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Was just diagnosed

Sal7864
Posts: 52
Joined: Nov 2017

with kidney cancer , 5cm growth on right kidney, meeting with specialist tomorrow for a plan of attack. My general doctor does not think it has spread. Not going to lie. I am scared as heck about this.

 

I am hoping that he only removes bad part and keeps the kidney, as I have read that if you only have one, it could be overworked causing chronic kidney issues down the roar, but don't know how true that is. I will ask my dr. tomorrow , my primary does not think that I will need and chemo or radiation, I hope he is correct

icemantoo's picture
icemantoo
Posts: 3284
Joined: Jan 2010

Sal'

You sound like I did over 15 years ago. At that time they did not due partials. They only yanked the whole kidney out. Unless you have other kidney issues you can lead a normal life with one kidney. Hopefully when you meet with the surgeon a partial is still in the cards if it is appropriate for you. Sometimes they go for a partial and make a game time decision otherwise.

 

Icemantoo

Sal7864
Posts: 52
Joined: Nov 2017

Ice, thank you very much, I will post an update after meeting with dr. tomorrow

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

These days they can tell a lot by film, but make no mistake, they need a pathology to be certain that it truly is cancer.  One of our other newbies just found out he did not have kidney cancer after his surgery. 

There are crazy emotions that go along with all of this though, so I'm sure you are scared.  We all were.  It's a wild ride and it's a process.

We're all here for you, so if you have questions, need guidance on what to ask the docs, what to expect, etc etc.....fire away.

Praying for you,

Donna~

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

 Very Scary

Frm what you say signs are good

have you had any chest tests done

 

Hugs

Annie

APny's picture
APny
Posts: 1988
Joined: Mar 2014

Most likely the surgery will be the end of it with no other treatment required. Yes, it's scary to be told it might be cancer but soon it'll be gone and you'll be on the way to recovery. The surgery and recovery is not nearly as bad as I had feared so don't worry too much about that aspect. Wishing you the very best!

Sal7864
Posts: 52
Joined: Nov 2017

I will keep you posted!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Hi Sal!  I had a 4.5 cm mass on my right kidney. I had a partial nephrectomy September 6th. I know how freaked out you are right now and worrying about everything. But caught under 7cm is typically a really good thing. Depending on the location of the tumor you probably will only lose part of the kidney and it’s good to get it out of there regardless of cancer or not because it will still grow and destroy the kidney.  Know that as scary as it all seems this  a very treatable disease especially when caught early.  keep us posted and welcome to our group!

Sal7864
Posts: 52
Joined: Nov 2017

Met with Dr, he wants to do a biopsy first on off chance that it is not malignant, 20% chance. If so, no surgery  and we monitor. If cancer, we take kidney out( too tricky a location for a partial) I am going in with a mindset that it is cancer, so i won't be disappointed and if not, it a bonus. Pushing  for biopsy next week and if surgery is needed ASAP (which he said won't be an issue) 

I will update as I get more info

Thanks all, you are all GREAT rescources!!

  

   

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...but do your best to stay positive and not obsess over endless possiblities (as I tend to do with everything). It sounds like you're doing everything you need to and are dealing with this quickly and head-on. I hope it's just a growth and you get the best results possible. And if not, we're all here to help you deal with whatever comes next.

Sal7864
Posts: 52
Joined: Nov 2017

Just wondering what all is involved

DreamOnDeb
Posts: 112
Joined: May 2017

Hi Sal,

Yes.....my husband had a kidney biopsy in June.  He had to have a biopsy because there was a chance that it could have been "Transitional Cell Carcinoma" as opposed to "Renal Cell Carcinoma."  Transitional Cell Carcinoma acts more like a bladder cancer even though the tumor is located in the kidney.  If it turned out to be Transitional Cell Carcinoma, it would have been a different operation, where they would have had to remove the ureter, along with the kidney.  He was also told there was a 20-25% chance that it wasn't cancerous.

Well, to make a long story short, it was not Transitional Cell Carcinoma.....thank God.  It was Renal Cell Carcinoma though, and he had a full nephrectomy in August.  He had to have a full nephrectomy as opposed to a partial because of the location of the tumor.  He is doing really well now.

After having the biopsy, he had to remain in the hospital for a few hours, and then he was sent home.  He was told to do absolutely nothing that evening but rest.  It wasn't painful.  

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Angie1496
Posts: 154
Joined: Sep 2017

Sal,

i had a ct guided needle biopsy. It came back inconclusive. Sounds like good news but it was unnerving. Doc told me the tumor can have parts that are not Cancer ans parts that are. Didn’t do a second biopsy. He said regardless of cancer or not the tumor was destroying my kidney. Pain wise it wasn’t that bad. I had diagram pain after inserting the guide needle and for several days after. Left a small puncture mark is all. Mine ended up being CCRCC. Had a partial nephrectomy in September  To do over I would have skipped the biopsy. its hard to ensure they get part of the tumor.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Never had a biopsy but Danny on the Chromophone post said his wife had a biopsy which came back negative but was actually cancer when kidney removed

At 5cm you will still want it out 

Good Luck I will be praying for you

 

Sal7864
Posts: 52
Joined: Nov 2017

when I have the biopsy done and the surgery a week or so later, won't a needle biopsy open me up enough where the cancer may spread? 

