Mods can move this to the lounge if you must but most of the people here know about my kidney cancer

[tavalon]

scare and I wanted to update everyone. Good news really. I have an angiolyomypoma. http://emedicine.medscape.com/article/376848-overview

Thank you to all of you who were keeping me in your thoughts. We DUers don't always agree with anything but we can come together and give one another strength when needed and I needed and felt the thoughts and hopes of many of you as I faced this thing that has taken residence on my kidney.

Thank you to all of you who prayed and lit candles and just hoped for good news for me. And it is almost the best news it could be.

[myrna minx]

1. I am so relieved for you.

My best wishes to you. :hug:

[lamp_shade]

2. Wonderful news, Tavalon.

[sandnsea]

3. Whooppeeee!!

I didn't hear of your cancer scare because I don't go in the lounge. I am so glad everything turned out well! :hug:

[kath]

4. BENIGN!! WOOT!!1!1

[MADem]

5. What will your doctors do? Watch and wait, chop it out, embolize it?

Thank heavens it wasn't cancerous!

[tavalon]

11. It is in a way sucky place

so if the time comes, I will have to have an open partial nephrectomy. But that only has to happen if it grows to 4cm, when the risk of bleeding goes up. It is currently 2.7cm and some of them never grow. For now we will be doing sonograms if possible or CT scans if necessary every three months. Embolization wasn't an option before and we didn't talk about it today but I would think that could be back on the plate of options. If it could save me from being split from stem to stern, I might want to take another look at that one.

[MADem]

17. I know someone who did an embolization for fibroid tumours of the uterus.

This was many years ago when it was still sort of rare--now it is more common. They didn't cut--they went in with a wire or something. My friend needed quite a few drugs for pain (the embolization cuts off the blood to the tumor so it has a "heart attack" and withers and dies, basically) but it was a short hospital stay and solved the problem, I guess.

The trick to successful embolization, from what I understand, is to find yourself a very experienced radiologist. If they can screw around with the heart and not kill people, they can probably manage with the kidneys. FWIW, sometimes surgeons don't like to hand off their sawbones work to radiologists, so you might have to specifically ask for that referral or consultation request, and not assume the surgeon will bring it up on his or her own.

Anyway, great news for you and I hope if you need to treat the thing, that you can make do with the least invasive measure possible!

[tavalon]

18. I will keep that tip for later

I am going to take all of my stuff to another doctor for a second opinion. There is supposed to be this really good kidney cancer doctor at Swedish.

[knitter4democracy]

19. I had a rt. radical nephrectomy almost three years ago now.

It was a bizarre benign invasive oncocytoma, and it was rather large. It was a massive surgery, and I'm still recovering in a lot of ways. I really hope they can do it with a lap or something easier on your body.

[tavalon]

20. Nope, no lap surgery for me

It's on the inner aspect of my right kidney and too close to my liver. The local expert said no way, no how. It would have to be open so that's why we kept looking to determine for sure what it was instead of just presuming RCC. One of the reasons I was dreading this was knowing the surgery would be extensive. And surgery is not off the table yet, it's just a lot further away and possibly not even necessary. I've researched the kind of surgery you had and I'm sorry you or anyone has to go through that. It's brutal.

[knitter4democracy]

26. Aw, crap. That really sucks. No, you don't want this surgery.

They quartered me. I have a 10" long scar and lost a pound of flesh and three inches of rib. Oh, and my husband, but that's another story. It took me forever to recover from that one, and the pain was pretty bad (I can't take pain killers, though, so all I had was ibuprofen--most people don't have that DNA gem I got from my dad). It's a terrible surgery, and I'm glad that they're doing what they can to try to help you not have it. Your tumor's smaller, though (mine was over 8cm across), so hopefully that would mean a smaller scar and faster healing time.

If it messes with your liver, though, they'll open you up for sure. You don't want that at all. Even benign tumors can spread. At least, mine did. We got clean margins, though, so that's good.

