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Worried Newbie

CK75
Posts: 15
Joined: Sep 2016

Just found this discussion board and hope to share some of my worries.

It all started with a back pain and was scheduled for US in June and found a 3cm mass and CT with contrast in Aug and mass was 3.8cm with measurement 2.6x3.2x3.4cm at right kidney upper pole. Wondering why the difference in measurement between US and CT, is this normal or has my growth of 0.8cm in just 2 months?

Is an exophytic lesion with coarse internal calcification and hypodense centre. Not sure what this mean. Below is the radiology report.

- no focal lesion seen in liver.

- billary tree not dilated and no radio-opaque gallstone seen.

- no focal abnomality seen in pancreas and spleen.

- adrenals not enlarged and bowel loops not dilated.

- No enlarged node is seen in abdomen and pelvis.

- No destructive bone lesion seen.

- Heart not enlarged and lung bases clear.

While doctor ordered additional lung CT with contrast and nothing was seen.

My worries are doctor mentioned that at this stage all he could see is likely T1a RCC and suggested surgery as an option. At first he suggested radical as mention he could "get it all" and partial have 5%-10% chance of recur. Either way he provided me choices so in the end I chose Robotic Partial Nep. My doctor is a Uro/Onco and surgery scheduled on 29 Sept. Before this I have already seek 2nd opinion from another oncologist.

Reason for partial is the advise from the other Onco (happens to be my brother's Onco as he has Stage 4 RCC), if it happens to be genetic, likely recurrance will be there so saving much part of kidney possible is more advisable. While listening to this, I am terribly worried and started to break into cold sweat that it being genetically linked and couldn't sleep for many days and lost concentration at work as well as appetite. Funny is our parents do not have this so were our grandparents.

1) What is the Post-Op pain level for robotic partial?

2) between last CT to Op date is 1 month, any chances this will spread? As I constantly could feel some aches here and there while waiting for surgery date.

3) Any chance of it being Benign tumour at this size? As doctor mention 10% chance of being this.

4) What chances of recurrance after surgery?

Many thanks.

CK

 

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

CK,

Welcome to the club which no one in their right mind would volunteer to join. Wooyied? Thats normal. We all felt like sh-- when told we had Kidney Cancer and the first thing they want to do is yank out part or  all of your kidney. That too shall pass. As for your questions.

 

1. There is no way to sugar coat a neph. It is better than the alternative.

2. Highly unlikely at that size.

3. Already answered. Sometimes what looks like Cancer on a CT is not.

4. Very low. That is the reasons for the scans post op. to catch anything before it misbehaves or in the bud.

We all went thru what you are going thru. Mine was 14 years ago.

 

 

Icemantoo

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Ck, glad you found this site, so welcome! Sorry you have to face all of this, especially with your family history. I can appreciate your anxiety. Did either of the surgeons tell you about the margins of the mass they found in your kidney? That is how mine was explained to me, as I also had a cyst. Turned out mine too was stage 1. Had a radical due to the placement of the mass which was close to a blood supply and about 4.2 cm. I am fine, nearly 3 years now. You will be monitored closely for years.

As far as the pain I have had several abdominal surgeries, two were the less invasive, robatic, laproscopic. Found that laproscopic incisions helped reduce my pain level and recovery much better.

Anytime you have abdominal surgery they pump this gas inside so surgeon can SEE past your other organs and be able to move the robatic arms around. After surgery, this gas gets trapped in places like your shoulder and THAT hurt, but I knew it was only gas. Kept swinging my arm around and moving and it left finally.

You cannot exercise for at least 30 days following surgery as your insides need to heal up. You CAN walk as much as you can, but  you need to rest and not lift. You will be more tired than usual, you went through major surgery and the medications used in anesthesia have to dissipate over several days, at the same time you are taking oral pain meds.

I highly recommend getting this orthopedic lumbar wrap used for bad backs and wearing it so support those aching muscles. You can get it at a drug store. Get a large enough one so you can be comfortable. I would also place dry ice packets inside this wrap and it helped reduce the swelling, therefore needing less and less pain meds. It is best to learn how to get up and roll over carefuly following surgery, so I wore this wrap even to bed.

I remember asking for ice to apply over my abdomen in the hospital and the RN looked puzzled as she told me I had plenty of pain meds to choose from. ICE works! So the PT person who had to evaluate my walking, took a plastic glove and put ice cubes in it for me. It worked to provide immediate relief!

