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renal cancer

franksalo
Posts: 1
Joined: Mar 2001

On Dec. 19 I had a cancerous kidney removed and was given a clean bill. However, a followup CTScan revealed that the renal cancer had infected my lungs. The oncologist ordered a brain MRI which came out normal. I am now waiting for a decision from the doctor as to how we will proceed.
Any comments from former or present renal cancer patients would be greatly appreciated.
Frank

hope381199
Posts: 2
Joined: Mar 2001

Hi Franksalo, I was diagnosed with stage four renal cell in Nov. of 99. I also had the kidney and tumor removed. As of now I am doing good. Sounds like your doctors are on top of things for you. Stay positive.

willielara
Posts: 1
Joined: Apr 2001

Frank, I too was diagnosed with Kidney cancer in December and had a kidney removed. In March I was advised it had moved to my lungs. The tumors are papillary and I am also waiting for a decision on how to proceed. My Doctor is considering IL-2 however I received information that this treatment has not been effective on papillary tumors. What type of tumors are in your lungs? What types of treatment are being considered? Lets keep in touch. I had my kidney removed on December 21. I,m 44 years old and live in Billings, MT. Willie

gbro
Posts: 3
Joined: Apr 2001

Hi Frank. In Jan.99,I also had a kidney+a tumor removed,at Beth Israel Deaconess Hosp. in Boston.Also,I was told they got it all.Followup CT scans showed it had spread to my lungs.I was involved in clinical trials and research studies,with interlukin-2 and Ilex.Neither had results,but since Dec.2000,I have been taking thalidomine.Last month CT scans showed the tumors are smaller. Gary from CT. Keep in touch.

mcglocklind
Posts: 1
Joined: Feb 2002

Frank,
Until last week 2/14/02 I thought I was a 3 times kidney cancer survivor. My right kidney was removed for rcc in 1994 then in 1999 just 2 weeks short of my 5 year mark i was diagnosed with a tumor in my left kidney, that was removed, no chemo or radiation, then in june of 2001 on my routine ct scan another mass was noted, after us & then biopsy confirmed it again
i was faced with yet another surgery to remove again a portion of my kidney, I am not on dialysis, what is left of my kidney is functioning,after having severe pain & nausea for about 2 months they finally decided to do another ct even though the last one was clear, and they found that the cancer had metastasized in my pancreas. I am going to the univ of az med center to see an oncology specialist. I am trying to keep a positive attitude but i just dont know how long I can
dee

Canadian
Posts: 3
Joined: Jun 2012

Hi Dee,
It seems we have very similar stories. I just had a tumor removed from my pancreas.
We are on the same path.
How are you doing now?
Kay

Canadian
Posts: 3
Joined: Jun 2012

Hi All,
Has anyone else had this experience?
Kay

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

Kay,

lbinmsp is a long time survivor with a recent recurrence to her pancreas, she is the only other person I can think of.

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

SO - RCC has found your pancreas. Well HELL! Actually that's exactly what I said to my oncologist when he gave me that same news. I have two tumors - one at the head of the pancreas and one at the tail - both fairly large in size and due to location and size, I am not a surgical candidate. Tried stereotactic radiosurgery (intense, high dose radiation) - which has shown some success on primary pancreatic cancer (not RCC to the pancreas) - but unfortunately it had no affect. Then did a trial of Sutent but the side effects caused me to stop. My oncologist and I are now using the 'watch and wait' type of followup. I see him every 6 weeks for blood work and then scans every 3rd visit.

I'm doing great - it's been 9 months since the pancreatic involvement was diagnosed. I just spend my time living LIFE to the max - traveling and playing and laughing as much as humanly possible.

I believe there is someone else on this board who has pancreatic involvement and has done really well. Wish I could remember the name.

Prayers being whispered for both of you - (truthfully - for everyone who has this disease) and please keep everyone informed of your progress.

LizB

Time2luv
Posts: 27
Joined: Dec 2009

2005 diagnosed, Right kidney removed January 2006. Left kidney cancer 2010, cryablation, 2012 2 more cancers in left kidney, lost 30% of it then. Now have spot on pancreas. Waiting on biopsy in a couple weeks. Going to Cleveland Clinic. So stressful.

