NED, sort of... An update

Allochka

Sorry, I haven't been here for a while. Some crazy things were happening - I had to do a biopsy for a worrysome skin lesion, little Alice has been so sick with kidney inflammation that we were in hospital with her for a week. She is back home now, but she caught mild bronchitis while in hospital. Husband and I are sick too with some kind of virus :-(

the news are that husbands latest ultrasound was NED, sort of. But the doc found very small (4 mm) angiomyolipoma on the other kidney. He compared it to CT done last year - no changes, so he felt safe to conclude that it is benign. Angiomyolipoma was there on CT all the time, just not mentioned in description. And it is so small that wasn't noticed on previous USs.

I've done a big mistake and googled angiomyolipoma. Turns out this is benign tumor frequently seen in pateints with tuberous sclerosis (TS) , and TS patients have a slightly increased risk of RCC too. Actually, combination of RCC and any other benign tumor is a very rare thing... Well, my hypochondriac mind is now convinced that husband had TS, and as this is genetic disorder, that our Alice has it too. Husband has zero symptoms, but that doesn't calm me down. TS is a terrible disease, often leads to mental retardation, so I'm scared s...less, not for husband, but for Alice.

It is all I can think about nowadays... :-( I'm monitoring her all the time, waiting for seizures to start. This is a terrible way to live. I managed to consult 2 specialists online, one of them is a leading TS specialist in big neighbouring country. Both said I have no cause for concerns, but it doesn't convince me. Now I'm wondering if I should arrange a head MRI for Aluce, to get a definitive answer.

Cancer is a terrible thing, but sometimes I think that health anxiety could be even worse...

Sorry for a long post and thanks for letting me vent. I should be grateful for NED, but all I do now is worry about TS in daughter :-(

icemantoo

Sounds like NED to me

Allochka,

 

 

They have been monitoring stuff like that on  my other Kidney for more than 13 years, So far, so good. Small cysts and other junk are normal for non club members as well. As for Alice hopefully these are only the normal worries of a new mother.

 

 

 

 

Icemantoo

APny

icemantoo said:

Sounds like NED to me

Allochka,

 

 

They have been monitoring stuff like that on  my other Kidney for more than 13 years, So far, so good. Small cysts and other junk are normal for non club members as well. As for Alice hopefully these are only the normal worries of a new mother.

 

 

 

 

Icemantoo

There's nothing worse than

There's nothing worse than health anxiety especially when it's about one's loved ones. But Iceman is right; I too have little cysts on my other kidney and even one on the partial nephrectomied one. No change but we're watching. I would think if your daughter had TS the symptoms would be different from a kidney infection. It's very easy to diagnose an infection: eleveated white blood cell count, etc., so I'm sure that's exactly what she had. I really don't think her illness was caused by TS but of course it's hard to get that fear out of your mind. I think the timing really sucked; having them find your husbands growth at the time your daughter got sick which made it seem the two are related but I really don't think it is. Perhaps you should discuss it with her pediatrician to put your mind at easy. Hugs!

Jan4you

APny said:

There's nothing worse than

There's nothing worse than health anxiety especially when it's about one's loved ones. But Iceman is right; I too have little cysts on my other kidney and even one on the partial nephrectomied one. No change but we're watching. I would think if your daughter had TS the symptoms would be different from a kidney infection. It's very easy to diagnose an infection: eleveated white blood cell count, etc., so I'm sure that's exactly what she had. I really don't think her illness was caused by TS but of course it's hard to get that fear out of your mind. I think the timing really sucked; having them find your husbands growth at the time your daughter got sick which made it seem the two are related but I really don't think it is. Perhaps you should discuss it with her pediatrician to put your mind at easy. Hugs!

You are a MOTHER=enuff

You are a MOTHER=enuff said!

You are sick=enuff said!

You have been ultimately stressed recently=enuff said!

Hon, bests you can, use your FAITH, enJOY and celebrate each

moment.

