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New to Cancer

EarthMama
Posts: 12
Joined: Dec 2010

Ive been told over and over again that I am too young to have kidney cancer as it affects mostly older males. I guess cancer must have made a mistake when it picked me? After a long run of "mystery" illness I have finally been diagnosed as having Renal Cell Carcinoma.( november 22nd was my lucky day) The culprit is a tumor on my left kidney. They found 4 " suspicious" spots on my liver and im waiting to have an mri next week to find out if my cancer has metastasized. They are doing a " hand" assisted laproscopic surgery on Jan 5th to remove my unwanted guest.(they are hoping to be able to do the surgery this way but may switch to open surgery). Anyone else have this? How does the scar look/ heal? He said a 6 inch incision above my belly button with a couple other smaller ones. Feeling floored and overwhelmed. Its good to find this group.

Martha_R
Posts: 6
Joined: Dec 2010

I had the laparoscopic surgery to remove my right kidney. The scar is not bad at all, about 6 inches, but in my case they cut through my belly button, so it is hardly visible. Than I have three really small incisions, that are almost invisible. What were your symptoms? I really didn't have any, it was found during a routine ultrasound. However I was very fortunate because my mass wasn't malignant, it was a benign tumor. To know for sure if it is a cancer, you have to wait for biopsy results. The chances of not being cancer are about 10%, but you might be lucky!

JSR
Posts: 12
Joined: Dec 2010

Hey buddy I know your worried, and there is nothing anyone can say right now to take that away, I am right there with you as I am going through the initial phase right now too, in fact we have surgery on the same day 1/05/11..I will be having a partial right now just like you, to be honest I could care less about scarring when it comes to myself, I just want to live my life, I am unable to enjoy anything right now, no Call of duty on Xbox, movies, or even dinner, I sit and wonder if this will be my last christmas, but you know where that thinking is getting me? NOWHERE my friend, its only making me worse...I can barely get out of bed, but I also cannot sleep, and all of this is making me feel more and more guilty, even to write these thoughts on here kind of makes me feel bad, like someone else here said they would like to have my diagnosis compared to theirs, and I am truly sorry for that...

Can I ask how they know its RCC at this poit for you? My docs have said 50-50% chance for me, I dont know if they are trying to make me feel better or if thats the way it is...not knowing is pretty bad too, it puts everything on hold..I make my wife go with me to my appoint ments because my head is spinning in there, and I can forget what they say within the hour...

Like you told me, I am not one to say dont worry right now, because I am floored too, but my thoughts are with you if that means anything..

Take care..

EarthMama
Posts: 12
Joined: Dec 2010

It is truly a hellish experience. I kinda feel like someone handed me a death sentence.Its kinda like on fight club when they say you never really appreciate anything until you have almost lost it all.....

I have been very sick, shaking, fatigue, severe pain in my side, blood in urine, headaches and just feeling generally unwell. Unlike others, my blood counts have been really messed up and they couldnt figure out why. They hospitalized me at the beginning of the year for 13 days due to a mystery brain infection that they were calling bacterial meningitis but it was disputed among the neurologists. They could feel a mass in my left side but thought it was an enlarged spleen due to complications from my illness. Finally a couple weeks ago they did a ct scan because they were worried about my spleen and they found the tumor. I went to one urologist and she said I had renal cell carcimona. She wanted to cut me open immediatly ( dec 15) but I have 3 young children and I wasnt ready for the surgery. I also questioned her diagnosis and how she could " know" that it was cancer so quickly. They didnt tell me that they had already sent my films to an oncologist until after I got a new doctor. I didnt like that doctor so I went for the 3rd opinion and he did yet another Ct scan and said that he was looking for any type of other content in the tumor ( mostly fat to rule out an angiomyopiloma) but he didnt find any at all. ( now im kinda feeling like if it wasnt cancer, they probably gave me cancer now due to all the radiation for the multiple ct scans!)They also found 4 spots on my liver that they cannot confirm if it has metastisized or not, I have to have an MRI on the 14th to look deeper into the liver lesions. He said that if it was a different type of tumor it would show some type of black on the ct scan but I guess it is all white.

I seriously had myself convinced that they were wrong. I am still holding out hope even if it is a 1% chance that it might be something else and they are wrong.

JSR you can not compare yourself to anyone else when it comes to feeling guilt for how you feel. I have come to this realization. I have had feeling of extreme guilt for my emotional reaction to the situation but everyone handles everything differently and you can not be expected to react any differently than you are. I have been a mental wreck until im thinking maybe now is the time to live each day fully and enjoy the small details and simplicities in life. Maybe its an eye opener for us to enjoy each day and each moment.I too was flipping out about it, like " merry ****ing christmas, you have cancer." thanks alot. Just what I always wanted! I went through the depression stage already and Im trying to pull myself out of it now... i still have the impending sense of doom tho and feel like a black cloud is following me around everywhere I go....

Did they tell you where the tumor is on your kidney? are they going to be able to save the kidney?

martha did they tell you beforehand that they didnt know if it was RCC or maybe something else? Im wondering why they are so sure about mine? I wonder if it is because they think that mine has spread already?

Martha_R
Posts: 6
Joined: Dec 2010

They said that the chance of cancer was very high, 90%, so this is why they are telling you that it's RCC. But you are not going to be sure 100% what you have until the biopsy. You need to remove this thing as soon as possible, don't wait 6 months, you need to arrange the care for your children and have the surgery immediately. The main thing is to get it out before it spreads. In my case the doctor thought that he won't be able to remove everything if he goes with partial nephrectomy, this why they did the radical.

