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Hello - first time

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Greetings - been a bit of a lurker but do want to post. As an otherwise healthy 53 year old guy, I had a Stage I tumor discoverd by accident (3.5 cm) in my left kidney when getting a sonogram for my gall bladder. My left kidney was removed at Georgetown University Hospital in DC and was told by more than one specialist including the surgeon as well as an oncologist and my family doctor that because it was found so early and sequestered, the nephrectomy alone is curative and there is a negligible chance of anything recurring and not to worry. It has been a year and a half and have had 6 mos and one year MRI's and all have been clear. I do in fact consider myself lucky and blessed and not worrying now and exercising and doing everything right. I also see a nephrologist every couple of months since my creatinine has been slightly elevated (1.5) due to an apparant slight inability for the remaining kidney to pick up the slack. Otherwise I am feeling great. A couple of questions I have is 1) has anyone else had the higher creatinine? 2) Anyone else out there have to avoid CT contrast since the contrast agent is stressful to the kidney (I have MRI contrast for that reason) And 2), I admit that after I read some account of others in this discussion group having spreading from Cat I, I get concerned again. Any others out there who are in a similar situation? Should I be doing anything more in terms of follow-up examinations and treatment?
Thanks
Andy

LisaJo
Posts: 13
Joined: Apr 2006

Welcome. I too have been a bit of a lurker, reading what others have been saying and not really knowing what to say or ask. I was a 47 healthy female when they found it from another female type procedure I was having done. My husband and i could hardly believe it because I had no symptoms and seemed totally well. Mine grew to 6cm in about 6 mons before i had my kidney removed. It has been 3 years and my Drs. say the same thing as yours, they got it early. I had a CT scn yearly for the first 2 years with a different type of contrast. I have a chest x ray yearly and will now have a CT scan bi yearly. I too feel so blessed that it was caught early but when I read other peoples stories it becomes fresh again and I start to worry. i try not to say anything to my children or my husband as he says that we hear mostly the bad things on these sites. But, it is a part of my life now and even though I don't dwell on it, every once in a while I think about it and start worrying. I think you have to go through it to understand it completely.I too have asked about follow up care and I guess I'm doing about all I can. it sounds like you are too. I just try to embrace each day (even the crummy ones) and live life to the fullest. Keep on truckin!
Lisa

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Thank you for your kind message. While the physican care I got was excellent in terms of medical expertise, very few seemed interested in discussing your worries or fielding what they viewed as worrysome questions. In fact, one of them seemed almost irritated. I was surprised though that I had to fight the urge to be "borderline hypochondriac" and the doctors need to be more sensitive to that. I know people who smoke and drink and do not take care of themselves who seem to be enjoying a pleasant quality of life and then others do everything right and get into these situations. Just externalizing - no whining. Haven't talked about it much until now - stereotypic guy I guess. I think you are right that those who have good outcomes are less likely to be posting questions and concerns. Indeed, until I had this I never heard of kidney cancer and now when I discuss it with others I know, most seem to have known someone who has had it and is fine for many years later. Interestingly, the oncologist who I saw for a follow-up made me feel guilty because I was fine and still seeing him for a consult to educate myself. He asked what I am doing here in a way that implied that he has real patients in trouble to worry about. Kind of a no win situation. Would he have felt better about seeing me if I was going to die? Also, they seem to forget, we are paying them and they have some degree of customer service they should observe - but I degress - that is a whole other post unto itself. Anyway, one thing I did learn is you have to take the responsibility to learn everything you can and become an amatuer physician of sorts and advocate strongly for yourself. Thanks again for chatting.
Andy

lda40
Posts: 5
Joined: Dec 2007

Hi Andy,
I havent been on here that long. I had a stage 2 tumor in my left kidney.
They removed my left kidney in 05. I have been going to Vanderbilt Hospital in Nashville Tn. for over a yr now. my creatine went to 6 and i had blood and protien in my urine. had i not had check ups i would have lost my other one. i stay away from contrast. My doctors check my blood once a month. every so often they do a 24hr urine, and they are always checking that i dont take any meds that will miss with the kidney. they gave me a do not take list that was a mile long. i have been taking cemo and prenisone to jump start the other kidney to working. its been 6mnths now and my creatinine was 1.8 the last time. hope this helps. stay in touch
lda

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Ida - thanks very much for your kind reply - yes that does help. Mine has been around 1.5 - 1.6 my nephrologist said it was just my baseline for the that one. I also got a list of drugs to not take. Wow - 6 is much higher and I am so glad they got it back in order for you. 1.8 is great and I had 1.8 for a while with no bad effects at all. I guess it is the luck of the draw - with two kidneys one can be performing mediocrely and never know it. Are you still able to get MRI with contrast which is allowed for me (not CT contrast)? If not, are your periodic imaging screenings w/o contrast and or Xray?
Thanks
Andy

lda40
Posts: 5
Joined: Dec 2007

Andrew

hello again, yes they do test me from head to toe every 6mnths i never get contrast on ct,s or mri's they wont give it to me. they do give me sudation with the mri's cause they scare me so. I know that sounds crazy after all they have done but i freak out in small places. :I guess the only bad thing about the medicines i take is i did go into early menipause my hair has come out alittle and i swell in my feet and legs some from the kidney. they are always looking at my feet. that was the first sign i saw that somthing was wrong when my feet swelled the first time. let me know how things are going. Lda

