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Looking For Benefit of Experience

JZyla
Posts: 4
Joined: Sep 2017

Hey guys,

 

I'm a 42 year old man from Michigan.  After a July of feeling a little more run down than normal, although still keeping up my normal activities of walking the dog a mile a day, playing tennis and baseball, and hiking in the woods, I found myself feeling utterly fatigued and just generally drained by mid-August.  It was hard to get up the energy to take the dog to the dog park, for instance, and I wanted to nap 2 or 3 times a day, which was impacting my ability to sleep through the night.

 

On a Saturday morning I woke up and was unable to eat my breakfast -- it just didn't seem appealing -- and ate little throughout the day, continuing to feel fatigued.  By this point, anxiety began to overwhelm me and I took a trip to a nearby urgent care that accepts my insurance.  The doctor looked me over for maybe three minutes -- listened to the chest, looked down the throat and in the ears, and declared I had a sinus infection.  But from that point forward the fatigue and tiredness worsened and my appetite all but vanished.  All told I ended up going about a week to a week and a half without eating much more than a couple hundred calories of food in a single day and lost somewhere in the neighborhood of 15 pounds.  During this time, I visited a different, and better equipped, urgent care, who did just about the whole works on me.  Chest x-ray (negative), urine analysis (positive for UTI), complete metabolic panel and several other blood tests.  The Nurse practitioner also diagnosed me with a sinus infection.  The blood tests came back showing high WBC and specifically high neutrophils, as well as elevated alkaline phosphatase and low testosterone.

 

A few days later I saw my PCP, who gave me more or less a cursory once-over and said I'd be fine.

 

Two days after that, with my appetite still nonexistent and worried about that and my weight loss, I decided to go to the emergency room.  They admitted me to the hospital almost immediately and ran a series of tests.  Initial blood tests showed elevated neutrophils and WBC but those went back to normal after some IV antibiotics.  The tests also showed an elevated ALP, although all other liver enzymes were fine.  An abdominal and pelvic ultrasound and an abdominal CT scan showed, however, a 3.2cm solid mass on my left kidney as well as gallstones and sludge in my gallbladder.  All other internals -- liver, pancreas, spleen, etc -- looked normal on CT and ultrasound.

 

I have a long history of severe anxiety disorders going back to childhood, and anxiety and stress always make me feel much worse than I actually do.  In the hospital, in addition to giving me saline and antibiotics, they also gave me Ativan (which my PCP had refused to prescribe) and my my appetite immediately began to come back.  In fact, while in the hospital for 3 days, I was largely restless to the point that I badgered them into giving me a campus pass so I could wander around off my floor.  

 

While at the hospital I consulted with a Urologist and was discharged with orders to follow up with him within a week.  I got an appointment within a few days.  I have since consulted with two urologists (the initial one, and his partner, who is a surgeon) who both say that the size of my tumor and the evidence on the CT scan and the general prognosis with tumors of that size all suggest that there has been no spread and that the renal tumor is likely not causing my symptoms.  I have surgery scheduled for the 28th to have the turmor removed.

 

In the meantime, since being released from the hospital, my appetite has mostly returned to normal.  I have managed to gain back a pound or two, anyway, and am eating upwards of 2000 calories worth of food a day.  However, I am still feeling fatigued and achy, especially in my lower and middle back, and a test ordered by my PCP shows elevated bone-specific ALP.  I am stressed out about the prospect of bone metastasis, but I know that when I am on my anti-anxiety meds (PCP finally prescribed Klonopin along with Buspar) I feel better and 90% of my symptoms go away.  Still, the anxiety is like a monkey with its claws in my brain.  All the empirical evidence -- small tumor, nothing else amiss on the chest x ray, abdominal and pelvic ultrasound, and abdominal CT scan (as well as a very low PSA level) -- suggest there is nothing cancer-related that's causing my symptoms of fatigue and tiredness and general achiness.  Add to that my history of anxiety and the fact that when my anxiety and stress are at low ebb I feel fine, and I'm not quite sure what to believe.

 

Does anyone else have a similar experience?  If there is no evidence of metatasis to nearby tissue or lymph nodes in the CT, could the cancer have spread directly to the bone and not shown up on all those scans?  What could be causing the elevated bone-specific ALP?  I am a smoker, I have been taking Prilosec daily for about two years, and I probably don't get a lot of calcium in my diet (although my serum levels of calcium on the blood test were normal).  Two years ago or so I had bone pain in my shins when I started walking daily to get in shape and lose weight.  Prior to that I'd had problems with shin splints while playing roller hockey.  

