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New Member: My Story

Emy101
Posts: 2
Joined: Aug 2013

Hi. My name is Emily. I am a 26 year old teacher living in PA. I had a partial nephrectomy on the right side 2 weeks ago today. My doctor told me the 2.3 cm mass turned out to be a chromophobe. Everything has happened incredibly fast and I've found myself at a loss for how to process it all. Here's my story.

About two years ago, I was undergoing some routine testing when I got a phone call from my doctor saying that my liver values were extremely elevated. I went through a battery of imaging and testing only to be told that there must have been a lab error as there was nothing wrong with my liver. But the radiologists did find a small lesion on my right kidney though it was nothing to worry about, probably a cyst, but would be monitored. My gastroenterologist ran all the tests and passed the information onto my general practiioner urging her to follow up. At the time, I had been so worried about the results in regards to my liver that I don't think I fully grasped the situation and certainly didn't feel comfortable asking questions. I don't think I even felt the need to ask questions as noone seemed too concerned.

Fast forward to July 2013. I saw my gastroenterologist again for a regular check up. I wasn't planning on sharing any new complaints but as he asked me questions I realized I had been experiencing some new pain in the middle of my abdomen, right below my chest. My doctor, concerned about gallstones, sent me to have an ultrasound where the technician found, no gallstones, but that the lesion on my right kidney had grown. This of course launched a referral to a urologist along with additional testing.

The urologist told me before I had an MRI that there were 3 possibilities: a cyst, a blockage, or a tumor. Once the MRI ruled out the other two options, he said that because of the complexity of the tumor's location he would have to remove the whole kidney but that he wasn't comfortable doing so without a biopsy which is apparently risky as it can spread cancer cells to other parts of the body and is done by a radiologist, not the doctor. This was the first time in the process I began to feel emotional. He is telling me that it's a very small tumor, if it's even a tumor at all, and yet in the same breath he's talking about removing the whole kidney? Don't get me wrong, I would've done it in a heartbeat if it was going to save my life but something about the doctor, his treatment plan, and his overall demeanor made me uncomfortable.

At this point I saught a 2nd opinion from a doctor in NYC that was recommended to me by a friend. He was wonderful. He told me given my age and the small size of the tumor he would do everything he could to save the kidney and we planned for a partial nephrectomy. I had surgery on July 30th. It was rough. I had a reaction to the morphine so I had to be taken off of it a few hours after surgery. The pain was so intense that everytime I was asked to move, my blood pressure and heart rate would go way up. I was on oxygen for the first 24 hours and my blood counts were all over the place. I had a catheter and a drain and I was miserable. And all they kept asking me to do was get out of bed, walk, etc. In retrospect, I understand. Being more active did get me out of the hospital sooner and it did help my recovery. But at the time, it was just awful.

Now I just have so many feelings and emotions about the whole thing. It's an incredibly strange feeling to have been told for 3 weeks that you may have cancer and then all the sudden they say well you did have cancer but now it's gone. I'm just trying to catch up mentally and emotionally. I don't really know what this means in terms of the rest of my life. I know that this particular type of cancer has a low reoccurence rate but I wonder if I'm more likely to develop other types of cancers. I've kind of been through this before as my little sister is a survivor of Hodgkin's lymphoma, diagnosed at 17 years old. But she went through surgery and chemo, lost her hair, gained a bunch of weight. I kind of feel like a cancer "fraud" in comparison. And then there's my poor mother who can't help but wonder how she ended up with 2 kids with cancer. It's all just...a lot.

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

Just cant understand it either. Always in decent shape physically as far as sports go, not sure mentally, rarely smoked, drugs a no go aside from the rare painkiller or puff, dont know anyone in my blood chain that had any cancer, and bang was told I had a 2.5 cm tumor on my lower left kidney. Had it removed by that Da Vinci surgery, Waiting til Dec to see if I'm still normal. Its just bad luck thats what I think. Could have been many things, I remember those BBQ'd wings I ate once that were so overdone they looked like lumps of charcoal, still ate them, I remember sucking fumes many times cause I was too lazy to fix it outside in the fresh air, aspartame is in me from 1000's of diet Pepsi's since 12. Just don't know....we'll see, step by step,

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Amy,

 

 You should be fine as far as Kidney Cancer. Those of us diagnosed with tumors under 4 cm and have had the surgery are likely to lead long, normal lives. The only thing different about your situation is that you are so young although we have a handful of club members younger than you. Being young makes your recovery easier. I was a young 59 when I was diagnoed 11 years ago and had my surgery. Faye across the street was 64 when she was diagnosed and is now 82.

 

Whats wrong with having Cancer and being cured after going through a not so fun surgery and than not having cancer aymore. Nothing.

 

There are plenty of members with a much more difficult journey as a result of having there tumor discovered much later after the tumor grew and matastisized. You do not want that. They would change their diagnosis and prognosis with you in a heartbeat.

 

Although your recurrance rate is close to zero you do have to lead a kidney heathy life  which you can look into after fell a little better.

 

 

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Emily, I'm compiling a database of chromophobe patients and would be most grateful if I can add your data to it.  I gather that you're based in the US, are female, 26, recently diagnosed, have just had a nephrectomy for a 2.3 cm right kidney tumour and that you're not on any further treatment. 

If you would be so kind, I'd like to know the month of your diagnosis, the stage and grade that were assigned in your path report, your ethnicity and your blood group.  Some interesting looking patterns seem to be emerging but I'm keen to gather as much more data as I can in order to elevate trends into statistical significance.

Your prognosis is excellent.  As you say, likelihood of recurrence is very remote and you are at no increased risk of other forms of cancer - probably even less likely, since you will doubtless be extra careful about your diet and other aspects of your lifestyle than in the past.  Your parents must feel a bit shell-shocked - not so much that you and your Sister both had cancer (since it's a very common disease) but that you both had it occur at such a young age.

Your own reactions are absolutely natural, normal and understandable - most of us feel/felt the same way - so just accept that you will soon start to get your head round it all and it will become easier quite soon.  I hope you can give me the extra data for my db and I hope we'll all hear cheering news of how it's going for you from now on.

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