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Post surgery - lost/confused

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

I learned about my renal cell kidney cancer on Monday, November 25, 2013. I had experienced symptoms (anemia, fatigue, fever, chills, night sweats, 30lb weight loss, loss of color to skin) over the past year and a half. After several months of blood tests with no change in iron or hemoglobin, my internist referred me to a hematologist/oncologist. The hematologist ran a CT scan and upon meeting for the follow up bone marrow biopsy appointment, informed me that the CT scan showed a large growth within my left kidney. Things moved quickly after that. The surgeons removed the left kidney with sizeable 10.4cm growth and 10 lymph nodes via open radical nephrectomy on December 4, 2013. The cancer cells were deemed grade 3, stage 3, encapsulated in the kidney. After surgery, CT scan, bone scan, and chest x-ray, there has not been a presence of the cancer cells in the chest, bone, or other organs to-date.It's been almost two weeks since surgery and I feel good.  I've got tightness and minor pains in the large incision when I get up, bend, or squat (they cut from navel to the side of my flank, so a good amount of real estate).  So why am I posting?  I am not sure how to feel.  I had felt physically and emotionally terrible for so long, not knowing what was wrong, then all of a sudden I am diagnosed with cancer, treated, and home in a week.  I know I had cancer, and given the aggressiveness, I understand there is a good chance it will be back, but I am having trouble connecting with what I went through.  Has anyone else out there had a similar experience of helplessness followed by speedy diagnosis/treatment?  Right or wrong, I have always had the impression that other survivors knew what they had for some time and had a chance to see it, deal with it, and come to terms before treating it.  I feel like those steps were skipped with me or out of order and I am not sure how to start.  If anyone has thoughts, I would appreciate them.  Thank you.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Joe, 

I am sorry to hear it took so long to get to the root of your health issues. The way you are feeling right now is very normal, you are shell shocked. Such a major life change in a matter of nine days, it is not even like missing a chapter it's like reading from a different book. There may always be a lingering sense of disbelief, it is very hard to come to terms with. So the answer is, no you are definately not alone in this, for many people it is a shock discovery and a speedy operation, with little time to assimilate.  

Try not to over think it, you will slowly get you head around it. I found that working out a positive way to proceed with my life helped a lot. Working on ways to stay healthy ie. change of diet, exercise, lifestyle etc. has helped with my determination to move on and stay motivated.

I am glad to hear the surgery went well and you are making a good recovery, I hope you able to rest until after Christmas? 

 

Djinnie

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Joe,  I was fit, stong, wt. training and running regularly. For years. In one evening began peeing blood with intense pain in march 2011. A couple days later I had my left kidney removed. It took the air out of my sails. Briefly. Thought I would just get over it. 6 months later I was loaded with mets and oncologist said I had maybe 6 months to live. First time I really felt scared. It is now 2 years later and I am going strong. You can too. Learn about all your treatment options and choose your doctor carefully. This is the most consistant theme on this forum. So many of us are prospering. Don't rely on outdated statistics on the internet. We are doing much better than that. Good luck.

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Thanks foxhd. Hearing your response to your situation and follow up situation helped me.  Seems I have to remember that being a cancer survivor does not mean it's over and that I must stay vigilant.  I am hoping to process this all in my mind soon but will stay patient.  Thanks again for sharing.

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Thank you Djinnie.  What you're saying makes sense.  Perhaps I am judging my response too early and need to be more patient in letting my mind and emotions come to terms on their own timeline.  I am supposed to rest until after Christmas before returning to work, but lately I have been feeling like I should fast forward and get back to work (desk job).  To your point, I need to slow down, use this time to rest. Thank you for your helpful thoughts.

twinthings's picture
twinthings
Posts: 399
Joined: Jun 2013

Hi Joe!  I know how hard it is to wrap your head around a cancer diagnosis.  We all do.  Especially when it happens so fast.  I was told on May 16th that I had a malignant 4.7 cm tumor on my right kidney and on May 29th I had a radical nephrectomy, laparoscopic vs open like yours.  Unlike you, I was asymptomatic...I did not lose 30 lbs to kidney cancer...darn it!!  Luckily, I also did not have the fatigue and other symptoms you dealt with.

