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Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

So I was feeling a little more at ease with my doctor but today they called to set up surgery date and it's September 8th. Is that the norm on the wait for surgery? I was just kind of taken aback mainly because of my leg pain and the fatigue when I had talked to the DR last night he had seemed like it needed done sooner than that because he said it was larger on the second scan. Plus it was poorly differentiated. Is the wait for surgery typically just over two months or do I need to go get seen elsewhere?  I feel like I am getting the run around. I told the lady look I have been in the office for all of five minutes, I've had a phone call I have cancer, another phone call I need to schedule surgery and that's all the info I've recieved. I'm gonna be????????

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Yes, Mellie, it is clear you are a bit on edge.  Nothing we can say will stop that.. only YOU can stop it.. hard to do, I know.  I noticed in your last post, your hubby went with you, but sounds like he was not with you during the doctor part.. WHY..?  It is a very good thing to have someone with you during the doctor chat, that person can write down your questions to ask before the visit, and take notes during the visit.  Often the patient is not clear headed enough to do it alone.  Remember two heads are better than one..!

The wait, not unusual.  Especially since your tumor is on the small side of things.  Please read my other posting a few minutes ago to another person here.

Also keep in mind that the system has a lot of patients waiting for surgery.  They take the most urgent people first.  And sadly there are too many people needing surgery..!

It WILL be OK... trust me if you can... you CAN do this..!!!  There are other posts here that relate what the surgery is like and what to expect.  Do a search and then many questions will be answered by many different people.  Keep in mind that if you wish to reply to something, if the post is old, that person may not come here very often or may of moved on.  Many times people with low stage and grade tumors get beyond the Cancer fear and go on with their lives.. nice.!

Ron

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

He went with me but there hasn't been an appt since the diagnosis. I went in and they order me the second catscan. They ordered the biopsy gave the results by phone said I needed surgery by phone and called to say when by phone. But the haven't set up an appt to see me to explain or discuss anything. He was a bit concered the dif in size between the 1st and the 2nd scan and that's why I thought the dr sounded more urgent. 

APny's picture
APny
Posts: 1966
Joined: Mar 2014

Mellie, unless I misread your post in the other thread the initial measure was 3.9 cm and the second was 4.2 cm. I'm no doctor but that doesn't seem like a big difference. In inches it would be 1.5 inches vs 1.6 inches. Did the doctor express concern about the size difference? Either way, it's a small tumor and very unlikely to make a difference even if your surgery is not immediately. But you really do need to go in and sit down with the doctor so he explain everything instead of doing it over the phone. It's much easier to clarify things in person. Call the doctor and make an appoinment to discuss everything that is worrying you. The surgery part is not horrible at all. I had a partial and supposedly that's more complicated than a full nephrectomy and the pain was very manageable and I was out of the hospital in two days. I was terrified of being in pain, etc., but it wasn't nearly as bad as I had feared. Your mind is your worst enemy. You'll be fine, I promise!

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

The doctor did express concern a bit, but then did say maybe it was just misread the first time. The scans were like 12 days apart. I did read a bit about the growth rate and read it is supposed to be slow something like .5 cm a year or six months, but for me this doesn't really add up. In September 2012 I had to have 2 ct scans and an MRI in October of 2012 I had to have another. At the time of these scans nothing was on my kidney so the .5 doesn't really add up for me. Which I know everyone will be different.

i did though have an appt with my family doctor today. She and I have been through the ringer together.. And I really felt comfortable talking to her. I was able to ask her most of the questions That I wanted answered. She doesn't really think the September date sounds right either and is going to talk to the urologist on Monday. 

i know the urologist did tell me a bit yesterday morning about how it will probably be done a full nepherectomy from the side. Mainly because I have something going on with the veins in my abdomen. Not sure how that is going to affect the abdominal hernia repair at the same time now.  

My blood pressure was 200/90 when I went in today so above was right I have been on edge. I have something for my anxiety now so the whole being on edge thing is worked out hopefully. They had to keep me around the office till it went down. I don't have high blood pressure so I just had to wooosaa.

