Tuesday, November 10, 2009

Things have taken a turn.

I got some really bad news today from my doctor, and I've decided to write about it here, partly in a way to keep all of my info straight, and to work out my thoughts, but also because this is a good place to keep info for my family members and friends, since I tend to leave out pertinent information when I speak with them.

I met with my doctor today for my CT results. The CT scan that I had last week showed a suspicious mass on my right kidney that the doctor believes to be cancer. There's no way that we can know for sure that it is cancer until it is taken out and analyzed, but it looks and behaves that way, so we are treating it like it is.

My thoughts are a little scattered right now, and I am still a little stunned, so bear with me. This all started two months ago when I had a routine physical and my bloodwork came back funny. At the time, we thought it was a kidney infection, but a retest a month later showed the same thing. I began to have pain and other symptoms of a kidney infection, or so I thought, and was given antibiotics again. My regular doctor sent me for an ultrasound and referred me to a urologist, suggesting that perhaps I had kidney stones. Last week, the urologist looked at the ultrasound and told me that I had two cysts, one on each kidney, and that they were probably not cancer, but they weren't benign either. They were a rating of a 2 to 3 on the Bosniak scale, which Google told me was either an 18 or 33% chance of cancer. She told me the CT was to look for kidney stones, which could be a possible explanation of why someone so young would have that number of cysts in her kidneys.

Anyway, she sent me for the CT scan, and I came back for my appointment today to review the results. I saw the two cysts she had mentioned last week, which are apparently benign, as well as the tumor that appears to be cancer. She still classified it as a 3 on the Bosniak scale. (4 is the worst, sorry for the technical terms here.)

My understanding is that kidney cancer, when caught early, is not a terrible prognosis. Usually a section (or all) of the kidney is removed, and there is no chemo or radiation. However, there are a few potential complications in my case.

One is that the tumor is very small (1.5 cm), which seems like a good thing to me, but according to my doctor, it may be tricky for a surgeon to find it. I don't know how big of a deal that is.

Another potential complication is that the doctor is very perplexed about why I have the kidney cysts to begin with. She has been continually saying that it is very unusual for someone of my age with no prior family history and no other health problems or risk factors to have all of this going on. She wants me to get tested to rule out another major kidney disease and to test the function of my healthier kidney to make sure that it can support me since I will need to have some or all of the other one removed.

At this point I hope you'll forgive me for being technical, but my mom is going to be googling all of these things, so I need to go ahead and put it up here....The diseases I'm going to be tested for are Von Hippel-Lindau disease (this is a genetic disorder and seems very unlikely); polycystic kidney disease (also genetic and hopefully also unlikely); and medullary sponge kidney.

So. That is where the situation stands as of this evening. I've been referred to a nephrologist, whose first available appointment isn't until the end of November (gahhhh), and will likely get an MRI in between now and then.

Some of it doesn't make sense to me at this time, and hopefully I will get some clarification on things in the next few weeks, but I wanted to go ahead and write down what I know for now so I wouldn't forget.

I certainly hope that I will be able to look back on this blog post in a few months and remember it as "The Day We Got So Freaked Out About What Turned Out Fine". Until then, keep me in your prayers if you don't mind.

By the way, Tommy's tonsillectomy went well and the doctor told us he had an abscess behind his tonsils that had some scar tissue, which tells us it was a really good thing for us to go ahead with getting them out. That was a relief. He is tired and sore, but is recovering well and being such a good patient.

And just to show a little thankfulness, remember that contract that I was so upset about losing? If it had gone through, I would be in the middle of moving out this week. God had His hand in that situation, and I know this is no different.

14 comments:

  1. Oh Chrissy. Prayers for all of you. I'm sorry the news wasn't good. Crap.

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  2. Oh goodness.. keep us informed, I will be thinking about you. I don't understand these doctor appts taking so long. They should really put new pts up front so you don't have to wait all month.

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  3. You've answered a lot of questions for all of us. Appreciate having it all spelled out....as if you don't Google, too, Chrissy ;-) Love and Hugs and Prayers from Mama

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  4. Oh hon, I'm so sorry for your worry. But you are so right that God has His hand in all of it. Of course you are in my prayers.
    Glad to hear that Tommy's surgery went so well. You will all continue to be in my daily prayers.

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  5. Hey girl!! Faith was diagnosed at birth with Polycystic Kidney disease...she ended up not having it though...which I know was a gift from GOD because that is why she is still in my life!! I know that God can work miracles with you and your family too!! I love you so much and pray that HE lays his healing hands upon you!!

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  6. Oh girl, I know you and Greg are such a great team. Your faith is some of the strongest I have ever been priveledged to witness. I pray God will surround you with the support system you need and give you the peace that surpasses all understanding..If there is anything we can do, please let me know. LOVE YOU!!

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  7. I love you, I love you, I love you, I love you. You and your complicated Kidneys. I came back to blogging just for you and now how to wrap a present and tie three kinds of bows. Bonus.

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  8. Chrissy, lifting you up in prayer.God has His mighty hand all over this! Love you dear sister!

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  9. Chrissy, your big sister sent us here for an update. We'll keep you in our prayers and will bring our Aiken church family on board as well. We love you.

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  10. Oh Chrissy!

    First, I'll say blogging is a great way to keep medical information straight.

    Second, I'm praying for you!

    Third, I'm hoping that one day VERY SOON you look back on this as "The Day We Got So Freaked Out About What Turned Out Fine".

    Please keep us posted and know we are all thinking of you.

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  11. Thank you for sharing your diagnosis with us. It was a good idea of yours to put it down on paper to keep all of the information straight and to help you to work through it. I will pray for you as it is scary to not know what's next and frustrating to have to wait several weeks for doctor's appointments and test results. Thank you for being so open and honest and that, despite the negative news, you were able to be thankful for other things. That is a good testimony.

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  12. You and your family are in my prayers. I have faith that all will be well. I'm taking you and your kidneys to my Bible Study group tonight for extra strenght blessings! Hope to see you all soon.

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  13. I am praying for your and your family. Even now ...

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  14. Laurie Hodge said...

    Chrissy, I don't know you that well, but I served as a stage manager under Greg for a while at Bent Tree. I want you to know you are in my prayers. God is good and He is faithful. He got me through a pulmonary embolism which kills most people who get it. He will be with you throughout this ordeal. Just keep your faith and rely on His strength!

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