Anyone with info on the subject of this posting? Thanks. Blessings, Bluerose
While I'm sure there are symptoms specific to cancer of the kidney, I can attest there are also no symptoms discernible for kidney cancer sometimes. I have had two major kidney cancer surgeries (a radical nephrectomy of my right kidney and a partial nephrectomy of my left kidney)(as well as removal of my cancerous prostate). With the kidney tumors, there were no symptoms at all. The only symptom I was experiencing at the time was a small discomfort in my lower abdomen. That went away after the prostate was removed.
We only found the kidney cancers by while having a routine IVP Xray of the kidneys to rule them out as a source of that pain. Luckily we caught them in time.
I'm sure others will post of their symptoms, but for me, there weren't any.
Thank you for your reply to my posting. Yes, this is what I have heard about kidney or adremal gland cancers - no real symptoms and usually yes they are found just to rule out other things or found while exploring something else entirely.
Thanks for your help. Blessings, Bluerose
Most kidney cancers are found while looking for something else. My 'symptom' that lasted nearly two year was a serious backache. Having had a back pain on/off over many years, this didn't seem like anything new except it was more intense, would not respond to any treatment or therapy, and was located more to the left (my cancer was of the left kidney). However, once it was diagnosed my urologic oncologist questioned me at great length and as it turned out, I'd had a 'flu' over the previous winter that just didn't seem to go away. I was so fatigued that just walking up one fight of stairs would make me want to lie down for a couple of hours. I'd get up, go to work, come home and sleep - repeat the next day. I also had what I thought were 'hot flashes from hell' - except that they wouldn't stop! I had had a total hysterectomy some years before and was on the highest does of HRT available. Hadn't had a hot flash in years and suddenly, the summer before my cancer diagnosis, I experienced non-stop sweats! Again, a very non-specific 'symptom' - but connecting the dots, they were all indicative of something seriously amiss.
As I have stated before, each of us had symtoms for Kidney Cancer before we were diagnosed. I had lower back pain which I assumed was lower back pain. I had a pain shoot**** up my leg when I drove for over half an hour which my GP suggested I see an Orthopedic Surgeon about. Finally one spring day I put in a patio sidewalk and exerted myself. Something that was supposed to be yellow turned red. I was freaked, but my GP said I probably only broke a blood vessel. He sent me to the Urologist who ordered a C_T scan to rule out anything serious. I wasn't worried until the resuts came back and even a first grader could see the tumor on my x-rays. Being told I needed surgery when I could barely get thru a dental cleaning without fainting was not easy. I almost passed out when Arnold Schwartzeneger had a baby in the movie, Junior.
Each of us has our own story about how the dots were connected. Unfortunatelt the GP's are not good at connecting these dots.
Now that I am 8 years post surgery I can try and help the newcomers. As I have said before there is no way to sugar coat the surgery, but it sure does beat the alternative, Those of us who are diagnosed with Kidney Cancer before it spreads (60% or more) are for the most part cured by the surgery. Even those who have some spreading of the Cancer need the surgery before they go forward with other treatments many of which have shown great promise over the years.
Having been there and done that (the surgery) I may just nudge the newcomers whose xrays may not be that clear to get the surgery behind them.
I am a 22 year survivor of NHL so not a newcomer to cancer but new to this type's issues. I have 4 pages of single typed diagnosis since the transplant and many late effects of it all too but the kidneys have never been an issue til that kidney stone. I have had tons of CTs and xrays since it all started and know that alot of damage was done with all of that, now of course they are seeing that even CT's emit radiation but I remember asking way back then when CT's were a new thing to me 'is there any radiation' and they said 'no'. So many things they discover over the years and don't do now like total body radiation which I had during my bone marrow transplant.
I have seen the medical community go from the 'why use a cannon when a bullet will do?' kind of treatments to the opposite and back to the former and back again to the cannon approach' sometimes I feel like a lab rat. Don't get me wrong, I am glad for the cure - 20 years clean and considered cured - but it certainly for many of us long terms survivors came at a price.
