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Newly diagnosed - and scared!

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Everyone!

My name is Joan. I am 51 years old and a mom, and wife, and work as a secretary. I have been reading a lot of your posts and I feel like you lovely people are the ones I can tell my story/concerns to....

Back in May I began noticing a lot of discomfort in my stomach. I chalked it up to needing to eat "gluten-free", menopause, gall bladder, etc. Then my mom got really ill and then on July 2 passed away (lung cancer). My summer was engulfed with dealing with grief, so my tummy issues were ignored. By the end of September, I thought it was time to get this looked at. My family doctor retired, so I had a new, young doctor looking after me. He sent me for an ultrasound, and the next day, the nurse called to say they saw that my kidneys were swollen and they were rushing me for a CT scan. A few days later I was at the hospital ready for the CT scan. The receptionist handed me a brown envelope and asked me to give it to the technician. I went to the waiting room - and of course - read what was inside. It said ****Patient does not know. If you need more information, please call the office. Large mass on right kidney. Likely carcinoma". I felt shock for a minute, and texted my husband. He googled and responded that kidney cancer has a high rate of curability. I had the scan and in a couple of days returned to my family doctor. He told me that I had a "cyst" the size of a baseball on my right kidney. He said according to the radiologist's report, it was cancer, but he said "you are so young and otherwise so healthy! I don't think you have cancer." So he referred me to a nephrologist. My friend is a nurse and when I told her this she was puzzled as to why he referred me to that. Several days later I still had not heard about an appointment with the nephrologist. So I called and spoke to the receptionist. I conveyed my concern about the nephrologist vs. urologist. She relayed it to the doctor. The next morning I received a call from the nurse saying the nephrologist reviewed my case and he could not help me. I should see a urologist....a week of waiting time wasted. So another week goes by and I go to see the urologist at the urology clinic. He immediately tells me that he is not the doctor for me but the urologist who does this kind of thing is on vacation, but he looked at my case and he didn't want to wait any longer. He said it is cancer, and my tumor is as large as my kidney! 13 cm. And it is as big around as it is long. He said that given the size, they want to refer me to another specialist - a uro-oncologist - who has a lot more experience with this kind of thing. He has excellent credentials, so I am comfortable with that....but it means more waiting. He said it looks like it hasn't spread anywhere and sent me for a chest xray. I told him that I noticed since July that I have been experiencing edema in my feet and hands. He said my other kidney looks good but he would check my blood test results - only to find that my family doctor forgot to send them my blood test results. So he tried calling but could not get through.

Sorry....this is a lot to read!! I am scared because with this new information (size of tumor) I have been googling a lot and not seeing good things about how size of tumor relates to spreading.

I am trying to be brave - not many tears, trying to reassure my adult children, etc. But deep down I have a bad feeling - the bad feeling only began since my appointment with the urologist.

Any advice??

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

They will likely remove your kidney and confirm the diagnosis. If it is contained to your kidney, you will be monitored to make sure it doesn't spread in the future. You have a good shot at a total cure and no recurrences if its contained to your kidney. I wish you luck!

 

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

Hi Jo,

Everyone here has been in your shoes in one way or another, for me it has been just over four years.  Cancer is a very scary word, but the emotions and fears can work for you or against you, its your choice.  Start working on a take no prisoners attitude right now, attack with extreme prejudice.  You are most likely facing surgery, get prepared for it physically and mentally, you are about to learn that you are much stronger than you thought, you can do this.  You probably will not know very much until the pathology report post surgery when you will learn stage, grade, sub-type, etc. and if it has escaped the confines of your kidney, at that point a plan for what actions are required will be made.  This could be as little as surveillance tests and scans or more aggressive like drugs and trials if needed.  Your tumor is big, but we have had members here with much larger ones that have returned to their "normal" lives, no reason at this point to think that you won't be joining them.  The gang here will support you anyway they can, even if you just need to vent to an understanding ear or need a shoulder to cry on, we're here, so keep us posted.

