mets to lymphnodes around ureters/kidneys, anyone??

[jml]

Hi All~
Anyone ever heard of BC mets to the lymphnodes surrounding the ureters causing "retroperitoneal lymphadenopathy??
... resulting in stricture to the ureters, blocking the kidneys from functioning & leading to acute renal failure...
...landing me in the ER 2x in 4 days, emergency surgery to stent the ureters, 4 days in ICU, a grand mal seizure & 2 additional days in hospital?
UGH!
Or can someone reassure me that this bizarre event is completely random & unrelated to this God awful disease?
I'd just finished 7wks of radiation for a 2nd supraclav recurrences 7 days earlier.
And PET scans 8 weeks prior showed only the supraclav disease...

I know the answers lie in the multitudes of scans I'll have in the near future, once they determine my kidneys can tolerate the contrast.

I guess I'm just looking for a little reassurance~

Keeping the Faith~

Jml

[Becca]

JML,you are not alone--that is where some of my mets to lymphnodes are. Sorry you are having to go thru so much. I have had several stents in my right kidney. After not tolerating the last one, I had it removed and so far I get along with out it. My right kidney basicly does not work and I have some difficulty with my left kidney. I think it is an unusual place to have mets. I have ultrasounds done every 6 mos on my kidneys and ct scans also keep an eye on some of this. Hope life settles down for you soon. Becca

[jml]

Hi Becca~
Thanks for your reply.
I met with a Urologist yesterday & he also said that while mets to this area is uncommon, it is possible. He's ruled out all other possibilities that would cause the bilateral stricture & seems pretty convinced it's BC mets.
I'm scheduled for my regular q12wk PET scan on 11/18, but am trying to move it up.
From the Urology standpoint, I will have to swap out the plastic stents that were placed during the emergency surgery 2 wks ago for more durable, rigid metallic ones-I'll probably do that before the end of the year, since my deductible is met.
I just don't want to land in the ER again & want to do whatever I can to prevent that.
Do you have labs drawn more often or is the US & CTsufficient?
I'm so sorry you're wrestling with this as well & I so appreciate your input
I feel a so blindsided by this. I've been fighting the StageIV fight since my primary dx in May'02. I had liver mets & fought those back, had a liver resection in Dec'05 & since then have felt great relief that my liver has remained NED.
Now the threat of my kidneys has my spinning with fear again.
I'm sure my onc will want me to go back on chemo...I've only been off since last March (92 rounds to date) & just finished 7 weeks of rads 3 weeks ago for a 2nd supraclav mets recurrence.
I hate this disease so much. I hate it for all of us and for all of our loved ones & care givers that fight for us & with us.
It's a bit of a struggle these days, but...

Keeping the Faith~
Jessica

[hutchibk]

jml- what were your initial symptoms? urinary distress? kidney pain?

Hi!
Sorry so long to reply...As I sit here, 4 weeks after a 7 day icu/hospital stay for acute renal failure, I just can't believe it happened!
As for my symptoms leading to the crisis, it's all pretty confusing & I still can't isolate any one sympton. I was 3 weeks into 7 weeks of rads (for a 2nd supraclav recurrence) & started feeling really wiped out & having lots of general stomach discomfort. But I do recall one night of having more specific, severe pain, but it felt more like an obstruction in my bowel. My bp was a little elevated & I was running a low grade fever too & that continued for the next few weeks. I really thought I was just run-down from daily radiation, working too much and I thought I was having a really bad reaction to the ragweed in Atlanta (as I do every year!)
I wasn't able to keep much food/drink down b/c everything in my belly just felt "stuck". If I ate or drank much of anything, it didn't feel like there was enough room down there, so I'd end up vomiting.And would sleep every chance I got. No flank pain, just belly discomfort like being severely constipated. I didn't notice that I wasn't pee'ing much b/c I wasn't drinking much either!Somehow I was still pushing through, teaching Pilates, keeping up with my schedule as much as possible, but feeling really crummy.
On the last day of my rads, I saw the rad.onc & they examined me, but nothing obvious at all. From my symptoms, it really did seem like I had a bad stomach bug. A cbc at that time would have revealed that my kidneys were under stress, but I was going out of town for the next 5 days to visit family, but agreed to come in after I got back for a full lab work-up.
Unfortunately I ended up crashing while I was away and that's what led me to the ER.
My sisters tell me that in those 5 days that I was looking really puffy, sleeping alot, not eating or drinking much & vomiting - we thought I was just dehydrated & wiped out from all the rads.
By the time I was dx'd properly, my blood chemistry was so out of control-potassium way high & creatinine 24 times the normal limit - I'm told it "NEVER gets that high, it's impossible", but ironically, the docs kept telling me I 'look good for a creatinine of 24!"
Fortunately all the efforts by the docs in San Francisco were successful & my kidneys rebounded within 24 hours. Thank GOD!
I was finally able to have a PET/CT w/contrast (had to wait until recently b/c the contrast is so hard on the kidneys) & we -onc, urologist- were certain the scan would reveal a cluster of mets in the nodes surrounding the ureters, hence causing the bilateral obstruction.
BUT, strangely,suprsisingly, miraculously & perplexingly, there is NO EVIDECE of any disease or otherwise that would have caused the problem.
Unfortunately, we did see some nodes under my sternum that are acting up so I've started back Gemzar + Herceptin & figure if there is anything down there that we're not able to see, the GH will clean it up along with the medistinal nodes.
At this point, I'm grateful that there isn't a giant obvious cluster of mets that could have caused the problem & all my docs are very perplexed. As am I...but I'm not afraid to call it another tiny, little miracle that everything down there looks like nothing every happened.
My disease has been a bit of a conundrum & doesn't follow any rules - good or bad.
So all we can do is take it one day at a time, or one scan at a time.