Anywho it is what it is, hoping this kidney scare will turn out only to be that but at the same time they have also found that my uterus lining is too thick and for no reason. Sheeesh. So I guess I have to have a D and C and like you I can't even have dental work without being put out. I have a pacemaker due to heart damage from a chemo drug years ago and other medical issues so general anaesthesia is going to be a little risky but I am hoping that the two specialists can get together on me and take a look at both things at the same time and save me two general anaesthesias. Getting two specialists in the same operating room with one patient for two differnt things? lol. That will be an interesting thing to try to do but I'm going to give it a shot for my own good.
Anywho thanks for your input. It's appreciated. Blessings, Bluerose
Those are my symptoms. I have had hastles with this intense sweating and actually that's what I went to the endocrin for in the first place. I knew it was bizarre and embarassing and mostly I sweated on my face and head - it was really out of control. Then it all kind of eased alot this last couple of years and now it's back again. There were all kinds of health reasons why I might be sweating was on HRT for years during my cancer treatments, well after, and I'm sure that screwed things up alot.
I have had low back pain and pain around the kidney area more recently. Had a kidney stone attack, my first and hopefully last, about 2 years ago and everything seemed to start with these kinds of issues since then. I have a scoliosis and that was blamed then diagnosed with osteoporosis and lower back disc degeneration so that was blamed but they kept talking about this little 'fuzzy spot' on the CT's on my spine lower back and they passed it off as arthritis but I never bought it - just a feeling. I am sure that little spot will prove to be something down the road.
Will go for the urine retest next week because my 48 hour urine test came back 'borderline' according to the endocrinologist but she didn't say borderline what? Sheeesh. She just left that message on my answering machine and said she needed a retest. You don't leave messages like that on the machine of anyone let alone a 2 time cancer survivor and someone with my late effects of treatment. Sigh.
Anywho thanks for the input, it all makes perfect sense in my case. Blessings, Bluerose
Yes I lost my appetite, severe weight loss, feeling tired and fatigued, severe back pain 10 years before finding kidney tumor, I never smoked and always been fit and lean, because I had previous back surgeries doctors ignored complaints off back pain.
It indeed sucks and then some. lol.
Yup this is what I am worried about, the back pain and not only this type of back pain which is new for me and of course right around the kidneys and lower but also I am being followed for two other issues that could produce back pain too. Nothing is ever straightforward is it?
I have deteriorating disc disease plus osteoarthris plus fibromyalgia and there is a shadow at the base of my spine they 'assume' is the arthritis but I have always had my doubts. Also they are looking at a female issue that can produce low back pain too so who knows which of these things, or all, are causing this pain.
I am like a dog with a bone though, won't settle for answers that make no sense to me, not anymore, as a 22 year survivor I have made that mistake once or twice but push when
something looks wrong. You have to be your own advocate sometimes but you guys know that I'm sure.
Thanks for your help with the symptoms issue, I had a gut feeling this is one big part of the puzzle that I have to get them to look at closer. I have a pacemaker due to heart damage from a chemo drug so can't have an MRI but I know that a PET scan could help but they are so chintzy with who uses that and for what. I am going to push for that next though.
I know my metanephron is borderline in the urine tests, the specialist (endocrinlogist) just asked me to do a retest and took it all back in today to the lab. So many stupid questions there I am not confidant in whatever the results are from the lab so will probably do it for the 3rd time if the results come back bad. Or even if they are good now I am unsure if they are right. Man if the disease don't get you the system will with stress sometimes eh? Sheeesh. lol.
Hope you are doing alright. Thanks again for the input. Blessings, Bluerose
My urine results came back noting that the metanephron counts were borderline. I looked that up and that led to another issue and the one comment that stood out for me was this on and off intesne itchyness which I have had for about 2 years - on and off. Did any of you experience that prior to diagnosis?