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Mellie, I think you can take what Ron said, to the bank.  That said, I would not book my surgery over the phone without first meeting with the doctor to find out what his surgical plan for your particular situation is.  Do you know if he will be doing a partial or full neph?  Size doesn't always matter in terms of one procedure over the other.  My tumor was small too, at 4.7cm but was situated in a bad spot, butting right up to the renal vein with "possible invasion".  My doctor told me if I were his daughter, knowing what he knows, he'd take the whole kidney.  That was good enough for me.  That's how I want every doctor to treat me...the way he'd treat his loved one. 

He should tell you what he plans and why he's reached that conclusion.  Also, he should explain the procedure in terms of size of incision and how long you will likely be in the hospital.  I agree that increase in size is minimal, at best. 

If I were you, I'd call his office and schedule a consult.  There's nothing to lose in doing so and it will likely put your mind at ease...somewhat.  I know 2 months seems like a long time to wait for surgery but, it likely means you can afford to wait based on the tests he's done and the location of the tumor.  Try not to stress yourself too much, you'll need all the energy you can muster, for your recovery. 

I'm sorry you're going thru this and I know how scared you are.  The good news is, for most of us, surgery is the cure.  I pray it will be no different for you. 

Keep your chin up!

Sindy

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

Millie,

There is not one of us on this board who when we first heard we have Kidney Cancer that was not scared. And to top it off they start with this not to fun surgery where they want to remove a kidney. The C word is bad enough but who ever heard of Kidney Cancer and than to start with major surgery to boot. Well that was 12 years ago and you just do not forget those magical moments.

 

While there is no way to sugar coat the surgery those of us with relatively small tumors are for the most part cured after the surgery. Mine was 4.2 cm, 

 

You will be fine. Sorry you had to join our ckub, but you are welcome with open arms.

 

Icemantoo

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Yes I need to sit down with him. My family Dr answered a lot of my general questions today so that helped some. He told me last night a full nepherectomy from the side but other than that nothing about how big the insision would be or hiw long the stay would be.  The reason for the full is because of the bleeding and he said it is embeeded pretty deep into the kidney and the best bet is take it all because of blood vessels or bleeding something like that.

a_oaklee
Posts: 489
Joined: Nov 2013

I'm really sorry that you are going through this.  I understand quite well the worry and stress.  I would like to say that if I was in your shoes, I would ask the doctor why the appointment is being scheduled for August.  That's just me though.  I ask a bunch of questions.  I would also ask if it could be moved up and that you are willing to do it sooner if there is a cancellation. 

When my husband was in the hospital because of hematuria, he was diagnosed with the kidney mass.  A local urological surgeon wanted to remove his kidney immediately.  I asked him "how many of these have you done?".  He basically had a hissy-fit.  We live in a small town.  Upon discharge from the hospital we saw our primary care provider who made an appointment for my husband at a major medical center with a renal cancer specialist/surgeon and a renal oncologist.  Our primary care doc is the greatest advocate for us.  He got us an appointment in less than a week.   It was a 3 hour drive for us.  We felt that it was important to see someone who is experienced. 

My husbands tumor was 5 cm and he was diagnosed at Stage 4 due to mets to bone and a lymph node.  His grade is grade 3 out of 4, which is reflective of how advanced, or mutated the kidney cancer cells are when compared with normal kidney cells.  The lower the number the better.  He is also Clear Cell RCC like you. 

All of this happened 2 1/2 years ago.  He is doing pretty well.  His scans for about a year and a half now show no evidence of metabolic activity. 

Anyway, noone can tell you if it's okay to wait that long.  You have to do what you feel right about with the surgeon/doctor that you have faith in.  You can only do your best at any given moment with the information that you have, and with the resources that you have.  Take it easy Mellie.  I'm really glad you found this site for all the support that people here give.  Another good site for information is Smart Patients. 

I will be thinking of you and hoping for the very best. 