Keep asking us any questions you may have, but I bet you will get that nasty RCC out of you and be okay for many many years.

I hope your brother is on this site, is he? There are several wonderful folks here who are stage IV RCC.

You WILL get through this, CK. We will walk aone side you all the way, if you want us to.

Save your energy for living, not worrying about things you don't even know will happen.

Sending you calming, healing vibes and a gentle hug,

Jan

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I guess that would include me ( he said modestly). I'm glad to hear your brother is doing well on Sutent.

I was diagnosed stage IV on May 1st 2013. I'm still here and not planning on popping my clogs anytime soon.

There is another good (but more technical) site called 'Smart Patients'. Apart from that welcome and tread warily.

CK75
Posts: 15
Joined: Sep 2016

Thanks Icemantoo, yes the waiting part towards surgery is not a good feeling.

 

Hi Jan

Thanks for the suggestion on lumbar wrap with ice, will try to get one of this before my surgery. Also I did heard that bed wedge is also a good option. My brother is doing fine currently on Sutent.

CK75
Posts: 15
Joined: Sep 2016

One more thing, my brother is only 37 years old and I am 41. So we are kind of thinking why do we get this at such age.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

The Iceman has said everything. Can I say straight off that we are not doctors. If some of us are, sadly they are not doctors of medicine. What we are are patients often in need of sympathy just as often as we attempt to dish it out to others.

All of us remember being diagnosed and the sheer panic that engendered. I'd be tempted to say that panic and worry are just about the worst things about cancer. Its not a death sentence and its getting more treatable by the week. Science is moving so fast.

Your tumour is a bit of a tiddler (mine was 10cm), I bet than whip it out and treat you successfully.

NOTE:(Its so scarey and science is moving so fast that Google is worse than useless. It is either out of date or crazy or both)

As for pain, as a man I suspect it must be similar to a caesarian, no woman has told me otherwise. Its pretty major surgery and it'll hurt a bit. I'm here as a lily-livered coward to tell you its doable. Can you imagine how much it hurts? WELL ITS NOWHERE NEAR THAT BAD! Your imagination is not your friend at this moment.

I reckon you've got a really good chance of having it removed and suddering nothing more than occasional monitoring.

So dont panic, you'll be fine. Trust me, I'm a musician.

CK75
Posts: 15
Joined: Sep 2016

Thanks Footstomper. It really makes me feel more at ease finding this discussion board and talking with all of you.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Welcome to this site, CK.  All of us have gone through this--I'm one month out from my partial, and a two month member of this "club".  This site is great for bouncing questions off members, expressing options, and seeking input or support.  I don't think you will find a better group of people that will assist you in all these areas.  I can't add any more than what other memebers have shared--other than a little about my experience.   I was out of the hospital the next day after my surgery.  Pain was very managable, in fact, I only took the pain meds for two days and was fine.  I haven't started to run again (yet) but have really picked up my walking pace.  I did sleep in a recliner for a couple nights--I tried sleeping in bed, but stretching out straight didn't feel right.  I gradually started to straighten out and actually stretch my abs--which felt great, but it took a few days.  Listen to your body--it will tell you when its ready and what it can handle.

I want to wish you well in your surgery next week.  Take care and prayers will be said for you. 

Stub

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

A cancer diagnosis will definitely shake the ground you walk on, but as others have said, yours has been caught early and most likely surgery will do the trick.  I was 59 when mine was removed via robotic lap.  I was out of the hospital 2 days later and only took pain meds once after getting home.  I honestly didn't have pain.  Discomfort, yes, and never felt so weak in all my life.  Now, others describe more pain than I experienced and if that's the case, by all means stay ahead of it and take the meds.  You must keep in mind no matter if you have an open procedure or the lap. it's still major surgery and although externally you will heal pretty quickly, inside is another story.  Just takes time.  I was off work for 3 weeks total and then went back with some limitations, no lifting, stretching, pulling.  It's important after surgery that you go for short walks and do those breathing exercises.

I'm adding you to my prayer list and please keep us updated on your progress.

Donna~

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Sorry you had to join this board.

Well I think every one's tolerance is different. I had open radical and the first night sucks but then things get better. Robotic partial is less painful and hopefully you'll recover sooner than those of us with open radial surgery.

