Questions from a nervous Mellie- Updated

Melliebean
Melliebean Member Posts: 53
edited June 2014 in Kidney Cancer #1

Hi guys my name is Melonie and I came across this website while googling some medical issues a I am having right now. I've been reading the past few weeks and you all have been through so much. I haven't even had a diagnosis yet but I have some questions I thought maybe someone could help me with.

Last August I went to my primary care Doctor for what I thought was my first ever urinary tract infection. It turned out at the time that it was an infection and I did go home with my antibiotics and hope to get better.  Well with this infection I had this fatigue set in that I just couldn't shake And I still felt ill so I went back to the doctor.  I didn't have a urinary tract infection this time but there was blood found in my urine when they ran my urine tests. Hematurra that was microscopic not that could be seen when I went to the bathroom.  The doctor wants to order a CT scan at that time but my husbands plant where he worked had just shut down which meant a loss of insurance and so I elected to put the scan off till he was employed again and we had insurance. Fast forward till April and more or less I had been and still am suffering from this fatigue that has almost disrupted my home life. It has put a big damper on things I am able to do. If I could go to bed and sleep the day and night away I would I'm so tired. 

Well mid April my leg starts hurting. Which I am used to my knees hurting but I am talking my whole leg. So I set up my long over due doctors appt. She checks for clot no clot, does an ex ray on the knee nothing wrong there notices I habe blood in my urine still and I finally have the CT scan.  She tells me I have a huge hernia I have to go see my hysterectomy surgeon about, I kinda knew about that and the she shocks me and tells me I have a 3.8 cm lesion on my kidney and she is setting me up with a urologist appt.  She says maybe the hernia or the mass on my kidney is causing the leg pain and we need to focus on that. I picked up copies of my ct scan paper and the first reads I have a hyperdense 3.9 cortical mass of the lower pole of the right kidney.i also have nonspecific nodes noted in the retro peritoneum and iliac bilaterally. Of course parts of this is language I can't tell heads or tails of. It does state it could be post inflamitory versus metastatic involvement.

So I go to the Uroligist and he orders another CT this time with contrast. His nurse calls me afterwards and says ok you have a mass on your right kidney and we have you set up for a biopsy the 12. I'm like ok. The hospital calls tells me everything to do for the biopsy and that's that. They hadnt really told me what the results on the CT were actually so I went to pick them up again. This time they read I have a 4.1cm by 4.2 cm hyperdense mass in the lower pole of the right kidney which demonstrates mild enhancement as described. It says renal Cell Carcinoma, transitional cell carcinoma, or possibly a hemmorrhagic cyst.  

The biopsy was Thursday they used a catscan that was quiet nerve wrecking and now I am waiting this weekend for results. 

I'm nervous I've just kinda wanted to bury my head in the sand all weekend so early next week gets here. I've had a scare before with a huge pelvic mass that was suspisious for cancer so I am trying to be patient.

i am just wanting to make sure whatever it is I take the right next steps.

I am so afraid because I am overweight and have a few other problems the doctors will just write me off. They make me feel that wY sometimes if that makes sense.

I read about the biopsys sometimes being wrong that is worrisome. I wonder if leg pain has been a symptom for anyone else and fatigue or drowsiness? Any advice or guidance would be so welcome. I am not automatically assuming the worst I just am trying to prepare for whatever it is. Thanks so much!

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Sounds like

    Mellie,

    Sounds like the Radiologist thinks, but is not sure that it is Kidney Cancer,

     Many times cysts are not Kidney Cancer, but at 4.2 cm there is a possability it is. Now that you have had the biopsy you need to sit down with your Urologist and get his opinion.

     Leg pain and fatigue can be signs of Kidney Cancer, but many other things as well.

    If it is Kidney Cancer or suspected Kidney Cancer a Urological Surgeon may want to do a Nephrectomy (remonal of the Kidney). This is major, but routine surgery. All of  us on this board have had a neph or partial neph.

    The good news is that even if it is Kidney Cancer, at 4.2 cm it is most likely Stage 1 and the prognosis for a full recovery from the surgery alone is excellent.

    Your fear especially when the C word us used is very normal. All of us were shocked when we heard those words. For me that was 12 years ago.

    Lets hope there is another explanation than Kidney Cancer, but if it is,  at 4.2 cm you should be fine

    Icemantoo

  • GSRon
    GSRon Member Posts: 1,303 Member
    icemantoo said:

    Sounds like

    Mellie,

    Sounds like the Radiologist thinks, but is not sure that it is Kidney Cancer,

     Many times cysts are not Kidney Cancer, but at 4.2 cm there is a possability it is. Now that you have had the biopsy you need to sit down with your Urologist and get his opinion.

