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Newly diagnosed stage 1 renal cell carcinoma

Paulalaff's picture
Paulalaff
Posts: 4
Joined: Jul 2004

Hi,
I'm 30 years old and have just been diagnosed with stage pT1a renal cell carcinoma completely excised on July 9. I am very scared and am looking for someone to talk to that has had this same experience. Most people I have talked to have had advanced stage. If anyone would like to talk, please e.mail me at sassyrooab@yahoo.com.

Galyn's picture
Galyn
Posts: 1
Joined: Aug 2004

Hi, am almost 57 years old and at the age of 47 (just barely) I had kidney cancer and a full nephrectomy. Four years later I had it in my other kidney and had a partial nephrectomy. I have had a wonderful 11 years and am now diagnosed with advanced RCC. My best advice to you is to take really good care of yourself and enjoy your life. You may never get it again. I wish I had complelely quit smoking, never drank again, quit going back and forth on a high protein diet and was more spiritual. I believe I contributed heavily to the condition I am in now. It would be good if you could adapt an all natural diet and don't put poisons in your body. The less prescription drugs the better, as well. I have been on antidepressants for seven years and have just recently stopped them. I am doing great and feel better than I have in years. Don't despair. You could have a long and healthy life if you take care of the body God has given you.Take care and let me know how you are doing. You are in my prayers.

Galyn

Chicago's picture
Chicago
Posts: 74
Joined: Apr 2004

Hey Galyn,

Sorry to hear about the advanced RCC. How often were they monitoring you? Did the disease just advance that quickly this time?

michelek
Posts: 4
Joined: Aug 2004

I also was diagnosed with stage one, last February, and had a partial nephrectomy in March 2004. You can email me at vany2@aol.com (I usually don't pick up email until weekends though). I know what you mean - I am trying not to constantly worry over every ache and pain I get afterwards. My doctor said he got it all and is confident, so I have to go by that. I was 45 at diagnosis time (46 now).

Paulalaff's picture
Paulalaff
Posts: 4
Joined: Jul 2004

Thank you to everyone who answered my message. I am doing great now. According to my doctor, I am cancer free and will have my first CT scan in January. Other than a little fatigue and a scar, I wouldn't even know I had the surgery. Again, thank you to all of you for sharing your stories with me and for all of your prayers. You have really helped me get through this. You will all be in my thoughts and prayers for life!!!!

MarthaF
Posts: 2
Joined: Sep 2004

Sounds like you are about a month ahead of me in your treatment (I'm almost 64, my radical nephrectomy was August 4, tumor 6-7cm, no discernable symptoms -disease was discovered by "fortunate accident"- dr. believes he got it all). I dealt with it all well, but now am finding depression and residual fears - also feeling that I'm not "entitled" to these fears since I am apparently cured, without much suffering. You wake up scared about the other kidney, for example. Can't verbalize much more at the moment but am looking forward to talking with others in similar situation, seems like our concerns are a bit unlike others.

htuck
Posts: 1
Joined: Dec 2004

Martha, I had nephrectomy in Jan. of this year, 7cm turmor and like you, discovered accidently. I also had a problem with depression and fears. I have only recently began to get over those feelings of guilt and fears about future cancer. Would love to talk with you more about this. I couldn't really talk to anyone about my feelings because I thought I should only be feeling grateful for being cured. Please let me know how you are doing.

DebsGirl
Posts: 8
Joined: Dec 2010

My nam is marianna... my mom called me dec 16 2010 and said that when getting a ct for arthritis in her hip they discovered something on her kidney... on dec 17th she had another scan to see what it was... today she called to say that she has stage 1 rcc on her kidney... thing is she has only one kidney (horseshoe kidney) we knew this already and after thursday i began researching and found that ppl with a horseshoe kidney are 8x more likely than the general population to develope rcc... she has an 8cm cyst on the right portion of her kidney and the cancer is in that... on jan 10th she will travel to mayo clinic for a second opinion and a minimal invasive laproscopic surgery to remove the right portion of her horseshoe kidney leaving her with diminished function... my sister in law is a surgical assistant and lives 1hr from the mayo clinic so will see my mother thru recovery... she talks like they will get it all and it will be over... but i think she is trying to cover for the sake of her 6 kids 6grandbabies... #7 is on the way... i want to know the full story... my research tells me this is more serious than she is letting on... also how do i help her through the coming months...

taterwinkle
Posts: 2
Joined: Dec 2010

Consider this, cancer sucks, but stage one is the best it gets when having cancer. My father faught his battle of RCC for almost a year, and lost. Your mom is lucky enough to have had it found in stage one. My dad's cancer was found when he was already in stage four and it had metasisized to his liver, left lung, lymph nodes,vocal cords, spine and hip. From my understanding of RCC, it is hard to diagnosed becuase it can be asymptomatic or symptoms can appear to be another problem. Usually RCC is discovered when Drs. are looking for another problem. RCC is very serious and I do not think it gets the recongition it needs or deserves.