I think part of the reason I had such a hard time processing a cancer diagnosis, followed by such a quick "cure" is because, my whole life cancer has been associated with death.  I never knew of anyone who had cancer one day and not the next.  I thought it was, if not a death sentance, certainly a life sentance.  Something patients either lived with or died with.  I don't seem to fit into either of those catagories. 

I have of late, been focusing on the positive side effects of cancer.  Surprisingly, there are more than I imagined there could be.  In fact, in many ways, I am finding this to have been a blessing in disguise. 

I hope your healing continues to be uneventful and that you are able to enjoy the holidays!

Sindy

Jojo61's picture
Jojo61
Posts: 365
Joined: Oct 2013

Hi Joe!

What a whirlwind you have been through. Our stories are very similar...except for the 30 lb. weight loss....My tumor was 11.3 cm. I was diagnosed October10, 2013 and got in for surgery on.Monday, December2, 2013. But they sent me to a superstar doctor who could remove it via laparascopy....so I was very fortunate. Just got my staples removed today! I go for my pathology report on Friday. So I had a couple months to think about it and digest it and educate myself about it. I am not sure when I go back to work...I too have a desk job but I work in a very stressful place...and not sure if I can manage it for a while yet. Don't rush it. Open surgery is very traumatic. So now is your time to digest it and educate yourself. Joining this forum was a great start. There is a wealth of information among the members...plus non stop support.

So relax and pamper yourself. You have gone through a tremendous journey in such a short time.

Take care!

Jojo

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Thanks Sindy and Jojo! Sindy, I've taken what you and others said and I am going to be more patient on dealing with what I went through.  I am starting to see what my doctor meant by 'taking it slow.'  Had my first trip outside to do an errand and whoa was I exhausted after a half hour of walking around.  Jojo, to your point, my work demands will have to wait.  It sounds like you should definitely make the most of the time you have off from work.  Congrats on the stapel removal and good luck on the pathology report on Friday.  I should have my official results back tomorrow as well. 

In a short amount of time I have seen what this site can do to help people.  Thank you all for reaching out and helping me see things a bit more clearly.

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

Hi, Joe -- I'm Terri.   I had an open radical nephrectomy on Oct. 2 to remove my left kidney and the 4cm cubed tumor within.   Prior to that, I was a healthy 46-year-old female non-smoker with no symptoms or history whatsoever, and (like many), my cancer was found by accident.    My surgery took place 10 days after diagnosis (it would have been a week earlier -- but I had tickets to my first Blackhawks game in 15 years, & I wasn't letting cancer take that from me!!)

I, too, felt what others have (rightly) called 'shell shock'.   Initally, when word of my condition spread among family & friends, I was almost embarrassed by the outpouring of concern I experienced.  After all, this wasn't REALLY cancer -- cancer is months of chemo & radiation, cancer is hair loss, cancer is being horribly sick -- you don't have cancer one day, and then not have it the next.    Yet I still had to reconcile my less-than-normal (in my mind) experience with the fact that it is, indeed, the very scary thing called CANCER.   Now, 2 months post-op, I am better than I was, though still have not completely come to terms with the newest addition to my medical history (though I did have a good cry last week when the local blood bank called to ask me to donate.  I was only 2 donations away from completing my 12th gallon at the time of my diagnosis.  I still don't know if I will ever be able to donate again -- I've been afraid to ask the question).

Well....I apologize for my rambling (I write like I talk -- which is quite sad for my friends and family Laughing).   I hope something I've said has helped you a little.   Please keep us posted on your recovery and on your continued treatment -- I've found this site to be an incredibly supportive community, and a great place to ask questions!  I am so grateful for the help and guidance I've gotten!   You will be in my prayers.

