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Newly diagnosed

mrsleavitt
Posts: 5
Joined: Oct 2012

Hi...I've been a lurker here for a couple months but was hesitant to post since I didn't have a definite diagnosis yet.

A little background first: My name is Amanda, I'm 32, married and mom to two crazy boys, ages 14 and 5. I've always taken pride that I am (was) extremely healthy. I eat good, try to stay active...you know, everything they tell you to do to avoid any of the "bad" diseases. I mean, I'm not a complete health nut, but I do as much as I can and have time for.

Anyhow, I'd been having problems with the doctors finding microscopic blood in my urine since I was pregnancy for my youngest child. After I had him, my drs. said it was still there, but since he was so big (over 10 lbs) that it was possible that he damaged my bladder while he was in utero and that if it didn't go away or got any worse then I would be referred to a specialist. Fast forward to last August--I'm still having the blood in my urine but it hadn't gotten any worse. We went up north for the last weekend before school started but ended up having to come home early because I was having major stomach issues and was taken to the ER. They performed a CT scan on me there and found I had inflammation in my bowels and sent me on my way with an rx for an antibiotic in hand. (There's more to that, but I'll get to it later).

Fast forward to this May-I finally begged to be referred to a urologist because not only was the blood still being found in my urine, but suddenly I was having repeat UTI's and lots of spasms/pain when I had no infection. The one I was referred to did a procedure where they fill your bladder with fluid(don't know what its called?)and look for any abnormalities. He found none, but concluded I "must have an overactive bladder and an underlying infection that isn't going away with the short courses of antibiotics". Again, I was sent home, with rx's in hand for Vesicare and an antibiotic I was instructed to take once a day, on M,W, and F for six months. I was to have a follow up in November.

All of this didn't sit well with me and given that I went through 3 weeks of the treatment he rx'd with no relief, I decided to get a second opinion. Let me just say, my new urologist is absolutely wonderful! I've never been made to feel more welcome and like my concerns were important than with his office! My first appt. with him was at the end of June and immediately upon getting my history he said that what the previous urologist did was not sufficient. He told me that blood in my urine with no sign of infection or trauma was a huge red flag for more serious issues than what I was treated for and immediately ordered a CT scan w/ contrast of my abdomen to get a closer look at what was going on.

I had the scan done July 11 and was back in his office Aug. 13th where I was told that they had found a "solid enhancing mass" in the upper quadrant of my right kidney. The scan measured it as 2.8 x 2.9 cm. I was a mess immediately. He said at that point that he was 80% sure it was cancer but given my age and gender it was still a possibility that it was benign. He suggested a biopsy, but I refused, my initial reaction being, NO! It's not part of me, it doesn't belong there, and I want it out! So..instead, I was sent for an MRI w/ contrast for a closer look which showed that it was solid, enhancing and also had some cystic properties.

At that point it dawned it me...This didn't just show up out of no where! So I mentioned that I had the scan last year and wasn't told anything about. He had me request the disc and report and bring it to his office for comparison to the new scans. Of course, me being me, I popped the disc in my computer and guess what?! The mass was there as well! However, the report from the radiologist stated, "Kidneys are functioning, and appear normal" Complete WTF moment for me there. I waited for the comparison results and they found it had grown 1-2 mm since last August and surgery was scheduled for the earliest opening he had which was for Oct. 17th.

I received the pathology results at my post-op appt. yesterday. The mass that I had removed was malignant. It was Stage 1, Grade 1-2 Renal Clear Cell Carcinoma. It was 2.0 cm, so it was smaller than originally thought, but because of the proximity to my renal artery, I lost 1/3 of my kidney instead of the intended 20%, but that's nothing considering the alternative. The doctors are confident that they removed everything so the plan of action is to have blood work done in two weeks and again the end of December to make sure my kidneys are functioning properly and follow up scans in January, then again in 6 months and every 11-14 months from there on out.

I still can't believe that I was diagnosed with cancer and one that normally targets men, people over 40 and smokers! I'm not any of those! Lesson learned--If something doesn't "feel right" or your doctor seems to be dismissive about your concerns or doesn't order tests for "unexplained" symptoms, ALWAYS trust your gut! People may call me a hypochondriac, but being proactive about my health and asking for second opinions saved my life!

