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It just doesn't end

APny's picture
APny
Posts: 1904
Joined: Mar 2014

So I was recovering great from my March partial neph and my follow up blood test on the 30th of April was just about perfect. Fast forward just 2 weeks and I feel run down, tired and draggy and my heart is racing from doing even very little. My internist does a blood test and my hemoglobin dropped from 12.8 two weeks prior to just 6.7. Sends me to hospital, I get a blood transfusion, and they do a CT scan. It shows a 4.5 cm hematoma in kidney, but no way to tell if it’s new, contributing to low blood count, or old from after surgery, causing no harm now. There was also a 1.2 cm cyst on same kidney’s upper pole. That was not there on the CT and US prior to surgery so where did it come from and what is it? I’m having an endoscopy next week, then a colonoscopy after to rule out GI bleeding. I know compared to what many of you are going through this is nothing but the sudden drop of hemoglobin, the good size hematoma, and this new cyst are scaring me to death. I'm so afraid the cancer is back and/or that I'm bleeding somewhere internally which means more surgery Cry

Txgrl
Posts: 31
Joined: Apr 2014

Did they say simple or complex cyst? They say simple cysts are harmless.

N_Woods_Gal
Posts: 19
Joined: Feb 2013

APny,

Please don't discount your bumps in the road as "nothing". Just writing and sharing can help so much w/ anxiety. (Even if you only hit submit once in every hundred times!) I wish you quick answers w/ easy solutions. 

Hitting it this time...  : )

icemantoo's picture
icemantoo
Posts: 3181
Joined: Jan 2010

APny,

I looked back at our ealier exchanges back in March and everthing seemed well. I hope the doctors' can get you back to good health which may or may not be RCC related.

 

Icemantoo

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thank you N_Woods_Gal. I appreciate the kind words. You’re right; to me it’s very much “something" and I can't help but stress over it.

 

Icemantoo, yes, I was doing so well. And the mention of a cyst is troubling me because why didn't it show up on my pre-surgery CT scan or US? So between that I'm my low hemoglobin I'm very worried. Trying to get a hold of my surgeon at Sloan Kettering on a holiday weekend is not easy either.

Txgrl, it just says cyst.

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Hope you get some answers soon to why you are feeling so horrible. Good luck with the tests. Thinking of you.

Hugs Melissa

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thanks so much, Melissa. I really appreciate it. And I'm hoping your husband's turns out to be just a hematoma. I have a good sized one (4.5 cm) myself so as Fox said in your thread, it's possible.  

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

I hope so too but he had had a ct with contrast so guess it looked like cancer. We are going to hospital to get a copy of our scan. Two different people have discouraged us from seeing  the report. We saw the scan and it sure looked big. Don't know what the report can say that would be more disturbing than what we saw!!

Hugs Melissa

APny's picture
APny
Posts: 1904
Joined: Mar 2014

My prayers and good wishes are with you both!

 

Andi

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi APny, 

I am sorry to hear you are going through so much at the moment, please don't diminish your problems by comparing them to others, we are in this together! I hope that this is resolved quickly! good luck with the tests this week, are they doing the colonoscopy and endoscopy at the same time? I will be thinking of you and praying for the best!

Djinnie xx

 

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Djinnie, you're a sweetheart. Thank you so much. No, she's doing the endoscopy first because she wants to make sure my hemoglobin is up enough for colonoscopy in case there's bleeding from removing polyps, etc. I wish it could be all done at once. I can deal with just about anything if I know what it is and what needs to be done to correct it. It's the utter mystery about my blood count drop and what the heck that new cyst is that's doing my head in. But thank you again and hope you're doing well!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Always something isn't there? Keep your head above water. You'll get throught this. I'm so happy that everyone gets followed closely. But I guess when that happens, stuff happens too. Stay strong.

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thank you, Fox. You're one of my main inspirations on this board. Love your positive attitude and optimism so I hope some rub off on me if I post here long enough :)

aamdsi
Posts: 284
Joined: Apr 2014

That you are going through all of this.  Nothing is scarier than the unknown.  Am crossing all fingers and toes and sending good thoughts your way that evrything turns out all right and you can relax and continue to heal.

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thank you so much, aamdsi. You're right it's the unknown. I really appreciate all the good wishes and support here. It's a huge help.

aamdsi
Posts: 284
Joined: Apr 2014

In March?  Had mine 3/3.  So, we are 12 week buddies 8-)

don't know about you, but I am slightly a type A personality.  Having NO CONTROL over any of this is stressful enough. But to also be so "lost" in the hopital, doctor, scans, results thingies is almost too much.  