I had NHL as I mentioned and I know that itchiness is common before diagnosis of it as well. As are many symptoms they can cross into other diagnosis but in total with the low back pain, sweating etc with kidney issues just wondered if you guys experienced this itching too. I have had it so bad on my scalp and on my arms that I left scratches when it gets bad.
Thanks for all of your input. Blessings, Bluerose
I had the itchiness when I was on a cycle of Sutent. I thought it was the meds but my daughter looked it up and as it turns out it is a result of us having at least one bad kidney. I was going nuts with that itching though.
I found out I had kidney cancer via a phantom kidney stone that came on suddenly and brought with it excrutiating back pain and the inability to urinate. I was way out in the middle of nowhere working at the time. My crew chief saw how much pain I was in and rushed me to the local clinic where they did an x-ray and spotted the 'mass' that eventually led to my diagnosis. Never did find the kidney stone but nonetheless it was quite a fortunate series of events.
You never know what can happen when you share experiences.
Last year I had a kidney stone attack or that's what they said it was. Excrutiating low back pain from hell and they said they the stone on the CT scan and it was about to drop into my bladder and pain would cease - which it seemed to do - all of a sudden pain over.
About 8 months later I went in for a checkup with the urologist and he said that the recent CT showed the stone was still in the bladder so they would have to remove it. So I go in the day before surgery to drag it out and they take another CT just to be sure it's still there - yup they said, there it is. Sooooooooooo in I go THE VERY NEXT MORNING. They give me conscious sedation and when I wake up guess what? IT WASN'T THERE.
So they try to tell me I must have passed it. NOw give me a break, I hadn't passed it in 8 months isn't it a little hard to believe that in less than 24 hours I passed it on my own? Come on. So I have always wondered about that.
Flash forward to a few months ago I start to get other symptoms like more back pain and sweating got worse and plus I didn't realize it but I was itchy too, didn't realize the itchiness could be a symptom of something.
Then all kinds of weird stuff started happening. Mostly test results were coming back wonky like creatine levels were off, never had that before, and then recently the melanephron numbers were borderline. I looked into metanephron and we are talking adrenal glands/kidneys. I just heard back on the metanephron retest and its much better than the last one but something is up because I never had these issues before.
They are also investigating a thickened uterus lining out of nowhere it's thick all of a sudden and while I don't worry about cancer returning (22 year survivor here) I'm not dumb either new symptoms need to be investigated.
Very interesting you talk about a phantom kidney stone, I am going to dig into this with my specialists at greater length.
Thanks for your posting.
Hi Bluerose- I've had this symptom for over a year, and although I've had a partial nephrectomy and removal of the adrenal gland, it just hasn't gone away. Yes to the sweating as well- but the itchiness is still driving me crazy! Do you know what causes this, and is it a symptom of our cancers? BTW,I too had a phantom "kidney stone" which apparently disappeared spontaneously- can't figure that one out either!
Cheers, Von xx
Wow this is interesting that you experienced this itching too. I read up on metanephrin readings in the 24 hour urine tests I had as that was the borderline number that I had. I haven't been diagnosed with anything yet, am a 22 year survivor of non hodgkins lymphoma and itchiness can be a symptom of nhl too so that could have thrown them from a kidney issue diagnosis.
When I was looking up the metanephrin issue that lead me to other issues that could produce the itchiness as well which was the first time I realized that this itchiness could be a symptom. The tests for metanephrin in urine tests is a test that can produce alot of false positives so it's all not easy to diagnosis a tumour if one exists.
I tried to find that list that pointed to itchiness at a certain stage but can't find it now. If I find it I will let you know. Something about the adrenal glands was what was causing the itchiness I think it said but maybe it was teh kidneys, darn chemobrain, now I can't remember. But it was definitely one or the other.
