Joining the club

Freenc
Freenc Member Posts: 24
in Kidney Cancer #1

I just got home from the doctor. I went in for a CT scan for some pain in my "left" side. The results came back to say that a 4.5cm mass was found in my "right" kidney. I have an apppointment with the surgeon tomorrow morning but of course I am scared out of my mind. The dreaded "C" word was a gut punch from out of no where. According to the report I do not have any swollen lymph nodes or any vascular involvment. From what I have read these are all great things...but I still so raw I am focused on the negative. 

A question to the group...if the surgeon says that I can have a partial removal is it still best to get a complete....you know for safety sake? I do not want this to reoccur in the future. 

I apologize for rambling here. I am just so very scared. 

 

Thanks...Tom

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Partial or full,

    Tom,

     

    It is like choseing between 2 ugly sisters as to which to take to the prom. When I had mine a lucky 13 years ago they were not yet doing partials. There are pros and cons to each and others will chime in as to their favorite. Be sure to discus this thoroughly with your surgeon. Preferably the surgeon also does partials so you have both choices. Having other kidney issues weighs in favor of a partial. A full neph obviously has less recurrance. Mine was about the size of yours.

     

     

    Icemantoo

  • tkmj914
    tkmj914 Member Posts: 43
    #3
    Hi Tom,
    I had a 5.2 cm mass

    Hi Tom,

    I had a 5.2 cm mass and my surgeon said we should take the entire kidney so it didn't come back. I had my surgery on July 6th laproscopic with hand assist. It was rough for a few days but I am feeling good. Today was actually my first scan (chest x ray) and it came back clear. I was a basket case through all of this but like all these wise vets advised me it does get better. It's true, it does. Best wishes to you on an easy surgery and speedy healing. The people on here are so supportive and kind and really eased my fears.

  • Freenc
    Freenc Member Posts: 24
    #4
    tkmj914 said:

    Hi Tom,
    I had a 5.2 cm mass

    Hi Tom,

    I had a 5.2 cm mass and my surgeon said we should take the entire kidney so it didn't come back. I had my surgery on July 6th laproscopic with hand assist. It was rough for a few days but I am feeling good. Today was actually my first scan (chest x ray) and it came back clear. I was a basket case through all of this but like all these wise vets advised me it does get better. It's true, it does. Best wishes to you on an easy surgery and speedy healing. The people on here are so supportive and kind and really eased my fears.

    Thanks for the replies guys.

    Thanks for the replies guys. Right now I am just a basket case and I just want this kidney out of me before this gets worse. I appreciate both of  your replies and well wishes. I am going to listen to the doctor but my inclinaton is to take the whole thing.

    I will let you know what the doctor says.  I just hpe that the removing the cancer is a "cure". I am still so scared.

     

    Tom

  • suzymcdo
    suzymcdo Member Posts: 20
    #5
    Choices

    My doctor laid out both options and all of the pros and cons associated with each. My tumour is a bit smaller but I opted for the partial as I am still young but have Crohn's disease and so take meds that can be hard on the kidneys. It all depends on what makes you most comfortable and what your doctor recommends. My surgery is this Thursday.

    I was / still am very worried but I did feel better after seeing my uro-oncologist and understanding the path forward. Hopefully you too will feel a little better after tomorrow.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #6
    suzymcdo said:

    Choices

    My doctor laid out both options and all of the pros and cons associated with each. My tumour is a bit smaller but I opted for the partial as I am still young but have Crohn's disease and so take meds that can be hard on the kidneys. It all depends on what makes you most comfortable and what your doctor recommends. My surgery is this Thursday.

    I was / still am very worried but I did feel better after seeing my uro-oncologist and understanding the path forward. Hopefully you too will feel a little better after tomorrow.

    First of all, Tom, I am sorry

    First of all, Tom, I am sorry for the shock of knowing you have the "C" word and need an operation. Your tumor is small enough to have a partial, if the position is safe to do one, which it sounds like it is. I wish I could've had a partial, mine was 4.2, but too near the blood supply. However, no one told me that having the whole kidney out (radical) would mean I could never take an anti-inflammatory again. I also didn't know that the meds (including the anti-inflammatory I took daily) would be affected.

    So if you would ever need an anti-inflammatory like Advice or RX ones for injuries, knee or back problems for example, you cannot take them with only one kidney. So for that reason I would've asked if the surgeon could've done a partial on me.

    I also had more difficulty with pain meds and coming out of general anesthesia. It all worked out and I feel okay with the decision.