I read a lot of stories here about post-surgery, some people had really tough time. A lot of depends in what physical condition you are - if you are exercising, moving a lot, it will be much easier to come back to normal life. When I came back home, I didn't stay in bed at all, I was walking (slowly!) and trying to be as normal as possible. Sure, you can't drive or pick up heavy things, but you should move around as much as you can.

amurillo63
Posts: 29
Joined: Sep 2010

I was diagnosed on May 5th, this year. The doctor told me that due to the size that it was "most likely" cancer 17cm, my kidney was 3 times the normal size. I was anemic so I had to wait 5 months before I could have surgery. The waiting is the hardest. I finally had a radical Nephrectomy on Oct. 7th. They had to remove a portion of rib. I am having a pretty good recovery, which they attributed to my age and overall health. And of course because the procedure that you are having is far less invasive.

JSR- You can drive yourself crazy thinking of the worst possible outcomes! I would of course think of these things too but would not let my self dwell on them. I have a strong faith so when those thoughts came to mind I would pray and ask God to Handle it. Negative thoughts are very powerful -Someone said that thinking negatively is like praying for that bad thing to happen. That has stuck with me since then. All of us deal with it differently but I believe that when you come out of this most of us do find a greater appreciation for life as EarthMama has already begun to consider.

EarthMama, with 3 small children I hope that you have a strong support system with family and or friends... You will need it. The other thing that helped me is that I wanted to feel that I had some control in this so I did a lot of reading. I read The Cure by Timothy Brantley and begun eating an all natural diet as he recommends and by doing this I also went to a naturopathy doctor and was given a variety of natual vitamins and minerals that are Cancer Fighters. This may not be why my cancer did not spread in the 5 months that I had to wait till I had surgery but it made me feel like I was doing something proactive for myself.

My heart goes out to both of you and I will pray for both of you.

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

Hi Earthmama yes it is truly a hellish experience being told you have possible renal cell carcinoma, it is not a death sentence, it is a life sentence, of course with 3 kids you have to choose a life sentence, worrying feeling scared and depressed it's all part of being a Cancer warrior, you don't have to feel like a victim, do your research, make a list of questions for your doctor, ask your doctor if they had possible renal cell carcinoma what surgery would they choose, please feel free to contact me with any questions or information I can help you with.

RBindy
Posts: 3
Joined: Dec 2010

Hi So glad to find the CSN discussion group. Reading about others helps to know there are others with similar challenges.
To be brief: Sept 20, 2010, after a CT Scan on 8/30 and ultrasound on 9/17, I learned I had a tumor on the upper lobe of my left kidney. That Friday 9/24 I met with a Urological surgeon. Partial nephrectomy by robotic laparoscopic surgery was decided upon.
Oct 12 I had the surgery ( I'm 59 in fair shape)
Surgeon told hubby & son he thought the tumor was benign and tumor size a bit larger than what was seen on scans. 4 cm still small
Oct 19 Surgeon called. Tumor Malignant. Stage 1a grade 4 which was concerning so would need frequent follow up
Oct 26 met with Surgeon for post-op visit. After several cancer questions asked for referral to an Oncologist. Agreed & forwarded all my reports & slides
Nov 15 met with Oncologist at Indiana University Simon Cancer Center. Advised that the I U pathologist found the cancer had invaded fat tissue making my stage 3 and very concerned about grade 4: clear cell with 95% sarcomatoid features--aggressive
Arranged and had brain MRI and chest ctscan
Dec 3 met with Oncologist. Yeah! MRI and scan were clear BUT further review by IU pathologist discovered that the tumor tissue removed did not have clear margins. Referred back to surgeon for consult for radical nephrectomy. An extremely unhappy day for me!
Met with original surgeon and an IU Urology surgeon the next week. Decided on the IU surgeon
Jan 3rd 2011. Scheduled for an open radical nephrectomy to remove kidney adrenal gland and lymph nodes. Had to wait 12 weeks from original surgery.
I am worried about any leftover cancer cells still roaming inside me and cancer coming back. Also have anxiety about another surgery, now open with longer hospital stay, more pain and longer recovery time as compared to the Oct 12th surgery
My case is minor in compared to so many I hate to whine. Still adjusting to the cancer diagnoses and all the disruptions to family and life.
Any advise on nutrition andiving with one kidney and one adrenal gland??
Thanks for listening. R

icemantoo's picture
icemantoo
Posts: 1621
Joined: Jan 2010

Rbindy,

Like you I was 59 when I had my surgery on 8.1.02. My tumor was small (2.7cm) and I had the Laproscopic removal of my left kidney. They were not doing partials then. What a bummer that you have to have 2 surgeries. While partials are done to save more kidney function the downside is that they do not get everything out. I guess everyone offered a partial should discus this concern with their doctor. As for living with 1 kidney assuming they finally get everything out you should be fine for the rest of your life. I am still kicking and driving my wife crazy after 8 and 1/2 years with 1 kidney.

Icemantoo

RBindy
Posts: 3
Joined: Dec 2010

Icemantoo,
Thanks for the welcome. So glad you are long time survivor and such an inspiration on these discussion boards. Did you change anything nutritionally? I am also challenged with Gastroparesis (slow stomach), severe GERD (Have Barretts Esophagus, a pre-cancer condition) and genetic High Triglycerides leaving me on a Low Fat, Low Carb, Low Sugar and LOW fiber diet (no fresh fruits, fresh vegetables, caffeine, nuts, pop corn, etc etc).
Are you still be scanned to be sure all is still well?

Hope everyone has a wonderful holiday and happy new year!

Rad1
Posts: 3
Joined: Dec 2010

You might want to check out the post I just added to JSR's thread ("New here...and qite scared."). I think this information may apply to you as well.

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