At least here, at a club we all never wanted to join, there are others.  It helps for me to read about those, like Icemantoo, who is 12 years out.  Gives me hope

APny's picture
APny
Posts: 1904
Joined: Mar 2014

I'm exactly like that. I hate not knowing, not having control, being at the mercy and whim of doctors who don't call back and let you worry endlessly. It sucks. But yes, it does help reaching out to others and feeling like there are people who do understand. I don't think doctors do at all; not unless they've gone through it themselves.

safado
Posts: 18
Joined: May 2014

VERY TRUE APny.

I was diagnosed with RCC at the end of March 2014.  As "luck" would have it, my PCP had his own partial nephrectomy late last year and as such he was VERY well versed in the condition, options, outcome probabilities, etc.  He had already done all the research I was planning on doing.

Do you have diabetes?  Seek out a doc who has it too!

Do you have cancer?  Seek out a doc who has/had it too!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi APny,

I am so sorry you have this to deal with. Life can sure be challenging at times, can't it? Stay strong and positive. We are all hoping for the best possible results for you.

Big Hugs

Jojo

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thank you so much! Finally got an appointment with my surgeon (urologic oncologist) tomorrow so we'll see what he says. And an endoscopy today to rule out upper GI bleed. Fun never ends, lol.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Hi. Sorry to hear you're having complications. I hope they get it sorted out soon.

That's really odd about the 1.2 cm cyst that wasn't there before. You might want to see if they can pull and re-read your previous CT. From what I've read about growth rates (of simple cysts as well as RCC tumors), they don't grow that fast. It might be that a small, simple cyst might not get mentioned by a radiologist in a report (or it might not get on the summary section but might have been buried in the detail).

It might make you feel better knowing what happened. Do you have the full report from that CT? For me, there were 3 x CTs done at 2 different times. The first CT was a regular CT that found my tumor and the second CT was done both with and without contrast. So you might even have 3 CTs to look at. That other cyst really should have been there.

Also, about your hemoglobin, do you get a full copy of your blood test results each time? For the tests I've had, 12.8 is already below normal (although just below). I wonder if it was flagged as low on your first test? I know docs sometimes ignore borderline low/high values... I always try to get full copies for my records now and I look through myself. I noticed on some of my earlier tests before my tumor was found, I had some normal but changing values that might have been good to look into. Anyways, I like having copies and I also like going through each abnormal value and asking the doctor what it means. Sometimes I feel like they scan so fast they might miss a low number here or there (particularly if it's not flagged).

I hope they figure out quickly what's wrong and it resolves soon.

All the best,

Todd

 

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Todd, thank you. Yes, 12.8 would be low for a man (13.5 is lower limit for you guys) but normal for women (12 is lower limit). I do get the full report and everything was below normal on my last test. It's slowly rising thanks to blood transfusion and iron IV series. What is so troubling is the sudden drop in two weeks from 12.8 to 6.7. Clearly there's internal bleeding but where? Had endoscopy yesterday and that was fine. No full results but no obvious signs of anything that would bleed.

The new cyst... no, it didn't show on my last CT scan (the one that identified my RCC) which was with contrast. Sloan also had an US done to confirm RCC and that didn't mention it either. This most recent CT on the 17th was done to check on what may be bleeding and it was wihtout contrast since they didn't want to do that with my recent nephrectomy. All it says is 1.2 cm cyst. Could be nothing, and let's hope so otherwise it's one fast growing little %$#@ and having two tumors in one kidney would be really rare. I'm seeing my surgeon at Sloan Kettering today and bringing the CT disc with me. We'll see what he says. About 10 years ago a CT for something else made mention of a small simple cyst in the exact same place this one is. Maybe it's the same one.

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Apny,

I am glad to hear the endoscopy was fine! Although it does not resolve your problem, it a positive start to the process of elimination. I hope the meeting with your Surgeon goes well today; and you get news to put your mind to rest; about the cyst at least! All the best:)

 

Djinnie x

APny's picture
APny
Posts: 1904
Joined: Mar 2014

Thank you Djinnie, I'll post what he said. And I'm hoping for the best for you as well and that you get the ok for that much needed weekend getaway to Lake Como :)

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