Physically, I feel great - like nothing ever happened. Except for the stents are a little problematic - I feel like my 2yo niece who's just newly potty trained - b/c when I need to go, I NEED TO GO! Otherwise,I'm really fortunate that I don't have any other issues.

All I know is the next time (if there is a next time) that I begin to feel even remotely like I did last time, I'm RUNNING to the lab to have blood work drawn!

Hope this info is helpful...hope you NEVER have to experience it!

jessica

[Lien]

Phew!!! That's good news Jessica! Could it have been allergy related? I'm allergic to lots of foods and was having similar symptoms. ER, night in the hospital, US, X-rays, coloscopy, the works. And then, I realized it could be my diet. So I eliminated rice, the last grain I was able to eat, and felt sooo much better. As soon as I reintroduce rice, I get symptoms again. Feeling bloated, constipated, run down, tired, etc.

So it may have been the ragweed exacerbated by rads. Who knows?
May the GH eradicate all cancer cells and may you see many ragweed seasons without too much discomfort.

Hugs

Jacqueline

[karenann]

Jessica,

Love hearing your good news!

Hugs,
Karen

I really appreciate all the encouraging words!
When all of this stuff happened, I was really really bummed out & scared.
Hadn't felt that way since I was 1st dx'd. I wanted to sell all of my belongings, build a
raft & just wash out to sea!
But as I have before, as we all have on multiple occassions, that darkness passes and we
pull ourselves back onto our feet, kick this disease in its ugly face & move on again.
Jacqueline - it does seem like it may have been the "perfect storm" of circumstances leading to the "kidney crash". the clinical oncs find it very hard to believe that this crisis was related to my disease because 1)there were bilateral obstructions that occurred at the same time & cancer is typically much more random than that, 2)the PET scan would/should show nodes that are large enough to cause strictures to both ureters.
It is interesting that you should mention allergies - the ONLY person to even consider the cause of the strictres to be a "massive immune response/reaction in those lymph nodes" was the Rn who took care of me while I was in hospital!
Otherwise, all the other docs-urologist, etc- feel certain that it's GOT to be my disease.
We just may never know...and I'm okay with that.
It's just another thing to be aware of & deal with as needed.

Thank you again for your kind words.
We're all in this together & hope that I can/have returned a fraction of the kindness, compassion & support that I've received from so many, on so many occassions.

Keep the Faith,

Jessica

[Jackie07]

Jessica,

What an ordeal! Glad you are OK now. Just wanted to comment on your words 'I wanted to sell all of my belongings, build a raft & just wash out to sea!'.

One of the most famous poets in Chinese history, Li Po, had written a similar phrase. After describing his sorrow of saying farewell to his best friend (who was relocating to another place), he said that 'since this life is so unsatisfying, I am going to let down my hair and sail the raft [in the river].

Chinese men used to keep long hair because Confucius had said that one should not inflict any damage to the body that is given by one's parents. (Back in his time, 3000 years ago,'tatooing' was becoming a fad)The long hair tradition went away after the Republic was established in 1911and people were no longer 'forced' to keep long, breaded hair style decreeded by the Manchu Dynasty which was established by a NorthEastern tribe.

'Sailing away' is obviously a universal desire to 'get away'.