DreamOnDeb
Posts: 112
Joined: May 2017

No.....the cancer will not spread because of a biopsy.  With modern biopsy methods, using coaxial sheaths, and fine needle aspiration, there is no risk of spreading cancer.  Interventional Radiologists are highly experienced in safe biopsy methods.

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

this question and he gave me the same reply.  Reports of 'seeding' are not relevant to current medical practice. 

Canadian Sandy's picture
Canadian Sandy
Posts: 654
Joined: Jul 2016

Myself I would skip the biopsy and just get it out. That’s what I’m doing. Mine is 3cm a bit smaller than yours. It’s been there for a year and a half as I had to deal with colon cancer surgery etc. first. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

yet Sandy

Canadian Sandy's picture
Canadian Sandy
Posts: 654
Joined: Jul 2016

I’m going in next April for surgery. It’s not aggressive has hardly grown in a year.

sorry I took so long to answer.

 

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

I'd pass on the biopsy, but then that's an individual choice.

God bless you,

Donna~

Sal7864
Posts: 52
Joined: Nov 2017

and curious  for a reason to those who would pass on it ?  Or I wonder if a PET scan would confirm it?

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

I had a PET for some lung nodules, but they were too small for the PET scan to pick up anything. At 5cm, and on the kidney, you should be OK. As for your question about why someone would forego a needle biopsy, I can only answer from personal experience. I had a bad experience with one on my lung a few months ago that made me lose faith in my hospital's Interventional Radiology department. I would say in your case, considering the location and size of the tumor, the biopsy should be effective. My situation is rather unique, but it does speak to why someone might not want the procedure. It really depends on circumstances such as location and size of the tumor, and in my case, past experience with the IR team. Good luck to you - I'm sure they'll get this figured out soon.

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

John Hopkins has a program that can determine oncocytoma or RCC without biopsy. I checked into it but didn’t do It. The tumor needs to come out. 

Canadian Sandy's picture
Canadian Sandy
Posts: 654
Joined: Jul 2016

I still think there’s a chance of seeding.

Magayon
Posts: 16
Joined: Aug 2017

I had the kidney biopsy before my radical nephrectomy. It was done as outpatient in Interventional Radiology because it was CT guided. I only was given Fentanyl and Versed for concious sedation. I was out and didn't feel a thing. Stayed a couple of hours in the recovery room to watch for any bleeding.

Good luck to you.

Optimisticgirl's picture
Optimisticgirl
Posts: 82
Joined: Aug 2017

Maybe it is just me, but at 5 cm that will be coming out anyway most likely. A biopsy is just an unnecessary step in the process. My husbands Dr explained there was no advantage to knowing ahead of time, since at 6 cm there was no way it would be staying. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Three doctors here in Canada said they do not biopsy. They told me they take the mass out first then determine exactly what it is. Even if they think it isn't cancer they remove it and treat it as if it is cancer.

Xmasevebaby's picture
Xmasevebaby
Posts: 4
Joined: Nov 2017

I‘m new here on the blog and my experience was similar to yours. My doctor said he would not biopsy. I decided I was ok with that because mass had to go regardless.  It turned out I had stage 1 grade 3 RCC. I just had surgery on 11-14- 17 and I’m recovering well. I had a robotic assisted partial right nephrectomy. When I first came to the blog, I was shocked to see how many people are sharing this experience. I’m looking forward to supporting pepole here. 

joedad
Posts: 8
Joined: Nov 2017

(removed)

rdoyd2
Posts: 80
Joined: Aug 2016

i would not have the biopsy either. jsut have it removed and move on with life. the biopsy is just an added procedure that will cause youu un needed stress.

Sal7864
Posts: 52
Joined: Nov 2017

Hi, another question on how much weight might I lose during recovery? I am 5' 11"  only 140, (I lost 35 lbs this year due to a previous fissure surgery ) and am concermed about losing weight during my recovery. I am not underweight but am very close.

Thanks again all, really appreciate all of the input.

 

 

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Sal, I had a partial nephrectomy laprascopically last Thursday - so 5 days ago.  3 hours post op I ate a lamb roast, clear soup and a jelly.  Most of it anyway, fed to me by husband. I was a bit woozy.  My pre op instrucitons were to have a hearty breakfast by 7am for surgery at 1pm.  Yours could be different.   Since the operation I had 3 squres a day - in hospital these were all 3 courses including breakfast, 2 lots of morning tea and as of today am officially on a diet, cannot blame the tummy on the gas and swelling.   I am not overweight, but at this rate I would be.   To be fair, I had no nausea after the anesthetic, Tramadol agreees with me and I was actually starving at every meal, which isn't a usual thing for me.  My mum who is here looking after me actually asked quite nicely today if I have weighed myself... I am not game. Lol. 

