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Old 11-25-2009, 04:13 PM   #1
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Unhappy Chromophobe Renal Cell Carcinoma

I am a 62 year old female that was diagnosed with probably kidney cancer three months ago. I had a total right kidney nephrectomy on mid October and the pathology report confirmed I had a rare form of renal cell carcinoma. Only about 3-4% of all renal cell carcinomas are classified as chromophobe. I have been extremely fatigued since the operation and have high creatinine and bun readings. The creatinine rose to 3.3 mg/dl immediately after the operation (it was 1.4 before the surgery), and my bun readings went up to 44 mg/dl (it was 21 prior to surgery). My current creatinine reading is 2.5 and my bun is 39. I also have elevated calcium and parathyroid readings. My hemoglobin is 10.5 gm/dl. My nephrologist had hoped the other kidney would have immediately responded and the levels should have been close to normal. Has anyone else had this type of kidney cancer? I will be having another CT in a few weeks to determine the condition of the remaining kidney. The MRI that was done prior to surgery indicated there were a few cysts in that kidney, but they were not considered a problem.
I really would appreciate any responses from anyone who has had a kidney removed that was cancerous. Thanks in advance.

 
Old 02-17-2010, 04:25 PM   #2
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I had the same diagnosis, which was made after they removed the kidney (robotics). It is rare but it seems that when they get the whole thing you should be fine. I have to trust my urologist on this one because I knew nothing about all this. He did tell me that it is the one of the least aggressive of the cancers and once removed rarely is a problem again.

I had all the blood tests done while in the hospital before and after. For me, I have absolutely no restrictions on food or anything. I am assuming this is lucky, also no chemo or anything. It's kind of weird really. The operation was done on Nov 26/09 so today it's been roughly 2.5 months. I spoke to a nephrologist the day after my return home (which was 2 days after the surgery) he went over all the tests with me, all the levels of everything and they seemed just fine to him. I think perhaps you should bug them and have tests done again until you are content that all is right.

My calcium levels were a bit high before the surgery and I think they suspected that the cancer had metastasized onto the bone or something. They had done a bone scan (nuclear medicine) then kind of freaked and proceeded to do a bunch more tests (ct and xrays etc..) all to say, that it seems that I have arthritis on my spine (damn) but WAY better than the alternative. I've had pain for as long as I can remember.

I wish I could help you more, but the only thing I would tell you is to follow your instinct. If you're worrying then go see another DR , after my mum died years ago, I realized that they are very capable of making mistakes too.

Good luck and post back when you get results!

I read this on another forum, something some wise person wrote
it expressed well how I feel:

"Remember while we have health issues, we are not sick..."

K

 
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Old 02-17-2010, 08:25 PM   #3
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Re: Chromophobe Renal Cell Carcinoma

Post Script:

This has planted the seed of doubt back into my head...

 
Old 03-17-2010, 12:14 PM   #4
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Wink Re: Chromophobe Renal Cell Carcinoma

This is for nokidneying. Thanks so much for responding. I didn’t think I would ever get a response since it is so rare that someone has chromophobe renal cell carcinoma. I’m glad to hear that you are recovering from the surgery well. I have osteoarthritis in my back and legs, and I can sympathize with your arthritis pain.

My creatinine readings seem to have stabilized at 2.5 mg/dl (indicating chronic kidney disease in the remaining kidney), but my calcium levels have improved. I continue to be anemic but that also has slightly improved. Each day I am getting more energy but apparently I will never regain what I had. I have learned to deal with that.

Sorry I took so long to respond. When I first posted, I checked every day but after not getting any responses for a couple months, I hadn’t checked until recently. I wish you continued good health and hope to hear from you again.

