Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Radical Nephrectomy - I'm Trying To Stay Optimistic

Louisp
Louisp Member Posts: 13

Hello from Vancouver, BC! I've been following many of your discussions, challenges, victories, and the community at this site is amazing. A 5cm tumour was recently discovered on left kidney a few months ago. After a follow-up test, the urologist concluded that it's growing and a radical nephrectomy to remove the entire kidney is required. The doctor is very optimistic that I will have a stable recovery since I'm 39, in good health, don't smoke, and not overweight. The doctor has emphasized that we will not know for sure that it's cancer until it is out of the body where the cells can be examined. 

After the initial shock, I could not help but fall into this state of depression and think about all of the bad things that could happen. I think about the chances of the cancer coming back or manifesting somewhere else in my body. I know there are several reasons for me to be positive and thankful that it was discovered early. I try not to think of this as the first stage of a death sentence. I have scheduled a follow-up visit with my urologist today to ask more questions about my condition.

This is my first surgery and my first time in the hospital. I read stories on the internet but there seems to be so much variation with unique circumstances. I have overcome other challenges in my life where the odds against me were much higher. I know that I can't give up and let the cancer win but it's really hard sometimes. I am grateful for the support that all of you provide so that we don't have to go through this struggle alone. 

Please pray for me as I will be praying for you. 

Comments

  • Jan4you
    Jan4you Member Posts: 1,327
    Welcome Louis~Sorry for what

    Welcome Louis~Sorry for what you are going  through. However, you've come to the right place for information and support!

    I wonder if you need a radical nephrectomy given the size of your tumor is uner 7cm. I believe you are in Stage I if there are no other issues surrounding that tumor. Mine was only 4cm but near a blood supply and could've bled out so the whole kidney had to be removed.

    Does your urologist/surgeon do robatic surgery, laproscopic incisions, vs open which is a larger incision? If not,I would get a 2nd opinion and find out if you can get a surgeon who does robatic surgery and to find out if you need a radical removal of kidney or a partial. That is just my two cents.

    I have had several abdominal surgeries and two were laproscopic/robatic. It is much less invasive and easier recovery. I also used a lumbar velcro wrap used for lower back issues, to wrap around my healing abdomen. It made a big difference trust me. I also put dry ice blocks over the larger of the small incisions to reduce the swelling and that really worked for me. I was able to be  off Opioids much sooner.

    We'll help you  through this time if you want us too,  Louis.

    Now find out if  you HAVE to have a radical vs a partial and robatic vs open incision.

    Hugs, Jan

  • Footstomper
    Footstomper Member Posts: 1,237
    edited June 2016 #3
    Try not to panic

    Easier said than done I know.

    You are in the worst bit of a cancer diagnosis. Waiting and worrying. Pleased be assured nothing that will happen will be anywhere near as bad as your imagination will make it. Advice? I try not to give it but try to stay off the internet, its either wildly out of date, insane or both. The only 2 places I go are either here or a site called smartpatients. I find this place more humane, and the other more clinical.

    On this site you will find loads of people who have been through the same as you and can help you by empathising with you. I've had this cancer Stage 4, grade 4 for over 3 years  and I aint dead yet.

    You'll go in and go to sleep while a highly trained surgeon removes the offending organ. Then youll wake up. It is major surgery, but not as bad as you probably think it will be. When you wake up, you will be a bit sore. You'll recieve physical therapy and slowly get back to where you were. You may well have some discomfort in the first few weeks after surgery

    That may well be the end of it because youve got a pretty small lump (mine was 10cm). You'll need scans to see if you need more treatment.IF you need treatment there are a whole bunch of new drugs and immunotherapies coming on line. This is a good time to get cancer, it is NOT a death sentence. I dont think I'd be sticking my neck out too far to say that, like with HIV in the 90's, Cancer is turning from a death sentence to becoming a treatable chonic condition.

    I had my kidney and lump removed in May 2013, but it had moved to my lungs. Since I moved to a new immunotherapy treatment my lumps had reduced by 1/3

    Rest assured of two things. Its not as bad as you fear andd we will be thinking of you.

