Questions

Angiebby75
Angiebby75 Member Posts: 208 Member
edited August 2017 in Kidney Cancer #1

I am 42 female, I just dont even know what to say. I had a stomach CT in July beacuse I was having stomach pain. I had a Divinci hysterectomy last Aug, and was having pain on my right by the scar. I also had a stomach CT in Jan eariler in the year and nothing was found. I am in the Ohio area.  I had just found a new faimly practice doc and he discovered this on my first visit. I was referred to urologist.  I felt really rushed throught the visit, and didnt get to ask many questions. The Doc is in once a week. They said it was 3.4-4 in size. It shows on the left kidney. It is considered a incidential finding. I asked how it could be nothing in Jan and now something. He pulled up the CT from the last test in Jan and showed me where he could see it there. I have and appointment this week. What type of questions should I ask. Also does any one know of good doc near Wright Patterson AFB Ohio area. I have been reading and I am really scared. I read Ohio has the Cleveland Clinic which is 3 hours away but is in my insurance provider network. Should I try to go there.  Are they considered the best. Should I get a second opinion? What do they radiologist and dr look for on the MRI that would lead towards a cancerous mass or benign mass. Any info and prayers are appreciated.  Thank you

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Measurements

    Angie,

    Kidney masses are usually measured in cm, not inches. A 3.4 cm mass is small with usually an excellent prognosis. 3.4 inches is much more challanging. Get a copy of your prior  and current CT reports to verify that we are talking about cm. not inches and we can all be on the same page.

     

    Icemantoo

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited August 2017 #3
    icemantoo said:

    Measurements

    Angie,

    Kidney masses are usually measured in cm, not inches. A 3.4 cm mass is small with usually an excellent prognosis. 3.4 inches is much more challanging. Get a copy of your prior  and current CT reports to verify that we are talking about cm. not inches and we can all be on the same page.

     

    Icemantoo

    Ok thank you I will check.

    Ok thank you I will check.

  • Retcenturion
    Retcenturion Member Posts: 240 Member
    Take a breath...

    I had left kidney removed in April through incidental find. The diagnosis takes your breath away. The scariest thing in my life was being told " You have Cancer". My GP referred me to a Urologist Surgeon who has done hundreds of procedures.. my wife and I knew we wanted him to do my Surgery. Many here will recommend to find a Surgeon/Doctor experienced in Kidney Cancer. Many also recommend a second opinion if your not comfortable with your diagnosis. Its your health and you need the correct information. You have come to the right place. There is a wealth of information here with some of the most incredible people. Ask any questions on anything you can and it should be answered. I would recommend to search on here from past posts and you will see that we have all been where you are. The procedure is not fun but the anticipation was worse than the surgery. Its hard but don't let it consume you, try and relax. Your not alone in this.

  • sblairc
    sblairc Member Posts: 585 Member
    edited August 2017 #5
    Cleveland Clinic: If it's in your network GO

    I'm so glad you got a good doctor to finally read the scan correctly. I say go to Cleveland Clinic. Even if it's only for a second opinion, please go there to be seen. It will be expert care. You can always co-ordinate with them to a more local physician IF you need surgery after they have looked over everything and/or  you don't want to deal with the 3 hour distance. I can understand that being challenging. 

    The short explanation: Cancer lumps have a blood supply visible on a CT scan. Non-cancerious lumps (solid masses) or cysts (fluid filled sacks) do not have a blood supply on a CT. But small masses (yours sounds like it's 3.4 cm) are often caught early in their lifespan and that is a VERY GOOD prognosis. Best of luck to you. 