Trust your motherly  instincts. You're smart, you won't miss a thing! 

Trust that inner voice will guide you IF and WHEN you need it most!

Hugs, Jan

P.S. Hope you ALL get better real soon!

 

 

Allochka

Jan4you said:

You are a MOTHER=enuff

You are a MOTHER=enuff said!

You are sick=enuff said!

You have been ultimately stressed recently=enuff said!

Hon, bests you can, use your FAITH, enJOY and celebrate each

moment.

Trust your motherly  instincts. You're smart, you won't miss a thing! 

Trust that inner voice will guide you IF and WHEN you need it most!

Hugs, Jan

P.S. Hope you ALL get better real soon!

 

 

Thank you, guys!
the problem

Thank you, guys!

the problem is that angiomyolipoma is waaay less common than cysts, it makes me worry. Internet said combination of RCC and angiomyolipoma is more commonly seen in patients with TS :-(

I do not think Alice's current sickness is connected to TS. But I'm so afraid of the future... this fear of TS is totally irrational, can't shake it off :-(

hardo718

Allochka said:

Thank you, guys!
the problem

Thank you, guys!

the problem is that angiomyolipoma is waaay less common than cysts, it makes me worry. Internet said combination of RCC and angiomyolipoma is more commonly seen in patients with TS :-(

I do not think Alice's current sickness is connected to TS. But I'm so afraid of the future... this fear of TS is totally irrational, can't shake it off :-(

Sorry Allochka

Many of us get anxious and scared over the things we have the least control over.  And sometimes the only relief is to have it addressed.  So, if this monster you're confronting regarding your daughter is relentless & it's causing so much stress, push to have a work up done on her to rule it out.  I'm quite sure if you discuss your findings with her doctor about the relationship of the disease, etc. and if they are understanding of your concerns, they'll look into it.  Best of luck.  I'll be praying for all of you,

Donna~

APny

hardo718 said:

Sorry Allochka

Many of us get anxious and scared over the things we have the least control over.  And sometimes the only relief is to have it addressed.  So, if this monster you're confronting regarding your daughter is relentless & it's causing so much stress, push to have a work up done on her to rule it out.  I'm quite sure if you discuss your findings with her doctor about the relationship of the disease, etc. and if they are understanding of your concerns, they'll look into it.  Best of luck.  I'll be praying for all of you,

Donna~

I agree with Donna. For peace

I agree with Donna. For peace of mind perhaps you should speak to Alice's pediatrician. Also, I Googled TS since I never heard of it and it said it's associated with multiple of those tumors in both kidneys. Your husbnd has just one tiny one, not several. Not to minimize your anxiety but that's something to think about. Is there a test to rule out TS?

Jojo61

hardo718 said:

Sorry Allochka

Many of us get anxious and scared over the things we have the least control over.  And sometimes the only relief is to have it addressed.  So, if this monster you're confronting regarding your daughter is relentless & it's causing so much stress, push to have a work up done on her to rule it out.  I'm quite sure if you discuss your findings with her doctor about the relationship of the disease, etc. and if they are understanding of your concerns, they'll look into it.  Best of luck.  I'll be praying for all of you,

Donna~

Hi Allochka,
I am so sorry

Hi Allochka,

I am so sorry that you have been through this. The biggest worry for a mother is the well-being of her child. I completely understand your anxieties and the "Dr. Google" seems to just give you enough information to worry you, and give you many worrisome diagnoses. I have learned to stay away from "Dr. Google", but as a new mother, of course that is where you are going to go!! But I agree with Donna....if you are that worried, have her checked. Put your mind at ease, because you deserve to just enjoy your lovely little girl without worries!!

Thinking about you, dear girl!