Annie

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

I am glad I found this site. I am trying to be much more proactive with my healh care because I had a very bad experience with my last surgery. I more or less just followed what they said like a puppy dog and didnt go into that surgery asking enough questions or stressing to the surgeon some of my medical issues that may creep Up.

My primary care Dr is who discovered the hematurra in my urine. Microscopic And ordered the first Cat scan we have been through a lot together. I did have an appt today with her and she explained a lot of the things that were on my mind. And she is gonna make sure things get done.

the grade of the tumor on my report said it was 3-4 out of 1-4 but I'm not really sure what that mean.

ive heard everyone talk about mets and one of my questions today was when do we do the tests to check other areas of my body. She said well I am sure you will need some. And said she didn't know if they were done before or after surgery each dr is different. But that's something that was on my mind.

thanks to everyone who has took the time to listen to me and help me. I may have many more questions. Annie I hope your husband. continues to stay met free. I hope maybe someday after all is said and done and I know some answers maybe I can help someone like me.

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Mellie.. I think all of this is sinking in.,..good..  We all know how hard it is before the surgery... and as we are all different we all have different concerns about it all.  What is important is that you have the right surgeon.  It is OK to check this surgeon out... use the internet, find out his/her credentials.  Yes there are things you CAN control.!  I would not be concerned if you need to travel a bit further to get a better surgeon for you.. plus that may move the date up.  Take the time to search around..  Another pre-surgery patient just booked himself to get in to the NIH, the best there is..  That means two air plane rides each way for him..  So do some checking and see what you find... no penalty there..!   I was lucky, I was referred to one of the best in the country only 2 hours drive..   And once I read about him, I KNEW I was in the right hands... Yes I was still scared and a blubbery idiot at times, but I knew I would get great care..!  Unlike many, when my surgery got postponed, I was a bit happy... the thought of surgery scared the cr** out of me..

I gotta tell you, that once I woke up after the surgery, I felt like I just conquered the world.!

OK a few things you need to know.. you should get choices on pain drugs.. either an epidural or a "button".  I can't say which is better, your call.  Unless you can find someone that has had both, then we all have only a one sided opinion.  And because there will be some pain, as soon as you feel it coming on, holler..!  They will give you a booster shot, but it takes time to kick in.. so do not wait for it to really hurt.   That said, some people had like no pain, a simple Tylenol is all they took, lucky dogs..!!  Next is getting out of bed.. the sooner you can stand, the sooner you get to go home.  Oh yes, and there is the gassy part.. do not hold back..  and same with that first bowel movement.. all of that gets you home sooner..!

The hospital I was in, was more like a 5 star Hotel... I had a phone and a menu.. could order my food and it would show up, all nicely prepared and tasty..!  Much better than airplane food..!!  Oh and I even could order multiple things... and they would reduce the portions so I would not over do my limits (they knew)..  So I had two half sized deserts... yumm..  Sorry, I do miss their food..!!  Cool

And once you get home.. no matter how good you feel, it can take about 6 months for your insides to heal... do NOT over do it.. you will be sorry if you do... no picking up the kids... sorry..  Walking is good.. keep walking...  water is your new best friend... adjust the diet a bit.   Oh.. dare I tell you..?  Do not be surprized if you end up a bit lopsided..  My navel is off center by about an inch... I laugh at it...

Ron

Karen0074
Posts: 64
Joined: Apr 2014

mellie, I'm waiting for my op just like you, the waiting is so hard. We can do this xx

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Yes we can! I'll wait with you.

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Surgery scares the crud out of me too. The last one I had was a doosey and wound me up in the hospital for a total of 33  days. 9 days then re-admission 15 days later.  And it wasn't to far in the distant past. I more or less had to have three surgeries to fix a seroma and infection after my hysterectomy it left me with an open wound that had to heal from the inside out that was 16 cm by 12 cm and 9 cm deep. I also had the kidney injury which had me in the ICU three day.  So the thought of being cut on again is scary. I had to have two pints of blood two pints of plasma and woke up from my second surgery still in recovery to them telling me we need you to relax we can't get the blood to stop we have called the dr back and he has to come cautaurize the vessels so you are going back under.  I went home with a wound vac after I left the hospital and had to go to wound care once a week and have home health invade my home twice a week for three months after. 