Terri

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Terri, 

I am glad to hear you are doing better, as you say it takes time and an inordinate amount of patience! I have a feeling you may not be allowed to donate, I know that I can't here in France. When I had cancer the first time ten years ago, I was living in Texas and they would not allow me to donate there. Mind you! I discovered I was disqualified in the USA anyway because I came from the UK, we Europeans are all considered to be carriers of Mad Cow Disease, because of the tainted meat back in the 1980's. That was a bit of a shock as it wasn't something I had come across before!

 

Djinnie

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Couldn't have summed it up better myself Terri.  Nice to meet you.  Kind of funny to hear so many people with the same experience..., not knowing we had something or not experiencing the 'traditional' cancer experience as we used to know it. Though it makes me feel normal to have a similar experience.

So happy to hear your post op experience has been positive.  I hopeful of a final diagnosis from pathology myself.  I'm looking at things in terms of goals.  Next on the plate is getting longer walks in outside and errands as well as getting off pain meds.  Then, perhaps yoga, stretches.  Maybe back to the gym for crossfit.  Seems a long process but it really keeps me positive to make the little goals.  Now I'm rambling...! :)

I had not thought about not being permitted to donate blood.  That is a bummer as I enjoyed giving. Well, each day I'm learning something new about what to expect.  It's an adventure.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Hi Joe, and I'm sorry to tell you Welcome to the Club.  I had about 2 weeks from ultrasound for possible gallbladder problems (which I would have happily taken!) til I had robotic assisted Laporascopic removal of my right kidney.  Chromophobe. 6.7 cm with invasion to the renal vein and the sinus fat.  Stage 3a grade 2.  Took me the entire two weeks to get my head wrapped around it.  Cancer hit my family hard in 2012-13...sister died of small cell lung cancer in Sept '12, her grandson, my great nephew (8yrs old) was diagnosed with Burkett's Lymphoma, then me in April, 2013 right after nephew was declared in remission, so this knocked me for a BIG loop.

you will adjust to your new normal and will get your strength back.  You'll also get on a first name basis with doctors and scan techs really fast! LOL. What I don't understand is why the men are always the ones who get to lose the weight?!?!  

Stay with us and we'll all learn from each other.  We are all here and we all get scared at times and we prop each other up when needed.  There's lots of good information on here.  Oh, one thing my family dr. told me was "walk as far as you can comfortably, then the next day, walk that far again and add 10 steps, next day walk to the +10, and add ten more steps, and do that every day.  Twice a day if you can.  You will build yourself up at a pace that won't keep you fatigued."  Good advice!  Drink lots of water, cut out most of the salt,  eat good healthy fresh foods, and cut down on the protein.

glad to have you here...don't push yourself too hard...your body has been through MAJOR trauma, and even after the outside incision heals, the inside is still a battle ravaged field.

roseblack
Posts: 1
Joined: Dec 2013

I'm not sure if I'm supposed to write on here, since I am not the patient. But Joe, your story just jumped out at me. I am so sorry for all you are going through! I can totally relate to the shell shock, but from a different perspective.

Unlike you, my husband had no symptoms of kidney cancer. He fell off the ladder while cleaning gutters in October, and a mass was discovered in one of the scans they performed at the hospital. Long story short, he wound up having a radical nephrectomy, if I got that right, which included removing the left kidney, spleen, adrenal gland, lymph nodes and a nodule on the pancreas. The nodule was also kidney cancer. Nothing in the lymph nodes, but we were told it could spread through the bloodstream.

The surgery was on Nov. 15, and was done with laproscopically with a robot. My husband is just starting to feel better.

So we have a few different appointments with oncologists coming up - a local doctor recommended by primary physician, and we are also scheduling a visit to MD Anderson.

It sounds like you don't need further treatment at this time? I would be curious how others on this forum decided on which oncologist to choose. This is all so overwhelming.

You and all the other survivors on this discussion board are in my prayers. 

 

icemantoo's picture
icemantoo
Posts: 1509
Joined: Jan 2010

Rose,

 

Caregivers are welcome here with open arms. Having this happen to a spouse is what separates the men fron the boys or whatever.