    We're here for you to walk this journey, if you want us to. Also we're here to support and answer any questions. WE know the shock and all, but actually it was my easiest operation. I did wear a lumbar wrap used for bad backs. It helped support the sore abdomen AND i put dry ice blocks inside next to the largest incision (not directly on the skin though). That helped keep the swelling down so I didn't need pain meds that long.

    I'll keep you in my thoughts and prayers. Most likely they will get it all and you'll be just fine. Besides they will monitor you for awhile.

    Trust me, there are worst things in life. Just don't rush this recovery as you do not want to get any internal injuries even though you feel like you can do more. You CANNOT exercise for 30 days, but you can walk.

    Good luck! Sending you healing vibes and a HUG!!

    Jan

     

  • Bonngo
    Bonngo Member Posts: 79
    #7
    Welcome to the Club No One Ever Chooses

    Tom,

    I can tell you from my experience that in January, 2012 I had a 5 cm mass in my right kidney growing from the bottom.  Because of location doctor decided on a partial nephrectomy, however, it was done with open procedure (14 inch incision) so that a biopsy could be done of the 12th rib and for ease of getting tumor out completely.  I was told that it was a Stage I with a 5-10% chance of recurrance.  

    Fast forward to April, 2015, I ended up with another open surgery to remove the remainder of the kidney because a 3 cm tumor was now there. Based on the premise that kidney tumors grow about a cm per year tells me it just started regrowing after the partial nephrectomy.  It had now grown into the lymph-vascular space and now a Stage III.  I have follow-ups every three months now.  Had testing done yesterday and will get results tomorrow.  I have seen my MRI report and it looks like there is two possible metastatses going on (one in the liver) based on what I read.

    So I guess what I am saying is in hindsight I wish they had just taken the entire kideny out three years ago.  The choice was made partly due to my age (50 at the time) and the fact I had less than perfect kidney function.

    You and your doctor will weigh out all of your options based on your current health and age.

    I wish you well.

    ~Bonnie 

     

  • Freenc
    Freenc Member Posts: 24
    #8
    Bonngo said:

    Welcome to the Club No One Ever Chooses

    Tom,

    I can tell you from my experience that in January, 2012 I had a 5 cm mass in my right kidney growing from the bottom.  Because of location doctor decided on a partial nephrectomy, however, it was done with open procedure (14 inch incision) so that a biopsy could be done of the 12th rib and for ease of getting tumor out completely.  I was told that it was a Stage I with a 5-10% chance of recurrance.  

    Fast forward to April, 2015, I ended up with another open surgery to remove the remainder of the kidney because a 3 cm tumor was now there. Based on the premise that kidney tumors grow about a cm per year tells me it just started regrowing after the partial nephrectomy.  It had now grown into the lymph-vascular space and now a Stage III.  I have follow-ups every three months now.  Had testing done yesterday and will get results tomorrow.  I have seen my MRI report and it looks like there is two possible metastatses going on (one in the liver) based on what I read.

    So I guess what I am saying is in hindsight I wish they had just taken the entire kideny out three years ago.  The choice was made partly due to my age (50 at the time) and the fact I had less than perfect kidney function.

    You and your doctor will weigh out all of your options based on your current health and age.

    I wish you well.

    ~Bonnie 

     

    Thanks

    Thank you so much everyone for sharing your knowledge and stories. This is one amazing group. Based on my own gut feel and stories like Bonnies I am inclined to go with a full.

    I am 45 and in great health otherwise. I have two younger kids that need me and I feel like having the kidney completely gone will give me peace of mind for the future. 

    I will let you all know what the surgeon says tomorrow. 

  • nancybuck
    nancybuck Member Posts: 117
    #9
    Freenc said:

    Thanks

    Thank you so much everyone for sharing your knowledge and stories. This is one amazing group. Based on my own gut feel and stories like Bonnies I am inclined to go with a full.

    I am 45 and in great health otherwise. I have two younger kids that need me and I feel like having the kidney completely gone will give me peace of mind for the future. 

    I will let you all know what the surgeon says tomorrow. 

    So sorry

    So sorry to hear your news.I am relatively new to this group myself, so I am learning along the way. Sounds like you were given some great advise to take along with you to your doctor's visit tomorrow. Wishing you well and awaiting your decision as to what type of surgery you will be having.

     

    Nancy

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #10
    Location

    Hi Tom.  I'm sorry that you are joining our club, but I am so glad that it was found early.  I certainly can understand the feelings of wanting it out of you, now, and completely.  I agree with the others that your surgeon should go over all of your options with you.  I'm pretty sure that the location of the tumor would be important as to whether a partial can be done.  if my husband had a choice he would have chosen a partial.  it is better to preserve as much functioning kidney as possible.  Who knows what the future holds?  I would not push for a complete nephrectomy if it's an option to have a partial.  I hope your appointment goes well tomorrow, and that you keep in touch with us here.