I am going to a different hospital this time though and let me tell ya I know for a fact the foods better in it lol. Same thing you mentioned phone and menu etc.

this time though like I told my family doctor I am being proactive asking more questions.  If I point something out thats not right like I did my seroma previously I am going to be sure the doctor takes me more serious so it's not left to the point it's infected and profusely leaking. He had thought my body would re-absorb it. Most bodies do- (lymphedema).

But I have to swallow my fear of the surgery because there is no other choice. A close friend told me she thinks the above was preparing me for what's to come and she is most likely right.

i will have to remeber not to do any picking up though. I think that is why I have the hernia now.

 

a_oaklee
Posts: 489
Joined: Nov 2013

Mellie.  I wanted to share with you that there is good information right here on this site.  To the left of this page it says Cancer Information.  Click on that, then click on Learn About Cancer.  On "select a cancer type". Choose renal.  It will explain grading and staging etc..  It was helpful to me when I began this journey.

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Thanks I have been reading a bunch of it. and I found a good resource to read about my feelings. I haven't been able to sleep at night since Wednesday so most my readings about now. I am hoping I don't make my family mad being tired again in the morning. I've been going off into my own little world thinking and a family member has gotten mad at me and told me to screw my head on because I wasn't focused on what they were saying. I felt guilty for that. I was like I have a lot to think about it's only been a few days just give me a short break. I've been doing a lot of reading. 

APny's picture
APny
Posts: 1966
Joined: Mar 2014

Mellie, being told you have cancer and need surgery will make anyone’s head not be screwed on right. It’s natural to go off into your own little world and not be too focused on other things. No offense to your family member but it’s something they should understand, and if they don’t, it’s not something you should feel guilty for.

 

I'm sorry you had such a horrific experience with your hysterectomy but that doesn't mean your kidney surgery will go the same way. It's not going to be pleasant but honestly, like I said before, it was a lot easier than I feared. I'm hoping yours will be the same way and you'll find yourself saying it wasn't as bad as I feared.

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Thanks. I'm glad yours went well. Mine will. My mind is in a much more positive place today.  I'm gonna roll with what comes.

Not falling asleep at night is doing me in but that will probably fix in a few days.

I sent my family member some information today and to my surprise he read it so I think things will get better there. I want to thank everyone for their help. You all have been through so much and being here helping others means a lot. Thank you. I'm waiting tomorrow for another call on my surgery. My mom was like are you going to call and remind them first thing. I was like no I am going to be patient if they don't call me by three thirty or four then I will. No more frantic patient!

Im probably going to get my feeling hurt by caring friends and family more than once so I need to make up my mind now just to educate them and realize how they are feeling too.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Before surgery, there is nothing wrong with getting a perscription for sleep/anxiety medicine.  It is temporary to allow you to be in the best position to heal.

 

 

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Hi Mellie,

I waited 7 months from detection to surgery, and even then, the doctor's weren't concerned.  As my urologist explained it, as long as it's under 7 cm they don't rush things.  I had an Open Partial, and believe me, I was in no hurry.  I could have had surgery a month sooner, but I had a trip planned that was non refundable, so I choose to go.

 

You'll be fine.  We all know the anxiety you're feeling.  Once you near your surgery date, it'll get easier.  Try to enjoy your summer and get as much exercise as possible to make recovery better.

 

Hugs, thinking of you.

 

aamdsi
Posts: 284
Joined: Apr 2014

The summer as much as you can.  Keep walking and getting plenty of exercise - that will help the non-sleeping a bit too.  It will also ease getting back to "normal" afterward.

Anxiety is almost a good thing, for if you weren't a bit nervious and such about all this, I doubt you would ask all the questions that should be asked.