 

Most of us men are good caregivers too, like the pain we go thru when are wives have the babies.

 

In 6 weeks he should be back to normal.

 

Good luck on the scans

 

 

Icemantoo

Joe C's picture
Joe C
Posts: 11
Joined: Dec 2013

Hi Rose,

Thank you for reaching out!  These boards are your second home to feel, share, and learn. You have as much right to talk on these boards as me and anyone else.  The more sharing from you, the better off we all are as the magic of these boards is fueled by interactions. :)

I am sorry to hear about your husband but it sounds like reovery is going well and I'm sure he couldn't have gotten there without you. I think spouses are harder hit than the survivor. I really felt for my wife, watching me go through the pains and challenges because it was all out of her control. She didn't have to say it, but i could see the feeling of helplessness in her eyes. As a survivor, I have to say that all of the little things, like adjusting a pillow, were mountainous feats in my mind and I would not be at such a positive place without her attention.  A spouse and a survivor are equals in this adventure.  We experience different perspectives and challenges but we are on the same journey together (a good thing to remember if you question your permission to post in the future).

To answer your question.  I kind of fell into the right oncologist.  I'm 35 and my wife's friend (a nurse at Northwestern in Chicago) saw the symptoms progression and guided me to her hospital with some urgency. Given so much happens so quickly you can kind of feel rushed into an oncologist to take care of the emergency.  I think you are doing the right thing by having multiple interviews with oncologists and getting the feel for the right type of person and approach for your husband. Personality matters as I quickly learned this will be a long term relationship.  I would also consider the strength of the institution they work in (strong technology, research, availability of other specialists). 

Regarding my further treatment.... I just received good news from my oncologist yesterday evening. My pathology reports came back and I was given a T2b, N0 which means it's a stage 2, being > 7cm (mine was 10.4cm) and limited to the kidney with no metastases ("mets") in the 10 lymph notes they pulled. The cancer is an aggressive grade 3 so it was/is a great boost to hear it was contained and in stage 2.  I just received the vm, so I had to shout out this news somewhere! :)  I still need to go in every three months for scans, blood, urine tests, but I'm pretty psyched about that!

I've only been on the boards for a week, I'm a newbie, but I became confused real quick by all of the terminology used.  You'll see survivors use some terminology on the boards.  Not sure if this will help you or if you need it, but the link below helps educate on renal cell classifications.

http://www.cancer.gov/cancertopics/pdq/treatment/renalcell/HealthProfessional/page3

Thanks again for reaching out!  Good luck on the oncologist meetings and let us know how they go.

Joe

donna_lee's picture
donna_lee
Posts: 398
Joined: Feb 2009

First you are on a plane ride...then someone kicks you out the door at altitude...you're in free fall...then you grasp and find a cord to open a parachute (surgery)...then you land, but it's on an island...oops, it's not inhabited.  But you are a survivor!!!

Remember the word survivor; it will give you the hope that things will get better.  No one said it will be easy being a survivor, and we all have our stories of the low/bad parts.

Some things you can and should do for yourself: become informed about the disease from reliable sources, be your own medical advocate, ask the oncologist for explanations, get a copy of every set of labs and test results.  If you don't understand them, ask what they mean.  Use the internet to obtain basic definitions of lab results and terminology.

Don't keep your feelings bottled up.  Share with family and close friends if you can.  Participate in a Support Group, which increases survivabilty by 25%.  Hospitals, Doctors, Hospice groups, churches, community education, etc. may sponsor one nearby.  Exercise and healthy eating should be high on your list.  Many people turn to religion or spirituality, but that is your choice.

I started on my plane ride 7 1/2 years ago thinking I might have a gall stone; and was told I had Stage IV Kidney cancer with 5-7 months to live.  My response after the shock wore off, was bull s...., I'm not ready to die.

We need you to keep on surviving and totally skew the rates that the oncologists use.  You can and will be a survivor.

