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Worries about health 6 months after surgery

Jed the Humanoid
Posts: 7
Joined: May 2017

Hello everyone! I have learned a lot from reading your posts since my own experiences with kidney cancer began and finally found the courage to join you all a few days ago.

My own kidney cancer journey began several months ago when an ultrasound revealed a small mass on my kidney. The mass turned out to be a 1.2cm clear cell tumor which was taken out using the robotic laparoscopy. I spent some time healing and went back to work hoping that I could get on with things, but lately my body has started to show some unusual symptoms and it is all now playing on my nerves a lot.

I have had a weakness in my arm for a number of years and despite going to hospitals never managed to find out what was causing it. Those symptoms are still with me. I also have a weak leg on the same side of the body, but put it down to a sports injury I got many years ago. Several weeks ago though, I felt tired in the evening and decided to take a picture to see if everything was okay. It wasn't okay. There was an obvious sign of ptsosis in one of my eyes, the same side that my general weakness was on. Sometimes you barely notice it, but at other times it looks really odd. All my checks are now done at the same hospital and I have tried to get to the bottom of it, but it is taking time and I am seeing different departments. The weakness is only one side of my body.

The opthamologists have done checks and think it may be myasthenia gravis. At the back of my mind though, I am worried that it may be something connected to my original cancer diagnosis. I recently had a very bad cold and several weeks later my voice is still weak. Again, that could be a symptom of MG, but I have also read that my symptoms are similar to people diagnosed with lung cancer and my other concern is that it might be the brain. The stress means I am not sleeping very well lately and so my mind is enveloped in a sheet of fog and so I am not sure that my brain is okay! I see the nerve/brain specialist next week. I am also seeing a doctor about my arm. The nerve tests show no abnormalities.

I also checked my thyroid as I read that there can be a connection between the thyroid and ptosis, but my results showed nothing related to that. What they did show however was a liver reading that was unusually high and saw me transferred to an internal organs specialist. They think it is nothing serious, but I have an ultrasound and more blood tests to check further. It is unusual because I no longer drink having had cancer and even when I did drink my readings were always fine.

I have also had my first follow up checks for my RCC and of course that is really, really important, but I seem to have a whirlwind of things going on and I am getting a bit depressed by it all. I am really worried by it all. I thought a small tumor would be relatively easy going in the great scheme of things and had no idea all these other things would be going on. I have spent a lot of time in the hospital lately and don't seem to able to get any answers yet.

Am I panicking too much? And what is the best way to handle the stress? I find it hard to do anything but try to get to the bottom of what is going on and so my mind is hyperactive trying to put the dots together as I worry that MG is overlooking the possibility of cancer. MG would be very bad, but probably quite manageable. The alternative is something much more unpredictable and intimidating. I get the results of my first follow up kidney tests next week. It's not easy.

 

 

 

 

 

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

Jed,

 

You had a very small tumor. It  is now gone. At 1.2 cn it is highly unusual that it spread.

You just had major abdominal sugery. It was not fun.

If Iwere in Vegas I would bet on a Cancer free recovery.

 

 

Icemantoo

APny's picture
APny
Posts: 1969
Joined: Mar 2014

The worst part of having had cancer is that you filter every single symptom through it and think it's gone elsewhere. It's truly life changing in that. So are you panickinig too much? Yes, most likely. Is it understandable that you're panicking? Yes, very much so. However, as Iceman said above, at such a small size it is very unlikely to have spread anywhere so I really don't think your other issues are connected to it. You're seeing a nerve/brain specialist so hopefully he/she will have some answers for you. In my experience a large number of neurological issues are what doctors like to call "idiopathic." Meaning they have no clue what's causing them and are rarely serious and resolve on their own. Hang in there and try not to stress over it having spread; it really is highly unlikely.