Good luck and Godspeed,

Gary

icemantoo's picture
icemantoo
Posts: 1470
Joined: Jan 2010

Joan,

 

I agree with garym. This part is not fun for anybody, but you have to have the surgery. We all did. Mine was 11 years ago.  The recovery is not fun either, but it beats  the alternative, Get thru that and follow up with all the scans etc. and anything that comes your way can be conquered, There are medicines and procedures available today taht were not available 5 and 10 years ago to give positive resukts to those of us who start with larger tumors. The important thing is to get it out now so it can not spread.

 

Icemantoo

 

 

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

Jojo, you can and will do this. Most of us have. And if you notice, we are here to tell you about it. My diagnosis and nephrectomy were only a few days apart. No time to worry. I actually don't worry to much because I believe we can recover from almost anything.  I'd suggest you push for surgery and get it done soon. Then think about the long term effects. Lots of options are available. There are several different treatments being recieved by our forum members. You'll find the appropriate one and will be counseling newbies in a few years yourself. It's the club no one wants to join. But here we are.

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Thank you, everyone for your words of support. I feel a little more confident!

 

God bless!

 

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

I know how anxious you must be, waiting for answers.  In fact, waiting was the hardest part for me...even harder than the surgery itself.  My cancer was an incidental finding, in mid May.  My radical nephrectomy was the end of May.  The minute the doctor told me I had a cancerous tumor, I begged him to get it out of me ASAP.  He said his surgery schedule was pretty full...so I cried louder and begged harder...he worked my surgery in.  I was back to working from home within two weeks and back at my office within 5 weeks, which, was no easy feat considering I live in Oklahoma and work in Ohio. 

It certainly sounds like you will be having surgery soon.  You and I are about the same age, so hopefully you'll have a speedy recovery, like I did.  Granted, your tumor is more than double the size mine was, so your surgery may be open vs laparoscopic.  If so, you'll have a longer recovery period. 

Interestingly, I also read my diagnosis.  I was not told about it.  Had I not requested my medical records, I likely would not have known about the cancer until becomming symptomatic.  But, I learned a valuable lesson and, from now on, I will always request my medical records.

You are getting ready to learn just how strong you really are.  I'll keep you in my prayers and am sending positive energy your way.  Keep us posted.

 

 

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Thank you, Twinthings. I think I will have to learn to be more "vocal" about my medical concerns.

Thanks for your input!

Take care!

 

SammySue
Posts: 7
Joined: Nov 2013

Good Luck JoJo.

Listen to twinthings.  They found my mass during a gallbladder ultrasound and the doctor was going to do the gallbladder and did not mention the mass.  Get all your records.

HarleyMom117's picture
HarleyMom117
Posts: 27
Joined: Oct 2013

....since 'welcome' doesn't sound quite right to say on this site!

My name is Terri, I'm 46 and was diagnosed in mid-September.   I had an open radical nephrectomy a month ago (on Oct. 2)

I am very sorry for the run-around you apparently got (and your family doctor really needs an education in kidney tumors).   I had a CT scan on a Friday morning (for a completely unrelated reason) -- and my family PA called me with the news that I had a mass in my left kidney that same afternoon.   He'd already set up my urology appt. for that Monday.   My urologist would have done my surgery that very week, but I had tickets to a Chicago Blackhawks game on Sept. 28, and I wasn't about to let a little thing like cancer keep me from that!  :) 

The good news is, when a kidney tumor is confined to the kidney, surgery is THE treatment -- and no further treatment is required.   I will be praying that this is the case for you -- and will be watching for updates.

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Terri,

Thanks for your words of support.

I have read your other recent post and hope that you are feeling better very quickly.

God Bless!