I found the waiting for the surgery harder than the surgery and recovery afterward!  I had an open partial in March.  Had a worse time with the pain meds they were giving me (I was trying to get them to stop, didn't need them at all) than anything else.  Once out of the hospital - walk, walk and walk some more.  Moving around helps everything from pain to getting the insides moving (if ya know what I mean).

NO PICKING ANYTHING OR ANYONE UP!  Now that was hard - but trust me, it's harder if you make the mistake and do it 8-(. Wait the 2 months (or what they tellyou to).  I did, however, use 5 lb weights to keep my arms and shoulders in shape (they were apporved) and it made me feel better.

 

Once the staples (or whatever they use) are removed even the incision will start getting back to its new normal.

You will get through this.  I found this site to be very helpful in doing just that!  People here are from all walks and at least one oterh person will have gone through whatever you may be feeling and they will help.

Hugs to you. Now go enjoy some sunshine (raining here ...again)

Laurie

 

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

I found out today it will be early August instead of September 8. I notice many time people who develop RCC seem to have found out and had little or no symptoms. I have been having a problem with extreme fatigue for several months. It's like once or twice a week for several months I have gotten so tired I feel like my body is sinking into its self. And then I become so drowsy I just can't fight it. Another symptom is severe leg pain, not sure why it's related or even if it really is but it's why I got to the doctor. And just a general feeling of feeling unwell. So I am glad they moved it up. I am ready to feel better and have my energy back. So down a month on the waiting now.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

There are many things that can cause most kidney cancer symptoms....Severe leg pain is one I had not heard before...tiredness could be from your body's imune reaction. But it could be from not getting enough sleep at night.

 

In my case, I had (in hind sight) four symptoms:  Night Sweats, unexplained weightloss (I was happy about that...lost 25 lbs in 5 months), afternoon fatigue, and a sore back...I was actually going to talk about the fatigue...but then I had the tramatic event that lead to the tumor discovery (Passed out due to abdominal pain...CT scan to rule out admonimal problem, which it did, but found the tumor).  I know things are related to the tumor because, after it was removed, the symptons dissapeared.

In general the only symptom that leads to a RCC diagnosis is blod in the urine.

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

dhs,

I am going to disagree with your last statement. Blood in the urine may or may not lead to Kdney Cancer ( a 25% chance). It does call for a CT which will diagnose Kidney Cancer if it is there,

Icemantoo

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

The original symptom that sent me to the doctor in the fall of 2011 was fatigue.  I'm talking bone crushing, I'm gonna be sick, can't get my @ss off the couch fatigue.  It took 3months of testing all kinds of things before my dr happened to look at me and notice my thyroid looked large.  Round 1

Then in the fall of 2012, while at a visit to my then oncologist, I mentioned I thought something was going on with my kidneys. Nothing specific, but I had crampy type pain when my bladder was full. Never thought much of it, neither did the onc.  Low and behold, 5 months later they found the kidney tumor.  Makes me wonder why the onc didn't follow up on it?

 

The fatigue I still have.  Mild most of the time, occasionnaly hits me like a ton of bricks.  My get up and go got up and went!  I'm not sure if it has to do with having no thyroid and taking replacement meds (since Synthroid cant duplicate our natural hormones exactly), but I'm tired of being tired!

 

Another thing I find is a bit of brain drain.  I can't retain info like I used to, and I have to write everything down now.

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Blood in the urine does not always call for a CT..  If there is associated pain, then Kidney Stones is the most common cause.  I was sent home with pain pills, and the pain and blood went away for several weeks.  I had two doctors say Kidney Stones...  but when the "stones" were not passing, the Urologist (still saying stones) wanted to see how many and how big they were, he ordered a CT Scan to figure out what treatment I needed.  Needless to say, once that scan was looked at, he had egg on his face and was almost speechless..  However to me, it was a good thing, he gave me 3 days of no worry and more importantly he got me in to Stanford with the best RCC Surgeon in the state.  RCC is still so rare that it goes undiagnosed, current blood tests do not reveal it, nor does any physical exam.  And an X Ray may not find it either.  It usually takes a CT, MRI, and U.S. to find it.

