29 years old, mother of 6, 4.5 cm lesion.

Hanny21

Hi, I don't know if I belong in this area, I am just lost on where else to go. I have had ct and ultrasound done where they found a 4.5 cm mass on my right upper pole. Rim like calcification and was also told I have sponge kidney in the kidney as well. I went in for pain, and was also told my galbladder has polyps and I need it out as it has stones.. 

I just received my CT results Monday and they also saw a 4.4mm nodule on my right lower pole of my lung. Said the kidney mass was non enhancing, low attenuation but does have mesenteric lymph nodes and shotty retroperitoneal lymph nodes. My doctor is retiring in a few days, and didn't even know what most the terminology meant. He sent me a referral to get a biopsy, but I was told no, to just monitor. 

I am scared something will be missed or misdiagnosed. I have been short of breath for months. Have lost weight, I am just 113 lbs from 128 about 8 months ago. I have a bunch of little people like balls under my skin, pain in my side back and center of my upper stomach .. And just feel off..  I  don't want all these symptoms to turn out to be more. My papa is dying of kidney cancer, my twin and I are his caregivers and I see what this disease does to people. Thank you all for listening and you are all so strong! Any advice from people who have dealt with this would be appreciated. Thank you!

icemantoo

Get yourself to a Urologist

Hanny,

Get yourself to a Urologist who specializes in Kidney Cancer if you have not already done so. At 4.5 cm you should have an excellent prognosis. It appears however too large to just monitior. If that advice was from a Urologist get a second opinion. As for the 4,4mm nodule it could be nothing and they will monitor to see if it grows with a follow up scan in 3 or 6 months.

 

 

Icemantoo

hardo718

Welcome Hanny

My goodness, you are a BUSY lady.  I would advise you to first get copies of all the testing you've had done and second, ask for a referral to urologic oncologist.  (altho you may know of one due to your Papa's condition)  Start making your appointments.

The weight loss may be due to all of what you're currently dealing with and a sick gallbladder doesn't help.  Please make sure you follow-up with a specialist instead of taking the watch & see approach.  If this lesion on your kidney needs to be removed, that's something you don't want to wait too long on.  Although this is typically a slow grower, the earlier the better if it needs to be removed for the best outcome possible.  My concern too, is that possibly there is a hereditary component?  With 6 little ones, you really need answers.

I will keep you in my prayers, best wishes,

Donna~

Hanny21

hardo718 said:

Welcome Hanny

My goodness, you are a BUSY lady.  I would advise you to first get copies of all the testing you've had done and second, ask for a referral to urologic oncologist.  (altho you may know of one due to your Papa's condition)  Start making your appointments.

The weight loss may be due to all of what you're currently dealing with and a sick gallbladder doesn't help.  Please make sure you follow-up with a specialist instead of taking the watch & see approach.  If this lesion on your kidney needs to be removed, that's something you don't want to wait too long on.  Although this is typically a slow grower, the earlier the better if it needs to be removed for the best outcome possible.  My concern too, is that possibly there is a hereditary component?  With 6 little ones, you really need answers.

I will keep you in my prayers, best wishes,

Donna~

Thank you and I will make the

Thank you and I will make the call today, and make sure the specialist referral is on its way. Btw, My wonderful grandmother who raised my sister and I passed away at 64 of lung cancer. And her name was Donna.. such a beautiful name. Thank you for your response. I'm scared and don't have many peoples to ask in my family besides my sister for advice, so this website  is reassuring.

Hanny21

icemantoo said:

Get yourself to a Urologist

Hanny,

Get yourself to a Urologist who specializes in Kidney Cancer if you have not already done so. At 4.5 cm you should have an excellent prognosis. It appears however too large to just monitior. If that advice was from a Urologist get a second opinion. As for the 4,4mm nodule it could be nothing and they will monitor to see if it grows with a follow up scan in 3 or 6 months.

 

 

Icemantoo

TThat you, I have only been

Thank you, I have only been to a general practitioner and a hospital. Haven't been told what to do. He,was just going to send me home and my sister put a stop to that real quick to get my in to a specialist. Thank you for the advice, funny thing is after reading through discussion boards, I saw your name pop up a lot. I justill knew I would hear from you. Thank you!  