    Good luck and keep in touch 

    (Oh and Jan gives really good advice)

  • icemantoo
    icemantoo Member Posts: 3,357 **
    edited June 2016 #4
    Not fun

    Louis,

     

    Who ever  though in their wildest imagination they would be told they have Cancer and whoever heard of Kidney Cancer. Than the first thong the want to do is yank out your Kidney. That was me 14 years ago and a lot of other people on theis board. Mine was a few mm less than yours. At 5 cm you have a strong chance that the surgery will be a full and final cure. Scans will follow. As you can read from other posts Uncle Ned makes regular visits to Canada as well as the States. Fourteen years ago I temporarily postponed a visit to the San Juan Islands and BC to get nephed. Six weeks after being nephed I did make it back to the Seattle area as well as many times since.

     

     

    Icemantoo

  • APny
    APny Member Posts: 1,995
    So sorry you have to be here.

    So sorry you have to be here. I really think you should get a second opinion, preferably from someone who has extensive experience with kidney cancer surgery. I also think that at 5 cm a partial nephrectomy might be possible. Of course it all depends on its location, but that's why you should get another doctor to verify that a radical is necessary. Partial is more complicated and requires more experience, which is why some surgeons go with radical. You're young so the longer you could hold onto most of your kidney the better.

    I know it's often said here that robotic/lap surgery has an easier recovery but that's not necessarily true. Mine was an open partial and my scar is under four inches, and my recovery was amazing. Surgery Monday morning, up walking that evening, home and sleeping in my own bed on Wednesday and sitting at computer doing work on Thursday. If robotic/lap is easier than that then it must be truly remarkable. So the point I'm making is that should your tumor necessitate an open surgery it's not as bad as you may fear. In fact, my fears were way worse than the reality.

    Finally, there's always a chance it's benign, and even if it isn't, at stage 1 your chances of surgery curing it once and for all are excellent. Wishing you the best and we're hear for you.

  • Louisp
    Louisp Member Posts: 13
    edited June 2016 #6
    Thank you so much for your

    Thank you so much for your support and guidance! I feel so much better after reading your replies and knowing that all of us are going through our journeys together. 

    i have spent most of the day writing down specific questions that I have for my urologist. The questions around partial/radical and open/robotic are at the top of my list. 

    @Footstomper its comforting to know that this is the worst part of it. I promise to stay off the internet after today.

    thank you so much! God bless all of you!

  • hardo718
    hardo718 Member Posts: 853
    Welcome Louis

    As many have already stated, the worst part is the fear that is attached to hearing "surgery" or even the possibility of "cancer".  I too will encourage you to get a 2nd opinion.  At 39 years old, you definitely want to hang onto as much of your kidney as possible.  The good news is that beast within you is small and you probably will never have to deal with it again.  My surgery was via robot and laprascopic.  I was 59 at the time (3+ years ago) and I felt pretty weak after surgery but pain wasn't much of a factor.

    I'll be thinking of you and praying for you.  Keep us posted.

    Donna~

  • Louisp
    Louisp Member Posts: 13
    Thank you Donna! I just

    Thank you Donna! I just finished a follow-up with my urologist. Unfortunately, a partial is not an option for me because of the location of the tumour on the kidney. Additionally, there would be no way to connect the blood vessels so a partial doesn't seem to be an option at all. The maroon line in the attached picture indicates the border of the tumour. He also emphasized that the tumour is destroying my kidney and a radical nephrectomy would be required even if it's not cancerous.

    The growth rate of the tumour is very slow. However, I'm not sure if I should get a second opinion if a radical nephrectomy is inevitable. This would also delay my surgery date by at least 4 months. 

    The good news is that the tumour doesn't seem to be impacting my artery and the chance of spreading to the heart or other organs is nil. 

    An area of concern is that he can't determine my margins until surgery. The report indicated that the tumour is on the edge of the kidney but there's a possibility that it could be growing into the fat. The urologist intends to remove some fat just in case. Because of this, he explained that an open surgery has a greater chance of removing all of the cancer, especially if it's worse than his current assessment.

    Many of my other questions such as type and risk of recurrence cannot be determined until the pathology report (which gives me more anxiety).

    He kept assuring me that I'll be fine and we'll just manage any challenges that may come up. He also lectured me about researching too much on the internet as I'm making the situation much worse than it needs to be.