Take care and thanks for the input. So interesting that another phantom kidney stone was noted in another case, just like mine. I have always felt that there was something more to this 'kidney stone' than met the eye. I think they should do another CT to see if that 'stone' is still in the bladder or elsewhere - maybe it's not a stone.
my wife had RCC clear cell kidney and was dx in july 2005. she has discomfort in her side for 9 monthjs and some blood in urine occassionaly. She had surgery to remove kidney and no other treatment. the size of tumor was 7cm, barely stage 2, remission for 5 yrs now
Common symptoms of kidney cancer include:
•Blood in the urine (making the urine slightly rusty to deep red)
•Pain in the side that does not go away
•A lump or mass in the side or the abdomen
•Feeling very tired or having a general feeling of poor health
Most often, these symptoms do not mean cancer. An infection, a cyst, or another problem also can cause the same symptoms. A person with any of these symptoms should see a doctor so that any problem can be diagnosed and treated as early as possible.
If a patient has symptoms that suggest kidney cancer, the doctor may perform one or more of the following procedures:
•Physical exam: The doctor checks general signs of health and tests for fever and high blood pressure. The doctor also feels the abdomen and side for tumors.
•Urine tests: Urine is checked for blood and other signs of disease.
•Blood tests: The lab checks the blood to see how well the kidneys are working. The lab may check the level of several substances, such as creatinine. A high level of creatinine may mean the kidneys are not doing their job.
•Intravenous pyelogram (IVP): The doctor injects dye into a vein in the arm. The dye travels through the body and collects in the kidneys. The dye makes them show up on x-rays. A series of x-rays then tracks the dye as it moves through the kidneys to the ureters and bladder. The x-rays can show a kidney tumor or other problems.
•CT scan (CAT scan): An x-ray machine linked to a computer takes a series of detailed pictures of the kidneys. The patient may receive an injection of dye so the kidneys show up clearly in the pictures. A CT scan can show a kidney tumor.
•Ultrasound test: The ultrasound device uses sound waves that people cannot hear. The waves bounce off the kidneys, and a computer uses the echoes to create a picture called a sonogram. A solid tumor or cyst shows up on a sonogram.
•Biopsy: In some cases, the doctor may do a biopsy. A biopsy is the removal of tissue to look for cancer cells. The doctor inserts a thin needle through the skin into the kidney to remove a small amount of tissue. The doctor may use ultrasound or x-rays to guide the needle. A pathologist uses a microscope to look for cancer cells in the tissue.
•Surgery: In most cases, based on the results of the CT scan, ultrasound, and x-rays, the doctor has enough information to recommend surgery to remove part or all of the kidney. A pathologist makes the final diagnosis by examining the tissue under a microscope.
•Stage I is an early stage of kidney cancer. The tumor measures up to 2 3/4 inches (7 centimeters). It is no bigger than a tennis ball. The cancer cells are found only in the kidney.
•Stage II is also an early stage of kidney cancer, but the tumor measures more than 2 3/4 inches. The cancer cells are found only in the kidney
Thanks for all the info Heart, appreciate that. I have had a couple of 48 hour urine tests and my creatine levels were wonky too and are being repeated occasionally to monitor.
I see my GP Nov 7th and am going to talk to her about CT scans and maybe another blood test. Like I said before on here all of a sudden starting a year or two ago I get a kidney stone they never actually could find after going in to get it, seemed to show up on the CT's but something the urologist said to me initially when he was looking at the stone in the bladder he said 'there it is. AT least I think it's a stone. Ya it is'. That was right in front of me and that always left some doubt in my mind. Then after that I got other symptoms and again, never had anything wrong with the irniary system before. It's not a coincidence.
Thanks again Heart.
It looks as if itchiness is a common symptom in lots of cancers. I found it in breast cancer diagnosis and NHL and either adrenal cancer or kidney cancer. Like lots of other symtpoms I guess it can appear in several kinds of cancers. I just mentioned it earlier because I had never seen itchiness on the list of symptoms of a cancer before except for my NHL.
Itchiness is something that you can so easily blow off as something else though so that's why I didn't think of it til these knew urinary symptoms showed up.
Thanks for that,Bluerose. I guess the worrying thing is that although the cancer is now gone (?) this symptom remains, which makes me a little paranoid! Anyhoo, all will be revealed with all these tests we'll be having- something to look forward too, eh ?!!