     Leg pain and fatigue can be signs of Kidney Cancer, but many other things as well.

    If it is Kidney Cancer or suspected Kidney Cancer a Urological Surgeon may want to do a Nephrectomy (remonal of the Kidney). This is major, but routine surgery. All of  us on this board have had a neph or partial neph.

    The good news is that even if it is Kidney Cancer, at 4.2 cm it is most likely Stage 1 and the prognosis for a full recovery from the surgery alone is excellent.

    Your fear especially when the C word us used is very normal. All of us were shocked when we heard those words. For me that was 12 years ago.

    Lets hope there is another explanation than Kidney Cancer, but if it is,  at 4.2 cm you should be fine

    Icemantoo

    Hi Mellie.. sorry you may

    Hi Mellie.. sorry you may need to be here..   I am also sorry that your dr went to biopsy.. The mass, what ever it is, is causing trouble and needs attention no matter what..  However, now that it has been done, they may (or may not) know for sure what that mass is.  A biopsy can verify Cancer, but it can also give a false negative if they did not get the right spot.  However, with the prior scans done, they should know.  Should is the important word.. I am concerned your doctor is not the right one.  Do some homework and see what his/her experience with Kidney Cancer (RCC) is.  You may need to see someone with more experience.  But like the Iceman says, the mass is small, this is a good sign... Keep us posted..

    Ron

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Hi Mellie.. sorry you may

    Hi Mellie.. sorry you may need to be here..   I am also sorry that your dr went to biopsy.. The mass, what ever it is, is causing trouble and needs attention no matter what..  However, now that it has been done, they may (or may not) know for sure what that mass is.  A biopsy can verify Cancer, but it can also give a false negative if they did not get the right spot.  However, with the prior scans done, they should know.  Should is the important word.. I am concerned your doctor is not the right one.  Do some homework and see what his/her experience with Kidney Cancer (RCC) is.  You may need to see someone with more experience.  But like the Iceman says, the mass is small, this is a good sign... Keep us posted..

    Ron

    Yes

    Yes I was reading about the false negatives  and that has had me worried.  Also it was the oddest thing when I had the biopsy a nerve near where they poked did shoot right to my leg so I am wondering if it's not messing with a nerve causing all my leg pain.  I am also wondering if this is the right DR as well. I am putting a lot of faith in someone I have met for five minutes.  The radiologist that did the biopsy did mention if it comes back negative he think the doctor will want to watch and wait and if this mass is causing my leg pain that upsets me a bit because I don't know when it will be addressed or where. 

  • GSRon
    GSRon Member Posts: 1,303 Member

    Yes

    Yes I was reading about the false negatives  and that has had me worried.  Also it was the oddest thing when I had the biopsy a nerve near where they poked did shoot right to my leg so I am wondering if it's not messing with a nerve causing all my leg pain.  I am also wondering if this is the right DR as well. I am putting a lot of faith in someone I have met for five minutes.  The radiologist that did the biopsy did mention if it comes back negative he think the doctor will want to watch and wait and if this mass is causing my leg pain that upsets me a bit because I don't know when it will be addressed or where. 

    Mellie.. please tell us where

    Mellie.. please tell us where you are.. someone will likely have a recommendation for you..  Your tumor is small, but too big for the wait and see.  If it is causing you pain, then it is highly unlikely it will just go away by itself.  If it were me, I would RUN to someone that has Kidney Cancer training.  The biopsy was likely a waste of time and a waste of a procedure.  That is my opinion, and yes I am not a doctor.  But I know that with proper scans and a tumor of that size, they would be 99% sure of what the tumor is.  Time to check out a specialist that is hopefully near you.

    Ron

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Mellie.. please tell us where

    Mellie.. please tell us where you are.. someone will likely have a recommendation for you..  Your tumor is small, but too big for the wait and see.  If it is causing you pain, then it is highly unlikely it will just go away by itself.  If it were me, I would RUN to someone that has Kidney Cancer training.  The biopsy was likely a waste of time and a waste of a procedure.  That is my opinion, and yes I am not a doctor.  But I know that with proper scans and a tumor of that size, they would be 99% sure of what the tumor is.  Time to check out a specialist that is hopefully near you.

    Ron

    My Doc

    The urologist I was referred to is experienced in Kidney Cancer but is not an oncologist of any sort.  I live in a rural area about an hour and a half South of St Louis Missouri. So if need be I can go to St Louis.