The only thing I can tell you, is spend as much time with her as you can. Take pictures. Video would be a cherished possession. I wish I had recorded my dad so I could just hear his voice.. Try to be there for her. I have seen it happen all too often that the cancer patients are comforting their family instead of the family comforting them. My dad did that. I also felt lucky enough to have him cry on my shoulder a few times. He couldn't understand why everyone was soo upset that HE had cancer, all I could tell him is he just did not understand what he meant to me and that I would be losing the greatest person I have ever known. My dad was my best friend, the original night in shining armor.

Do research on treatments, facilities and anything else. Take her to her appointments if you live close enough. Just be there for her when she needs you. But, also give her time to herself so she can deal with it on her own terms.

I pray for the best of luck for your mom, you and your entire family. Please keep me posted their your and her journey!

DebsGirl
Posts: 8
Joined: Dec 2010

Well my mom lives a good 4 hours from me... which seems a lot farther since the diagnosis... she came here for christmas... and the entire trip no one so much as breathed the word cancer or spoke of it in any way... every time i try to talk to one of my 5 brothers and sisters about it they change the subject saying 'im not gonna stress over it it will all be over after her surgery at the mayo after jan 10th...' no one but my stepdad and brother will be there for the surgery since it is so far away (mayo in minesota/ were in kansas) everyone is acting like shes getting her tonsils out and its making me insane... no one will talk about it... mom talks to me all peppy like and brushes it off... i know i deal with things diferently than my siblings... they internalize thier fears and i wear my heart on my sleave... when something happens that scares me or takes my controle away... i respond by making myself an expert on the matter researching... getting my hands on everything i can about the matter as a means of regaining control over the situation... i dont want that cancer to know my mom better than i know 'it'... right now i feel like the cancer has my mom instead of my mom having the cancer... i feel like ignoring it gives it control... causing fear and uncertainty... after the surgery i will feel like now that we've made a move we have the upper hand... i want it out of her so they can look at it and get to know it... how agressive... how far the cells have mutated... what type... clear cell? ect... what are the chances of metasticizing... i want to know how bad it is... what were dealing with... and i feel like my mom wont tell us... she has everyone but me believing its a routine surgery happens every day and once its out its over... how do i get her to be honest with me while still respecting my siblings wishes to remain blind to it and unafraid... i want to respect the fact that they deal with things dif than me... they want to cross their fingers say a prayer and wait to see... i have a friend whos mom had cancer and they never knew how bad it was until she was dead then they found out that their mom knew she was terminal for a year and didnt tell them... i dont want to be blindsided... i live by this... 'PREPARE for the WORST... PRAY for the BEST... and remember that no matter what its in gods hands' im in limbo and i dontknow what to do... i almost wonder if my mom is also blissfully unaware and if her doctors are sugar coating things... or am i the one freaking out and maybe it really will be over after the surgery... either way she will be left with half of a kidney... which will be a permanent lifestyle change beings how she will have one kidney with diminished function instead of 2 healthy ones like the rest of us...

icemantoo's picture
icemantoo
Posts: 1455
Joined: Jan 2010

DebsGirl,

Stage 1 Rcc has a better than 90% survival rate. I realize your mother has complications by only having 1 kidney, but she is going to the best doctors available at the Mayo Clinic and there have been many breakthroughs in the past few years where they do not have to take out the whole kidney. Talk to her doctors instead of just assuming that Kidney Cancer implies something very bad. I am an 8 and 1/2 year survivor of Stage 1 RCC and am doing fine and in my day they took out the whole Kidney. Our prayers and best wishes are with your mother and you and wishing her well.

Icemantoo

Jerrinm
Posts: 1
Joined: Dec 2010

Hi Martha,
I am recently out surgery Dec 20, 2010. I related to your statement about not feeling entitled. Everything is kind of a blur. My 2cm RCC was found by accident unrelated to the problem I was having. I was told about the RCC in the ER, went to a specialist and surgery all within 3 weeks. I think I just have not had the time to digest it all.
I think maybe alot in denial of it all. I just want to be back to *normal*. I am just wondering is this normal? Will it all hit me all at once? The physical recovery cannot be denied of course, just don't want the emotional to bring me to my knees without notice. LOL, reading this makes me think I am a control freak...I am. Anyone else feeling like this?

lanie11
Posts: 2
Joined: Dec 2010

I am also recently out of surgery - Dec 15th, 2010. They "accidentally" found my Stage 2 RCC (8.2 cm tumor). I had a partial kidney removal, and at 4 weeks post op am doing great. Attitude is everything, and I guess after helping my Dad fight Stage 4 stomach cancer since June, I recognize that everything is relative.

Know that you have really good survival rates and if you have clear margins it the chance of re-occurrence is only 7%.

My prayers are with you for peace of mind!

antjeanne's picture
antjeanne
Posts: 13
Joined: Aug 2010

i had stage one also. 4.9 cm, left kidney removed July 14th 2010.i am in the same place as you. keep positve and be thankful for your miricle!

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