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I might quite possibly be joining this group on life's journey with kidney cancer.

cjm11
Posts: 11
Joined: Jun 2013

Hi. My name is Carolyn and the last 5 days have made me search for info on kidney cancer.  I went to the doctor last Thursday for left sided pain that wouldn't go away.  I didn't know if it was colon pain or kidney pain.  I have had left kidney stones and UTI's in the past.  The doctor sent me for an ultrasound the next day.  About 15 minutes after I got home from that the doctor called.  Never have I had that happen after a test before.  I knew something was up.  Turns out the US showed a 2.5 cm complex mass with thick septation.  Radiologist recommended CT with and without contrast for further assessment.  This morning I had the CT done.  Again, about an hour after I got home the doctor called.  The CT showed a solid mass which was concerning.  I don't have a copy of that report yet, just what the dr. said.  I am scheduled to see a urologist who specializes in kidney cancer on Monday.

I've done some research and am adjusting to the fact that I probably have RCC and will need at least a partial nephrectomy.  I guess I feel that until I know for sure, what can I do.  You know the Serenity Prayer, "God grant me the serenity to accept the things I cannot change, The courage to change the things I can and the wisdom to know the difference."  If I do have cancer, I know I can't change it.  I have to accept it and deal with it. 

What scares me most is that I have a wonderful 16-year-old girl that doesn't know any of this yet.  She knows I have to see a urologist, but I was in the hospital a few years ago with a bad kidney infection and stone which required a stent and later lithotripsy.  She just figures more of the same, I guess.  My husband is being supportive, but doesn't really know much about how to handle what is going on.  As I was a medical assistant years ago, I am familiar with the practice of medicine and have always had to deal with medical issues on my own. 

I found this forum and am so glad.  I also suffer from depression and have a short attention span, but I have read a few posts and it seems like this is a great place to get and give support.  What is everyone's opinion on my test results?  I'm not totally freaking out yet, but am very concerned I will lose it if I am diagnosed with cancer.  I'm thinking since it is small it could possibly be removed totally with surgery.  Then I read a post that even though it is small, it could still have invaded the veins, which makes it a worse diagnosis.  I feel good that it can be totally removed, but if it does metasisize, radiation and chemo won't help.  Then I come to this site and apparently there are some targeted drugs that can help. 

I guess I'm just confused and anxious to find out what I am dealing with.  Like I read, waiting is the worse part. Anyway, I just wanted to say hey and tell you my story as I really don't have anyone else to talk to that has had to deal with something like this.   

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

Firstly, I'm sorry you've had to join us here, but also welcome you and send good wishes.

 

Secondly, your situation is very similar to mine-except your doctor sounds excellent and is taking it seriously.  Not that you should feel or act rushed planning such a big surgery.  I'm impressed she phoned you right away.  Most doctors do not.  I've been waiting 10 days for my Urologist to call about my failed kidney biopsy last week.  The radiologist swore he'd phone my Dr right away, and have him call me.  Well, nope, hasn't happened.  And my appt for this past Monday was cancelled because he's out of town.  So I wait.  Feel relieved they're all over this, and doing the right steps.

icemantoo's picture
icemantoo
Posts: 1549
Joined: Jan 2010

Cjm11,

 

L. You probably have RCC.

 

2. You will probably have some not so fun surgerrry soon.

 

3, At 2,5cm it is doughtful that anything has spread and you should have a full recovery from the surgery akone.

 

$. At 2,5 cm the chance of recurrance is very low. You should at least be at the high school graduation of the grandchildren who will come along in another 10 years or so.

 

6. Being told you have Kidney Cancer and  that you are going to have major surgery is not fun. It was not fun when I was diagnosed 11 years ago.

 

7. You will become a member of our club which nobody asks to join.

 

8. You will fight back and kick that Cancer on its ass.

 

Icemantoo

Galrim's picture
Galrim
Posts: 274
Joined: Apr 2013

...frame it and hang it on the wall. Other than that I can only add that Im sorry to hear that you most likely will be joining our little club here. However, as those goes you will find this a caring and supporting one :-)

/G

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

Hi Carolyn,

Welcome to the club.  You are on an emotional roller coaster right about now, and that is normal, this is a great place to come with questions or if you just need to vent to an understanding ear.  At 2.5cm (about 1 inch) yours is very small and caught very early, it may not feel like it, but you've won the lottery and the prize is a long life.  You are right, in the unlikely event that it has spread there are therapies available today that were not around just a few years ago and more are in the works.  Keep us posted, we'll help any way we can.