    My husband had a complete nephrectomy due to the location of the tumor.  

  • Freenc
    Freenc Member Posts: 24
    #11
    a_oaklee said:

    Location

    Hi Tom.  I'm sorry that you are joining our club, but I am so glad that it was found early.  I certainly can understand the feelings of wanting it out of you, now, and completely.  I agree with the others that your surgeon should go over all of your options with you.  I'm pretty sure that the location of the tumor would be important as to whether a partial can be done.  if my husband had a choice he would have chosen a partial.  it is better to preserve as much functioning kidney as possible.  Who knows what the future holds?  I would not push for a complete nephrectomy if it's an option to have a partial.  I hope your appointment goes well tomorrow, and that you keep in touch with us here.

    My husband had a complete nephrectomy due to the location of the tumor.  

    Last night

    Well I did not sleep much last night. My mind was racing all night. How did I get this, did I do it to myself somehow, etc. My appointment is in 2.5 hours and it cannot come fast enough. I am going to listen to what the doctor says but after reading about recurrence with partials I just want the whole kidney out. 

    From what I am reading a contained 4.5 mass is considered small and stage 1. For that I am grateful. The CT scan of my chest and abdomen did not to find anything else so again I am grateful.

    The fear is the biggest thing now. I cannot eat or drink....I feel like anything could have caused this and I don't want to make it worse. 

    Sorry again for the rambling on....I just feel like I can talk to everyone here and they will understand.

     

     

  • APny
    APny Member Posts: 1,995 Member
    #12
    Freenc said:

    Last night

    Well I did not sleep much last night. My mind was racing all night. How did I get this, did I do it to myself somehow, etc. My appointment is in 2.5 hours and it cannot come fast enough. I am going to listen to what the doctor says but after reading about recurrence with partials I just want the whole kidney out. 

    From what I am reading a contained 4.5 mass is considered small and stage 1. For that I am grateful. The CT scan of my chest and abdomen did not to find anything else so again I am grateful.

    The fear is the biggest thing now. I cannot eat or drink....I feel like anything could have caused this and I don't want to make it worse. 

    Sorry again for the rambling on....I just feel like I can talk to everyone here and they will understand.

     

     

    So sorry you have to be here.

    So sorry you have to be here. Every one of us was scared and in shock hearing the C word. You didn't do anything to deserve this. I went through the same self-analysis trying to see why I got this. I don't smoke, I've always been normal weight or under, I exercise, eat healthy, no family history, so how the hell did I get so lucky? As for partial vs. whole, I had a partial at Sloan Kettering and my surgeon/oncologist there recommended always preserving as much kidney as possible. It affects not just kidney function but other functions as well including cardiovascular health. As he explained it, unfortunately recurrence is possible whether you had a radical or a partial neph. Just because it's out doesn't mean it can't recur in the kidney bed. Chance of recurrence depends on stage and grade and a dose of luck. So I would definitely discuss this with your surgeon and then decide. Personally, I would want to preserve most of my kidney because at stage 1 the chance of recurrence is not high. No guarantees of course but I'll take the chance. 

  • Richgels1
    Richgels1 Member Posts: 26 Member
    #13
    Freenc said:

    Last night

    Well I did not sleep much last night. My mind was racing all night. How did I get this, did I do it to myself somehow, etc. My appointment is in 2.5 hours and it cannot come fast enough. I am going to listen to what the doctor says but after reading about recurrence with partials I just want the whole kidney out. 

    From what I am reading a contained 4.5 mass is considered small and stage 1. For that I am grateful. The CT scan of my chest and abdomen did not to find anything else so again I am grateful.

    The fear is the biggest thing now. I cannot eat or drink....I feel like anything could have caused this and I don't want to make it worse. 

    Sorry again for the rambling on....I just feel like I can talk to everyone here and they will understand.

     

     

    Genetics

    Hi, Good luck today hope it goes well. My comment would be that you didn't do anything to cause this to yourself. Most of it is genetics. So don't be down on yourself whatever you do. Scott

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #14
    Freenc said:

    Last night

    Well I did not sleep much last night. My mind was racing all night. How did I get this, did I do it to myself somehow, etc. My appointment is in 2.5 hours and it cannot come fast enough. I am going to listen to what the doctor says but after reading about recurrence with partials I just want the whole kidney out. 

