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Questions from a nervous Mellie- Updated

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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!

icemantoo's picture
icemantoo
Posts: 3274
Joined: Jan 2010

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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's picture
avdoty
Posts: 62
Joined: May 2014

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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?

CSN_Simone's picture
CSN_Simone
Posts: 62
Joined: Nov 2013

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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!

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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's picture
APny
Posts: 1984
Joined: Mar 2014

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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}

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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.  

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

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
Posts: 482
Joined: Dec 2013

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's picture
Melliebean
Posts: 53
Joined: Jun 2014

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

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

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.

Srashedb
Posts: 482
Joined: Dec 2013

mellie:

my husband had a grade 2 tumor, 10 cm with 2 mets on the spine; one was treated with laminectomy and the other with cyber.

as of his last scans (5/19), there is no visible cancer; visible being the operative word since once it went to the bloodstream, it could still be spreading.

we have a terrifIc medical team, however, so we are hopeful.

Sarah

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

I hope your husband is on the road to recovery.  I know I am feeling a bit better this evening. My doctor contacted me and I was able to ask some more questions and he has put me much more at ease now. I should have been more patient.  I think I have felt bad for so long I just wanted an answer. It's one of those feeling bad where really when people ask what's wrong all you can say is I just don't feel good and I'm tired. I was beginning to think it was in my head.

This morning the doctor had mentioned a partial nepherectomy for me but after going back over my CT scans it's going to be a full. they are suppose to call and schedule it tomorrow. I was so nervous when surgery was mentioned I was trembling all over. But I have calmed now it has to be done and I know all will be well.

What questions do I need to be asking?  He mentioned doing it from the side because of some enlarged blood dialiated blood vessels in my abdomen. I questioned him about one kidney being enough for my lymphedema. I questioned him about the medications I take that help my kidneys keep the water off my body. I told him about all the complications from my last surgery.

Now what questions do I need to be asking that I have no clue to ask about I know there has got to be a bunch?  

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

On a humorous note if I can make someone laugh. When I was done speaking with the doctor I was shaking all over. Even my bottom lip was shaking and I couldn't get it to stop. Well I walk into the room to tell my husband what was said and he sees me shaking and says slow down now stop. (Anxiety kicked in hard, hard to explain but my last surgery was a nightmare.)

i sat there a sec it just wouldn't stop for anything so before I could think I yelled STOP! And popped myself in the lip. Well that did the trick LOL.  I know it's not that funny but since we are both sleep deprived today we finally rolled with laughter.  I was like I just hit my self and just kept right on laughing. After that the day got a bit brighter. Putting my big girl pants on I was allowed to be in a daze for a day.

Srashedb
Posts: 482
Joined: Dec 2013

make sure you have someone with you that can remain calm and ask dispassionately questions.

Stress, the new diagnosis, the word cancer takes getting used to and I guarantee you will not remember much.

in our case, my husband insisted on going to the first meeting by himself; the doctor is some pompous *** I had dealt with before but in our county, he is the head honcho. So, the day before a long 4th of July weekend, he told my husband that he had at most a year and would be lucky to be around for Christmas. I spent the weekend researching as much as I could and connected with the Mayo Clinic.

after the weekend, I lined up second and third opinions then went with my husband to the radiologist, a urologist, and a neurosurgeon. None of these had any experience in oncology, let alone renal cancer.

i read all of the reports and by the time we met with the Ucla docs, I could ask questions which led to more questions. As the days went on, we made a plan.

my husband is doing well these days; he has scans every 3 months which will change to 4 if the next one is clean. He is stage 4 so mortality has broken into our home. 

Sarah

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is the wait. The uncertainty is murder. But once you get through the surgery things get soooo...much better. Accepting these changes is challenging. But we have all been there. Have you noticed the lower stress on the experienced forum members? And not everyone is doing well. Committ to doing your best and try to make everyones job easier. It comes back around.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Mellie,

I have just read your posts. What an ordeal for you!! Like Ron said, I am sorry you went through the whole biopsy thing. They should just operate. That was an unnecessary and expensive step. But what is done is done. I am glad you are feeling comfortable to post your thoughts on here - and best yet is you are using your sense of humour!! But please do some research and get yourself a good doctor! Try not to worry too much - and keep writing!

Hugs

Jojo

 

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

I had questioned the biopsy because I knew it was normally skipped. But they insisted. my mom says it's all a money thing but I don't like saying things like that.  I'll keep writing. It's what I like to do. 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

I doubt it is a money thing... it is ignorance...  This is why a proper specialist is needed, they KNOW what the general doctor doesn't.  We see this all too often around here.. extra procedures and wrong procedures due to the lack of experience.  Once you get to the "A" level team, things go smoother and the results improve.

Good Luck..!