All the best, Von
Oftentimes symptoms remain and new ones occur after treatments, I am living testament to that as many are.
It's pretty normal to feel 'paranoid' about your body since it had cancer at one point, so many of us thought we knew our bodies and then when you get that kind of diagnosis all of a sudden we are unsure. Best thing as far as I am concerned is to go with your gut and if you develope new symptoms or one remains and it is bothering you pass it by the doc, you never know.
Itchiness can be so many things other than cancer too remember - nothing will dry you out faster than radiation too and that can produce skin issues and other issues years after. But not for everyone - everyone is different.
Yup something to look forward to is right but I would rather it be a trip to Europe instead of looking forward to more tests and results. KNow what I mean, eh? lol
Take care of you.
Me too, phantom kidney stone and backache from hell. I am getting so irritated with docs though because I have been connecting the dots of many symptoms I see that are common with kidney issues and they just disregard it as something else, which it could be but what the heck, they aren't listening.
Within an month's time I will see the endocrinologist who ordered my 48 hour urine tests and found the irregularities and corner her and make her listen to all of these symptoms and that is that. They tell you one thing, REPORT SYMPTOMS TO YOUR DOCTOR but for many they just look at you when you do report them like you are paranoid. It's terrible.
I have never had issues in the kidney area before, backaches yes but who knows what that really is? Having said all of this I am a pretty complicated case because of all of my previous cancer treatments from a bone marrow transplant and other cancer treatments but still if they don't listen and test for connecting dots then what good are they? It's so frustrating.
Thanks for your input. It's appreciated. All the very best. Bluerose
This reluctance to actually listen to the patient is far from rare, worse luck! Your frustration is so understandable- and given your health history, they should be hyper-alert for ANY symptoms you report. Don't give up, Bluerose- these doctors are just human (whatever godliness they project!) and they can all make mistakes (although will rarely admit it).
I'm really unhappy with my GP & Urologist at the moment, having finally had a Urology follow-up last week and a GP appt yesterday. For 5 weeks after the nephrectomy I'd been so worried about my RCC- and no-one bothered to tell me that it wasn't cancer but a metanephric adenoma although they'd known for all that time. When I went to my regular doc & requested information (how much of my left kidney remains, what is my kidney function, is it likely to grow back as there were positive margins etc) he said "why would you want to know all that- what use is it to you?". He honestly couldn't understand why a patient would want to know about their own body....and so I still don't know.
I'm very grateful to the surgeon who operated on me and am full of praise for their expertise. I am so fortunate that my tumour was benign- but it burns me a lot that no-one listens and that these experts feel that they're the only ones who have a right to know anything.
I hope you're doing ok, and will get the answers you need- blessings on you!
WHAT??? No one will answer your questions about your own results? That's just not right. That reminds me of my first specialist who diagnosed me.
That specialist had a long history of complaints about his attitude towards patients but I went into my first appt, scared out of my mind knowing it was cancer but not what kind and what odds were blah blah blah. So I start asking him questions and he answered with 'I don't know why you people (YOU PEOPLE), GRRRRRRRRRRR, need to know these things'. I couldn't believe what I was hearing. I said to him 'maybe because it's OUR LIVES here'. Sheeesh.
Anywho on other appts he breathed heavily when he saw I had a list of questions but I persevered and asked them anywho - he answered them all begrudgingly.
One appt, about 4 in from first meeting this guy, I guess I was feeling a littel feisty so I got myself a roll of that old adding machine tape or cash register tape I guess they use similar products for, and I took off about 8 feet of it. On it I wrote, well scribbled what looked like writing but was fake. Took that with me. When this specialist walked into the room I flung out the reel of tape that went to the floor and a bit ahead of me and I said to him, as usual 'I have a few questions first.'
First he looked down at the tape length and then at me with a shocked look then looked back up at me and he burst out laughing. lol. From that day forward he was still a turkey but I knew he had it in him to be human - well for a minute.