    Thank you all for your wonderful support! 

  • Louisp
    Louisp Member Posts: 13
    edited June 2016 #9
    For some reason, I can't

    For some reason, I can't upload images on this site. Here's a link to the diagram: https://drive.google.com/open?id=0B76G0yJHJD9qODBybVo0MVVZZ3M

  • icemantoo
    icemantoo Member Posts: 3,357 **
    Second opinion

    Louis,

     

    My thoughts. If you are comfortable with your surgeon I would go ahead without a second opinion. Four months additional delay is too much where it is already 5 cm. If it were 1/2 that size or less I might consider a second opinion. Others may chime in with their thoughts.

    We remain here for your recovery.

    As for your doctor not liking the internet, I wish I would have had someone to  share my experiences with 14 years ago. What you do not want to read about on the internet are cases that are much more advanced than yours.

     

    Icemantoo

  • Louisp
    Louisp Member Posts: 13
    icemantoo said:

    Second opinion

    Louis,

     

    My thoughts. If you are comfortable with your surgeon I would go ahead without a second opinion. Four months additional delay is too much where it is already 5 cm. If it were 1/2 that size or less I might consider a second opinion. Others may chime in with their thoughts.

    We remain here for your recovery.

    As for your doctor not liking the internet, I wish I would have had someone to  share my experiences with 14 years ago. What you do not want to read about on the internet are cases that are much more advanced than yours.

     

    Icemantoo

    Thanks Icemantoo! The thought

    Thanks Icemantoo! The thought of losing my kidney scares me but I am comfortable with this surgeon. I'm praying that I can just move forward once it's out of me. 

  • Dave418
    Dave418 Member Posts: 95
    Hi Louis, welcome to our club

    Hi Louis, welcome to our club :-(

    Waiting and worrying is the worst part of having cancer, and it never stops. Hopefully, you have discovered this site, and believe me, it will help you ease your mind. I had a radical neph in sept 2014 for a 9.5cm, at age 37, i think i can relate to how you must be feeling right now. Don't be afraid to ask questions here, to your Doc and to your nurses, and, as others already said, "try" not to google too much. There's so much information on the web that can drive you nuts, and the majority of it is out of date. 

    I can tell you that living with one kidney is not a big deal, after 20 months, i can say i live a normal life and i have no side effects from losing the kidney. 

    Good luck with surgery!!

    Dave (Canadian too ;-) 

  • foroughsh
    foroughsh Member Posts: 779
    Luis,

    Luis,

    Your story is reminding me what I had to go through 2 years ago, feeling scared, depressed are quite normal for such a young patient once he/she is diagnosed with cancer. I was 36 years old and the tumor was 10 cm, pathology report showed it was stage two. I'm been NED since then. You are hopefully stage 1, which is the best outcome a cancer survivor can have. It was my first surgery too, although every patient's body reacts differently and even if you need to stay at hospital for a week it's still normal but I think a young patient need less time to recover. I stayed two nights at hospital and only the first night was tough, it takes some weeks to feel well but after a while you see'll all pains and ashes are gone.

    Make yourself ready for once you come back home, it's good to have someone for few days after surgery to help you if you need help, pre made foods can also help , walking and drinking water are a must-do, and think about how and where to sleep once you're home,  nephrectomy is a major surgery and I don't want to suger coat it but we're all done it and survived so will you.

    Stay optimistic

    Forough

  • Louisp
    Louisp Member Posts: 13
    Words can't describe how

    Words can't describe how comforting it is to have all of you here during this difficult time. I've read over your stories a few times now, and I keep telling myself that it's not as bad as my mind leads me to believe. I can't get the negative thoughts out of my head of how the cancer will come back one day or invade another part of my body which would seal my fate. 

    I realize that if I want to beat this, I need to stay strong and positive. I need to learn to enjoy the present and not think so far into the future. 

    This morning, I jotted down some life changing goals that would improve my mood. Some of these include quitting my job and joining community groups. I'm trying to think rationally but this idle time to go off on so many different negative tangents.

    I know that I have a lot to be thankful for, especially all of you!

  • Dembel
    Dembel Member Posts: 32
    edited June 2016 #15
    Be positive!