Hanny21

Also, is there any for sure

Also, is there any for sure way to know if it is cancer or not other than doing a biopsy? That's basically my only option right? And is it a high chance this size is cancer, and is it accompanied by pain on that side that goes to the back usually? Sorry for all the questions, I am just so uncomfortable with this. Maybe tmi, but I also pee about 30 times a day and they did find a left retroaortic vein.. whatever that is. Just remembering more symptoms.. A lot of the stories I have read, people have had smaller masses which were cancer, that makes me nervous.. 

icemantoo

If it is Cancer you should be fine.

Hanny,

 

At 4.5 cm they may take it out without a biopsy depending on the Urologist. The caner diagnosis is often made after surgery. However at 4.5 cm barring tthe unexpexted you should have an excellent recovery. Make sure that the Urologist you see has Kidney Cancer as one of his specialties which typically is within a larger group of Urologists. If you tell us where you are we may be able to offer suggestions.

 

Icemantoo

lobbyist0724

Hanny21 said:

Also, is there any for sure

Also, is there any for sure way to know if it is cancer or not other than doing a biopsy? That's basically my only option right? And is it a high chance this size is cancer, and is it accompanied by pain on that side that goes to the back usually? Sorry for all the questions, I am just so uncomfortable with this. Maybe tmi, but I also pee about 30 times a day and they did find a left retroaortic vein.. whatever that is. Just remembering more symptoms.. A lot of the stories I have read, people have had smaller masses which were cancer, that makes me nervous.. 

Don't worry too much since it

Don't worry too much since it is still relatively small. But definitely not something to ignore about. Did you have a CT with and without contrast. Since enhancement is what they are looking for if it is malignant.

APny

Biopsies are not very common.

Biopsies are not very common. I can only echo what others have said. It's small so even if it is cancer the surgery will most likely be the end of it. It's possible that it's position is pressing on something that makes you pee so often. I don't understand most of the terminology either but you should definitely discuss them with an expert on kidney and kidney cancer. See someone ASAP! All the best to you.

JerzyGrrl

As the others have said...

Do follow through to see that it's taken care of. Good to hear you've got support and are close to family. As you get going to specialists they'll be able to sort this all out. 

As a caregiver, you've already got "super powers" that you're using. Keep us posted as you're able. 

Kat23502

Shotty lymph nodes are quite

Shotty lymph nodes are quite common, we see them regularly. A non-enhancing mass is usually cystic and treatment will depend on size and appearance as some cystic masses are cancer. Having a biopsy vs removal is highly dependent on  you ask. A solid mass only has a about a 10%-15% chance of being benign and a biopsy isn't always conclusive. For this reason most physicians for removal without biopsy. I would highly suggest before undergoing biopsy or anything further I would seek out a urologist that specializes in kidney cancer. They will know exactly what your CT shows and what the implications are. Until then, stay away from Google as it will only give you worry and anxiety!

Bay Area Guy

Hi Hanny.  Sorry you have to

Hi Hanny.  Sorry you have to be here, but it's certainly a goodplace for advice.  Here's my $0.02 worth.

1.  I've been told different things about biopsies.  Most of what I've heard is to avoid getting a kidney biopsy because of the small risk of cancer potentially spreading from the needle stick.  However, I've also seen and heard some docs say it's such an unlikely problem that it's not a reason to get a biopsy.  My urological oncologist said I did not need to get one.

2.  In regard to the suggestion to get a urological oncologist, I wholeheartedly agree.  If you're comfortable doing so, could you tell the board where you're generally located.  With the wealth of experience here, I'm sure someone can refer a fantaastic urological oncologist and, if need be, a surgeon.  If you're in my general area, the Stanford Hospital and Clinics is a top-notch place.  My urological oncologist was Dr. Harcharan Gill and he could not have been more knowledgable, caring or compassionate.  My surgeon was Dr. Geoffrey Sonn and once I got over the fact that he looked like he had just graduated from college (God, doctors seem very young when you're 61), I found him to be an excellent surgeon.  My surgery was done robotically and he is an expert in that.

Best wishes for a good resolution to your issues.