 
Old 03-17-2010, 02:55 PM   #5
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Re: Chromophobe Renal Cell Carcinoma

Greyfox: you are so welcome, funny how isolated you can feel when something like this comes along. I have no one to talk to about it (family etc... just don't understand nor do I want to bore them with it) however it is a concern. I have my 4 month follow up coming on April 1. I have had nothing else as far as Dr appointments. I have slowly felt better although now and then I do 'crash', a feeling of such intense fatigue that I wonder if I can put one foot in front of the other. However, for as long as I can remember I always suffered from fatigue, but this is a different type, all consuming, would be how I describe it. The weird thing is that I also suffer from insomnia, so I can be exhausted all day long and then not be able to fall asleep, this does not help... believe me.

I am wondering if you have any restriction (dietary, meds etc..) I was given almost no extra information, so as usual, it's up to me to find things out. Where was your surgery done? I am in Montreal, and for the first time in my life (other than having kids) I had to use our much maligned medicare system. I am still dumbfounded at how efficient and professional and FAST the entire process was! I suspect I am one of the lucky few, but a very thankful one.

Can you take tylenol/ibuprofen/aleve? do you have to restrict salt? etc... I don't know if you are m/female, but for me, my meno came on just over a year before the surgery (the actual cessation) so I am wondering if the night sweats were related to the kidney or the meno... now am thin king the kidney as they've almost stopped except on occasion. Regardless of your sex, you would perhaps get these sweats? I also feel alot less "toxic" that's the only way I can describe the feeling I used to get sometimes.. a general malaise. The osteopath was convinced it was my liver that was congested....apparently not the whole problem! my legs and feet are MUCH less sore (eg: when I got up in the morning I'd be hobbling) however now I've got a really sore hip (opposite side from kidney) I think it is related to the surgery, but probably also to my body trying re balance itself..not sure. The osteo treated me which helped enormously and I can now walk 2km without excruciating pain. The way I'm looking at it, the recovery is in little steps, sometimes bigger ones, but all in all going forward.

How did you/they find your tumour? how big was it? did they remove the whole kidney? how was it done? robotics or traditional? how long has it been?
Please feel free to ask me any questions and telll me anything you think is of value.

For the record, I am a 55 y.o. white female, history of back pain (20+ yrs). Otherwise great health and was always very athletic (skiing, hockey, tennis, swimming, ringette +++) now I walk when it's possible..used to feel sorry for myself, but now am just thrilled when I can walk...and get exercise and fresh air!

Look forward to hearing back and also from anyone who has any more information.

Oh and my heritage is Irish.........so HAPPY ST PADDY'S DAY!!!

 
Old 03-19-2010, 10:33 AM   #6
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Smile Re: Chromophobe Renal Cell Carcinoma

Nokidneying: Great to hear from you again. I fully understand what you mean when you say “crash” as I feel that intense fatigue periodically also. It is as if you have no control over your body, it is scary.

I have restrictions with my diet which include not taking supplements containing Vitamin D or calcium because I have limited filtering ability in my remaining kidney. I am at Stage 3, Chronic Renal Failure. Prior to surgery, my creatinine levels were slightly elevated, but after the right kidney was removed, the levels became dangerously high. I also have to limit my intake of dairy products. I am able to use salt in moderation to keep my blood pressure at an acceptable level. I take two meds for blood pressure which are working well. I can take tylenol, but apparently ibuprofen needs to be taken in moderation. I couldn’t get an explanation as to why. The only post-op instructions I was given when I left the hospital was not to drive for two weeks and not to lift anything heavier than a gallon of milk. I called the doctor’s office after I got home to ask questions such as when I could shower, when I could resume taking walks, etc.

I believe the night sweats are related to the kidney. My meno occurred when I was 50, and I hadn’t had any night sweats for many years until the surgery. Now I am having them again. I am a 62 year old white female, also of Irish heritage, (happy belated ST PADDY’S DAY!!!) with a history of high blood pressure, high cholesterol, and hypothyroidism. I had the entire right lobe of my thyroid removed 12 years ago because of a multinodular, non-cancerous goiter. It was pressing against my windpipe and making swallowing extremely difficult.