    Hihi,

    Easier said than done....I know! I'm "only" the partner of a 44 year old very healthy and sportive man who is now (next week) 1 year after radical nephrectomy of his left kidney.
    Out of a blue sky he was diagnosed with RCC, 10cm tumor, stage 3, grade 2,...... I got kind of depressed just like you but he didn't, and he was right......he just had the second CT scan after the nephrectomy and still no new tumours, he went back biking as never before and just did a 250km race without any problems.

    So yes, despite the fact that I know how you feel, and I must admit that the fear nevere dissappears completely (the weeks before each scan are the hell), life is great even after nephrectomy.

    Hang in there at least until you know, and even if it is diagnosed with RCC, go and live and love Smile. We definitely plan a party next week!

    Dem

  • todd121
    todd121 Member Posts: 1,448
    edited June 2016 #16
    Louisp said:

    Thank you Donna! I just

    Thank you Donna! I just finished a follow-up with my urologist. Unfortunately, a partial is not an option for me because of the location of the tumour on the kidney. Additionally, there would be no way to connect the blood vessels so a partial doesn't seem to be an option at all. The maroon line in the attached picture indicates the border of the tumour. He also emphasized that the tumour is destroying my kidney and a radical nephrectomy would be required even if it's not cancerous.

    The growth rate of the tumour is very slow. However, I'm not sure if I should get a second opinion if a radical nephrectomy is inevitable. This would also delay my surgery date by at least 4 months. 

    The good news is that the tumour doesn't seem to be impacting my artery and the chance of spreading to the heart or other organs is nil. 

    An area of concern is that he can't determine my margins until surgery. The report indicated that the tumour is on the edge of the kidney but there's a possibility that it could be growing into the fat. The urologist intends to remove some fat just in case. Because of this, he explained that an open surgery has a greater chance of removing all of the cancer, especially if it's worse than his current assessment.

    Many of my other questions such as type and risk of recurrence cannot be determined until the pathology report (which gives me more anxiety).

    He kept assuring me that I'll be fine and we'll just manage any challenges that may come up. He also lectured me about researching too much on the internet as I'm making the situation much worse than it needs to be.

    Thank you all for your wonderful support! 

    Second Opinion

    There should be no reason a second opinion should delay you by 4 months. Surgeons usually keep some openings for urgent situations and work you in within a few days to a week. You just need to reach the right person in the office and explain your situation. I'd try to see a urologic oncologist with experience in partial nephrectomies and laparascopic, robotic surgery. You should be able to leave your schedule with your current surgeon, and get the second opinion in parallel. You'll feel better if the other doc agrees. If the other doc has a major disagreement, you can always stop things to decide what to do. These tumors grow very slow.

    In every case where I called to see a specialist when I had my tumor(s), I was worked in very quickly. I did have to go get copies of my scans and records and hand carry them, though. It was worth it.

    If there's any way to save part of your kidney (without taking a risk with the margins), it'd be well worth it. As we age, our kidney function almost always declines.

    That being said, I wasn't eligible for a partial. My tumor was right in the center of the kidney near the blood supply.

    I'm not saying your surgeon is wrong. For myself, I just felt a lot better about my decisions when I had 2-3 opinions of highly qualified doctors. When I saw an oncologist, my first visit the oncologist was not correct. I ended up being much happier that I saw a couple of others.

    If the doc you are seeing is highly qualified (I'd say he's a urologic oncologist with experience doing lots of partials and robotic laparascopy), then I'd be ok with what he says. However, if he's a regular urologist and has little or no experience doing partials or working with the robotic laparascopy, I'd take what he says with a grain of salt. He may be a little biased towards what he's capable of doing instead of what is best for you.

    Hope it helps.

    Best to you,

    Todd

  • mrou50
    mrou50 Member Posts: 389
    Luis

    Luis sorry you are here good luck with the surgery, the fear is worse than the procedure trust me.

    Mark

  • Louisp
    Louisp Member Posts: 13
    Hello Fellow Survivors,

    Hello Fellow Survivors,

    Your positive energy and words of encouragement have meant so much to me during this journey. I am slowly accepting my situation and learning how to manage it. I just picked up my MRI results from my family doctor. I need your help with interpreting the details (the good, the bad, and the really ugly).