    I think Im Being a Bit of a worry wart but I have experienced first hand on how doctors can write me off just a tad because I am obese.  Well actually morbidly obese. I have a few medical problems already. I had a really bad hysterectomy and during the procedure my blood pressure dipped to low and I experienced an acute kidney injury. Which the nephrologist got under control and all working again after a few days in the ICU. He did have to do a round one round of dyalisis though. this was at the end of 2012. I also have lymphedema which from time to time causes to much lymph to form in my body, speciLly when I have an Injury Or a cut. After my last surgery the hysterectomy I developed a serom pa which the Dr automaticLly thought would reabsorb in my body but with having the lymphedema by the time they got me into the hospital to fix it I had fifty pounds extra fluid retention on my body which came off in three days time once they switched up my meds. Meds that really make my kidneys work a little more to keep up like Spirolactone and Torsimide. So he may be factoring in all these things I am not sure. I need to be more patient but it is so hard. The biopsy was Thursday but it seems like so much longer. Before that it was wait to get the first CT wait to reg results. Wait to get into the urologist wait for second Ct Wait for results and then wait to have the biopsy done. So been a lot of steps and waiting. I guess I'm normal to start getting a bit fidgety now about the wait To find out what's going on.

  • Melliebean
    Melliebean Member Posts: 53

    My Doc

    The urologist I was referred to is experienced in Kidney Cancer but is not an oncologist of any sort.  I live in a rural area about an hour and a half South of St Louis Missouri. So if need be I can go to St Louis.

    I think Im Being a Bit of a worry wart but I have experienced first hand on how doctors can write me off just a tad because I am obese.  Well actually morbidly obese. I have a few medical problems already. I had a really bad hysterectomy and during the procedure my blood pressure dipped to low and I experienced an acute kidney injury. Which the nephrologist got under control and all working again after a few days in the ICU. He did have to do a round one round of dyalisis though. this was at the end of 2012. I also have lymphedema which from time to time causes to much lymph to form in my body, speciLly when I have an Injury Or a cut. After my last surgery the hysterectomy I developed a serom pa which the Dr automaticLly thought would reabsorb in my body but with having the lymphedema by the time they got me into the hospital to fix it I had fifty pounds extra fluid retention on my body which came off in three days time once they switched up my meds. Meds that really make my kidneys work a little more to keep up like Spirolactone and Torsimide. So he may be factoring in all these things I am not sure. I need to be more patient but it is so hard. The biopsy was Thursday but it seems like so much longer. Before that it was wait to get the first CT wait to reg results. Wait to get into the urologist wait for second Ct Wait for results and then wait to have the biopsy done. So been a lot of steps and waiting. I guess I'm normal to start getting a bit fidgety now about the wait To find out what's going on.

    Scared

    I guess I'm really scared of being wrote off or something being missed.  in just adopted my two babee ages 5 and 3 was final April 3 and I wanna be around to be their Mommy! 

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Mellie.. please tell us where

    Mellie.. please tell us where you are.. someone will likely have a recommendation for you..  Your tumor is small, but too big for the wait and see.  If it is causing you pain, then it is highly unlikely it will just go away by itself.  If it were me, I would RUN to someone that has Kidney Cancer training.  The biopsy was likely a waste of time and a waste of a procedure.  That is my opinion, and yes I am not a doctor.  But I know that with proper scans and a tumor of that size, they would be 99% sure of what the tumor is.  Time to check out a specialist that is hopefully near you.

    Ron

    A Pain

    What's really a pain is I call after lunch today to see if the results are in they are but havent been seen by the doctor yet. I asked her do you think they will be seen by the dr today. She says she doesn't know.  I know they are there for sure ugh just waiting on the phone to ring.

  • avdoty
    avdoty Member Posts: 62

    A Pain

    What's really a pain is I call after lunch today to see if the results are in they are but havent been seen by the doctor yet. I asked her do you think they will be seen by the dr today. She says she doesn't know.  I know they are there for sure ugh just waiting on the phone to ring.

    I'm generally an impatient

    I'm generally an impatient person and especially don't like waiting for medical test results. So, if you think the report is in, but the doctor simply hasn't read it yet, I would drive to the doctors office and get a copy of the report. They are required by law to give it to you. 

  • Melliebean
    Melliebean Member Posts: 53
    avdoty said:

    I'm generally an impatient

    I'm generally an impatient person and especially don't like waiting for medical test results. So, if you think the report is in, but the doctor simply hasn't read it yet, I would drive to the doctors office and get a copy of the report. They are required by law to give it to you. 

    Okay

    Okay I may do this in the morning. I have an appointment and can go by there.  I did that with my last CT since they didn't even bother to tell me the results just schedule the biopsy. 