Hanny21

Thank you all so much for the

Thank you all so much for the advice. I just picked up a disk of my CT scan this afternoon and am also getting one I had done 2 years ago to make sure nothing was present then. It was for ovary pain but ya never know if something was missed. 

stub1969

Welcome, Hanny

You've received a lot of great advice from some of our members about your kidney mass, gallbladder, and biopsy.  I have bilateral Medullary Sponge Kidney (MSK), so let me touch on that.  If you've started to do some research on this you know that most people are diagnosed with MSK in their late teens.  No symptoms other than kidney stones.  This was the case with me.   My first stone was found during my junior year in high school.  I had been cutting weight during wrestling season and terrible pain in my right side caused an emergency trip to the ER.  Soon after I received my formal diagnosis.  Many people experience ongoing pain from the number of stones.  I'm fortunate in that I have not had any pain; well, other than when I pass larger stones.  I would recommend ongoing surveillance from a nephrologist for MSK.  He/she speciaizes in diseases of the kidney and can provide you with excellent ongoing care.   

Please private message me if you have specific questions around MSK or my journey with kidney cancer and I'll do my best to help.

Wishing you only the best!

Stub

Hanny21

stub1969 said:

Welcome, Hanny

You've received a lot of great advice from some of our members about your kidney mass, gallbladder, and biopsy.  I have bilateral Medullary Sponge Kidney (MSK), so let me touch on that.  If you've started to do some research on this you know that most people are diagnosed with MSK in their late teens.  No symptoms other than kidney stones.  This was the case with me.   My first stone was found during my junior year in high school.  I had been cutting weight during wrestling season and terrible pain in my right side caused an emergency trip to the ER.  Soon after I received my formal diagnosis.  Many people experience ongoing pain from the number of stones.  I'm fortunate in that I have not had any pain; well, other than when I pass larger stones.  I would recommend ongoing surveillance from a nephrologist for MSK.  He/she speciaizes in diseases of the kidney and can provide you with excellent ongoing care.   

Please private message me if you have specific questions around MSK or my journey with kidney cancer and I'll do my best to help.

Wishing you only the best!

Stub

Thank you for touching base

Thank you for touching base on the MSK. That really confused me seeing that I don't think I have ever passed a stone. I'm sure I would know, but I do get pains in my right side. I'll definitely discuss that whenever I finally get into the doc.

hardo718

I asked a friend that is more familiar with this term than I.  (she's a doctor that I use to work with)  It's a relatively uncommon congenital anomaly of the renal vein passing behind the abdominal aorta.  But as explained to me, the good news is that it may very well account for some of the pain you describe experiencing.  No big deal, generally speaking, especially if it calms your fears about the discomfort right?  Just a structural thing.

Now, as far as the biopsy thing.  In my opinion, I wouldn't do it.  But that's just me.  As far as I'm concerned, I had an invader growing where it didn't belong and the docs were quite sure that the cyst was cancer, my reaction was "get it out".....NOW!  Sure enough, it was cancer and since "Bob the Blob" hadn't invaded any other areas I am happy to say that almost 5 years later I still have NED hanging with me.  (NED = No Evidence of Disease)  Hopefully, you don't have cancer, but if you do chances are VERY good, removal will take care of it and you can get on with celebrating life.

I'll be praying for you,

Donna~

jason.2835

Urologic Surgeon/Oncologist

Hi, Hanny,

Echoing the statements above that you need to get to a doctor who knows their stuff NOW.  Biopsies aren't done for kidney cancer.  I was 35 when I was diagnosed and all they did was schedule me a surgery to get it out.  You need to speak to a urologic surgeon familiar with kidney tumors and an oncologist couldn't hurt because of the nodules seen on the lungs.

- Jason

DreamOnDeb

Biopsies are done all the

Biopsies are done all the time on the kidney (contrary to popular belief).  Sometimes they are really necessary and must be done.  That was the case with my husband.  They had to be CERTAIN what type of cell it was (renal or transitional).  A lot of the time, though, they aren't done.

stub1969

jason.2835 said:

Urologic Surgeon/Oncologist

Hi, Hanny,

Echoing the statements above that you need to get to a doctor who knows their stuff NOW.  Biopsies aren't done for kidney cancer.  I was 35 when I was diagnosed and all they did was schedule me a surgery to get it out.  You need to speak to a urologic surgeon familiar with kidney tumors and an oncologist couldn't hurt because of the nodules seen on the lungs.

- Jason

Jason

It's good to see you again.  I hope things continue to be going well for you.

Stub