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Thanks - I made an appt with an RCC oncologist at the hospital where my surgeon practices next month - hope I will not get an attitude. Don't feel bad about the MRI anxiety. I am an otherwise healthy and strong 200 lb guy doing martial arts regularly and I wound up taking Valium since some of my MRI's take two hours to get everything. Ego is quickly lost at times like these. The up side is I now have done so many, I think I have become desensitized. A great hint I have is drape some cloth over your face just to cover your eyes the whole time it really helps - give it a try.
Andy

lda40
Posts: 5
Joined: Dec 2007

Andy,
Thanks for the tip. I will try that next time.
I'm glad to hear you made an appt. I have to go get blood work done tommorow. keep us informed on how you are doing.
lda

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

First of all, glad to hear that you're doing well. I too had one kidney removed so am very cautious about the health of my remaining one. Each time I have a CT they do blood work first (creatinine level) to ensure my remaining kidney is doing ok. Only upon receiving the results do they continue and use the IV contrast. I was told that IF my creatinine were to be abnormal, they would do non-contrast CT only and then send me on my way to my urologist. I have CT's of chest, abdomen and pelvis every 3 months, followup with my oncologist and urologist. I'm one of those rare ones who had Stage 1 (3-4cm tumor)who had recurrence (metastatsis) to the lung nearly 5 years later. BOO! But I am currently 2 years tumor free!

My urologist has told me to made certain I drink enough fluid every day to keep the remaining kidney healthy - he said minimally 2 quarts - water is best but coffee/tea/soda thrown in is ok in moderation. Low sodium diet is also a necessity and watching blood pressure.

Keep following with a good oncologist and urologist. GOOD ones will not blow you off nor take your concerns lightly. My docs even have decent (albiet odd) humor ... they say that as long as their patients are upright and complaining, they're happy.

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Thanks for your kind reply - and your very helpful information. I am so glad to hear you have recvvered and your story is one of the several why I made an appt with an RCC oncologist at the hospital my surgeon practices out of - hope I do not get an attitude from him/her. Your situation otherwise sounds similar except the imaging. CT is out competely and they are always MRI's with contrast. However my interval after the first six months is now yearly. Did you do every three months before or after your recurrance? On the upside my nephrologist is great, takes everything seriously and has re-assured me that my 1.5 creatine is just my random baseline for my right kidney which was masked before based on quaterly tests.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

After the initial diagnosis and post kidney removal, I was seen every 3 months for 3 years ... then went to every 6. After the recurrence, I returned to every 3 months and have been following that regime for the past 2 years. I THINK my oncologist is ready to spring me and move on to an every 6 month followup! That would be nice! God bless and good luck to you!

racefan29's picture
racefan29
Posts: 1
Joined: Feb 2008

Hello everyone this also my first time here. I have many things in common with the original person who posted this message. In April of 2007 I was getting a chest x-ray for possible bronchitis. Instead they found a mass on my right kidney and a mass in my left lung, I was a heavy smoker, since then I have had a needle biopsy on my lung which was neggitive. On Jan 25,08 I had a nephrectomy and my right kidney was removed along with the stage 1 tumor. Like the person who posted the original question my kidney function is has stayed around 2.4 due to having damaged my left kidney in a motorcycle accident in 1987. and I am allergic to the contrast dye. I am still trying to come to terms with all of this and I am still pretty freaked out. I served in the military both active duty and guard, worked as a civilian Police officer and a truck driver. I have never been afraid of much, however this scares the hell out of me. I guess I am just looking for some one to talk to who can relate.

lda40
Posts: 5
Joined: Dec 2007

Hi Racefan,
your not alone.... I had my left kidney removed in 05. first off i hope you quit smoking. personally it scared me and i have not picked up a cig. in almost 2 yrs. I had smoked since my early teens.
2.4 is not bad. mine went up to 6.0 before they put me on the meds and now it stays around 1.8 and i can live with that.
i was mad at the docs at first. they told me one day that i had cancer, my kidney had to come out and that i could live fine with just one and a little over a yr later the other one starts to stop working and they have no reason as to why its happening. i will probably have to stay on the cemo drugs for another yr. to make sure my remaining kidney wants to stay working but im hopeful. my kids keep me going. they hold my head when i'm sick and my youngest son let his hair grow out so if i needed it he would give it to me.
i give myself milestones to keep me going. like prom for my son, or my daughter graduating college next yr., my middle one will also graduate from high school next yr.
it is frighting to have to go thru all this but you cant do it alone u have to have a support network. someone who will let you cry, or be mad, or scared, or someone just to talk to.
I saw you were in the military. my children were born at ft. wainwright, Alaska
if i can be of help let me know.
Lda

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