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Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

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's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Ok thank you I will check.

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

You will be fine

 

Icemantoo

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

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's picture
sblairc
Posts: 586
Joined: Feb 2014

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
Posts: 20
Joined: Jun 2017

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.

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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.

rdoyd2
Posts: 80
Joined: Aug 2016

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

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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. 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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. 

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

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's picture
Angiebby75
Posts: 209
Joined: Aug 2017

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

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

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's picture
sblairc
Posts: 586
Joined: Feb 2014

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
Posts: 112
Joined: May 2017

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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's picture
Mighty Frog
Posts: 152
Joined: Jul 2017

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...

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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!!!

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

Congratulations! I am glad that you can now put this behind and focu on the recovery.Take care!

Btw, research shows that small tumors tend to appear larger in CT or Ultrasound imaging most of the time.

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Second opinion, how do you do that. Do I just look up a doctor or just ask my urologist office  i have now. I don't want to offend the dr and then not find one to do a second opinion.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Go to the Cleveland Clinic.  It is a top hospital in the US.  Don't ask your Doctor for a recommendation.  Do some Google research. 

https://my.clevelandclinic.org/staff/6257-steven-campbell

Also consider Ohio State University Cancer Center.  Here are some doctors there:

https://cancer.osu.edu/find-a-doctor/search-physician-directory/j-paul-monk

https://cancer.osu.edu/find-a-doctor/search-physician-directory/megan-m-merrill

https://cancer.osu.edu/find-a-doctor/search-physician-directory/david-s-sharp

 

Google search each of these doctors and read patient reviews.

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Thank u positive mental I will look into these. 

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

For a second opinion, it depends on how your particular health insurance / health group works. I have an HMO, so I went to my primary care physician who wrote the order, but it was the medical group's referral person who worked with me to make it happen.

As for your physician being offended by your wanting a second opinion? If your physician gets bent out of shape, that's somebody you certainly don't need to deal with. Second opinions are pretty much routine in the industry. When I told my surgeon I was going for a second opinion, he said HE was going to talk to another physician the next day about it, too. I found that amusing, but also sensible (and reassuring... at that point I'd had two physicians with three different opinions).

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I have an HMO and I asked my primary.  Wasn't comfortable, AT ALL, with the first doctor.  And like Jerzy said, my second & final doctor said he was going to talk with another doctor.  In my opinion, any doctor that gets his/her feathers ruffled about second opinions is one to avoid.  Ego has no place in the O.R.

Best wishes,

Donna~

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Thanks for the info. I have contact a doc for a second opinion only thing it's not until Sep that seems like a long wait. How long did you wait between the discovery and your surgery. 

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Angie, ANY length wait is TOO LONG. I don't mean it's too long medically, I mean it's too long because most of us could easily work ourselves into a state given 24 hours and many of us did. And nearly everyone gets more of a wait than that. With the size of your mass (it's in the smallish category), no need to bolt for the OR. These things tend to grow very slowly, which is good.

My wait was extra lengthy. September is just next month. This is a great time to stock your freezer with your homemade version of a TV dinner, shop for a couple of outfits that are a size or two bigger than normal (your midsection is gonna be tender and a tad swollen after the surgery), and if your house is cluttered - see what you can get rid of. 

Start on your To Do list with the heaviest tasks first, then work your way to the lighter stuff after that. Anything left over you can do in little dabs once you're back home. If you're like the rest of us, you won't be able to lift stuff and you'll have a short attention span. 

So a September second opinion doesn't have to be a deal breaker. 

Take care, and keep us posted!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

But then my circumstances were a little different since I worked at the same hospital as many of these doctors.  Literally within a couple of days I had seen the first doctor, requested a second opinion & my primary got me on with a second opinion. That second opinion sent me immediately for a CT that was with & without contrast (the first CT was only without) and called me with results before I even got home!  She then referred me to the actual surgeon within her group, as she does not do surgery.  Everything seemed to move at the speed of sound and in no time it was a thing of my past.  I know not everyone is so fortunate to have the right contacts and my only suggestion is to be your own best advocate and become a thorn in their side.  September really isn't that far off but if it's too long for you, call everyday in hopes of a cancellation and maybe they can squeeze you in somehwere.