Good luck and Godspeed,

Gary

MG1957
Posts: 8
Joined: May 2013

I am new to this board also and have found it to be the most helpful. I floated around a few months trying to find a place that I felt comfortable.  The main thing that I want to say is Don't Panic!  We did when we first got my husband's diagnosis in early Feb of this year.  His tumor was 12cm x 12cm x 11cm, had invaded the vein, adrenal gland, fatty tissue, metastasized to both lungs and some bones.  We freaked out.  In fact, we are taking our entire extended family on vacation the end of this month for what we believed might be the last time we would all be together.  This is a joke on ourselves that we are okay with laughing about, because we no longer feel that way.  Rather than coming to sites such as this and listening to people who were and had been dealing with RCC, I ended up at statistical sites.  I now understand that many of those statistics are outdated primarily because of the advances in treatment for RCC.  We went from thinking death is right around the corner to being uplifted by story after story of individuals who were leading long, productive lives.  We were initially stuck on quality of life versus no treatment, not really understanding we didn't have just those two options. As the caregiver, rather than the patient, I had a complete attitude adjustment when I read somewhere that RCC needs to be viewed almost as a chronic illness, rather than cancer.  When I explained that to my kids and grandkids using diabetes as my example and insulin injections as the example for treatment, we could see them visibly settle down, too.  I would never have believed 4 months ago that life would be going back to normal, a different "normal" but normal nonetheless.  I, too, have struggled with depression in the past and a "relapse" of sorts was a concern of mine.  I have done fine.  I understand I am the caregiver, rather than the patient, but you will find family will be worrying about you and you will be worrying about them; who is to say who frets more.  Finding people to talk to will bring you comfort and encouragement, especially when they can relate to what you are going through.  I hope this brings you a bit of peace of mind.  

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

its a no brainer, much harder on the caregivers, hands down.  Sure we have to deal with the physical side of treatment, but that actually makes the emotional side a little easier because we have something else to occupy our brains, not to mention pain meds, and we get to whine as needed because its expected.  You on the other hand are dealing with unimpaired emotions magnified by the fear of losing a loved one and the importance of keeping a brave front crying alone most of the time, I am in awe of caregivers and what they are able to do.  You pick us up when we're down, carry us when we're weak, and care for us when we can't care for ourselves.  GOD BLESS YOU!!!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I am sorry for the necessity to welcome you to this very select club, but very glad you found us.  I have an appointment with my priomary care doc this morning, but I'll be back.  We share some important characteristics and I really want to visit with you.  I am three weeks out after surgery and I can tell you, if you do half as well as I did, you'll be marvelous!

Hang in there.  There is lots and lots of life after diagnosis!

Michael

cjm11
Posts: 11
Joined: Jun 2013

I appreciate each and every post.  This seems to be the place to be.  I'm going to be looking around this site more as I can.  You all have given me hope and the realization that the end is not just around the corner.  I will live to see my daughter graduate, marry and have kids.  I am also very fortunate that so far my medical care is great.  I have a place to go  where people understand when others don't. 

I'm sorry that some of you have had poor care, more  progression of this disease and loved ones that are suffering.  I would respond to each of you personally, but I just can't focus that long.  Please know that each of you are in my prayers.  I am not religous, but spiritual.  I hope that offering prayers doesn't offend anyone as I know we each may believe in a different higher power.  

Thank you for welcoming me into this elite club.  Smile   Sorry we had to meet under such circumstances.

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

I wish I could be of help in telling your daughter.  For some reason I didn't have that much trouble with my boys but I totally messed up with the daughter.  She is in College and was in Africa doing nursing clinical in Tanzania.  My tumor was a great deal larger then yours and my prognosis isn't that great but at the time I thought I could keep it from her until she got home about 6 weeks after scheduled surgery.  Although I told almost no one, within 2 weeks after my diagnosis I realized this was a good chance she was going to hear it from someone else..........even half way around the world.  I set up a skype and just screwed it all up.  Should have told her straight up.  I wish there was an alternative but that's what I would have done if I had a do over.

cjm11
Posts: 11
Joined: Jun 2013

Husband and daughter and I were in the car earlier.  Today was the last day of school and I told hubby to wait until exams and school was over.  I mentioned to her again that I had a dr appt on Monday.  Dad said I will probably have to have surgery also.  He said there was something in my kidney that didn't look good and they probably would take it out to see what it was.  She asked if it was something bad and I said until it is actually out we won't know for sure but that was a possibility.  I told her not worry cause we don't know anything yet.  I hope letting it sink in a bit at a  time will help her adjust better. It's just the three of us and we are all really close.  She also seems more mature because she is an only child.  I think it will all depend on how I handle this as to how she handles it. 

Don, sorry to hear your prognosis isn't that great.  Don't give up, you never know what is in store for you.  If God brings you to it, he will bring you through it.  My prayers to you and your family.

  

Suekub's picture
Suekub
Posts: 118
Joined: Apr 2013

I am the mother of a 16 year old daughter and also had and continue to have a problem in telling my daughter about what is happening to me. It makes it even more difficult as we lost her father 2 years ago to melanoma. It really is too much for a kid to endure. I had a radical nephrectomy 2 years ago (cancer was diagnosed 16 days after my husband died) and had no further indication of disease until recently when a lytic lesion was found on my L1 vertabrae. I also have a mass on my thyroid for which I will have surgery in July 4. My daughter knows all about the lesions. So far I haven't been ill apart from the recovery from initial surgery so difficult to identify with the seriousness of it all. 