DreamOnDeb
Posts: 112
Joined: May 2017

Hi Jed.  I'm not a doctor, but your mind can play terrible tricks on you.  I agree with what Icemantoo said.  I don't believe any of this is related to your kidney cancer.  One time, my husband had elevated liver enzymes, so they sent him to a specialist.  After taking more blood, it was back to normal.  There are many, many things that can elevate liver enzymes, such as prescription medications and even over-the-counter pain medications, etc.  Regarding your weakness in your left arm and left leg, look up "Functional Limb Weakness" on nerosymptoms.org. I used to work with a woman who they diagnosed as having that.  You said you've had that for a number of years already.  Like I said, I'm not a doctor, but yes, I think you may be panicking too much.  Usually doctors try and rule out the worst thing that it could be first, which tends to give people a lot of anxiety.  Try and make an appointment with a neurologist.  He/she may be able to get to the bottom of your weakness, and if it's what I "think" it could "possibly" be, it's not life-threatening.  It can't hurt to mention this and ask if it could possibly be that.  You have nothing to lose.  I also think your mind is running away with you for thinking you may have lung cancer.  Once again, I'm not a doctor, but having a bad cold with your voice still being weak doesn't mean you have lung cancer.  I would try and relax and de-stress.  Do some deep breathing exercises...go out and do things you enjoy doing...get your mind off of everything...and enjoy the weekend!

Jan4you's picture
Jan4you
Posts: 1324
Joined: Oct 2013

I am sorry for all you are enduring. Yes, your tumor was small, but my gut is saying this weakness may be totally unrelated to your RCC.

My suggestion is to see either a Rheumtologist or Neurologist. They both have a variety of tests which can rule IN/OUT many type of treatable disorders/diseases.

I hear ya. You can send me an email on here if you like.

I will be here for you. 

Sending you calm, hope and healing!

Jan

Jed the Humanoid
Posts: 7
Joined: May 2017

Thank you for the reassuring replies!

I was really doing very well for the first 4 months or so after surgery, but with the appearance of the ptosis in my eye, I definitely started to worry a lot more. I have never had any problems with my eyes before and even something like a cold would never affect me like it did. I think it took me 3 full weeks to shake it off and it just didn't seem right. Then of course, my sleep started to suffer and with all the checks for my arm, my thyroid, now liver, my eye, now brain etc and last week my kidney follow up checks I think it all became a bit too heavy and exhausting. You try to piece it all together like a jigsaw: "Ah, so I have all the symptoms of a pancoast tumor, why are they not looking for that?".....cue more anxiety. Undecided

 

You are right, I have to get back that mindset that was working so well for that 4 month period where I rested and then went back to work and it was all going okay. The eye is freaking me out a bit, but certainly at times it looks somewhat normal. It's odd. I have big eyes, but one looks smaller now and the lid comes down when I read or get tired. I am going to try and stay calm, get on with my week and then at the end when I have something like 6 different appointments just do them one at a time and see if we can either rule things out or look into more options. 

And of course the results of the first kidney checks will be in. Fun times!

 

 

 

Jed the Humanoid
Posts: 7
Joined: May 2017

I got the results of my first 6 month follow up check and NED! No sign of the kidney cancer, the kidneys are performing well, and the lungs look clean too. It is a good day!

DreamOnDeb
Posts: 112
Joined: May 2017

That's FABULOUS, Jed!

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Heck yeah!!!! Now send NED on his way to visit the next person on the list.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Enjoy the news after so much stress..you deserve it.

stub1969's picture
stub1969
Posts: 817
Joined: Jul 2016

Great news!  Enjoy!

Stub

daisybud's picture
daisybud
Posts: 470
Joined: Jan 2016

Happy for you

Kim

Jed the Humanoid
Posts: 7
Joined: May 2017

Today I checked my liver and the ultrasound came back clear. I also saw the neurologist who doesn't think my ptosis is MG or a tumor either. He told me to wait and if it gets any worse to come back. Maybe my body is telling me I need to slow down. I have worked hard since coming back from the cancer surgery plus a few stresses and strains along the way.

I am not sure what is happening with my eye, but knowing everything else seems to be doing okay is a weight off of my mind. 

This is a great forum and it is great to be around people who really understand what it can be like emotionally. So glad I found the courage to join you all here. 

May the NED be with you all! 

 

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