    By the way are chain scam emails rampant on this site? I think I just got one in my email on here. I'm a new user so I was wondering?

  • Melliebean
    Melliebean Member Posts: 53
    avdoty said:

    I'm generally an impatient

    I'm generally an impatient person and especially don't like waiting for medical test results. So, if you think the report is in, but the doctor simply hasn't read it yet, I would drive to the doctors office and get a copy of the report. They are required by law to give it to you. 

    Ugh

    I wish I hadnt waited all day for them to call and would have went and got the results before close. I am so upset. To know they are sitting there in that office and I don't know the results. i want to scream!

  • CSN_Simone
    CSN_Simone moderator Posts: 61

    Okay

    Okay I may do this in the morning. I have an appointment and can go by there.  I did that with my last CT since they didn't even bother to tell me the results just schedule the biopsy. 

    By the way are chain scam emails rampant on this site? I think I just got one in my email on here. I'm a new user so I was wondering?

    Hi Melliebean,
    I am one of

    Hi Melliebean,

    I am one of the support team members here on CSN and just wanted to let you know that the user who spammed you was removed from the site earlier today. We have security measures in place; however, we cannot always prevent all of the spammers.

    Welcome to CSN and apologies on the spam.

    Simone

    CSN Support Team

     

  • Melliebean
    Melliebean Member Posts: 53

    Hi Melliebean,
    I am one of

    Hi Melliebean,

    I am one of the support team members here on CSN and just wanted to let you know that the user who spammed you was removed from the site earlier today. We have security measures in place; however, we cannot always prevent all of the spammers.

    Welcome to CSN and apologies on the spam.

    Simone

    CSN Support Team

     

    Thank You!

    Thank You for responding! And thanks for taking care of it!

  • Melliebean
    Melliebean Member Posts: 53
    avdoty said:

    I'm generally an impatient

    I'm generally an impatient person and especially don't like waiting for medical test results. So, if you think the report is in, but the doctor simply hasn't read it yet, I would drive to the doctors office and get a copy of the report. They are required by law to give it to you. 

    I guess I am impatient too

    I called the doctors office this morning at 8:00 and was told he was in surgery but they would have him or his nurse get back with me when he was in the office at 1:00.  It didn't happen so while I was in town I did go ahead and pick up my pathology report. I should probably had made sure I had something for anxiety first.  

    The diagnosis says: right kidney  (designated lesion) CT guided needle core biopsy with cytology and immunohistochemistry.

    Renal Cell Carcinoma, clear cell conventional type, poorly differentiated. (Fuhrman Grade III-IV out of a possible IV see comment

    Comment-Neoplastic cells are positive for immunoperoxidase stain for pankeratin and CD10

    then a whole bunch of stuff down below I don't really understand. Of course some of the above I understand some I don't. Guess I will know more when I hear from the DR.

    just kinda don't know what to think right now. I know my husband doesn't either. I suppose that's normal.

  • APny
    APny Member Posts: 1,995 Member

    I guess I am impatient too

    I called the doctors office this morning at 8:00 and was told he was in surgery but they would have him or his nurse get back with me when he was in the office at 1:00.  It didn't happen so while I was in town I did go ahead and pick up my pathology report. I should probably had made sure I had something for anxiety first.  

    The diagnosis says: right kidney  (designated lesion) CT guided needle core biopsy with cytology and immunohistochemistry.

    Renal Cell Carcinoma, clear cell conventional type, poorly differentiated. (Fuhrman Grade III-IV out of a possible IV see comment

    Comment-Neoplastic cells are positive for immunoperoxidase stain for pankeratin and CD10

    then a whole bunch of stuff down below I don't really understand. Of course some of the above I understand some I don't. Guess I will know more when I hear from the DR.

    just kinda don't know what to think right now. I know my husband doesn't either. I suppose that's normal.

    I’m sorry it wasn’t just a

    I’m sorry it wasn’t just a harmless cyst but at least they found it while it’s still relatively small. The problem with picking up reports without the doctor being around to explain them is that your mind starts going crazy, especially if you’re like me and start Googling everything. Not a good thing to do and often you could end up getting it totally wrong and causing yourself unnecessary anxiety. So I really think you should insist on seeing the doctor so he/she could go over it with you. Wishing you the best!

  • GSRon
    GSRon Member Posts: 1,303 Member
    APny said:

    I’m sorry it wasn’t just a

    I’m sorry it wasn’t just a harmless cyst but at least they found it while it’s still relatively small. The problem with picking up reports without the doctor being around to explain them is that your mind starts going crazy, especially if you’re like me and start Googling everything. Not a good thing to do and often you could end up getting it totally wrong and causing yourself unnecessary anxiety. So I really think you should insist on seeing the doctor so he/she could go over it with you. Wishing you the best!