I wish you well. I have had very dark moments but have become more positive after joining this site and reading about all the great stories of outcomes of various treatments available. I am not yet ready to throw in the towel.

Sue

 

 

cjm11
Posts: 11
Joined: Jun 2013

Hey again.  Looking for any additional input you all may have from the CT scan results.

 

Findings:  1) There is a complex mass involving the upper pole of the right kidney with sigificant enhancement as well as low attenuation probable necrotic areas.  This was not seen on any of the previous exams and measures 3.4x2.8x2.9  cm.  This is most likely a renal cell carcinoma. 

2) There is an abnormal upper pole left renal mass anteriorly which is exophytic and high attenuation on the unenhanced and enhanced images measuring 19.7x13.8x16.2 mm.  This was seen back in 2007 and has not shown significant change in size.  This may be a complex cyst or proteinaceous cyst. 

3) There are very tiny right-sided retroperitoneal lymph nodes at the level of the right kidney.  The largest node is an anterior aortocaval node measuring 9.4x7.2 mm.  This node was present in 2009 and 2007 and is stable in size.

4)  I do not see evidence of any sclerotic or lytic skeletal metastases.

Impression:  repeats the above and also adds:  Recommend bilateral renal MRI without and with contrast. 

Does it seem to have spread to the left nodes?  Does this help differentiate between open or laproscopic nephrectomy or partial nephrectomy?  I am adjusting to the fact that I most likely have cancer.  Now I'm anxious to see the stage and what type of surgery I will need to have.  I respect everyone's knowledge and look forward to hearing your opinions.  Thanks!

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

PS.  I had seversl enlarged lymph nodes but they were not cancerous.  I tried to listen to the explanation as best I could and it seem that lymph nodes need cancer get pissed and inflamed sometimes.  My tumor was 11CM by 9 CM by 9 CM with sinus and vascular invasion.........but my nodes were clear and that was last September and I still here and feel fine.

 

cjm11
Posts: 11
Joined: Jun 2013

Was your cancer found incidentally or did you have symptoms?  Are you on any meds for it?  Glad to hear you are feeling fine.  To me, that's a good sign.

 

DonMiller's picture
DonMiller
Posts: 96
Joined: Feb 2013

Totally incidentally.  I had a herniated disk with I ignored for many years.  Last summer it really started to hurt so I decided it was time to breakdown and go to the orthopod and have it taken care of.  I knew when he called me on the phone at 10.00PM 3 days later I was screwed…but I had never even really heard of kidney cancer.  Frankly I wasn’t really sure what a kidney even did.  I still find it difficult to accept I had a massive tumor without symptoms.

Although my tumor was large it was removed laproscopicly and I recovered quickly from the surgery.  The pathology report was depressing because my tumor was of high grade and had invaded sinus fat and the muscular branch of the renal vein. 

My  mistake was not seeing an oncologist before the surgery. I might know a great deal about Property and Family Law, but I know nothing about medicine.  My urologist never suggested it and I never considered it.  I lost the opportunity to take part in a clinical trial but I am not certain I would have made the decision to participate.   In any case I am now under the supervision of an oncologist.  My next set of scans will be on July 10th.   I am not exactly sure how to phrase this…….although I have great confidence in my urologist as a surgeon , did not have the same confidence in her as a Doctor.  I do think is a good idea under any circumstances to check in with an oncologist as soon as possible.

 

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Carolyn,

Am so glad you found the group.  You are going through a difficult time: trying to piece the information together and make sense of it.  I found the "We have Kidney Cancer" document from KCA very good at explaining things in a way that I could digest.  You can download it free from

https://secure.kidneycancer.org/np/clients/kca/product.jsp;jsessionid=0F94A970FE5338D1ECB27C8A5CAA1896?product=23

Like Don said, a lot of us have had much larger tumors and are getting on with life.  I'll tell you one thing, going through this makes you appreciate each day of life all that much more.  We look forward to having you join us on your journey.

John

cjm11
Posts: 11
Joined: Jun 2013

Sue, thank you for sharing.  My what the last few years have dealt you.  I'm so sorry to hear about your husband and then to be diagnosed so soon after.  I'm sure your daughter is also going through a lot with all of this too.  I found that sometimes teens will hold things in and think they are more mature than they really are.  Just make sure your daughter knows you love her and  she can always come to you to talk about her feelings no matter what they are.  Does she have a counselor at school or elsewhere where she can talk to about things she feels she can't talk to you about.  My daughter does since I have depression and it has helped her tremendously. 

Prayers for you and your daughter.

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