 

I am alive
Posts: 217
Joined: Jul 2012

Jojo,

   Are there any kidney cancer specialists - we call them RCC (renal cell carcinoma) experts - in your area? Or nearby? That's who you want to see, if you can manage it. Not a generic oncologist. If you want this bugger out ASAP then let the oncologist you have onboard now do the surgery, but do your followup with an RCC specialist if at all possible.Where do you live?  In the States? We can recommend cancer centers near you, and perhaps even doctors. Followup is important. After surgery you will need to know what kind of kidney cancer you have - clear cell is the most common, non-clear cell (of which there are several sub types) is less common. Then you just wait to see if the cancer comes back. Just have regular scans and get on with your life. Yes, you will get nervous around scan time, but you will learn to deal with that. It'll take about a month to recuperate from surgery. Maybe 6 weeks before you feel your old self again. Try to remember that everyone's cancer is different.  At some point you should stop Googling. Your cancer may never return and you don't want to waste any more of your precious life worrying about what "might" happen. And if it comes back, you will deal with it. As others here have said, you are stronger than you can even imagine right now. I had an 11 cm tumor 9 years ago. Four years after my nephrectomy metastases appeared. So I had another surgery. Three years later another met popped up. So I had a bit of radiation. Six months after that a couple of other mets showed thier ugly selves. So I joined a clinical trial. Bottom line: I'm still here. I'm in the game. And I'm happy. Anything can happen.  You know, you probably got a bad feeling with the urologist because your radar picked up that something ontoward was going on. Their complete mishandling of their communication with you is inexcusable. It made a bad situation worse. I wouldn't read anything more into your intuitive feelings than that.

GSRon's picture
GSRon
Posts: 1155
Joined: Jan 2013

JoJo.. welcome to our club.. sorry you need to be here..  One thing this olde guy has learned... let it rip... have a good cry, yell, use all the nasty words...  Heck yes you are scared, just like all of us... but that one good cry will make you feel better than holding it up inside..  I know that once the surgery is over you will breathe a lot easier...  And feel free to holler at us any time you need it... We are here for you... we know your fears.. and we all try to move forward and enjoy every day....

Ron

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

thank you, Ron!

XO

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hello I Am Alive,

I live in Canada....we are fortunate to have most health care costs covered here. However, the downside is there are less doctors here per capita. The wait times are a little longer. I feel like my whole case so far has been a "fall through the cracks" kind of thing. Now this doctor that I am waiting for is a top notch surgeon - not just a urologist. I living in a small city. He is in the closest big city - where there is a cancer clinic that is considered number 1 in the province. This surgeon is also a professor, director of research, and many other criteria attached - which makes him harder to get in to see....but I think worth the wait. I think the urologist is trying to get me the best care possible (even though he boldly said to me ïf it spreads, you are done!" Can you believe that???)  But I called their office yesterday and they said it could be 2 weeks before I hear from the "super specialist".

Everyone here on this forum is amazing - I know already I can count on you guys to see me through this!

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

Hi Joan, I didn't hear any mention of you seeing a surgeon.  I would see if i can kind find (or they recommend) a good urologist who is also a surgeon.  You need to make an appt. and get the surgury scheduled asap. You also should have a whole body/pet ct scan if at all possible, not just xrays. Xrays are not always sensitive enough to pick up things in the lungs. You want to be sure upfront what you are dealing with. Hopefully all will be contained in the kidney with no spread.  Don't rely on what you read on the internet as most information is as old as the hills. There is alot of meds now to deal with this type of cancer and alot also on the horizon.  But the sooner you take this thing out the better! One other thing! No one knows if it is cancer until it is out and biopsied.  And it does happen at times that it is not cancer!  Keep your chin up, be brave and come back here for support! You will get through this fine. We are here with you!  XXOO

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Thanks, AngeC,

I hope to hear that my surgery is soon. I have learned quickly that you guys are the ones to talk to!

 

God bless!

GSRon's picture
GSRon
Posts: 1155
Joined: Jan 2013

Hi Jo Jo... I just re-read your initial post...  You have a large tumor... you need the right Dr, not just any Dr..  Is this surgeon familiar with Kidney Cancer..?  If not you need to find one, period.   Keep calling and keep vigilant..  Sorry I can not sugar coat it, but the surgery will not be fun, but you can and will do it... 

Ron

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Ron,

I am waiting for the uro-oncologist. I will call...I went through this with my mother. The Palliative care doctor dropped her as she seemed to be doing okay....then she got worse - we called and called and called and called. Do you know when he showed up? When she literally took her last breath. (the family doctor - who JUST took over our retired doctor's practice - was the one issuing the care orders for her. But he was very unsure and held back by this palliative care doctor.)