Hugs

Jojo

 

Allochka

Jojo61 said:

Hi Allochka,
I am so sorry

Hi Allochka,

I am so sorry that you have been through this. The biggest worry for a mother is the well-being of her child. I completely understand your anxieties and the "Dr. Google" seems to just give you enough information to worry you, and give you many worrisome diagnoses. I have learned to stay away from "Dr. Google", but as a new mother, of course that is where you are going to go!! But I agree with Donna....if you are that worried, have her checked. Put your mind at ease, because you deserve to just enjoy your lovely little girl without worries!!

Thinking about you, dear girl!

Hugs

Jojo

 

Thank you so much, I'm almost

Thank you so much, I'm almost in tears, knowing that you are thinking of us...

I worry too much right now, to the point I can't function normally.

The problem with TS is that there is no one definitive test to rule it out. But the best one would be brain MRI, cause up to 95% of patients have smth showing up there. 

I try to find solace in fact that my husband has no symptoms at all, except for tiny angiomyolipoma in combination with RCC (although rare condition, this happens to people without TS too). And, as Apny mentioned, in TS those benign tumors are usually multiple, and bigger.  Alice has no symptoms too. The best TS specialist advised online I have no cause for concern.

But health anxiety inside me is whispering that it is all wrong, perhaps she is sick and doomed to seizures, retardation, etc... It is my own, terrible mental problem. I'm afraid I'll need to get that MRI in order to find some peace, and then I need to see a therapist for hypochondria. I can't even trust my maternal instincts anymore, because I'm not thinking rationally. 

Thanks for listening. It is not the topic for cancer survivor board, but it gets kinda easier to share with friends...

APny

Allochka said:

Thank you so much, I'm almost

Thank you so much, I'm almost in tears, knowing that you are thinking of us...

I worry too much right now, to the point I can't function normally.

The problem with TS is that there is no one definitive test to rule it out. But the best one would be brain MRI, cause up to 95% of patients have smth showing up there. 

I try to find solace in fact that my husband has no symptoms at all, except for tiny angiomyolipoma in combination with RCC (although rare condition, this happens to people without TS too). And, as Apny mentioned, in TS those benign tumors are usually multiple, and bigger.  Alice has no symptoms too. The best TS specialist advised online I have no cause for concern.

But health anxiety inside me is whispering that it is all wrong, perhaps she is sick and doomed to seizures, retardation, etc... It is my own, terrible mental problem. I'm afraid I'll need to get that MRI in order to find some peace, and then I need to see a therapist for hypochondria. I can't even trust my maternal instincts anymore, because I'm not thinking rationally. 

Thanks for listening. It is not the topic for cancer survivor board, but it gets kinda easier to share with friends...

Allochka my heart really go

 

Allochka my heart really go out for you. I know what it’s like to be totally overwhelmed with anxiety and convinced that something is very wrong. But just as Google can be our worst enemy, it can also be a friend. I have been reading about TS and for one, it’s considered extremely rare. About 1 – 2 million people worldwide have it. That’s out of 7 billion people. It’s very rare.

 

Second, it is typically detected in childhood. Not always, but typically. So to me it seems highly unlikely that your husband not only has it, but reached the age that he is without any symptoms whatsoever and one single tiny 4mm tumor to show for it if he does in fact have TS. Not impossible, but pretty unlikely.

 

Finally, it said that most cases are not inherited but caused by mutation. So even if your husband has it, chances are he didn’t get it from his parents but it happened by a random mutation. It’s unlikely that he passed it on to Alice, even if he has it. Genetics is rarely destiny. I know none of this helps when we’re scared to death for our child and husband but I hope it could at least make you consider the alternative. That he doesn’t have it and neither does Alice

 

Yes, it's possible he has it, yes, it's possible it's familial, but given that it's so rare, that he never had symptoms and only one tiny growth, that in most cases it's not inherited, I think there's a very good chance that everything is ok both with him and with Alice. Hugs!!

 

Allochka

APny said:

Allochka my heart really go

 

Allochka my heart really go out for you. I know what it’s like to be totally overwhelmed with anxiety and convinced that something is very wrong. But just as Google can be our worst enemy, it can also be a friend. I have been reading about TS and for one, it’s considered extremely rare. About 1 – 2 million people worldwide have it. That’s out of 7 billion people. It’s very rare.

