32 year old female with neobladder

Posted by: Angela in women's issuesneobladder or pouchmens issues on Print PDF

Thank you all for your kind responses.  

I wanted to update a bit on my story - yesterday I had to have an ultrasound of my leg due to a painful lump that has formed on my calf.  I have also been having some intense abdominal pain and swelling in my lower right quadrant.  So, this morning, I had an abdominal/pelvic CT scan.  The ultrasound did not indicate any cause for concern (i.e. blood clots, masses, etc.) and I am hoping to know the results of the CT scan by the end of the day today.  

I had a bit of a meltdown during and after the CT.   I have prided myself so much on being strong, but I am finding myself getting wearier and wearier and it frustrates me.  For the CT, I had to have IV contrast.  Unfortunately for me, I have tiny, very deep veins and hardly ever get an IV on the first stick.  When I was in the hospital after my radical cystectomy, my arms were literally black and blue.  I looked like I had been assaulted.  Three of my IV's had blown, the back of one of my arms was filled with fluid, and each day I had to have blood drawn which meant numerous attempts and more blown veins.  My nurses and lab techs were really insensitive too - It was horrible and very painful.  I am 10 weeks post op and still have hematoma in my right arm in several locations.  So, needless to say, I was really dreading the IV today.  It took three sticks by the IV team!  I got very nervous and started crying, shaking and had trouble breathing.  The first IV pump didn't work and as a result the contrast blew out of the IV and all over my arm and in my hair.... and once the contrast did start flowing, I ended up having a reaction either from the itand/or from stress and vomited.  I was so embarrassed.  

When the scan was done, I went out in the hall and just lost it.  The thought of having to go through this over and over is overwhelming.  How do you cope with the fear and anxiety of having the tests, much less getting bad news again?   :'(




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Survivor
August 24, 2006

Angela,
  I can really feel your pain . I have deep, tiny viens too and dread any IV.  Before every chemo treatment, I used to pray just for getting the needle in. Since I have a shunt in one of my arms, they are allowed to stick needles only in my right arm , which makes it worse. I even walked out once smilies/cry.gif  without doing any scan after they poked me four times.  If you feel the nurses are insensitive, tell them you need an expert . Some nurses dont realise that they are poking into humans.I had a guy who thought he had hit a tendon instead of a vein and was still poking , inspite of seeing a tearful me. Nowadays,after some very bitter experiences, I tell them that I have very thin veins and ask for a real expert. If the person says she can handle it, I wait for one poke . If it is not successful, I ask them to wrap my arm with warm cloth and ask for someone else. If you know some nurse who can find it easily, ask for her. They have to oblige to our requests.
    Good luck with your CT scan. I am a very paranoid person too inspite of being strong.I think we can never let go the fear of recurrence. I was almost sure that I had liver metastatis before my last MRI. It turned out to be fine ,though.I had muscle-invasive TCC in my ureter, had my kidney removed and have been told that there is a 50% chance of getting it in my bladder. I watch my urine everytime I pee. I am sensitive to every single muscle movement and pain in my body , especially as the scan date & cystocopy gets nearer. What you are going through is normal. Hang in there. Keep us posted with your CT scan.

-Shoba.

kc-northstar
August 24, 2006

Angela,

   You may want to get counsuling from a phyciatrist about your stress problems.
Durring my worst time with BC I seeked help and they gave me a mild tranquilizer
that helped me get through the worst.  You cant heal properly if you are under
great stress.  Also I found that the stress was preventing me from living my
life.  One way or another I hope you can get some relief and I wish you all the
best.  Some people have a stigma about seeking phyciatric help, but no one facing
the stress of cancer should feel that way.  You have to treat both the physical and
emotional issues of cancer.

wishing you the best,

KC

Angela
August 25, 2006

Shoba and KC - thanks for the messages.   I am always comforted by the responses I get from this site.  

I heard back from my doctor regarding the CT scan results.  No mets was found (WHEW!), however a 2 cm cystic structure was found in the right side of my abdomen.   The urologist said it's probably part of my right ovary or possibly the tip of my neobladder.  I'm not entirely sure what that all means for me, but he said he is not concerned nor should I be.  Of course, I am though...  :-/  The urologist stated he has no explanation for why I'm experiencing pain in my lower right quadrant but, I feel like it has to be related to the cyst???  So, I'm on a mission to find out what the cyst is and/or what caused it.  My greatest fear is that the cyst is ovarian cancer.... I will see my gynecologist for my annual exam in a few weeks and am going to mention it to her.  I looked up ovarian cancer symptoms and I have some of the symptoms, but I also know it's easy to read into things.... so, I guess I'll just sit tight and see what the gynecologist recommends.  And to think, I just told all my friends that I had been cutting down on the number of hours per day I spend on webmd.com!  ha ha...

My four year old told me this morning that the street looked "slickery" due to the rain.  So, I have come up with a new philosophy:  "When the road ahead looks slickery, be sure to pack your ice skates"... Here's to skating beautifully through our fears and battles and hope that we don't fall on our tail!   smilies/smiley.gif

One final note, just curious if any of you are in Missouri?  Take care and have a nice weekend, Angela

kc-northstar
August 25, 2006

Angela,

   Glad to hear you scan came back normal and no mets were found.   It is pretty normal to feel like every pain
you have is the cancer comming back.   I had a sore knee shortly after my original BC diagnosis and was sure
it was mets in my bones.  Then I had a pain in my side and was sure that it was cancer in the pelvis.  All turned
out to be nothing.  Of course you need to have any symtoms checked out by your doctor, but it almost always
turns out to be nothing.  Hang in there,  Im sure things will get better.

Wishing you the Best,
   KC

Lou Graham
August 25, 2006

Angela,

I remember practically holding my breath between follow-up appointments in the beginning, like KC I too thought every ache and pain was something related to my cancer.  The first time my surgeon said he'd see me in six months instead of three, I told him I wasn't sure I could wait that long.  He told me I could call and talk with him if I had anything that was worrying me, he's been really good about it especially in the beginning.  But then I guess that's when we need it the most, and before long we learn that we can actually do something besides worry.
Of course, kids will probably keep a person on their toes and not so much in the worrying mode.  Especially when they're young like yours, Angela, and I love the slickery philosophy.  Sounds like the title of a great kids book.
Really great news about your scan, and when your doctor said he really wasn't concerned and you shouldn't worry, I think he probably knows what he's talking about.  Cystic means fluid filled sac and 2 cm's are less than an inch, it's probably something that's been there.  Remember your surgeon was digging around in there inspecting things during your surgery, or at least I assume that.  I've read my surgical note and it describes everything they do, and that's what was done in my case.  That is they pulled things out (or just moved them around a bit so they could see them) so they could inspect them for any visible signs of metastatic disease.  They also are able to inspect things as they remove other organs, and your surgeon probably inspected both ovaries so as to decide which one to take.  That then means he inspected the one you still have, and believe me nothing cancerous grows so fast as to cause the kind of pain you're describing.
As the others have mentioned, we're all scared to death in the beginning that every little pain is something horrible.  Just know that it probably is just like your surgeon said, "Nothing to worry about".  

God Bless,

Lou

Rosemary
August 25, 2006

I wonder if it is maybe just an ovarian cyst?  That could certainly cause the pain that you are describing.  I think that if he told you not to worry about it, then he is probably telling you the truth and he probably knows what he is talking about.

Why was your ovary removed anyway?  smilies/grin.gifid it have anything to do with BC?


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