Ron

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

I had a biopsy first.  Took them 2 attempts and 3 months, and I have to agree, it's a waste of time and stress.  But.....I was glad to know I wasn't heading into a major surgery with uncertainty.  I chose to not do RFA (which was an option|) due to the chance it would have to be repeated, and CT scans every 2 months.  No thanks to all that radiation.

 

We are seem to believe the most important part is to find a surgeon who knows his stuff and you trust.  The good news is in the US, you can somewhat refer yourself for other opinions.  Here in Canada, we are basically stuck with whoever the GP refers us to.  I hated my first Urologist.  That guy was bonehead.  One of my general surgeons referred me to the dr who did my neph, telling me it's who he would trust, and had in fact operated on some of his family members.  That was my first experience with a dr who seemed to actually care.

 

The waiting is so hard.  But you will get tthrough it!  I passed the time on message boards, and reading every scientific article I could find.  Knowledge makes me worry less.

cjhawk38's picture
cjhawk38
Posts: 44
Joined: Dec 2013

I too am overweight and had concerns about surgery.  I opted for a biopsy after both CT and MRI didn’t definitely say RCC.  The biopsy was painless and did confirm the RCC.  Also never having surgery before I was very nervous but my urologist at Dr. Phillips Hospital in Orlando, FL was fantastic at making me feel at ease.  He did the surgery robotically on a Monday, I went home on Wednesday and on Sunday went to a concert at Sea World.  I did use my dad’s power wheelchair because I didn’t feel that I could do all the walking I would need to get to the concert but with the wheelchair it was a piece of cake.  My recommendation would be to find a doctor that does robotic surgery with great success over having an open surgery.

Good luck and remember everyone here has been where you are now,

 

Cindy

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

That is one thing that is on my list to ask next time I speak with the doctor is wether it's open, lap, or robotic.  He said he would be going in from the side. I do know that. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I am not sure why people worry about what procedure will be used to remove the cancer. Let the doctor decide. Then it is your job to get better. To me, it is completely insignificant. In 6 months when you look back, it just won't have mattered. Why put yourself through the stress? I say this in a kind, supportive way.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

I agree... the number one goal I had was to survive the surgery... I knew it would be a big one, so no need to ask those details of how big, how long, etc.  Once I woke up after the big op.. I was elated to say the least..!  I wanted to holler and scream of success..!  But alas, I had all those tubes abd wires, including a tube down my throat... and I could barely move for the first few hours...  Then I started to ask questions about the next step...  

I must relate what I feel is a funny hospital story... there are two main things a patient needs to do post op... bodily functions and walking..  So on day one, I "thought" I had to go... they gave me a bed pan.  Now I have no idea how one can use such a thing..  I only had gas... they told me to "let er rip.."  this was a good sign, they pump you up to make room to operate..  pass that gas..!!  OK, day two I was SURE I had to go. but I told them get me up I am going to the bathroom..  Nope, they brought me a portable commode... OK, less steps..  Scarey to get up.. but so great to be able to shuffle my feet a few steps.. Off came the hospital gown I turned around and sat down.. ah... relief...

Get this... I totally forgot that I flashed my ugly back side to the large picture window, which was directly over the main entrance to the hospital and garden area..!   Ya just gotta laugh at "Mooning" a hundred people..!!

Find a way to smile.. it helps you, it helps the hospital staff...!  You can and will do this..!

Ron Cool

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

I've accidentally flashed a few people in the hospital a couple time in my time too.  After being there a while when you feel really bad you lose the modesty.  

Melliebean's picture
Melliebean
Posts: 53
Joined: Jun 2014

Main reason I worry how it is done is because my last surgery was open and I had so many complications it took me 33 days in the hospital A wound vac home health and the wound center another four months to heal it up all tha way. That cavern in my abdomen was a monster. And now to top it all off that monster (hernia from that surgery) and the kidney surgery is being done at the same time. would be much nicer to know it's being done laparoscopiic or robotic. My gall bladder was done lap and no complications.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

that you are going to go through the most important procedure for you and your family. Tell yourself that you look forward to managing this surgery and look forward to a long healthy life because of it. Keep it all positive. You know you will do fine. You will meet this challenge with the advantage of knowing that when you recover, the future will be so bright that you will have to wear sunglasses. Then hold on to that thought tightly. It will all be behind you soon enough.

aamdsi
Posts: 284
Joined: Apr 2014

I can totally understand your fear of this surgery due to the bad ones you have had, but each is different.  I think the hardest part of this is the waiting and worrying.  There is nothing you can do - NOTHING.  (Man I hate that feeling!)

But you have been here before, you know what to expect - so try your damnedest to relax and let the Dr.s do their magic.  Once you are on the "other side" then you can restart your life.  Sure you'll be sore, but it will be a "good sore" due to the fact that its cause made you healthy.  And each day you will get better, feel better, and life will be grand 8-) 

Don't let the fears of the past get in your way.  You will come out of this with another victory scar and on your way to a cancer free life.

 

Hugs to you,

Laurie

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