Notice I said current blood tests do not find it... I met a researcher that is trying to come up with a blood test to discover RCC.  This could improve early detection and give much better life results, should she succeed. 

Ron

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

GSRon:  do you think most kidney cancers cause blood, even  microscopic?  I've never had even traces of it.  Mind you, my tumor was 1.3 cm at pathology.  I wonder if it had had a chance to grow undiscovered if I would have eventually had that?  And I'm curious about your opinion on how long i maybe had the cancer? 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Hi Rains.. been reading your posts.. geesh.. you have had your fill... good luck with the next op.  Hard to guess, but once the tumor takes hold of the Kidney, then I would think that there may be microscopic traces of blood in the urine.  That said there can be many causes for that besides RCC.  So to answer your first question, I would guess that yes, sooner or later you would have had blood in the urine. 

As for how long.. gosh.. another difficult question.  I keep reading that RCC "typically" grows at less than 1 CM per year.  I hear the range goes from like 0.5 to 0.8 CM.  But then some types of RCC are more aggressive and some less. At 1.3 my guess would be about 2 years, plus or minus a year.  Perhaps someone else can give more details.

But, you are on your second Cancer, this is unusual and very rare.  I would suggest good follow up, just in case, but then seems you are doing that already.

Again, good luck..!  Keep us posted please...

Ron

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Thanks Ron :).  Hmm, your explanation makes so much sense.  I wonder if my kidney tumor developed as a result of all the radiation I was subjected to in 2012?  I'm also on blood pressure meds including a diurhetic (which has been known to cause kidney cancer!!).  the funny thing is, last Oct 10th (5 days before my OPN) I had a PET scan- it didnt' pick up the kidney cancer, but noted the chest wall tumor that Im now having removed on Friday.  My Rad onc at the time blew off all the findings saying they were normal physiological activity.  That's not what my BS said.  She was pissed that I wasn't referred back to her in Nov for followup.  It was only after my GP ordered my MRI that I was again sent to the BS.  And now I'm having more surgery.

 

After this, Im not sure I want to know about any new cancers and/or recurrences.  I hate the testing, and the stress.  My life has been on hold for 2 years. 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Rains... OK on Pet Scans.. they won't likely pick up a small RCC tumor.. this is why PET is not used for RCC often.  Tumors of 1 CM or smaller just do not show up...  Same with X Ray...  There is a reason some Cancers are called "Clear Cell".. it is harder to see in some types of imaging.

Ron

a_oaklee
Posts: 489
Joined: Nov 2013

My husband had a CT/PET scan prior to surgery.  It showed the RCC mets to his bones (vertebra, shoulder, hip, femur) and one lymph node.  He has clear cell RCC.  Every 3 months he has a CT/PET scan done for the past 2 1/2 years.   It is my understanding that CT/PETS are not used diagnostically to check for tumors in the kidney, but are used to check for metastatic tumors in other locations, definitely bone and lymph nodes.  It is not used for the brain or heart or some internal structures.  MRI's would be used for those areas.  The literature I have read and the personal experience is that a 1/2 cm met can be visible. 

Add:  A technician told us that because the dye/radioactive material is all excreted by the kidneys is the reason why the entire kidney would light up and they wouldn't be able to differentiate something normal from abnormal.  They also said the brain uses so much glucose and that is why the entire brain lights up and it will not show differentiation of a tumor from normal tissue.

I would like to say I'm not a doctor and this is just personal experience, or what has been told to me by docs or techs.

I read in some literature from the American Urological Association that blood in the urine is the "most common" symptom that people with renal tumors present with.  It's probably the most helpful symptom which would make a person seek help and hopefully eventually have a CT scan after they rule out infection.  The other symptoms such as being very tired, or back pain, weight loss are not as helpful to a patient in getting immediate help or help directed at an issue with the kidneys.  For instance, my husbands severe back pain was treated as a strain for months.  Back pain is a nonspecific symptom that wouldn't make a clinician automatically think "kidney".  And the way I figure that's why some people are unfortunate (like us) and get a diagnosis at Stage 4.  RCC is kind of silent.

