Malignant ALM

Trease

So i have in fact made it to the other side of my Partial Neph. I was in the hospital for 6 days and it's been 12 since my surgery. Even though this was a robotic partial it was by no means an easy recovery. But here I am among the living again. 

There were complications and the tumor was larger then originally thought (5cm) and somehow they got the direction wrong. It ran up through the kidney so there was more resection and it was vascular in nature so a lot of blood vessels. 12 days out I still have my JP drain in. 

I don't remember a lot from when I was in the hospital they kept me pretty drugged up but bits and pieces are sliding through. I am going on Monday to talk with the cancer specialist and then my surgeon. I remember whole heartedly when he said it was malignant but they got clean margins but it was not rcc it was ALM which is almost never malignant but mine was. Last night a little slip of my memory he said he wanted to bring me in front of some board to discuss my case because it was so rare. 

I can't seem to find anything on ALM being malignant. Any ideas? Thought s ? 

jason.2835

Not sure...

Trease,

Surgery is never fun; even with the robotic arms of "perfection."  I remember the fatigue was pretty bad for a couple months until I was able to climb out of it.  

With regards to your ALM... I looked it up and found acute lentiginous melanoma, which is usually a skin cancer?  And they found it in your kidney?  That is pretty weird and I doubt you'll find anyone with direct experience to match your issue... I would hang out here but also check out the skin cancer board where there is more direct experience with melanoma per se... Treatments and prognoses look very different with regards to different types of cancer.

Hope you can get the information you are looking for... Look for a doctor that specializes in whatever type of cancer it turns out to be.

- Jay 

Jan4you

jason.2835 said:

Not sure...

Trease,

Surgery is never fun; even with the robotic arms of "perfection."  I remember the fatigue was pretty bad for a couple months until I was able to climb out of it.  

With regards to your ALM... I looked it up and found acute lentiginous melanoma, which is usually a skin cancer?  And they found it in your kidney?  That is pretty weird and I doubt you'll find anyone with direct experience to match your issue... I would hang out here but also check out the skin cancer board where there is more direct experience with melanoma per se... Treatments and prognoses look very different with regards to different types of cancer.

Hope you can get the information you are looking for... Look for a doctor that specializes in whatever type of cancer it turns out to be.

- Jay 

Oh, Trease, ENUFF alrealdy!!

Oh, Trease, ENUFF alrealdy!! You need a break. Hope you are on the mend from surgery and all.

I never heard of it, but wonder if its ALM=Acral Lentigious Melanoma?

Just know we'll be here for you, all the way okay hon?

And there is also smartpatients.com to ask about it too.

Perhaps you could go under Melanoma's in both sites and ask if anyone there has this?

Gentle, hugs and healing my dear~

Jan

APny

Jan4you said:

Oh, Trease, ENUFF alrealdy!!

Oh, Trease, ENUFF alrealdy!! You need a break. Hope you are on the mend from surgery and all.

I never heard of it, but wonder if its ALM=Acral Lentigious Melanoma?

Just know we'll be here for you, all the way okay hon?

And there is also smartpatients.com to ask about it too.

Perhaps you could go under Melanoma's in both sites and ask if anyone there has this?

Gentle, hugs and healing my dear~

Jan

ALM is angiomyolipoma.

ALM is angiomyolipoma. Everything I've read says it is a noncancerous growth made up of fatty tissue, blood vessels, and smooth muscle cells, and is most often found in the kidneys. I suppose a tiny percentage might develop into cancer and perhaps that's what they think happened here? Otherwise I agree; it's supposedly a benign growth so the docs saying that it's malignant is weird.

Trease

So with a clearer head, let

So with a clearer head, let me try this again. I went for my post op doctor appointment today and I recorded our appointment so I could better understand.

He took my case in front of some board with other surgeons and pathologists and this is the new dx.

My official dx is MIXED EPITHELIAL-STROMAL TUMOR. He said that somehow it was neither benign nor malignant but somewhere in between. Which is really confusing but I'm leaning towards benign. He started out by stating that it was a benign cancer, that just doesn't make sense to me. Then he said it was moving towards malignant and it's a good thing we took it out  before it reached that stage. I've done some research since I've been home today and all in all I think although my tumor was rare I'm in good shape. He suggested another 4 weeks before returning to work (which is really hard to hear when your a self employed single person) then to see him in 6 months for more scans and xrays and blood work. 

Jan4you

Trease said:

So with a clearer head, let

So with a clearer head, let me try this again. I went for my post op doctor appointment today and I recorded our appointment so I could better understand.

He took my case in front of some board with other surgeons and pathologists and this is the new dx.