    Mellie... sorry to hear your

    Mellie... sorry to hear your news... sometimes I hate being right..  but..that biopsy was not needed.  Find a good surgeon and get the deed done.  Your tumor is small, and even with that report, everything is in your favor.  I can absolutely tell you that the fear is worse than the reality.  Even though I said it.. you will worry.. normal.  Typically the University Hospitals are the best places... find out where is the best for you.  Keep us posted, let us know how we can help...  You CAN do this..!

    Ron {Hugs}

  • Phredswife
    Phredswife Member Posts: 162
    Hi Mellibean. Sorry you are

    Hi Mellibean. Sorry you are worried after receiving your report. Hope you get to see your doctor soon so he can explain it to you. I can understand how you have felt like doctors don't treat you as well if you have weight issues. My hubby has felt that way too. To reassure you, he coped fine with his surgery, much better than they led him to believe he would and he is doing well now. Take care.

    Hugs Melissa xox

  • Srashedb
    Srashedb Member Posts: 482 Member

    Hi Mellibean. Sorry you are

    Hi Mellibean. Sorry you are worried after receiving your report. Hope you get to see your doctor soon so he can explain it to you. I can understand how you have felt like doctors don't treat you as well if you have weight issues. My hubby has felt that way too. To reassure you, he coped fine with his surgery, much better than they led him to believe he would and he is doing well now. Take care.

    Hugs Melissa xox

    What I know

    mellie: I am not the patient; my husband is. Grade 3,  poorly differentiated is something you need an experienced surgeon and oncologist. Experienced with renal cancer since many of these docs do not have that.

    as for the numbness, my husband's doctor told my husband that if he experienced numbness or tingling in his legs, he should call ASAP before the lesion in his spine was treated.

    i don't want to scare you but better safe than sorry.

    Sarah

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Mellie... sorry to hear your

    Mellie... sorry to hear your news... sometimes I hate being right..  but..that biopsy was not needed.  Find a good surgeon and get the deed done.  Your tumor is small, and even with that report, everything is in your favor.  I can absolutely tell you that the fear is worse than the reality.  Even though I said it.. you will worry.. normal.  Typically the University Hospitals are the best places... find out where is the best for you.  Keep us posted, let us know how we can help...  You CAN do this..!

    Ron {Hugs}

    Thanks everyone

    Thank you everyone. I did finally talk to the doctor this morning he called told me about the report and then mentioned I will probably need a partial nepherectomy.  He said he wasn't sure yet he had to go back and look at my ct scans and would get back with me because he couldn't remember. In the meantime I am supposed to go see my previous surgeon about a hernia I currently have from my god awful hysterectomy and see if it's not something that can be taken care of at the same time. and the urologist wants that doctor to get in touch with him. Maybe because he is a gyno/oncologist And we went through a lot together. My condition then turned out to be benign then.  But I was a nightmare patient and had a lot of complications.

    To me though this all isnt very comforting, I have a few friends urging me to go to St Louis Washington University or Siteman and at least be seen there so from what I am reading maybe that is the best thing for me.  I still have to talk it over with my hubby. We talked it over last night but we were both kind of. Well our minds were out there a bit. Neither of us slept well so he and I may need to talk Friday about it.  

  • Melliebean
    Melliebean Member Posts: 53

    Hi Mellibean. Sorry you are

    Hi Mellibean. Sorry you are worried after receiving your report. Hope you get to see your doctor soon so he can explain it to you. I can understand how you have felt like doctors don't treat you as well if you have weight issues. My hubby has felt that way too. To reassure you, he coped fine with his surgery, much better than they led him to believe he would and he is doing well now. Take care.

    Hugs Melissa xox

    Thank you

    Thank you for the kind words.  I'm glad to hear your hubby coped well.  It is scary when you have experiences that and then Your faces with something major.

  • Melliebean
    Melliebean Member Posts: 53
    Srashedb said:

    What I know

    mellie: I am not the patient; my husband is. Grade 3,  poorly differentiated is something you need an experienced surgeon and oncologist. Experienced with renal cancer since many of these docs do not have that.

    as for the numbness, my husband's doctor told my husband that if he experienced numbness or tingling in his legs, he should call ASAP before the lesion in his spine was treated.

    i don't want to scare you but better safe than sorry.

    Sarah

    Thanks

    Thanks for the tip. I wasn't really sure on the grading and what it means. I understand staging but not grading?