I'm now a little over a week post-op and I feel pretty good. My surgery was done laparascopically so I thought I would be better recovered by now, but I feel much more drained than I expected. I've had 3 other major abdominal surgeries that I was "opened up" for and actually felt better at this point post op., but it was a different surgery so I guess I should expect a different recovery. My doctor said it yesterday, but I still feel strange being called a cancer survivor because I never had symptoms (well, just the one), never had treatment besides surgery, never got sick, I was diagnosed post surgery and now they say I'm cancer free. My Dr. says that I now have as small of a risk of it ever coming back as anyone else has of ever getting it, but know it will always be something that eats at the back of my mind, especially when it's time for my scans. For now, I think I better just be thankfully it was caught early and enjoy my life the best I can. :)

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

Amanda, please don't tell us you live in Michigan!
(You may forget about playing golf or riding a Harley Davidson).

Your last four words "the best I can" are unduly defeatist - your good sense in paying attention to what your body told you and catching it so early means that the advice you received is correct - the risk you now run is about the same as if you hadn't had cancer.

As a young lady you could be justified in thinking you don't belong here but you're among friends of all shapes, sizes and genders, including a few more ladies even younger than you. This malady does tend to appear more in males, smokers and the obese but the causes are as yet obscure and there's nothing you've done, that anyone yet knows of, that could have caused you to have it.

You probably won't need much help from us but we're here to share with you and if you choose to stick around here for a bit you'll find some fun people here.

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

Female, Dx'd at age 63, almost as old as TW in a few months, didn't smoke, seldom enjoyed a glass of spirits, was a PE teacher and active in something all my life.
Whoa, Nellie...was I surprised. Mine had metastasized to the liver and nodes; but I've been NED (no evidence of disease) for 3 + years, now.
So there is hope out there. Latch on and come along for the ride. We'll be here to cheer you on and cheer you up.
Don't miss Friday funnies. And good luck.
Donna

mrsleavitt
Posts: 5
Joined: Oct 2012

Donna, that is awesome that there's no sign of it! Miracles do happen! That's why I came here. I was looking information and for something to tell me that the "C" word really isn't a death sentence. I was terrified because of my kids--I never thought this would be something I'd be dealing with until they were at least grown and had kids themselves.

I'm glad I found this board. Reading through the posts give me reassurance that there is hope and that like my dr. and TW said, mine will probably never come back. I hope I can give encouragement to others here as well, even though my experience with this is limited and still quite a blur to me.

I will watch for those Friday funnies :)

Amanda

mrsleavitt
Posts: 5
Joined: Oct 2012

Hi Texas,

Yes, I live in Michigan...how did you know? I've been trying to convince my hubby that we really need to move out West but he won't hear any of it! lol We've actually had some decent weather the last couple days with temps in the 70s! Today was cold though..drastic drop into the 40s. I wasn't too happy with the blast of cold air this morning when I let my dogs out! No golf for me (that's my husbands hobby), but we both ride motorcycles. I missed out on a lot of great riding weather this year after finding out about the mass. I've got a lot of riding to do next year to make up for lost time!

I think I will stick around. My friends and family try to be supportive and understand what I went through, but its not really the same as having someone that's been through it to talk to. Right now, I'm so very thankful that mine was caught extremely early, but I'm finding that I'm still angry that it wasn't caught sooner and that my original doctors were so dismissive. Its hard to deal with some days, and other days I shrug my shoulders and carry on.

mrsleavitt
Posts: 5
Joined: Oct 2012

I forgot, I put it in my profile...and here I was wondering if you might be psychic! ;P

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

You may have done, Amanda, but your joining info isn't available to us in your "about me" profile (Michigan or biking) so you'll just have to accept the psychic explanation :)

And, a quick tip:- stay a "golf widow" and leave that risk factor to your hubby.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Amanda,

Tex has the uncanny ability to discern information where it seems there is none available, you'll get used to it after awhile. There does however seem to be an ever growing number of bikers, golfers and Michiganders in the club (I fit all three categories) so it reduces the guess work on his part. Anyhow, I am sorry that life brought you here, but glad you found us.

Welcome aboard,

Gary

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

What a story. In fact what a similar story to mine. I too am a 32 y/o mum and have been active and fit for most of my life. Did smoke in earlier years. This year I was diagnosed with clear cell RCC, stage T3a grade 2-3. Tumor was huge and had taken over most of my right kidney. The day before diagnosis I was at the gym smashing out 200 double-under skips and 100 burpees. Cancer sure doesn't discriminate. My only symptom was blood in urine and just before diagnosis, some pain in my side. Like you, I was horrified and instantly wanted that thing out of me. Your history is interesting and eagerly read your story wanting to find out what earlier scans had said. I am sorry your problems were not diagnosed correctly in the first instance. Or the second. But I am very pleased you persisted and took an assertive approach to your health. You are not a hypochondriac, you are in tune with your body.