Best wishes,

Donna~

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I was diagnosed in early May 2014.  Was going to wait until September 2014 for surgery, and then got the earliest appointment--which was July 10.  To me, it was more important to be comfortable with my surgeon and the hospital, and waiting was not a big deal.  Even when I asked about September, the surgeon said most people don't want to wait, but he said it was OK to wait. 

Max57's picture
Max57
Posts: 174
Joined: Mar 2015

Between the diagnose and the surgery one month form my urologist wanted the monster out as soon as possible....good luck

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Anyone use Cancer Treatment Center of America

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Welcome and glad you found us, Angie! Remember, the one things we CAN control is our attitude and coping skills. I know easier said than done. Good chance you're stage I will have NO more cancer once it is out of your body! THAT is the good thing about most of us with kidney cancer! No treatment needed after surgery BUT you need to continue your monitoring appoitments for 5 years with your surgeon. 

And no, you will not need to see an oncologist most likly. Your surgeon will do a lab test that determines cancer markers to see if they are ever elevated, along with scans, lung xrays for awhile. Again, Kidney cancer most likely is GONE with the surgery as the treatment. 

You won't know details until the pathologist does their report after examining the tumor, AFTER surgery. Then you'll have a definitive answer.

Have you ever had any surgeries?

We're here for you all the way, if you want us to be.

Sending you CALM, healing vibes to comfort you as you wait. 

Hugs, Jan

 

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Thank you Jan4you for the kind words. I have have had two c-sections and in 2015 I had a robotic hystercomy due to heavy periods.  I just got the call from the original urologist office regarding the date and time of the biopsy. I am still trying to determine if I am going to have it done. I would like to see the second dr before I get it done. But thats like 4 weeks away.  I am really scared to have it done if I will still need the surgery anyway. I am just not clear what  is he trying to determine.

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

So here's my 2 cents as a kidney cancer survivor and as someone who works in healthcare.

First and foremost get a second opinion at a major cancer hospital.  I understand you don't want to offend your doctor, but this is your life we are talking about, screw other people's feelings.  The goal here is to remove the tumor and try to save as much renal unit as possible.  If given a choice between Cleveland Clinic and Cancer Treatment Centers of America, I would pick Cleveland Clinic every day of the week and twice on Sunday.  Cleveland is one of the top ranked cancer hospitals in the US. 

As far as the biopsy, I would wait and get a second opinion before you had that done, but that's just me.  Your doctor is trying to determine if in fact this tumor is cancer or something else.  If it's not cancer then it can be safely watched.  The fact of the matter is that no will know for sure what this is until they get it under a microscope and that goes for the size also.  It's not uncommon for the tumor to be a different size than what's on the scans.

I waited 4 months between when they discovered the tumor and when I had surgery.  I went to MD Anderson and they found a second tumor that was missed on my original scans!  My doctor at MD Anderson even had an idea what the pathology was based on the CT scan.  He wouldn't tell me what he thought it was, he just simply said that the tumor did not look like a clear cell carcinoma.  It turned out to be chromophobe X 2.  One was 2.2cm and the other was 0.8cm and I kept more than 95% of my kidney.  That was two years ago and so far my scans are clear.

 

Good luck and keep us posted. 

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Thank you medic1971 I think I am going to wait for the second opinion visit before any biopsy. Everyone's story gives me hope and a better understanding of this. I'm glad to hear of your success. I really have been feeling so overwhelmed and down. This forum really helps. 

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

Waiting on my second opinion doctor appt  in two weeks  has been really hard. My mind wonders any new aches or pains are causing me my mind to wonder. Since one radiologist said the para aortic lymph node look slightly enlarged and the first urologist not sure and wanting to biopsy it and the mass . What other reasons can it be enlarged. How would that make the treatment different. I really didn't get that answered with the dr. 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

It's my basic understanding they swell then they work to fight off infections and virusus. I had my daugher checked for one on her neck once (very noticible and I could feel it) and swelling went away eventually. 

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