 

weitz5
Posts: 2
Joined: Apr 2002

Dear Frank, On November 26, 2001 I had a mass the size of my fist and my right kidney which was 80% cancer removed and also given a clean bill of health. No radiation or cemo needed. Somehow I don't believe I can be so lucky as to not have it return. I wish you luck in your next surgery and would like to keep in touch with you. I am a 60 year old Grandma of 5, retired living in Colorado with my husband of 39 years. It is so hard to talk to anyone about this cancer as everyone wants to believe you are cured and ok. Good luck to you, I will keep you in my thoughts.
judy

pua1
Posts: 1
Joined: Sep 2002

Dear Judy: I had a radical nephrectomy for rcc in January 2001. I am a 48 year old woman. The dr. came out of the operating room and told my husband and mother that he got it all and that I was fine. I too have a hard time believing that everything is okay. It just seems to easy. My husband will not talk to me about it. As far as he is concerned it is over and done with, my mother feels the same. My cancer first appeared on a ct scan in 1998, the radiologists missed it. It scares me to think that the cancer was in my body so long before being discovered. I can not find much info about it. The surgery also left me with a lot of nerve pain, it is so bad that my skin cannot be touched sometimes and it just hurts inside. Has this happened to anyone else? How are you and others dealing with yourselves on a day to day basis? Please somebody write back to me.

sprice
Posts: 2
Joined: Jan 2003

I have the same situatio that everyone thinks I am well because the surgeon said the cancer had not spread, but I am very scared and need reassurance. Anti anxiety pills help a lot, but I don't want to take those on a regualr basis. I am afraid to go to a support group because I don't want to hear about other people who thought they were OK and aren't.

patrickdoc
Posts: 1
Joined: Feb 2003

I just had a radical nephrectomy in early Feb. for rcc. After discontinuing my pain medication, I've noticed a stong tingle in a nerve on my left arm. Urologist says it couldn't be related to the surgery but I'm not sure. just started a medication for nerves to see if I can be treated. I haven't slept in two days. My family Dr. prescribed Neurontin for the pain. Have you had any luck with medication?

puppycakes
Posts: 6
Joined: Mar 2002

Pua, I only just saw your message, so this reply is overdue and I hope you see it....It so happens that I am the same age as you, and that I had my radical nephrectomy in July of 2001. We have more than that in common: I too, despite being told that I have no signs of cancer in my body, experience a lot of pain, nerve and otherwise. Some days the pain deep inside where my kidney used to be is staggering. I am told this could be "organ memory" or "phantom" or "echo" pain, that it could be nerve damage or that it could be due to scar tissue. Well, I'm sorry to sound "ungrateful" (which is how some people make me feel when they say, "At least you don't have cancer anymore"), but it HURTS. I continue to have regular testing done, just in case, and so should you. Good luck, and if you see this, please let me know how you are doing.

KerrBearSmile
Posts: 2
Joined: Mar 2003

I understand exactly what you mean.
I'm a 29 year old survivor of rcc. My right kidney had a golf ball size mass and was removed 09/11/02. After 3 months of constant pain, my dr FINALLY referred me to a pain center. I strongly suggest that everyone ask for one if they haven't already gone.
My newest dr (in a long line of drs) perscribed a lidoden patch (simular to novacain received in a dentist chair- it numbs the area.), Baclofen (a muscle relaxer), Vioxx (once a day pain killer - gentle on the kidneys) and loratab (5mg for the rough times) as well as physical therapy. At Physical Therapy, I received a TENS unit (uses electrical waves to "block" the pain).
The TENS unit didn't work for me (only dulled pain for 4 hours) but the patch... I live and breathe by it!!!
I returned to work on Feb 11th. It's rough and it still hurts... but it's usually tolerable. True, for the most part, all I'm doing is work then back to the couch... but it's at least better than being just on the couch or in bed.
Resteraunts and shopping is still a bit of a challenge. But as long as I get a booth in the resteraunt and a motor cart in the store, I'm usually ok.
I am greatful to my dr for saving my life. But he was lacking in the information department. He never mentioned anything about Organ Memory, Phantom or Echo pain. The deep pain is the worst. Sometimes I feel like I can't breathe. Others, I think that if I just hold my breath, the pain might go away.
My physical therapist, I believe, enjoys causing pain. The deep tissue massages are the worst. But 2-3 days later, I'm walking faster, sitting longer and the pain is less. He says that the massages desensitizes the scar tissue.
I've had my 1st follow up CT and Abdominal X-ray. All was clear. I'm hopeful. I really don't know if I can go through this again.
((( all of you )))
Kerry