But in the end it isht funny having insensitive physicians and I guess after over 20 years of treatments and appointments and follow ups and invasive testing you just get a tad sick of it after awhile. Of course there were caring doctors and nurses too along the way but if you are worried and have new symptoms your nerves can be frazzled and of course the nerves are already neurophothied so that's not a good start. lol.
Thanks for your input and encouragement and if I were you I would find the head of the department that those specialists work for and demand the results. That will get them moving. I have gone to hospital heads before and they call them up on the carpet - the offending specialists that is. Know that if they are doing that to you, they are doing that to other patients. Stop the madness and step up to the plate if not for your sake for those that will follow you. Just my 3 cents.
Take care. Bluerose
Hi Bluerose, how's everything? Sorry I didn't get straight back to you, esp after all your wonderful advice! I still don't have any answers, but will be switching GP's next week & will be expecting to receive all the info I think I deserve as a patient. I've thought of reporting my experience, and if there's no joy with the next Dr, I will. I guess this is the downside of a "free" health service- you have to take what you get, although we've paid the Medicare levy from our taxes for many years. Hmmm...
How are you feeling? Please let me know when you get a chance!
I still don't have results back from the 48 hour urine I did for that endocrinologist. Last I heard my GP called her office for results and they said that they would call me within 2 weeks and set up a follow up appointment but of course they didn't. This is unreal, never had results come through so slowly. I know it takes forever to get appointments with the endos here but she left me saying that unless there was something wrong I didn't need another appointment and so hello she is saying she needs to see me but won't come up with an appointment? Thank you so much for leaving a cancer survivor hanging so long. Man.
The other issue with this new thickening of the uterus is waiting for another ultrasound which will be next week on Tuesday. The oncologist will have a look at that (I am praying that it has disappeared)and then set up a surgery date to go in and do a D&C to biopsy. He was just going to do a biopsy in his office but NO THANKS - I can't do invasive ANYTHINGS anymore due to trauma of previous invasive procedures. I go in in early December to sign surgery papers and then in January they do the surgery and more waiting for results. However this guy is on the spot so I know I won't wait long for those results, he is supposed to be the best gyne/onc in the city - fought hard to get him. They usually don't take patients who don't have cancer but because of my extensive treatments for NHL years ago and all the side effects he agreed to take care of me which is wonderful.
So I am still sitting on two medical issues, well more but the two that are possibly you know what so nothing has changed. I had that cyst on my ovary and seems it has shrunken to nothing or disappeared. Sigh. Good thing I didn't listen to the 3 other gyne/oncs I had who were going to do everything from a lapascopic ovary removal to a full on hysterectomy - and now it's just poof - gone. Sheeesh.
One thing you learn fast in this cancer game - GO WITH YOUR INSTINCTS. You know that as well as I do I know.
Anywho I hope this email finds you feeling better.
I'm really sorry to hear you're still getting the runaround, Bluerose. After all you've been through no wonder you're not happy with this treatment! I will be thinking of you on Tuesday (Wednesday my time) and will concentrate on the ultrasound showing NO problems at all. Take heart- you are still you, and no disease or other person can diminish that.
You are so right about "instincts"- they are under-valued in this Age of the Experts, where it's so easy to let someone else do our thinking & make our decisions for us.
Thinking of you with light & love, Von x
Oh well, I have been dealing this kind of thing for years now, you would think I would be used to it by now. It helps to talk about things though on a board such as this and especially when you know that other people totally understand as they have had similar issues, makes you feel you are as alone in it all.
You make a great point about people letting someone else do our thinking for us, very true and add to that the uncertainties of just hearing the words 'you have cancer', that's enough to knock every instinct you have out into left field leading the way for any doctor to have free reign over our lives. There are a ton of really wonderful doctors out there but even with those on our side sometimes we need to listen to that inner voice to guide us as to what might be best for us as individuals first - guided by instinct to add to the mix of input from the docs.
Thanks for your caring response. I appreciate it - take care of you.