If you are concerned about feeling unwell, make some nutritious soups with added coconut milk, fortify some normal milk with extra milk powder make and freeze some of your favourite foods that could be puree'd or organise for someone to help make you some easy to digest egg dishes etc.  Ice cream is great.  Custards.  Mine are all sitting in the freezer still.  I will take them to a friend who I also make food for who is on a puree diet for 8 weeks due to maxofacial surgery. 

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Just weighed and I have gained 6 pounds since surgery 9 weeks ago.  I was not happy as I was losing weight (on Purpose) before diagnosis.  I am finally back at the gym now and hope to get back to my weight loss. 

 

Sal7864
Posts: 52
Joined: Nov 2017

Pre admission testing for biopsy 11/22

Biopsy 11/27

Consult to discuss biopsy results 12/5

I wonder if I will have to do more pre admission testing for the surgery and how long that wlill take between that and the actual surgery? UGH

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I had a biopsy of a 4.5 CM well defined mass on the upper pole of my kidney.  It came back non-diagnostic for cancer.  that sounds good but it was not.  It just meant the tissue they got was not cancerous.  My second opion (urologic oncologist) did not want to do another biopsy as the mass was destroying my kidney and had to come out regardless.  My second and third opinion (both urologic oncologists) said that the tumor can have pockets of tissue that do not have cancer cells in them and that is why you can get that reading even when they don't have a hard time actually getting the tissue from the tumor.  Have you had a second or third opion about a biopsy?  Mine WAS CCRCC.  The only way to know for sure is to have it removed and tested. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

to keep repeating but did they suggest why the biopsy was a good idea first

Going on schedules and tests it will be January before you are having your operation if that is the agreed plan

 

Sorry but I would want it out tomorrow.  

Sal7864
Posts: 52
Joined: Nov 2017

He said that it will be done this year, and that he want biopsy in the event that it's non cancerous 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I am with you... I went from friday to finding out about it to Tuesday having a biopsy.  In hindsight I would not have done it and moved forward with surgery but I was naive at the time and it seemed logical.  My second Opinion doctor is the one that made me understand that it didn't matter.  Cancer or not it was a mass that was not a cyst and it was destroying my kidney and needed to be removed.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

and anxiety and obviously your surgeon is the expert  but Just want the best solution for you

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I don't want to add stress... but I wish I had found this forum BEFORE I had surgery or the biopsy.  So many here have walked this walk before us and really know what to expect etc... Lots of wonderful people and knowledge here!

 

angec's picture
angec
Posts: 924
Joined: Mar 2012

Sal, ppl usually forego the biopsy because at 5cm, you can get a false negative, the tumor has to come out anyway and biopsy is an extra step that slows down surgery and is added anxiety. But, some do go for it on the off chance it is something else. Make sure to get copies of all tests and reports. All the best to you.

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

Earlier when I said I would not go the biopsy route, my opinion is based on a biopsy I had years ago for a thyroid nodule.  The results were inconclusive.  It was VERY painful! 

I know, I know, 2 completely different things.  And actually, the thyroid biopsy was more painful than my kidney surgery...haha....go figure.  I did have to go thru the thyroid biopsy a second time but I insisted that the pathologist be present so they would know right then & there is they got what they needed, and that was the only way I would agree to a repeat.

As far as kidney beast?  Biopsy was never mentioned as an option to me, they just knew by the looks of that little $hit what it was and it needed to go, as small as it was.  Looking back on it, even if biopsy was an option, I would not have opted for that.  Not based on experience or advice, just my opinion.  Bob the Blob needed to be removed, why poke that little sucker?  Remove it, then poke, slice, dice, saute', roast or fry...whatever you like.

Best wishes, whatever you decide.

Donna~

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Just as others have said, I had doctors tell me you can get a false negative. They all (but 1) suggested just taking it out. Glad I did because in 3mths it had grown so much I lost my whole kidney. They say a kidney tumor has to come out anyway. They treat it as cancer until proven otherwise. For me time was of the essence.

Xmasevebaby's picture
Xmasevebaby
Posts: 4
Joined: Nov 2017

I didn’t get the biopsy first just went for the mass. It had to go regardless. I was able to have robotic partial right nephrectomy. I‘m new to the blog and look forward to supporting people here. Don‘t let fear defeat you. Stay strong. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

How are you feeling? Healing well I hope! I had my kidney removed Nov 7th and it has been quite a ride. Wishing you all the best!!!!

Sal7864
Posts: 52
Joined: Nov 2017

now i wait ....

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Good luck!!!

Cybball
Posts: 111
Joined: Nov 2017

How was the biopsy?  I'm scheduled to get one on 12/7.  For some reason, that scares me more than surgery.  

Thanks!

Sal7864
Posts: 52
Joined: Nov 2017

if fact there was really no pain. In 2 days I find out if it's cancer. I have been on pins and needles

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Glad you got that part over with. Hoping for great news!!!!

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