 

Second, it is typically detected in childhood. Not always, but typically. So to me it seems highly unlikely that your husband not only has it, but reached the age that he is without any symptoms whatsoever and one single tiny 4mm tumor to show for it if he does in fact have TS. Not impossible, but pretty unlikely.

 

Finally, it said that most cases are not inherited but caused by mutation. So even if your husband has it, chances are he didn’t get it from his parents but it happened by a random mutation. It’s unlikely that he passed it on to Alice, even if he has it. Genetics is rarely destiny. I know none of this helps when we’re scared to death for our child and husband but I hope it could at least make you consider the alternative. That he doesn’t have it and neither does Alice

 

Yes, it's possible he has it, yes, it's possible it's familial, but given that it's so rare, that he never had symptoms and only one tiny growth, that in most cases it's not inherited, I think there's a very good chance that everything is ok both with him and with Alice. Hugs!!

 

You are right, you are

You are right, you are absolutely right! It is rare, husband has no symptoms, majority of thise angiomyolipomas are found in people without TS... It is RCC and angiomyolipoma that worries me, cause both tumors can be associated with TS. But that doesn't worry best TS specialist in Russia. Russia is a big country, many TS patients there, and most go to this specialist for second opinion, diagnosis, etc. She is such a kind lady that consulted me online totally free of charge, amazing! After her words that no need to suspect TS in Alice I was happy for 2 days, and then gealth anxiety got the best of me. I started thinking "what if", docs could be wrong, Google knows best, no way to know without testing....

I know I need to address this disorder of mine asap. It robbed me all joy of life. 

Apny, you are so kind, thank you! The leftovers of reason tell me husband and Alice are allright, it is me who needs help. But I can't stick to this thought for a long time, and vicious circle never ends. 

APny

Allochka said:

You are right, you are

You are right, you are absolutely right! It is rare, husband has no symptoms, majority of thise angiomyolipomas are found in people without TS... It is RCC and angiomyolipoma that worries me, cause both tumors can be associated with TS. But that doesn't worry best TS specialist in Russia. Russia is a big country, many TS patients there, and most go to this specialist for second opinion, diagnosis, etc. She is such a kind lady that consulted me online totally free of charge, amazing! After her words that no need to suspect TS in Alice I was happy for 2 days, and then gealth anxiety got the best of me. I started thinking "what if", docs could be wrong, Google knows best, no way to know without testing....

I know I need to address this disorder of mine asap. It robbed me all joy of life. 

Apny, you are so kind, thank you! The leftovers of reason tell me husband and Alice are allright, it is me who needs help. But I can't stick to this thought for a long time, and vicious circle never ends. 

I totally get it. And if it

I totally get it. And if it makes you feel better to get the MRI for Alice then do it. If for nothing else than peace of mind. Is it safe to a baby to get an MRI?

Allochka

APny said:

I totally get it. And if it

I totally get it. And if it makes you feel better to get the MRI for Alice then do it. If for nothing else than peace of mind. Is it safe to a baby to get an MRI?

Alice and me were busy today.

Alice and me were busy today. We've visited a good neuro, and she thinks Alice has no symptoms and her development is perfect. I begged for MRI. She said that as a doc she sees no indications to do it. But, as a mother and grandmother, she understands me, and would give me a referral for my peace of mind. 

So, Alice's MRI was scheduled for next Tuesday. MRIs are safe, but bad thing is that little kids require sedation. I felt so quilty because of that. But after husband found out that sedation would be needed,he agreed to have MRI himself. As I worry that he has the disease (and transferred it to Alice), this will perfectly do! If his MRI is clean, chances of having the disease are minuscule, even hypochondriac like me would calm down.

he is having MRI tomorrow, answer - on Thursday. Please wish us luck! I soooo hope for clean MRI, this is much worse than cancer related scanxiety...