  • Jen T
    Jen T Member Posts: 20
    In the same boat

    Your story sounds very similar to mine. I'm 45 and just had a 3.6 cm solid mass diagnosed in June. The CT was for stomach pain that was unrelated to the kidney mass so mine was also found incidentally. I was referred to a urologist who sent me for another CT with and without contrast. My doctor told me that although statistically most solid kidney masses are cancerous there is still a chance that mine could be a benign growth. The CT with and without contrast was supposed to help clarify that question. The 2nd CT did not reveal anything that would lead him to believe it was benign but even so, there could still be a chance that is is a tumor called an oncocytoma which is benign. Even if the growth is not benign my doctor assured me that small tumors like ours can usually be taken care of with surgery and have a low chance of recurrence or spread. I will be having a partial nephrectomy in two days. My surgeon is going to do the partial nephrectomy (which removes the tumor and part of the kidney) robotically with the Da Vinci. I have read that that is an excellent way to remove the growth because the recovery is much less painful. It has been and still is a very frightening thing to go through. If my pathology report comes back as renal cell carcinoma (even low grade) I plan on consulting with an urologic oncologist or medical oncologist just to ease my mind although many urologists it seems think that is unecessary for stage 1 low grade tumors which mine and yours hopefully will be. If you haven't seen your urologist yet read up on questions and concerns to ask about but be cautiously skeptical about what you read. I've read some very scary statistics but as someone on this board (as well as my urologist) pointed out, most the statistics are based old data often in older populations who may have had other complicating factors. Treatment of renal cancer has come a long way in the last few years. If after your urology appointment you have more questions make sure to call or email your doctor or set up another appointment. A lot of doctor's offices use patient portals that allow you to send emails to your doctor. I've found that I get better and quicker response that way rather than waiting for a receptionist to give him a message and him to call me back. Additionally, ask questions on this forum. These folks have been very responsive to my posts and have answered many questions. This diagnosis stinks and knocks the wind out of you but hopefully we'll make it through.

  • rdoyd2
    rdoyd2 Member Posts: 80 Member
    Angie

    Contact dr Ronnie Abaza , his office is at Dublin Methodist , dublin is a suburb of Columbus. He is a great kidney surgeon

    he did my nephfectomie in 2013, I had a 11.7 cm tumor. It was done robotically. I have been blessed and been ned since my operation

    plus I think he is affiliated with the James cancer center in Columbus .you should be a great candidate for a partial

  • stub1969
    stub1969 Member Posts: 978 Member
    Differences

    Angie--in my opinion, don't worry about the slight difference in size of the mass in the scans.  My preliminary scan and ultrasound had my mass at almost 6 cm, but my pathology report had the mass at 5.3 cm.  Doctor told me they're looking at pictures and the angles varies.  Also, I'd skip the biopsy and just get the mass out of there.  They can take out the node during surgery ( plus a few more) and test it.  

    Best wishes,

    Stub

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited August 2017 #9
    Thank you all for all the

    Thank you all for all the info. I just left the appt today. Still more questions. So the mass is 3.4 cm on ultrasound and 4.4 cm on ct. How the difference? The first appointment the Dr said the radiologist noted slight enlargement aortic lymp nodes. But stated he didnt see where that was and wasnt a concern. The ultrasound did not note this either. I don't even know if an ultrasound would. At todays appt he said after talking to the radiologist that read the ct he kind of agreed with the slight notation of lymp node possiblity. He recommends a biopsy of the lymp node and of the kidney he said to determine what the mass was and to test the lymp node. He really didn't seem sure of the lymp node issue and had once said he didn't see anything the radiologist had seen in that regards. I ask him about the stage he it look good for stage 1 but the lymp node was a question. I'm really confused. He said all other chest CT and urine test were fine. I am so overwhelmed. Should I get biopsy I read that it not really good to do. I been referred to interventional radiologist for the biopsy. What is the true benefit of the biopsy. I think he said to determine partial or not Is this typical. Can a lympnode be enlarged for other reasons. 

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited August 2017 #10
    rdoyd2 said:

    Angie

    Contact dr Ronnie Abaza , his office is at Dublin Methodist , dublin is a suburb of Columbus. He is a great kidney surgeon

    he did my nephfectomie in 2013, I had a 11.7 cm tumor. It was done robotically. I have been blessed and been ned since my operation

    plus I think he is affiliated with the James cancer center in Columbus .you should be a great candidate for a partial

    rdloyd2 thank you I googled

    rdloyd2 thank you I googled Dr Abaza he seems to be a top Dr in the field. I'm will check my provider list. 

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited August 2017 #11
    icemantoo said:

    Measurements

    Angie,

    Kidney masses are usually measured in cm, not inches. A 3.4 cm mass is small with usually an excellent prognosis. 3.4 inches is much more challanging. Get a copy of your prior  and current CT reports to verify that we are talking about cm. not inches and we can all be on the same page.

     

    Icemantoo

    Icemantoo it is cm but it

    Icemantoo it is cm but it varied 3.4 and 4.4 on two test. 