Renal cell carcinoma has a slow growth rate so it's almost impossible for such a tumor to spread during just one month especially for such a small tomur. talk with you surgeon about your pains and ashes but don't worry too much as sometimes the cause of pains or ashes is mental not physical

Try to relax

Have a successful surgery

Stage 1 and small tomur, that's the best we could wish for. Really small chance of reccurance and it means you have a long life to live.

 

Debbie2016
Posts: 7
Joined: Sep 2016

it's been two months since my nephrectomy of left kidney Due to RCC stage 1. I did very good after surgery and went home on the second day after surgery. I walked a little every day and it did help. I went back to work at desk job after three weeks. Was very tired, but was much better the fourth week. And got better every weeK. 

I wish you the best and hope for a speedy recovery for you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Welcome. Thanks for filling out your details. It sounds like you've a great attitude towards this disease. That will help you and us. You'll find there is a great bunch of people on this site. 

Iggyrip
Posts: 43
Joined: Sep 2016

Welcome CK. I too am a newbie and recently joined this group. It's the best thing I could have done. The people here have a wealth  of experience and are very supportive. They helped me get through my first week after learning of my cancer.  I  wish you the best in your treatment. 

Iggrip

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Thanks for filling out your personal story Debbie.  If you are new, please take a few minutes to complete this.  It helps all of us get some background on your journey.  Thanks!

Stub

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

And welcome! Sorry you have to join us.

I scanned through everyone's answers. Hope I don't overlap too much.

CT is more accurate than US. Very doubtful it grew between. These things grow pretty damn slow. CT with contrast is the best in terms of watching for RCC.

They won't make a true diagnosis until they get it out of your body and slice it and put it under a microscope. Nobody can make a diagnosis without that. Only then can they tell you if it's cancer, what type, etc. Similarly, they can't diagnose the stage. You'll need the pathology before you know what you're dealing with. It's true that tumors < 7cm are usually Stage 1. However, it also depends on what the tumor has grown into. Even small tumors that have infiltrated certain blood vessels (for example) can be classified as Stage 3. I had one that was Stage 1 going into surgery and when I got my pathology report it was Stage 3 because it had grown into some blood vessels.

They seem to lean towards partials these days. Saves kidney function and you may need it someday. From what I've heard there's no link between recurrence and whether you have a partial or a radical nephrectomy. Recurrence is more tied to the stage and type (and grade, which is also classified 1-4, which is an indicator of how agressive the cancer is). Anything off scans is a guess.

Genetic kidney cancer is the most studied and best understood kidney cancer. There are genetic tests you can have to check for this type. If you truly have genetic kidney cancer I would advise finding a specialist that knows about it. I heard a doctor speak about this, and he said they have excellent procedures for dealing with this disease and sometimes surgery is not even called for. Many of our current understanding and treatment for kidney cancer comes from that line of research at the NIH. There are people on here with genetic type kidney cancer (there isn't just one type, but I'm talking about the more common ones that have been followed/studied). I don't have genetic kidney cancer and honestly I didn't pay close attention other than what I'm relaying here. It might be worth looking into sooner rather than later if you think you have genetic kidney cancer.

Most of your questions can't be answered until you have a pathology report.

Best to you,

Todd

 

 

CK75
Posts: 15
Joined: Sep 2016

Hi Everyone

Thanks for the encouragement and information. It really helps me to prep for the surgery next week. Hope all goes well and keep all posted.

CK

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

CK,

 

 

be uneventful and boring. I would say painless, but I would be laughed off this board.

 

 

Icemantoo

CK75
Posts: 15
Joined: Sep 2016

Have been post op day 7. Spend 3 nights in hospital after my robotic right partial nep. First night was no good with so many tubes around you and second day most of which are removed. Then psychio will come to guide you to walk around the corridor, that's my first walk post op day 1. Slightly painful but eventually the more I walk it feels better.

Worse is the gas that trap inside and both sides of shoulders hurt badly, that goes away after day 4. Today there still slight aching over the wound side and hopefully will be all gone when doctor review my pathology report next week.

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

you are on the road to recovery!  Needless to say, first week is a struggle, but there is identfiable improvement day by day.  Im 3.5 weeks post op (open radical surgery), and I am driving and working again, so I feel confident that in a week you will feel much much better!  I even managed to lose 10 pounds, so the running joke is I tell people I really went to fat camp instead of having kidney cancer!  

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

It is impossible not to worry about your future. My only advise to get through this is one day at a time. It gets far to overwhelming for me otherwise. We are here with you.

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