As assertive and determined as I am, I do kick myself for not being more aware of my body in earlier years. I had my first ever episode of blood in urine in 2008. Freaked me out. GP said it was just a UTI and sent me away with antibiotics. After that I simply went and got another course of antibiotics each time I peed blood (which in hindsight was way too often), even though there was usually no fever or pain. This year when I urinated what looked like dark cola... I knew something bigger was going on. I'm four months post radical nephrectomy now and on a clinical trial for high risk recurrence patients. Even though stats don't place us in the 'typical patient' basket for RCC, I think the advancement of medical science (detection methods) has much to do with the increasing number of cases like ours. Though yours took two scans... I'm pleased you were diagnosed early. We are two luck ladies.

And I think it's absolutely OK to say "the best I can". Heck people without illness say that all the time. I didn't read it as defeatist, rather I read that you've picked yourself up and will live life to the fullest and best capacity :) Welcome fellow lurker, you will find so much support and experience here x

icemantoo's picture
icemantoo
Posts: 1453
Joined: Jan 2010

Amanda,

Welcome to the club that nobody wishes to join. The initiation sure was not fun. For those of us with small tumors the surgery alone should do it. Like you, I never smoked. I just passed the 10 year mark and and at 69 I am looking forward to another 10 ,15, or 20 years try**** to welcome and help the newcomers. Fay across the street is at 17 years and she is only 81. I know it is not easy at first, but your prognosis is so good try not to worry until in the remote chance there is something to worry about.

Rather than discuss this boring stuff the Tigers have an important game in just 18 hours. Lets hope the series goes back to San Francisco.

Wait a few more weeks till you get rough with the kids. Although 32 is too young to join our club welcome anyway and you should have it easier than us old guys.

Icemantoo

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

Mel, I feel sure your comparing notes with Amanda will be helpful for both of you and so it's good to witness it.

You're undoubtedly right that improving rates of detection (and greater awareness by all of us of the possible significance of symptoms) explain a good part of the increasing numbers of young, fit, low risk, female members here. This probably doesn't mean that folks like you and Amanda are getting appreciably more likely to have cancer (though environmental changes may be occasioning a small increase in that likelihood).

However, we need to fully acknowledge the silver lining - that the likes of you and Amanda are now spotted far sooner and can be saved from bad prognoses by appropriate action. You won't, therefore, be entering the lists only when you're in the age group of Donna, iceman and myself, at which point the outlook is, generally, much bleaker.

That was what I was getting at in my observation about the implication of Amanda's "the best I can". I wouldn't have passed my comment if she'd formulated her resolve in the way you've subtly modified it - namely "live life to the fullest". To me, her "the best I can" implied that she is now handicapped to some degree in living life to the fullest. Therefore, I was simply underlining the main thrust of my message to her which was that she should now consider herself cured (but remain watchful, of course!) and fully believe that she has as much capacity to lead a happy, healthy life as someone who hasn't had cancer. That was the message her doctor was giving her and I was simply reinforcing that message. I want her to take fully on board, with no reservation, the fact that she has been cured and not to let the recent past cast any shadow over her happiness.

[Sorry to go on at such length to make the point but I'm sure you can find it in your heart to forgive that failing :) - it takes one to know one!]

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

There is absolutely a silver lining TW and I thank my lucky stars every single day. Gee do I ever wish that I worked in the field of medical research so that I could contribute more. Without doubt these next few decades are going to bring some exciting stuff in terms of medical advancements!

Subtly modifying, or simply paraphrasing? Haha, no really I will remember to be careful with my future analyses. Takes one to know one indeed :) How about we don't argue about what Amanda 'meant' in her writings and just accept her words for what they are. Welcome Amanda, you will find much support and interest in your thoughts and writings here... as you may already have already noticed.

Mel x

mrsleavitt
Posts: 5
Joined: Oct 2012

I didn't really mean anything by it, just a figure of speech I suppose. I'm not one to let something like this get me down. It's the recovery from any type of surgery that gets me down more than anything. This is my 4 major abdominal surgery, my last one was back in December and I'm impatient as all get out. I can't stand sitting idle, but my body just isn't cooperating yet! lol Side note: the other surgeries were nothing bad, more like "routine"--two c-sections and a hysterectomy because I was D.O.N.E. with the baby thing :)

I do have a question for those of you that had partial nephrectomies: At my appointment on Thursday, the doctor said it was normal for your kidney to bleed for a couple weeks because of "debris" from surgery...but he also said because of my history of having a low Factor VIII (the blood factor that causes hemophilia-but mine is on the very low end of normal) and bleeding problems during previous surgeries, he's worried that I may have a "bleeder" may have to go back in to repair it. Has anyone else had this happen? Is it normal or common?

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