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    stub1969 said:

    Differences

    Angie--in my opinion, don't worry about the slight difference in size of the mass in the scans.  My preliminary scan and ultrasound had my mass at almost 6 cm, but my pathology report had the mass at 5.3 cm.  Doctor told me they're looking at pictures and the angles varies.  Also, I'd skip the biopsy and just get the mass out of there.  They can take out the node during surgery ( plus a few more) and test it.  

    Best wishes,

    Stub

    thanks for the reply stub1969

    thanks for the reply stub1969. So can a partial still be done or is the only option a full removal? 

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    edited August 2017 #13
    Jen T said:

    In the same boat

    Your story sounds very similar to mine. I'm 45 and just had a 3.6 cm solid mass diagnosed in June. The CT was for stomach pain that was unrelated to the kidney mass so mine was also found incidentally. I was referred to a urologist who sent me for another CT with and without contrast. My doctor told me that although statistically most solid kidney masses are cancerous there is still a chance that mine could be a benign growth. The CT with and without contrast was supposed to help clarify that question. The 2nd CT did not reveal anything that would lead him to believe it was benign but even so, there could still be a chance that is is a tumor called an oncocytoma which is benign. Even if the growth is not benign my doctor assured me that small tumors like ours can usually be taken care of with surgery and have a low chance of recurrence or spread. I will be having a partial nephrectomy in two days. My surgeon is going to do the partial nephrectomy (which removes the tumor and part of the kidney) robotically with the Da Vinci. I have read that that is an excellent way to remove the growth because the recovery is much less painful. It has been and still is a very frightening thing to go through. If my pathology report comes back as renal cell carcinoma (even low grade) I plan on consulting with an urologic oncologist or medical oncologist just to ease my mind although many urologists it seems think that is unecessary for stage 1 low grade tumors which mine and yours hopefully will be. If you haven't seen your urologist yet read up on questions and concerns to ask about but be cautiously skeptical about what you read. I've read some very scary statistics but as someone on this board (as well as my urologist) pointed out, most the statistics are based old data often in older populations who may have had other complicating factors. Treatment of renal cancer has come a long way in the last few years. If after your urology appointment you have more questions make sure to call or email your doctor or set up another appointment. A lot of doctor's offices use patient portals that allow you to send emails to your doctor. I've found that I get better and quicker response that way rather than waiting for a receptionist to give him a message and him to call me back. Additionally, ask questions on this forum. These folks have been very responsive to my posts and have answered many questions. This diagnosis stinks and knocks the wind out of you but hopefully we'll make it through.

    Jen t thanks prayer on you

    Jen t thanks prayer on you upcoming surgery. The wait between test Is the hardest. I would like to just get done soon. This week is my daughters kindergarten open house.  I' m going try an keep my mind on these fun family times other wise my mind wonders about every ache  or pain.

  • icemantoo
    icemantoo Member Posts: 3,361 Member

    Icemantoo it is cm but it

    Icemantoo it is cm but it varied 3.4 and 4.4 on two test. 

    Sounds a lot better in cm

    You will be fine

     

    Icemantoo

  • stub1969
    stub1969 Member Posts: 978 Member
    Depends....

    On where the tumor is located and the skill of your surgeon.  Mine was on the lower pole of my right kidney and I had a partial.  I recovered pretty quickly and went home the afternoon the next day.

    Stub  

  • sblairc
    sblairc Member Posts: 585 Member

    Thank you all for all the

    Thank you all for all the info. I just left the appt today. Still more questions. So the mass is 3.4 cm on ultrasound and 4.4 cm on ct. How the difference? The first appointment the Dr said the radiologist noted slight enlargement aortic lymp nodes. But stated he didnt see where that was and wasnt a concern. The ultrasound did not note this either. I don't even know if an ultrasound would. At todays appt he said after talking to the radiologist that read the ct he kind of agreed with the slight notation of lymp node possiblity. He recommends a biopsy of the lymp node and of the kidney he said to determine what the mass was and to test the lymp node. He really didn't seem sure of the lymp node issue and had once said he didn't see anything the radiologist had seen in that regards. I ask him about the stage he it look good for stage 1 but the lymp node was a question. I'm really confused. He said all other chest CT and urine test were fine. I am so overwhelmed. Should I get biopsy I read that it not really good to do. I been referred to interventional radiologist for the biopsy. What is the true benefit of the biopsy. I think he said to determine partial or not Is this typical. Can a lympnode be enlarged for other reasons. 

    It sounds like there are some complexities here. . .