And I'm starting therapy for my hypochondria on Thursday. At least I have a feeling that smth is being done, both to eliminate TS fears, and to treat my anxiety.

Sorry for unrelated post again...

Jan4you

Allochka said:

Alice and me were busy today.

Alice and me were busy today. We've visited a good neuro, and she thinks Alice has no symptoms and her development is perfect. I begged for MRI. She said that as a doc she sees no indications to do it. But, as a mother and grandmother, she understands me, and would give me a referral for my peace of mind. 

So, Alice's MRI was scheduled for next Tuesday. MRIs are safe, but bad thing is that little kids require sedation. I felt so quilty because of that. But after husband found out that sedation would be needed,he agreed to have MRI himself. As I worry that he has the disease (and transferred it to Alice), this will perfectly do! If his MRI is clean, chances of having the disease are minuscule, even hypochondriac like me would calm down.

he is having MRI tomorrow, answer - on Thursday. Please wish us luck! I soooo hope for clean MRI, this is much worse than cancer related scanxiety...

And I'm starting therapy for my hypochondria on Thursday. At least I have a feeling that smth is being done, both to eliminate TS fears, and to treat my anxiety.

Sorry for unrelated post again...

Whew.... more hugs and less

Whew.... more hugs and less anxiety!

Jan

APny

Jan4you said:

Whew.... more hugs and less

Whew.... more hugs and less anxiety!

Jan

Wishing you all the very best

Wishing you all the very best and I'm sure the results will put your mind at ease. Hugs! 

Allochka

APny said:

Wishing you all the very best

Wishing you all the very best and I'm sure the results will put your mind at ease. Hugs! 

Thank you both so much! :-)

Thank you both so much! :-)

hardo718

Allochka said:

Thank you both so much! :-)

Thank you both so much! :-)

That's great news

 

all the way around.  My goodness, you really are a mover!  The grass ain't growin under your feet, good for you. I'm impressed woman! 

Keep us updated & good luck,

Donna~

Allochka

hardo718 said:

That's great news

 

all the way around.  My goodness, you really are a mover!  The grass ain't growin under your feet, good for you. I'm impressed woman! 

Keep us updated & good luck,

Donna~

Well, husband's head MRI

Well, husband's head MRI results are already in - all clear, no signs of tuberous sclerosis. That makes this disease in him soooooo unlikely, hurrah! I now believe that his small angiomyolipoma is just a sporadic one ( they happen in approx one out of 150 women and one out of 350 men). 

Now I can breathe easily, Alice is allright (as several doctors have already told me without MRI).

I have to deal with my hypochondria, therapy starts tomorrow. 

So happy and looking forward to getting rid of this mental sickness.

thank you for support and sorry for this s...t, especially I feel bad about imagining things when some guys here are really struggling.

Positive_Mental_Attitude

Allochka said:

Well, husband's head MRI

Well, husband's head MRI results are already in - all clear, no signs of tuberous sclerosis. That makes this disease in him soooooo unlikely, hurrah! I now believe that his small angiomyolipoma is just a sporadic one ( they happen in approx one out of 150 women and one out of 350 men). 

Now I can breathe easily, Alice is allright (as several doctors have already told me without MRI).

I have to deal with my hypochondria, therapy starts tomorrow. 

So happy and looking forward to getting rid of this mental sickness.

thank you for support and sorry for this s...t, especially I feel bad about imagining things when some guys here are really struggling.

Wonderful news for everyone! 

Wonderful news for everyone! 

APny

Positive_Mental_Attitude said:

Wonderful news for everyone! 

Wonderful news for everyone! 

Terrific news. So happy for

Terrific news. So happy for you and your family.

hardo718

APny said:

Terrific news. So happy for

Terrific news. So happy for you and your family.

Thank God!!

You'll be fine.....deep breaths of relief.

Donna~