Donna

Eims's picture
Eims
Posts: 414
Joined: Feb 2013

wow joe that is good news well if it can ever be good news!!  just take it easy and listen to your body....i had my nephrectomy nearly a year ago and i still struggle a bit but hey i can deal with that and you will too......have a wonderful christmas and here's to a happy and healthy new year....

eims x

Srashedb
Posts: 177
Joined: Dec 2013

Rose: I am also not a patient but my husband is; his kidney cancer diagnosis was made 7 months after complaining of flank pain. When an MRI was done, a large mass showed on his right kidney as well as two mets on his spine.

He was diagnosed in July and went through spinal surgery, a 16- day small bowel obstruction, 10 radiation treatments to the surgical area and 6 sessions of cyber knife to the other met.

25 pounds lighter, he had a radical nephrectomy in September with clean scans in late November; the tumor was 10 cm, grade 2.

these last months are a blur and occasionally, I relive parts of them with some form of post traumatic stress; a spouse is welcome since we caretake and get useful information for our patients so welcome!

this is a really nice group.

Sarah

twinthings's picture
twinthings
Posts: 399
Joined: Jun 2013

Sarah and Rose, kudos to you both! 

I can honestly say, I'd rather be the patient/survivor than the spouse/caretaker of one.  Each time I saw the helplessness in my husband's face, it broke me.  I do not doubt for a split-second that he was every bit as scared as I was, maybe more.  He has so lovingly lived up to the vows he made to me 32 years ago, to cherish and protect me, but he couldn't protect me from cancer and that weighed very heavy on him.   Cancer happened to us, not just me.  I bear the physical scars but the emotional scars, we share.

You caretakers are, in large part, why we patients become survivors! 

God Bless you and have a Merry Christmas!

 

Sindy

 

Eims's picture
Eims
Posts: 414
Joined: Feb 2013

roseblack where would we be without our caregivers......

eims x

Rugbyfire44's picture
Rugbyfire44
Posts: 7
Joined: Jan 2014

Hey Joe, I can so relate to your story (I sound like my daughter). I had no symptoms, found a 4 cm "cyst" on my left kidney while checking for a kidney stone. I was sent to a surgeon who in about 5 minutes told me I had a tumor, high probability of cancer, and wanted to schedule surgery to remove my kidney, AND said we should do it within the month. WHAM, just like that. Did the right thing, seeked a second opinion which was same as the first. Surgery was on November 18th. Now I am feeling great, going back to work on January 11th and everything is back to normal. I am now a cancer survivor! WHAT? No chemo, no radiation, I never felt bad to begin with. Cancer Survivor, WHAT? How is that possible? All in less than two months. As I sit here and write this I am still in disbelief. What just happened? I know that things will be different in the future, But now I am confused, Am I lucky or unlucky? Every day I will give you a different answer.

All I can tell you is this: My girlfriend works as a Nurse on the Oncology floor of a local, major Childrens Hospital. Whenever she tells me the stories of what these kids are going through, I feel like my experience was a minor blip on the radar. So for today anyways, I am an extremely lucky man.

Good luck Joe, and thank you for sharing your story, good to know that others have had the same feelings.

todd121
Posts: 557
Joined: Dec 2012

My experience was similar to yours, but I had even fewer symptoms than you had. A week before Thanksgiving in 2012, I started having some blood in my urine. At first, no pain. However, the blood was visible and it scared me. I was on a business trip at our company headquarters in Santa Clara, Ca. I went to a critical care doc at night. They did blood work, and checked my temperature. She was thinking UTI, but that didn't seem to fit. She started thinking STD and gave me a real third degree on my sexual adventures (which were really non-existent, haha). She prescribed an antibiotic for UTI and sent me on my way.

The next day, I started getting pain on my right side that felt like a kidney stone. I had had those before so I knew what it was like. It got so bad, that I thought I was going to have to have an ambulance come to my work and get me. I had been talking to my uncle, who is an oncologist coincidentally, by telephone for a couple of days about what was going on with me. A friend drove me to the ER and the doc there decided to do a CT "just in case". I had him convinced it was a stone also. I passed a couple of blood clots while I was in the ER and the pain went away. Within an hour or two waiting in the ER, I had the result. I had a 6.9 cm mass in my right kidney, probably cancer. I was alone in another city far from home. It was quite a shock. I went back to my hotel room that night and I think the shock was almost worse than any physical problem I was having at that point.