    So it sounds like you may have some complexities here. All the more reason to get a second opinion if you can at the Cleveland Clinic and/or if you feel like the doctor isn't sure. A kidney cancer EXPERT is the best doctor in these situations. If you are feeling less than convinced of your doctors (which I sense that you are) you should get a second opinion from an expert in kidney cancer. 

  • sblairc
    sblairc Member Posts: 585 Member
    stub1969 said:

    Depends....

    On where the tumor is located and the skill of your surgeon.  Mine was on the lower pole of my right kidney and I had a partial.  I recovered pretty quickly and went home the afternoon the next day.

    Stub  

    But then the biopsy. . .

    I can only assume that they will want to do a full nephrectomy if they are concerned about the signficance of the lymph nodes. I think that is the main issue here about partial versus full nephrectomy. 

  • DreamOnDeb
    DreamOnDeb Member Posts: 112
    My husband definitely had to

    My husband definitely had to have a biopsy.  They had to be positive that it was renal cell and not transitional cell.  It wouldn't have been the same surgery if it was transitional cell.  They would have had to remove the kidney, and ureter, all the way down to the bladder.  It was impossible to tell from several CT scans.  Contrary to popular belief, biopsies on the kidneys are done all the time (if need be).

  • hardo718
    hardo718 Member Posts: 853 Member
    Welcome Angie

    Not unusual for different tests to reveal different sizes. depends on angles, etc.  Typically a CT with & without contrast is the preferred method of testing when possible.  Personally, I would not have the biopsy done, but that's just my opinion and I'm not a doctor.  I have had needle biopsies done for a thyroid nodule.  The first was inconclusive and so painful I swore I would never do it again.  My ENT doc encouraged me to have it done again and I told him I would only do it if the pathologist was also in the room.  That is the only way to insure that they are able to get a sample needed for diagnosis.  My doc agreed and the pathologist was present, microscope & all.  As far as my kidney mass, which was about the size of yours, it needed to come out, so biopsy was never a factor.  Regarding robotic vs open surgery, it depends on the location of the tumor as well as some other factors, including your doctors capabilities.  If that's your preference, request a surgeon that is proficient in that technique.  My surgeon was a urologic oncologist.

    Best wishes and keep us posted.

    Donna~

  • Mighty Frog
    Mighty Frog Member Posts: 152 Member
    edited August 2017 #20
    Hi! Just Got my Pathology Report

    Hi! Already 3 weeks passed from my surgical. Before the surgical my CT scan showed i had a mass 4.6 cm on my left kidney and now my Pathology report stated is 4 cm. So, is it really hard to know the actual size till they removed it and analysis it.

    Before the surgical i had a discussed with my Urology doctor (and also google alot online) it is the best to save as much as your healthy kidney. But again this option is limited to the stages and location of the tumor(As mentions by stub1969). i had a laparoscopic partial kidney nephrectomy (LPN), again this surgical required a skillful and experiences surgeon.

    Today during my follow up, I almost burst to tears..... during my ultrasound scan, I can still see my left kidney is still there and working fine.......

    You can try this link where they explained in quite details of the kidney cancer and treatments...  

    https://www.youtube.com/watch?v=493RFA_tA1I&t=445s

    All the best to you...

  • Hi Angie and JenT.  I was in

    Hi Angie and JenT.  I was in a similar situation 3 years ago.  47 years old.  Had a stomach issue.  Went to hospital.  CT scan revealed 2.9-3.5 cm kidney mass.  "You have kidney cancer" were devastating words at the time.  Local urologist said they would have to remove my entire right kidney (total nephrectomy) because my tumor was in a really difficult location.  I was not happy with that.  I went to Memorial Sloan Kettering in NYC and saw Dr. Paul Russo.  I also had a complicated situation because of a prior massive surgery on my abdomen (termed "a hostile abdomen"), and I was not a candidate for laparascopic or robotic surgery.  Dr. Russo specializes in open surgery.  He assured me that there was an excellent chance he would preserve my right kidney.  Sure enough, the surgery was a success, and he preserved 95% of my kidney.

    Lessons learned in hindight are, that while the initial diagnosis and new terminology is frightening and confusing, after getting a second opinion and going to a more experienced doctor/hospital, I had an excellent result.  I just completed my third year of clean scans, and I was moved to the survivorship program.  They told me that the chance of recurrence was highest in the first 3 years after surger (knock on wood).

    May you have a similar happy ending.  Good luck!!!