They discovered my tumour on a ultrasound. After complaining to my general practicioner for over two years about my fatigue and not feeling well, numerous bloodwork was done and he sent me to a nephrologist because of an elevated creatinine and calcium reading. The nephrologist ordered an ultrasound and a renal mass was found. He sent me for an MRI for a follow-up. The mass was confirmed and both kidneys were labeled as abnormal. Both kidneys also had cysts which are apparently normal for someone at this age. Within two weeks I had an appointment with a urologist. He scheduled me for surgery which was performed on October 15 and removed my entire right kidney using robotics, indicating it was definitely a renal cell carcinoma. The pathology report identified the mass as chromophobe renal cell carcinoma, 4.2 cm in size, and contained multiple simple cysts with calcifications and inflammation.

The surgery was performed in Fredericksburg, Virginia at our local hospital. I was in for three days. I had a lot of pain afterwards. Dermabond adhesive was used to close my incisions instead of stitches, but I was allergic to the glue and several days after I got home, I had to wash off the adhesive. The scars are healing well. I still feel some pain in the larger incision. I return for my six month checkup in early June.

Hope you continue to feel better and look forward to hearing from you soon.

 
Old 03-20-2010, 12:37 PM   #7
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Re: Chromophobe Renal Cell Carcinoma

Quote:
Originally Posted by grayfox View Post
Nokidneying: Great to hear from you again. I fully understand what you mean when you say “crash” as I feel that intense fatigue periodically also. It is as if you have no control over your body, it is scary.

I have restrictions with my diet which include not taking supplements containing Vitamin D or calcium because I have limited filtering ability in my remaining kidney. (very interesting, I am always wondering what affects the remaining kidney, so I can keep it healthy) I am at Stage 3, Chronic Renal Failure. (oh gosh, poor you, you sound like you've accepted it and are prepared to deal with whatever comes at you...good!) Prior to surgery, my creatinine levels were slightly elevated, but after the right kidney was removed, the levels became dangerously high. I also have to limit my intake of dairy products. I am able to use salt in moderation to keep my blood pressure at an acceptable level. I take two meds for blood pressure which are working well.(yikes, your health is delicate! I am very lucky to have no issues with blood pressure, and now am trying to walk 1/2 hr or more a day to combat everything!) I can take tylenol, but apparently ibuprofen needs to be taken in moderation. I couldn’t get an explanation as to why.(me neither and that's the best one for aches and pains of arthritis) The only post-op instructions I was given when I left the hospital was not to drive for two weeks and not to lift anything heavier than a gallon of milk. I called the doctor’s office after I got home to ask questions such as when I could shower, when I could resume taking walks, etc. They gave me a little more to go home with, like shower only for one week then baths if I wanted, no driving for 2 weeks, no skiing this winter.. at all, nor any kind of contact sport, not to lift anything and to rest rest rest, also gave me morphine to go...in tablet form.. I hate that stuff, it made me weird. I took lots of ibuprofen and tylenol, together in hospital and again at home.

I believe the night sweats are related to the kidney. My meno occurred when I was 50, and I hadn’t had any night sweats for many years until the surgery (Aha! I thought so!!). Now I am having them again.(yuck, poor you) I am a 62 year old white female, also of Irish heritage , (happy belated ST PADDY’S DAY!!!) with a history of high blood pressure, high cholesterol, and hypothyroidism. I had the entire right lobe of my thyroid removed 12 years ago because of a multinodular, non-cancerous goiter. It was pressing against my windpipe and making swallowing extremely difficult. (oh good grief!)