[tavalon]

35. You lost your husband too!

That sucks big time. I remember your husband is/was a doctor. I only remember that because you were one of the smart voices around the H5N1 stuff. I'm sorry about all that stuff and yeah, I know just how bad the surgery is. Not only am I an avid internet researcher, I'm a nurse, though not a nurse who works in that area, so I'm only smart enough to be a danger to myself.

When I go for my second opinion (and I will be going for a second opinion, even though I like this answer very, very much) I will want to talk about my liver along with the rest of it.

Congratulations on the clean margins, though, that is fabulous. May it all stay good, tumorwise.

[GreenPartyVoter]

6. :^D

[goclark]

7. Thank you for letting us know ~ good news!

:bounce:

[JohnnyLib2]

8. Great news!

:thumbsup:

[Lone_Star_Dem]

9. I'm glad to hear it was wasn't cancer!

Great news! :toast:

[Honeycombe8]

10. So...you have an angiolyomypoma INSTEAD of cancer? Or something

additional wrong turned out to be angiolyomypoma instead of more cancer?

Anyway, that is very good news for you. (But for the grace of God, there go I, huh? It must be very scary to get the big C.)

[tavalon]

12. Instead

but I've been through multiple scans to try to figure this thing out. The first was in an emergency room because of stomach pain unrelated, then the next two were outpatient and this one was finally definitive.

[Honeycombe8]

15. Oh, that IS terrific news! Break out the bottle!

:party:

Or break out the fudge! (whichever strikes your fancy)

[seemunkee]

13. Great news

I'm coming up on two years post nephrectomy for my kidney cancer

[tavalon]

16. And remaining cancer free, I hope?

[seemunkee]

25. So far scans have been clean.

Next one is in Sept and then I only go once a year.

[knitter4democracy]

27. Whooooo!

Kick that cancer's ass!!

Sorry, couldn't help cheering from the peanut gallery. :D

[knitter4democracy]

28. Which kind, if you don't mind my asking?

There are so many different kinds of kidney cancer, which I didn't know until I started looking into it while waiting the month it took for pathology to come back on mine. The pathologist admitted he'd never seen one like mine, but he thought it was benign, so I still get scans and such. Still clean, but it's always a worry in the back of my and my doctor's minds.

Did you get a lap or the big kind of surgery? How are you feeling these days?

[seemunkee]

31. Renal cell

7cm, encapsulated in the kidney, no lymph involvement or renal vein/artery involvement.
Got laproscopic by one of the inventors of the technique, also got a hernia repaired while they were in there.

I know what you mean about it being on your mind, I think about it every day. It becomes the new normal.
Good luck. Listen to your body, it knows what is up.

[knitter4democracy]

32. Damn. Thank goodness it hadn't spread.

So, you're on the "we won't give you chemo unless it comes back" plan? I hate that.

[seemunkee]

34. There is no preventative treatment for renal cell metastatic disease

So nothing to do unless it comes back. My wife is a clinical study manager working with NCI, she knows what is available and what is recommended. There is a big push in renal cell studies right now so should I have a recurrence there may be some better options available. But I'm not planning on that happening

[tavalon]

36. Having done so much research on renal cell cancer in the last two months

You are right, surgery is the only curative thing and sometimes it isn't. I'm so glad to hear that they are working hard on other treatments. Hopefully, you won't need any. I've only had to live with this for 2 months, I'm so sorry you are living with it (though hopefully without it) permanently.

[handmade34]

14. good news

take care...

[Swamp Rat]

21. !!!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[tammywammy]

22. Congrats

My aunt had kidney cancer, it had attached to her adrenal gland and was the size of a pineapple when they removed the tumor. She was very very lucky, it hadn't spread and she's perfectly fine now.

[Hekate]

23. I'm so glad for you, Tavalon. Stay well.

:hug:

Hekate

[spanone]

24. ...

[roguevalley]

29. bless you, honey. I am praying for your good health.

[TuxedoKat]

30. I missed this

but I am so glad to hear you are okay. Hugs and good wishes.

[Individualist]

33. Great news, tavalon

[LeftishBrit]

37. Good news - glad to hear the big scare is over!