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

and welcome to RCC World (wish it was some other 'World' that had FUN rides and great food - this one sure isn't that!).

The lung seems to be the favorite place for RCC to metastasize to. I experienced the same thing. I was sent to a cardiothoracic surgeon who reviewed everything. He would have preferred to do a simple wedge resection but the tumors were scattered thoughout the lower lobe so that wouldn't work. Had a lower lobectomy (removal of the lower third of the lung). The surgery wasn't awful (comparing it to the nephrectomy - or other surgeries I've had) - and my breathing wasn't adversely affected. I still had plenty of lung. I did experience nerve pain for a few months after the surgery - no way to get around it, unfortunately. But I was given a prescription for Lidoderm patches and they did the trick until the nerves healed.

Good luck to you and please keep us updated on your progress.

LizB

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

I had to get my lower left lob removed this April due to the location of the new met. That was my 3rd met to lungs, one tumor met each time. I know exactly the feelings of the nerve pain you experienced, numb and very sensitive at the same time. For me it was manageable. Without LLL doesn't affect my daily activities at all, except, running or climbing up long stairs.

It just past my stage IV RCC 4 year mark, surgical removal has been the only treatment for me, even though I don't like the idea that my body parts got cut off. Who does? I guess I'm still lucky or blessed that I don't need to take any drug for treatments, want to keep it as in the last resort.

I am a long distance runner, I meditate during my runs, so of like doing "moving meditation". I listen to my body talks, feel every different kinds of sensation the body returns. I submerge myself into the body movements and breathe rhythms both consciously and detached with just one goal in mind, run comfortably. I work hard on repelling any negative ideas emerge the entire course which tries to take that comfort away or stop running. And, I tell my head to keep on rewarding the body with Dopamine and Serotonin. Here is my point, I also "talk" to my invisible tumors, RCC cells and the mother of the RCC cells(RCC stem cells) to chip in their part the energy and enjoy the fun run with the rest of the body, they are going to get Dopamine and Serotonin as well. This is my way of "convincing" RCC to join the better part of the body to work hard and get rewarded. You can find your own way to talk to your tumors besides killing them.

I have been "talking" to my remaining kidney to wake up and to compensate for the lost left kidney. The results, my Creatinine level lowers from 1.5 peak 4 years ago to 1.0 this year, not bad for a 53 year old guy.

Jon

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

Jon,

That's a whole different perspective for dealing with this. You are taking "having a positive attitude" to the max and I applaud your efforts.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Gary,

The tumors in my lungs do enjoy the atmosphere of euphoric excitement during LSD(Long Slow Distance) runs, don’t get me wrong on that one. I can feel them get up dislodge themselves from lung tissues and dance happily with NK cells and T cells in my blood streams filled with Dopamine and Serotonin.

Jon

foxhd's picture
foxhd
Posts: 1870
Joined: Oct 2011

I have also been running for 35 years. "And boy, are my legs tired." My LSD has devolved into Short slow distance. Between drinking my V-8 in the morning and running, I can't imagine doing anything else better for myself. I don't get too many endorphin rushes anymore but always think about the benefit. I unfortunately know that if it didn't work for Greta Waitz, it probably won't work for me. But I do think that it is my committment to taking care of myself and it gives me some control. I know where you are coming from.

Denny1971
Posts: 1
Joined: Jun 2012

I had a radical nephrectomy of my left kidney for stage 3 RCC in April 2009. I recently have been told I have two small nodules in my left lung which my oncologist is calling granulomas due to the initial cancer. This could be the same issue with your oncologists find. Just have them stay on top of it and monitor for any growth. Praying and God Bless.

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