They discovered my tumour on a ultrasound. After complaining to my general practicioner for over two years about my fatigue and not feeling well (me too, he had resorted to giving me injections of b12..hehehe), numerous bloodwork was done and he sent me to a nephrologist because of an elevated creatinine and calcium reading. The nephrologist ordered an ultrasound and a renal mass was found.(my gynecologist finally listened to me and sent me for an ultrasound...bingo!) He sent me for an MRI for a follow-up (same here, but that was misdiagnosed as transitional cell carcinoma, maybe worked to my benefit as then the Dr had to disprove that diagnosis, which was not a favourable one, it has bad stats for survival, we sat in virtual terror for about 6 weeks, when two days before surgery, the Dr said the diagnosis was changed to renal cell and like you the lab results came back with chromophobe renal cell, had a cystoscopy, VERY unpleasant). The mass was confirmed and both kidneys were labeled as abnormal.(damn) Both kidneys also had cysts which are apparently normal for someone at this age.(my other one as well as liver also have tiny cysts, which will be monitored) Within two weeks I had an appointment with a urologist(same day for me, luck of the Irish??). He scheduled me for surgery which was performed on October 15 and removed my entire right kidney using robotics, indicating it was definitely a renal cell carcinoma. The pathology report identified the mass as chromophobe renal cell carcinoma, 4.2 cm in size,(mine was 7cm) and contained multiple simple cysts with calcifications and inflammation.

The surgery was performed in Fredericksburg, Virginia at our local hospital. I was in for three days. I had a lot of pain afterwards. Dermabond adhesive was used to close my incisions instead of stitches, but I was allergic to the glue and several days after I got home, I had to wash off the adhesive.(SAME THING! my daughter peeled the stuff off and I had a huge blister under one, she got the others off quickly and all was find, there were stitches under them, so not sure why they even used the stuff!) The scars are healing well. I still feel some pain in the larger incision.(the Dr took my kidney out with an incision at the pelvic bone at my daughters suggestion as there is less muscle tissue to cut through, thus less pain..ha ha, it still hurt like h - - -) I return for my six month checkup in early June. (I have a 4 month checkup in a week or so)

Hope you continue to feel better and look forward to hearing from you soon.
You too, keep your chin up! you have alot to deal with. Our health is so important. I have one suggestion for you, although you've probably already done it. There is a book that was suggested by a therapist I spoke with during my 6 weeks of terror she actually recommended two, but the one I found was a lifeline and I still read over and over, is called "Anti Cancer, A NEW WAY OF LIFE" The author is David Servan-Schreiber, M.D., Ph.D. It is an insightful journey through the cancer process, from both a medical perspective as well as personal as the author has had cancer twice himself. He digs deeply into the why's and what's of cancer and looks at the spiritual perspective as well as the eastern philosophies. There is a great section on nutrition but not just 'what to not eat' it explains the interactions of certain foods on a cellular level, making us understand WHY it's good to eat dark chocolate for example and a glass of red wine. If you can get hold of it, which should be easy for you, take the time to read it, it will be of such great help. The other thing I happened to be doing at the time was yoga, I had a teacher that for ME was fabulous, everything was at our own pace, slowwwwwwwww........ lots of older people in the class, even an 83 year old woman who gave me inspiration! I got quite into the meditation side of the yoga and began to do it at home after finding some basics online that I could easily follow. Servan Schreiber, the author, also explains the importance of a peaceful mind and how it helps all of our physical ailments. There is the concept that our emotions are part of our immune system, I found that SO interesting! think on it! what do YOU think?

Anyway must go and get busy.....best of luck to you, thank you for your reply, I guess misery does love company (just joking, I'm not miserable at all) I just find it comforting to be able to share my story a bit, and realize that someone else has almost walked in my shoes and me in theirs!

Cheers Greyfox.

K

 
Old 04-02-2010, 04:37 PM   #8
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Smile Re: Chromophobe Renal Cell Carcinoma

Nokidneying: Did you have your four-month checkup yet? Wondering what is involved. My next checkup is the first week in June. I'm hoping they will do another ultrasound of my remaining kidney. I would like to be sure there are no other tumours developing.

I haven't found the book you recommended yet, but I think I will be able to get it through the mail. I am looking forward to reading it. I also enjoy being able to share experiences and my story with someone who has experienced the same problems. I was hoping we would get more responses, but the fact that we haven't, does prove the chances of having a chromophobe tumour are indeed rare.

Take care, thanks for your last response, hope to hear from you soon.