I got back to my home the weekend before Thanksgiving and started trying to find someone who I could see quickly to get it taken care of. I ended up reaching the head of urology at UCI in Irvine, Ca and got a consultation set up that week. Another CT was ordered, this time with contrast. Surgery was scheduled for December 10th, 2012. At that point I was thinking it was Stage 1. Because of the location of the tumor, I had to have a radical (the tumor was in the center of the kidney). It was done laproscopically, but I had a good 6" incision across my belly (and 3-4 smaller ones). I didn't get the pathology result back until after Christmas. It turned out to be Stage 3 because the tumor had gotten into some of the small blood vessels and it was Grade 3, aggressive.

Because of this, I really wanted to do an adjuvant therapy. I found 2 local RCC experts in nearby hospitals at the City of Hope and Cedars Sinai, and both put my chances of recurrence at 40% or even 50%. I entered the Everest program late last January and am just about finishing up 1 year on Everolimus.

Honestly, I'm still reeling emotionally from the shock of having cancer. It comes and goes. It's not as bad as it used to be, but I'm still looking over my shoulder expecting the other shoe to drop. I know it's not good for me, but I can't help it. It was just such an unexpected thing to happen, and now that I know I have a high chance of it happening again, I just expect it to happen.

My family moved on a long time ago, but I didn't. And that's one of the sore points with me....They haven't had a problem to let it go and stop worrying about it. But I do. I would say I'm a slight hypochondriac now. I pay a lot of attention to health issues, and any little thing that goes wrong, I start to think cancer first.

I healed up pretty well. I only took 6 weeks off work. The surgeon did an outstanding job. My only gripe was he got the staging wrong and I wish he'd told me staging based on imaging isn't accurate, and he also way underestimated my chances of it coming back. He declared me "healed". In fact, he might be right and I hope he is. I do appreciate the great job he did.

I try to keep up with what's going on in the RCC world by reading here off and on. I go to the RCC support group at Cedars Sinai, which has monthly meetings and talks on what's going on and I go to a cancer survivors support group. I'm trying to work on diet and exercise, but have always struggled with my weight and continue to do so.

So, I can relate to your feelings. I was completely healthy when my cancer was found. I had no health problems at all, other than being a little too heavy (220 and I'm 5' 8"), I was in great health. It was very sudden.

I think posting/talking about it helps. Get to some groups if you can. I connected with an RCC patient last year who had had his kidney removed and we've become friends. We have lunch every couple of weeks and check in. We understand each other. I think it's hard to expect others to understand what we are going through.

Best wishes to you.

Todd

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Hi Joe!  So sorry you've been added to this list but glad to hear your surgery went so well!  I had the same situation as you two years ago...next week will be the two year anniversary of my surgery.  I understand exactly how you are feeling... it happens so fast once they find it and you get caught up in the whirlwind of surgery and coming to grips with the fact that you actually have cancer... and then after surgery the real emotions hit.  It's still hard to believe 2 years later that I had cancer.  I sometimes wonder why me?  Why did I have cancer and why did I survive when so many I know have not... those feelings are natural, I suppose, but never seem to go away.  I am thankful every day for the simple gift of life and for being able to see my son grow up.  I try not to get bogged down with the feeling that it might come back.  Not sure what your doctors are telling you but from what I've read and seen the risk of recurrence is pretty small and most importantly, now you will be vigilant about it for the rest of your life so if it does return you can hopefully get ahead of it early and beat this thing if it ever rears its ugly head again!  I will have my big scans next week at the 2 year mark and will hopefully still be cancer free.  You are just at the beginning but it is a beginning to be grateful for... this support group was very helpful to me 2 years ago and I hope it can be for you as well.  If you need any advice or if you need to talk/vent/cry/laugh... feel free to look me up anytime!

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