I am sorry if I sound like a victim. Not meant to. And I am a bit unsure exactly WHAT to say when I call and try and get quicker care! Any good lines that you can recommend?

 

 

I am alive
Posts: 217
Joined: Jul 2012

Your blundering urologist said "If it spreads you are done"? I'm sorry, but I have to say it - what an *******. Look, it it spreads it is not curable, that is true (though a tiny percentage of very lucky people do get remission from an IL2 therapy, more on that down the road). We like to view metastatic kidney cancer through the prism of "chronic disease."  Like diabetes or Crohn'sdisease. You manage it. Hot spots pop up and you deal with them. True, there are only a handful of drugs that RCC responds to, but there are more of them than there were 5 years ago, and 5 years from now there will be even more options. Yes, some people's cancers are aggressive and spread quickly. But others don't. It's all kind of a crap shoot. But to label you "done" at the first sign of spread is unconscionable and, frankly, ignorant. (In the broader sense, we're all "done"  the second we take our first breath!) From reading these forums you can see that people can live for years with kidney cancer. Do you know about the SmartPatients.com site? Check it out. Its an excellent source of up-to-the-minute info on the latest clinical trials, drugs, ect. It's another forum like this. I believe there might be a Canada-specific tag there with links to Canadian RCC sites. If you don't see it start a conversation asking about it. Good news that you are near a top cancer hospital, and good news that the oncologist you are waiting to see is so highly regarded. I'm betting that once you put distance between yourself and this idiot urologist you will start feeling a lot more confident about things. 

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

You guys are wealth of information. I like your way of looking at things, I Am Alive. I especially like the idea of looking at metastic kidney cancer like through the prism of chronic disease". Ï find it reassuring.

I will check out that website.

 

Thanks!

 

bcbigb
Posts: 31
Joined: Sep 2013

we both seem to have the same story.friday before sept.long weekend was diagnosed with a kidney tumor 15cm by 8 cm at the age of 51.had cat scan on sept.3, met surgeon on sept.6,and had total removal of kidney ,tumor 14 lymph nodes .the scariest part for me was everything went so fast.at home now recovering and feeling better everyday.hopefully everything goes well and you to can be at home a cancer surviver.

good luck and my prayers are with you.

brian c.

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Brian,

You got worked on very fast! Glad you are feeling better.

You didn't say if you had it done via laperoscopy or open nephrecomy?

Also am curious....prior to your surgery, did you feel discomfort on the opposite side of your tumor? I am feeling discomfort on both sides.

And what were your symptoms for them to find your tumor?

Take care!

Jojo

bcbigb
Posts: 31
Joined: Sep 2013

I had no real symptoms,went in for general physical,thought had problem with prostate. Going to washroom every hour or so,did a ultrasound and found the large tumor.I was lucky unlike yourself they get me in in 2 weeeks,had great doctors.Total naphectamy,tumor ,right kidney and 14 lymph nodes removed.The only symptoms I had were in the week before my surgery,pain in the right side .Nothing on the opposite side.The docter said the pain was because the tumor had grown 2 cm in  a week and a half ,the time from my cat scan to my surgery.The main thing is if you have no blood in your urine or your blood tests come back with nothing out of the norm.Hopefully you get everything resolved with the right docter, I was seeing a urologist and he was great.Looks like we caught everything on time ,but it could have been differentif went in 6 months to a year from now.So make sure you force the issue get in early .

Thinking of you and praying for you.

Brian C

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Brian,

Thanks for your feedback. I am wondering if mine has grown. I also wonder if I notice it more because I am more aware that there is a beast within! lol

But I have to say I am having a lot more discomfort and sometimes actual pain than I did a month ago. I have never had my urine tested either. I told him that I have to pee every hour as well, and he balked at that saying it had nothing to do with the tumor...to cut down on my coffee. He also wasn't too concerned about my edema in my feet.

I didn't realize that a tumor could grow that fast. The urologist I saw insinuated that I have had this for years. Who knows?

I am more convinced to keep on it and try a more direct route to get an appt. with that uro-oncologist.

Take care!