 
Old 06-14-2010, 04:31 PM   #9
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Question Re: Chromophobe Renal Cell Carcinoma

This is for Nokidneying: Haven't seen any replies from you for a long time. How was your last checkup? I had a
checkup the first of the month. I am healing well, but I have some scar tissue and adhesions which are causing me minimal pain. Hopefully they will go away as I continue to heal. At least that's what the doctor thinks. During a recent set of xrays on my hip, it was discovered that I have extensive calcification in my abdominal aorta. My cholesterol meds have been doubled in hopes no further damage will occur.

Please let me know how you are doing, I've been concerned since you haven't posted for so long.

Cheers.

 
Old 07-20-2010, 08:32 AM   #10
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This is for nokidneying: We haven't heard from you for several months. How are you feeling? I'm still at stage 3 chronic kidney failure. At least I haven't lost any additional filtering capability. I still have a problem with my parathyroids and thyroid. My readings are high and the goiter in my thyroid has enlarged. I will probably be having surgery in the near future. I have had an additional problem filtering potassium from my remaining kidney. I have been put on a low potassium diet which is helping.
Please let us know how you are doing.

 
Old 07-20-2010, 06:17 PM   #11
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Re: Chromophobe Renal Cell Carcinoma

GRAYFOX :

Hy husband also has CKD stage 3. He has 1 kidney as his left kidney was removed to a grade 1 tumor which, thankfully, had not spread, thanks to it's early and timely removal. He's taking a med called Calcitriol for his parathyroid (the dosage has just been increased). His kidney doc said he is taking a relatively small dose which hopefully will control his parathyroid. Which med are you on (if any) for your parathyroid? Just curious.

Oh - I believe that ''Calcitriol'' is the generic form of the usual parathyroid med.

monte

Last edited by montesflus; 07-20-2010 at 06:18 PM.

 
Old 07-21-2010, 04:27 PM   #12
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Re: Chromophobe Renal Cell Carcinoma

MONTE: Thanks for your post. Glad to hear that your husband was also fortunate to have his tumor discovered early and had his kidney removed without it spreading. I have an appointment with my doctor tomorrow and she indicated at my last appointment that she may be putting me on some type of medication also. I just completed numerous labs and will get the results tomorrow. I'm not on any medication at this point. I'll keep you posted with the results.

Grayfox

 
Old 07-21-2010, 05:52 PM   #13
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Re: Chromophobe Renal Cell Carcinoma

GRAYFOX :

You say the readings for your your parathyroid and thyroid are higher than normal. Do you happen to remember the names of the particular tests that were used to determine this?

Good luck with your appt. tomorrow.

monte

 
Old 07-22-2010, 04:13 PM   #14
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MONTE: Doctor appointment went well. She wants to put me on the same medicine that your husband is taking. Could you tell me if he has had any side effects. I checked it out on the internet and there can be many side effects. I always seem to have a problem with meds, always some type of bad side effects. I'm hoping he has been able to tolerate it well.

The name of the blood test I had done for the parathyroid reading is called Parathyroid hormone with minerals. I also had blood tests done to check the vitamin D level and they are called 25-hydroxyvitamin D2 and 1,25-dihydroxyvit D.
I will need to repeat these labs after I have been on the medicine for two months to be sure the readings are correct. My thyroid tests include TSH and T4, Free. All of the blood tests cost alot with the exception of the thyroid ones but my insurance pays 90% so it's not so bad.
Has your husband had any of these tests done also?

Grayfox

 
Old 07-22-2010, 07:26 PM   #15
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Re: Chromophobe Renal Cell Carcinoma

GRAYFOX :

My husband takes two 0.25MCG Calcitriol capsules three times a week. His doc says that's a relatively small dose and should control his parathyroid. I don't remember seeing the parathyroid hormone lab test on his schedule, but I'll check the Kaiser Permanente website again to make sure. We can also get our lab results online through Kaiser. He has done the Vit. D tests that you mentioned. No, so far he hasn't had side effects that I know of from the Calcitriol. BTW, how did you find out about the enlargement of the goiter in your thyroid? Was there a special test for that too?

monte

Last edited by montesflus; 07-22-2010 at 07:38 PM.

 
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