    From what I am reading a contained 4.5 mass is considered small and stage 1. For that I am grateful. The CT scan of my chest and abdomen did not to find anything else so again I am grateful.

    The fear is the biggest thing now. I cannot eat or drink....I feel like anything could have caused this and I don't want to make it worse. 

    Sorry again for the rambling on....I just feel like I can talk to everyone here and they will understand.

     

     

    The Fear

    This is the worst thing about the disease. We've all been through it. Rest assured that the disease itself is nowhere near as bad as the fear makes it.

  • Freenc
    Freenc Member Posts: 24
    #15
    Footstomper said:

    The Fear

    This is the worst thing about the disease. We've all been through it. Rest assured that the disease itself is nowhere near as bad as the fear makes it.

    Just got out of the appointment with the doctor

    The doctor said it is a stage 1 and in his words I am going to be cured. He is recommending a total nephrectomy which I am thankful for. The was no involvement with the viens or lymph nodes. He was very hopeful which is great. I just need.to find a way to deal with the anxiety while waiting for surgery.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #16
    Freenc said:

    Just got out of the appointment with the doctor

    The doctor said it is a stage 1 and in his words I am going to be cured. He is recommending a total nephrectomy which I am thankful for. The was no involvement with the viens or lymph nodes. He was very hopeful which is great. I just need.to find a way to deal with the anxiety while waiting for surgery.

    It will get better

    Tom,

     

    At 4.5 cm it was probably on the upper limits for a partial anyway. Those with larger tumors get to the head of the line and get their surgery faster. You do not want to take cuts in this line. Hopefully in the not to distant future it will just be a bump in the road in your journey thru life.

     

     

    Icemantoo

  • foroughsh
    foroughsh Member Posts: 779 Member
    #17
    I think it's a technical

    I think it's a technical subject which you surgeon should make final decision. The place of the tumore plays an important rule in this decision. In some cases they go to the room hopping to be able to to the partial but during the surgery they change their mind based on what they see. I read some papares comparing the reccurance rate between partial and radical which proved there isn't difference. It's important to have a surgeon who knows his job when the option is radical nephrectomy but it is much more important when they want to do  it partially as it's important to have negative margin. Usually other factors such as size,grade,sub type of tumor and stage  are main factors to predict the possibility of reccurance not how they operate it.Good luck. Forough

     

     

  • Freenc
    Freenc Member Posts: 24
    #18
    Thanks

    I am home now. I feel somewhat better that the doctor was positive that I am going to be ok. If I could get these panick attacks to stop I would feel better.  Thanks to everyone for the words of encouragement and well wishes. 

    I will keep everyone posted on how I am doing.

     

    Tom

  • Freenc
    Freenc Member Posts: 24
    #19
    Freenc said:

    Thanks

    I am home now. I feel somewhat better that the doctor was positive that I am going to be ok. If I could get these panick attacks to stop I would feel better.  Thanks to everyone for the words of encouragement and well wishes. 

    I will keep everyone posted on how I am doing.

     

    Tom

    Forough,
    The doctor said due

    Forough,

    The doctor said due to the location of the mass that a radical was the only choice. I am ok with that. I think that I would feel better knowing there is nothing Ieft that can recur. 

    Just need to figure out now how to live with one kidney....I am not sure what if anything do I do differently.

     

    Tom

  • Freenc
    Freenc Member Posts: 24
    #20
    Freenc said:

    Forough,
    The doctor said due

    Forough,

    The doctor said due to the location of the mass that a radical was the only choice. I am ok with that. I think that I would feel better knowing there is nothing Ieft that can recur. 

    Just need to figure out now how to live with one kidney....I am not sure what if anything do I do differently.

     

    Tom

    Susy

    Good luck with your surgery on Thursday. I am praying for you. 

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member
    #21
    Freenc said:

    Last night

    Well I did not sleep much last night. My mind was racing all night. How did I get this, did I do it to myself somehow, etc. My appointment is in 2.5 hours and it cannot come fast enough. I am going to listen to what the doctor says but after reading about recurrence with partials I just want the whole kidney out. 

    From what I am reading a contained 4.5 mass is considered small and stage 1. For that I am grateful. The CT scan of my chest and abdomen did not to find anything else so again I am grateful.

    The fear is the biggest thing now. I cannot eat or drink....I feel like anything could have caused this and I don't want to make it worse. 

    Sorry again for the rambling on....I just feel like I can talk to everyone here and they will understand.

     

     

    free

    I had a complete nph done in April 2014, I feel pretty good , had  a large tumor that covered my right kidney ,so the whole kidney was taken out. Wish i could of had a parital .but that was  not possiable because of the location of the tumor. 

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