My official dx is MIXED EPITHELIAL-STROMAL TUMOR. He said that somehow it was neither benign nor malignant but somewhere in between. Which is really confusing but I'm leaning towards benign. He started out by stating that it was a benign cancer, that just doesn't make sense to me. Then he said it was moving towards malignant and it's a good thing we took it out  before it reached that stage. I've done some research since I've been home today and all in all I think although my tumor was rare I'm in good shape. He suggested another 4 weeks before returning to work (which is really hard to hear when your a self employed single person) then to see him in 6 months for more scans and xrays and blood work. 

Well that kinda sounds like a

Well that kinda sounds like a better diagnosis/prognosis, right?

How confusing. I cannot imagine how it feels to you!

Glad it is out and you are recovery.

Do NOT rush your recovery no matter how much better you are feeling.

Is your work something you can do from home and not too stressful? Sorry.

Sending you healing hugs,
Jan

Trease

Jan4you said:

Well that kinda sounds like a

Well that kinda sounds like a better diagnosis/prognosis, right?

How confusing. I cannot imagine how it feels to you!

Glad it is out and you are recovery.

Do NOT rush your recovery no matter how much better you are feeling.

Is your work something you can do from home and not too stressful? Sorry.

Sending you healing hugs,
Jan

I am very confused Jan but

I am very confused Jan but I've decided to just think of the positive and be grateful it's out whatever it is and I will be ok. I am a Realtor 

Jan4you

Trease said:

I am very confused Jan but

I am very confused Jan but I've decided to just think of the positive and be grateful it's out whatever it is and I will be ok. I am a Realtor 

Well I am here for you,

Well I am here for you, Trease, if you ever need to talk, share or scream! (lol)

Great attitude but still. This has turned your life around..

Sending you positive, healing energy!

Hugs, Jan

donna_lee

Jan4you said:

Well I am here for you,

Well I am here for you, Trease, if you ever need to talk, share or scream! (lol)

Great attitude but still. This has turned your life around..

Sending you positive, healing energy!

Hugs, Jan

"The Board"

the Dr/ was referring to would be the Tumor Board at your facility.  Any tissue removed from anybody has to be biopsied or analyzed.  In a cancer case or suspected cancer case, even more so, as your data goes into the hospital's registry and into a national data base.  (That's how they come up with the figures that indicate smokers are more likely to have lung cancer.)

The somewhat good news is that if it's an angiomyolipoma-you've got fatty tissue where you don't want it.  Don't we all!!

During my initial surgery, they found a hamartoma in the main bile duct to the gall bladder.  Basically an overgrowth of tissue that partially blocked bile from flowing freely.  It and the gall bladder were removed and what's left seems to be functioning OK.

What you will find out about yourself, first from surgery, and from follow up CTs or other tests is that you have odd things here and there throughout your body.  I have cysts in the remaining half of my liver, in the pancreas, and the single kidney;  BUT, they are just cysts that have not changed in size.

This is intended to give you hope and encouragement.  First, recover from the surgery.  Then get on with living.

Hugs,

Donna

 

 

foxhd

donna_lee said:

"The Board"

the Dr/ was referring to would be the Tumor Board at your facility.  Any tissue removed from anybody has to be biopsied or analyzed.  In a cancer case or suspected cancer case, even more so, as your data goes into the hospital's registry and into a national data base.  (That's how they come up with the figures that indicate smokers are more likely to have lung cancer.)

The somewhat good news is that if it's an angiomyolipoma-you've got fatty tissue where you don't want it.  Don't we all!!

During my initial surgery, they found a hamartoma in the main bile duct to the gall bladder.  Basically an overgrowth of tissue that partially blocked bile from flowing freely.  It and the gall bladder were removed and what's left seems to be functioning OK.

What you will find out about yourself, first from surgery, and from follow up CTs or other tests is that you have odd things here and there throughout your body.  I have cysts in the remaining half of my liver, in the pancreas, and the single kidney;  BUT, they are just cysts that have not changed in size.

This is intended to give you hope and encouragement.  First, recover from the surgery.  Then get on with living.

Hugs,

Donna

 

 

Growing up perfect

Most all of us grew up never dreaming that so much could go wrong. I was probably well into my 40's before I needed my first blood pressure medicine. I felt that my body betrayed me. But Donna is so right. From arthritis to diabetes, or asthma to cancer, there are alot of odd things happening to our bodies as we age. Few escape unscathed. I think you are missing the good news. From this point forward you will be closely monitored for any abnormal pathologies. Then these issues will be dealt with.

So I say, that no matter what, you have dodged a bullet. ( if a few more years had gone by with your diagnosis' unchecked, it could have been much more serious.) Count your blessings and live on. Consider it good fortune. You are actually winning this contest of staying healthy and alive.  It's all a positive thing. You just can't see it yet. In time you will.