I know: I had a solitary lung nodule. In about two weeks, I will be NED for two years. And I have had no other cancer treatments. As I recall, you pushed to be included in an adjuvant trial. I encourage you to have the mass 1) biopsied, and 2) removed if appropriate. Hopefully, you will have a similar story as me regarding NEDiness.
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Adrenalectomy
I saw the surgeon on Friday. He heads the urologic oncologic fellowship program at City of Hope and teaches these robotic laparoscopic surgeries there.
He showed me the adrenal gland on the CT this week. It's obviously got something growing in it. It looked like it's getting pregnant. It's a small, triangular shaped thing and it was getting bulgy on all 3 sides. It's so small (less than 1.5 cm) that they think biopsy wouldn't tell them much if it's a negative biopsy. It seems it needs to come out no matter what's causing it to behave this way. And since I have another one, I should be ok without it. (I've heard that before on the kidney. It turned out to be true, sort of.). In any case, I know the best way they still have to treat this disease is to cut the damn things out...Oh. Sorry. I mean resect them. Sounds so much better.
I pushed for soon. They were very cooperative and scheduled me for February 3. So my pre-op will be this Wednesday and the surgery the following Tuesday. He will try to do it laparoscopically, but he said it might be challenging because of all the scar tissue. I've had 3 prior surgeries on my right abdomen (appendectomy, hernia repair, nephrectomy). I asked if I'm going to get 5 more holes. Unfortunately, yes, he said. So after this I'll have 12 scars on the right side of my abdomen. My friend said he's going to start calling me Sebastien.
Nothing like a little tumor and a surgery to put the cancer right back in my mind day and night. Actually, I'm not as stressed as last time I think. I guess I've been kind of thinking this might happen so I'm not as caught off guard. Still, I started making a mental list of "Things I Want to Do Before I Die" this week. (I hate the term bucket list. The way people throw it around just pisses me off for some reason.) My list was a little weird. First item was cleaning out my car. Second item was taking all the recycle bottles in the garage to the recycle place. Third item was destroying all my journals...Is it normal to have such a boring list?
The support of my friends and family feels different this time around. I think they start to realize this is a serious thing. I've been really grateful. My uncle who just had his shoulder replaced a few months ago, offered to come care for me. So did my aunt, who is ill herself. They both live in other states. I've had several friends offer to do things. I have my cancer buddy, a local friend that also had RCC checking in on me and it really helps. I know he understands.
So glad to have this board and those people. I'm a little more comfortable with living in the unknown than I was 2 years ago. For example, I'm aware until they take it out and look at it under the microscope, we don't really even know what it is. So I wait. I know what the surgery will be like. I've had a few. Not fun, but I can do it. I've had practice.
Wishing you all well and I hope each and every one of you gets free of this.
Best to you all.
Todd
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