Jojo

 

Babsokl's picture
Babsokl
Posts: 8
Joined: Oct 2013

I will be praying for a quick resolve to your situation. I know that sometimes doctors just don't think about what a patient is going through and forget the humanity of us all. But..not all doctors are that way. I'm 50 and recovery was hard and painful..but I'm one year out and doing better. I still have so e things to improve on..diet and exercises..big am so great flu to be alive and cancer fre. Surgery is what will get this RCC out and hopefully gone from your life! I too lost my mom on July 2. So etimes it seems like things happen all at once! I was diagnosed, surgery last October, huge devastating tornado in Moore, Mom died in July..all in a years span! One thing I will change in the years ahead is to instill in my grandchildren resilience and that life isn't always fair or easy! All we have is our faith, love, family and friends. Nothing else matters! Prayers your way! 

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Hi Babsokl,

Things do seem to happen all at once, don't they....sometimes in a one year span...sometimes in a 5 year span! lol

I am sorry for the loss of your mom. There are so many times I want to just call her! Especially now :(

You are so right, Babsokl! Faith, love, family and friends. Nothing else matters. Thank you for your prayers. I will send some your way as well.

God bless!

 

 

twinthings's picture
twinthings
Posts: 384
Joined: Jun 2013

Brian, first of all, I'm so sorry for the loss of your mom. 

I noticed you made reference to Moore, are you from Oklahoma?  It just so happens, the day I came home from having my nephrectomy, I had to make a run for the storm cellar, as tornadoes tore through the skies all around us.  I sat in that cellar for 4 hours, till the threat was gone.  Mostly because, I knew the challenge I faced getting out and, I knew I could not possibly make it down there a second time, with staples in my belly and in a fair amount of pain.  Granted, the devestation of the Moore tornado just two weeks earlier, still fresh in my mind, played a huge roll in keeping me in that cellar. 

If you are in the OKC area, do you know of an oncologist who specializes in RCC?  I'm having the darndest time finding one.  I see a wonderful urologist at Integris but all he's doing at my 6 month post-op, later this month, is an x-ray of my chest and bloodwork.  The more I read from fellow survivors on this site, the more I come to realize x-rays aren't the standard of care and therefore, aren't sufficient in detecting mets...in my opinion.  I think I will feel better if I see an oncologist.

And you're right, all we have is our faith, love, family and friends.  It's all we need!

Sindy

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hang in there Jojo.

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Thanks Cran!

 

And I want to tell everyone that some of your prayers have been answered! I just got off the phone with my LTD rep from work. There is an  "Oncology Overseer"who I can call and will be in contact with doctors, etc. to move things along for me.  Baby steps. What a relief I am feeling!

I will keep you all posted!

 

 

GSRon's picture
GSRon
Posts: 1155
Joined: Jan 2013

A good start JoJo..!  IF it is RCC, you should know that it typically is very slow growing.  The numbers I keep hearing are less than 1 cm per year.  Some slower than that.. but yet some a lot faster.  The sooner the surgery the better, but a week or two most likely will not make a difference.  Often the true size of a tumor is different than what the scan shows.. I so not know why.. but I hear that.. heck my surgeon said mine was bigger than the scan..!

I know right now your head is spinning... normal.  Just keep vigilant and get the deed done..!

Again, we are all here for you... darn near 24 / 7.

Ron

Jojo61's picture
Jojo61
Posts: 353
Joined: Oct 2013

Thanks, Ron!

I keep learning more and more from you guys!

Take care!

izzycohen
Posts: 64
Joined: Aug 2013

There seems to be some foot-dragging and a lack of people being pro-active on your behalf.  Don't be bashful about "nudging" them into action.

Your tumor is relatively large.  It can be dealt with.  As others have pointed out, surgery, soon, is the first step.

There will be many of us following your progress and praying for your recovery.

 

Izzy

izzycohen
Posts: 64
Joined: Aug 2013

There seems to be some foot-dragging and a lack of people being pro-active on your behalf.  Don't be bashful about "nudging" them into action.

Your tumor is relatively large.  It can be dealt with.  As others have pointed out, surgery, soon, is the first step.

There will be many of us following your progress and praying for your recovery.

 

Izzy

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