    MRI exam on June 6, 2016.

    Comparison to CT scan on February 17, 2016

    A complex cystic - solid mass is present arising from the superolateral aspect of the left kidney. The mass protrudes into the perinephiric fat. The mass measures 5.3 x 4.4 cm, previously 4.8 x 3.9 cm. The mass contains multiple lobules of enhancing soft tissue as well as numerous small cystic components. Approximately 50% of the lesion is enhancing soft tissue. The mass appears to arise from the left renal parenchyma. The mass does not extend into the renal hilum. The left renal vein is normal.

    The right kidney is normal. The adrenal glands, pancreas, spleen, and aorta are normal. No ascites or lymphadenopathy is present. The liver, gallbladder, and bile ducts are normal. 

    IMPRESSION: The cystic - solid left renal mass contains extensive lobules of enhancing soft tissue. This is likely a cystic malignancy, Bosniak 4. The lesion has increased slightly in size since the prior study from February 17, 2016. Surgical resection is necessary. 

    MY CONCERNS: 

    The urologist told me that the tumor is growing slowly. That doesn't appear to be very slow to me!!

    I understand that if the tumor grows into the fat, then I don't have clean margins (which is bad). The urologist told me that "it appears" to be within the border and contained but he cannot be sure until the pathology report. 

    Is there anything else I can take away from this (good or bad)? 

    God bless all of you!

  • icemantoo
    icemantoo Member Posts: 3,357 **
    growth or maybe not

    Louis.

     

    CT's and MRI's are 3 d pictutes and the same growth may measure differenly by a few mm between tests, THe rea measurement is after surgery.

     

    Icemantoo

     

  • Louisp
    Louisp Member Posts: 13
    edited June 2016 #20
    Thanks Icemantoo! The

    Thanks Icemantoo! The urologist did mention that there is a margin of error between the two tests. 

    However, the urologist moved forward with a radical based on the findings that it's growing and that it's "solid-cystic" (as opposed to cystic). 

  • Footstomper
    Footstomper Member Posts: 1,237
    edited June 2016 #21
    Dont forget

    People donate their Kidneys. It should have very little effect after recovering from the surgery. You can manage just fine with one.

  • medic1971
    medic1971 Member Posts: 205
    Growth rate

    welcome and sorry you are here.  Ice is correct, the "growth" may just be a result of the cuts of the images and nothing more.  The size of the mass may be a few millimeters off from what the scan shows. Mine was 1mm larger than seen on my films, but I've seen some people come back with a mass that was several mm smaller. 

    Like Ice suggested, you might consider a second opinion.  Read my about me section to learn more about second opinions.

    Good luck. 

  • Louisp
    Louisp Member Posts: 13
    Thanks for the advice!

    Thanks for the advice! @medic1971, the video is excellent. I'm considering a visit to Anderson (at my own expense). 

    Several of my friends are pushing me to get a second opinion. One of my friends (also a nurse) told me that the tumor may not be growing at all. 

    While I would love to live in the denial stage a little longer, my situation doesn't sound good based on the MRI report. I'm in Canada (the land of "free" health care) and they expedited my surgery. They typically don't expedite unless a serious issue has been identified. I'm just afraid that I'm wasting more time for myself and my care team if I seek second opinions.

    I'm prepared to part with this kidney. 

  • icemantoo
    icemantoo Member Posts: 3,357 **
    edited June 2016 #24
    Another thought, but not from experience

    Louis,

     

    At 5 cm you are near the upper size limit for a partial anyway and everything else has to fall in place for a partial. I never had a choice as they were not doing partilals then back in the dark ages.

     

     

    Icemantoo

  • Ana Kitano
    Ana Kitano Member Posts: 12
    Hello, i just had my surgery

    Hello, i just had my surgery 2months ago.…before surgery ,ct shows me 4,3-4,7.…after surgery , pathology test was 3,5-4,5 the real size.…you must wait is difficult but cant change nothing till surgery, only enjoy the time.…in octomber i have my first check up.…till then i decide to enjoy the life.…i cant change nothing,only eat right and do exercises.…take care and be strong.…sorry for my english,not native speaker.