 

Any advice would be appreciated greatly!

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

JZ,

At 3.2 cm surgery is the normal thing to do. Too large to watch and wait. Too small to normally spread. Your prognosis should be excellent. As far as wheter your other problems are related or not to this issue it is above my paygrade. Follow up with the PCP and your surgeon. I had my surgery at Troy Beaumont 15 years ago.

 

Icemantoo

JZyla
Posts: 4
Joined: Sep 2017

Mine is going to be done at Royal Oak Beaumont.  Which doctor performed your surgery?  Mine is going to be done by Dr. Nelson, but I'm not sure he's quite old enough to have been doing them 15 years ago.

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

JZ,

 

Mine was done by Dr. Kernen who was only a year or 2 out of his Fellowship. He is now chief of Urology at Beaumont Troy.

 

Icemantoo

 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Anxiety is a terrible thing. I could really do your head in. I took Xanax for quite a while during and after my kidney journey. And naturally interpreted every single ache and pain as metastases to just about everywhere it could possible go. However, at that small size (mine was also 3 cm + something, I don't remember exact size) it would be extremely unlikely to have spread to the bones. The fatigue and loss of appetite could have been due to an infection, which you obviously had since your WBC was elevated. But stress and anxiety are both energy suckers so I'm not surprised you still feel tired and draggy. Hopefully surgery will be the end of it and you'll feel well in no time. All the best to you!

JZyla
Posts: 4
Joined: Sep 2017

Thanks for sharing your experience and advice.  The logical part of my brain is completely certain that my symptoms are caused entirely by a combination of anxiety, stress, and perhaps lingering viral infection.  Additionally, the logical part of my brain knows that even a grade 4 3.x cm tumor cannot grow more than a few millimeters in the month or so since I've been feeling sick, that the odds of such a small tumor having spread are extremely remote (even more remote than having got kidney cancer at my age to begin with), and that all my other scans have been clear and show no signs of metastasis or other cancers.  But son of a ***** if that anxiety monkey isn't a persuasive fellow.  I'm hoping I can hold on until surgery without impulsively running off to the ER to demand a full set of head to toe scans and bloodwork.  Perhaps ironically, I think I'm also having anxiety over interdose withdrawal symptoms related to the Klonopin the doctor put me on.  It helps quiet the monkey, but after about 8 hours or so it starts to wear off and the monkey starts beating his cymbals.  Doctor has me taking it every 12 hours, so that's like 3-4 hours between doses where the monkey seems to have full reign.

 

I guess the positive thing is that my appetite is back and I'm eating well, even if not quite as voraciously as I did before becoming sick.  And there are moments, such as when I was engaged in a positive conversation with a general surgeon  yesterday regarding my gallbladder, that I feel positively well -- like I could have played a couple games of tennis, if perhaps not a full set.  Those moments are fleeting, but give me additional hope that most of my problem is in my head.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I don't know about Klonopin but I used to break my Xanax in half so I could take it more frequently. Even the half helped, and if it was just a placebo effect, who cares? Ask the doc if it's ok to break your Klonipin so that way you could take 1/2 every six hours instead of 12.

daisybud's picture
daisybud
Posts: 513
Joined: Jan 2016

And still do break my Xanax in half when needed as Apny suggested.  I agree, ask Dr if you can do the same thing going with your med.  I had surgery February 2016 and still need it occasionally.  Most often when wating for followup scans reports. Hang in there, sending good wishes your way.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

very much and knew only thru this network once wrote that hyphocondriacs should be spared from cancer!  Everyone should obviously and he meant it as a joke but the idea he wanted to get thru was the fact that for people like him or me the additional worry and stress and thinking ahead of reality, makes everything much more painful and scary!  I don't know if you think of yourself as such but since you do admit to being anxious and stressed, I repeat to you what he said to me almost 3 years ago and made so much sense to me!   Be well.

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

Marosa--I miss that man.

Stub

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Just the other day I saw an older post and dang, if Footstompers picture didn't pop up there.  Brought tears to my eyes.....I miss that dear man and his insights.

Donna~

Deanie0916
Posts: 425
Joined: Nov 2016

Thanks for sharing and let us know how things are going. I know it is so difficult not to worry. Hope that you get some peace. Marosa, thanks for sharing Footstomper's wisdom an humor.

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