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

MellieBean,

I'm so sorry for your struggle.  We are here for you. 

Rains something you said stuck with me  "I hate the testing, and the stress.  My life has been on hold for 2 years. "  First let me say in the wineyest voice I know how "I don't wanna ______________, I don't wanna ______________, I dont wanna ____________."  We can all fill in the blanks.  I'm trying to come to grips with all this myself.  So I say this to you, me and us all: How? how? how?  How do we enjoy our new life on a daily basis, without feeling like we are holding our breath till the next scan/test.  I hope this comes across as compassion as it is intended. 

I have an obsessive personality so I have been consumed with info.  My husband said on Friday "can we talk about something besides cancer?" It gave me an "ah ha" moment.  We had the best weekend, we pretended like none of this happened.  Of course Monday we were both slapped in the face with the reality that it is still here.  Another strategy I've been telling myself is "I will put the cancer in a box and take it out later to look at it" Like the day of the next test.  I'm asking for help and suggestions.  I don't want the cancer to rule my life.  It is a part of my life but I don't want it to rule it. 

Big giant hugs to MellieBean,Rains and all you brave survivors.  You are all my heros.

 

Srashedb
Posts: 482
Joined: Dec 2013

mellie:

is there any way you can get scans or some testing done to alleviate your anxiety? My husband did not have fatigue and no blood in his urine. He had pain on his hip that his gp didn't do much with other than physical therapy and Advil for months.

it was only when he demanded an MRI that the cancer showed up. I am obsessive and highly anxious and the long holiday weekend was about the most I could handle. 

I think you are making yourself crazy and it would probably help you to be fully tested so that you could know the worst and then begin whatever treatment is needed.

contact doctors who have renal cancer experience in your area; if there aren't any, be willing to travel some.

Sarah

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Not sure what other tests they will do on me.  My surgery date is for sure August 11th now.  Reading all the above I wanted to note I did have blood in my urine but only seen microscopically. I thought I had a repeat uti right close together. This fatigue has been around a while. It started with my first uti diagnosis and never went away since least August. It's like I described my body just wants to sink I to its self and rest. I am having problems sleeping at night, but on my rough days my body is wanting like 18 hours sleep.  I did read this happens. Read a survivor story where they had alot of fatigue and a bit after surgery they bounced back.

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Mellie:  as annoying and frustrating the fatigue is, keep in mind it's also a GOOD thing (strange huh?).  Your body is fighting the cancer with sleep.  Well known phenomena.  It sucks though!  Despite having a serious illness, we still have to soldier on and continue to hold jobs, raise kids etc.  There just aren't enough hours in the day to get all the rest you need.

 

What I learned from my cancer history is to NOT fight fatigue.  Do not feel guilty about it.  Go sleep when your bod calls for it.  You do yourself no favours by getting run down.  The flip side is you also have to accept a few compromises.  Some of your priorites will have to change. And that's ok!  You need to take care of you now... especially for the little ones in  your life!

 

Cheatinlil:  Oh I so understand what you said! :).  Let me fill in the blanks lol.

 

" I don't wanna do this anymore...wash rinse repeat"

 

I'll admit to secretly hoping I fall through the cracks and no one checks up on me.  I do know this surgery better get it all, cuz I ain't repeatin' it.

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cheatinlil
Posts: 194
Joined: Jun 2014

Rains

 Lather rinse repeat. Lol. That made me laugh.  Thanks for " getting it"

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

And at least now I am not feeling the need to explain myself. I let the fatigue go on for a while before the leg pain drove me back to the doctor.  I kniw I had my husband and a few famiky members wondering about me and wondering why I was wanting to sleep so much.  I felt really guilty at first, then I was like you know what I'm tired I'm gonna sleep. LOL then of course I still felt guilty. Now I don't feel guilty at all since I know why. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I've accepted day time naps as part of the new normal. Sometimes I feel that I can sleep all day. And night. Aw, yes, the "new" normal.

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