New here and awaiting biopsy
Greetings -
Looking for a little support/positive stories on which to focus . . .
Had CT scan on Tuesday, which identified a 3.5cm "cyst" on left kidney. Ultrasound today suggests its a mass, and not filled with fluid, which is - apparently - highly suggestive of kidney cancer. Recommendation is that I follow up with urologist and get a biopsy. So now I wait until tomorrow morning, when I can start making calls to see who can get me in the fastest. Until then, I'm looking at my 2 kids (3 and 5 years old) and wondering how the hell I wound up here! I'm only 43, and didn't quite expect this particular curve ball.
Any words of wisdom for the newbie? Positive associations with tumors of that size? Anything to keep me from fixating on metatasis?
Thanks in advance,
Robyn
Comments
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Welcome Robyn
Robyn,
Welcome to the club which no one in their right mind would volunteer to join. Worst case scenerio is that at 3.5 cm, they take out the little bugger and there are no problem aftre the surgery in the vast majority of cases for a possible tumor that size. When you visit the Urologist he may schedule surgery or furhther tests based upon his interpretation of your scan. All of us on this board have been there and done that. Mine was almost 14 years ago. Not fun hearing those words "you may have Kidney Cancer". Hopefully you don't, but if you do you are on your way to putting it behind you. As far as worrying about metasasis, pretty uncommon for Kidney tumors under 4 cm. Keep us posted. If you are going to get Kidney Cancer, you are one of the lucky ones at 3.5 cm.
Icemantoo
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Welcome Robyn
The good news? 3.5 cm is considered small and metastisis is unlikely. Typically, biopies aren't done, but that doesn't mean some doctors won't do it. Mine was slightly smaller, also on the left kidney and was referred to as a "complex cyst". I'm sure others will chime in here but my advice would be to seek out a urologist / oncologist. You have time to get multiple opinions as well. That's a urologist that also specializes in cancer. The mix of emotions that go along with a potential cancer diagnosis is all too familiar to all of us here. Many will reassure you, let me be the first, it is NOT a death sentence. That being said, it can still make your mind reel because it makes you more aware of your own mortality. Also, try to stay away from internet searches. They'll make you crazy with the horror stories.
My surgery was a partial nephrectomy via robotics. (DaVinci to be specific) So, instead of one big incision I had 5 tiny ones.
May I ask, what precipitated your doctor ordering a CT scan?
I'll be keeping you in my prayers,
Donna~
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Hi Donna - Thanks for yourhardo718 said:Welcome Robyn
The good news? 3.5 cm is considered small and metastisis is unlikely. Typically, biopies aren't done, but that doesn't mean some doctors won't do it. Mine was slightly smaller, also on the left kidney and was referred to as a "complex cyst". I'm sure others will chime in here but my advice would be to seek out a urologist / oncologist. You have time to get multiple opinions as well. That's a urologist that also specializes in cancer. The mix of emotions that go along with a potential cancer diagnosis is all too familiar to all of us here. Many will reassure you, let me be the first, it is NOT a death sentence. That being said, it can still make your mind reel because it makes you more aware of your own mortality. Also, try to stay away from internet searches. They'll make you crazy with the horror stories.
My surgery was a partial nephrectomy via robotics. (DaVinci to be specific) So, instead of one big incision I had 5 tiny ones.
May I ask, what precipitated your doctor ordering a CT scan?
I'll be keeping you in my prayers,
Donna~
Hi Donna - Thanks for your reply. I went to urgent care two weeks ago because I was sure i was getting a UTI. Hadn't had one for a decade, but I remembered what it felt like at the beginning! Found blood in my urine but no white blood cells or bacteria. So I followed up with my primary care doc who confirmed blood in urine, and sent me for CT. CT showed that "cyst" - but nothing else, and certainly nothing that would explain my discomfort (lower back pain, feeling like I constantly need to go). So primary care doc referred me to my gynecologist, who wanted to know more about the "cyst" and ordered ultrasound of kidneys and bladder, along with an ultrasound on the stuff on which gynecologists usually focus. They sat me in a consult room and had the on call doc tell me that based on the ultrasound, I probably have kidney cancer; suboptimal to be sure. I was so shocked that I neglected to ask anything about how the rest of the ultrasounds came out! Of course now im fixated on this cyst/mass, but truly, I also want to figure out what's causing the other discomforts!!
That was probably too much detail, but there you have it: the nutshell version of my last two weeks! Anything in there make sense?
Robyn
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welcome Robyn
sounds like an encouraging start to me, but understand everything going through your mind right now. You've come to the right place.
another member, jason.2835 recommended NCCN.org/patient site for kidney cancer. whether it is cancer or not, the information here was helpful to me and easy to digest. I wish i had read all of this first. hardo718 is right: avoid doing general internet searches. Stick with this forum!
Praying for you!
Jay
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Sorry you have to be here,
Sorry you have to be here, Robyn. It's surreal hearing the words "kidney cancer." But as everyone said, even if it turns out to be that, it's most likely caught early and the surgery will be the end of it. Mine was the same size on the same kidney and I had an open partial nephrectomy which, while certainly not fun, was not nearly as bad as I had feared. Surgery Monday morning, up walking that same evening and home Wednesday afternoon. Mine ended up being stage 1, confined to the kidney. Follow up is scans and chest x-ray every six months.
Good advice in getting to see a urologic oncologist with experience in kidney cancer. Wishing you the very best and we're here for you.
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Thank you for all the replies
Thank you for all the replies! I have an appointment this afternoon with a urologist with experience in robotic surgeries for kidney cancer - but I don't think he's a urologic oncologist, specifically. Of course, I'm new to this game, so maybe (likely) there's something I don't know. It looks like you would recommend seeking out an oncologist, though? Right now, my overwhelming desire is to get as many answers as I can, as soon as I can. I'm not so good at waiting generally, and am discovering that I'm particularly not good at waiting on this kind of stuff! One additional question: if they want to do a biopsy, is that the kind of thing they can do in today's office visit, or am I looking at having to wait until next week? erg.
Thanks again,
Robyn0 -
Biopsies are not usually
Biopsies are not usually performed because if it's negative, you don't have an answer. It's possible that they missed cancer cells and biopsied healthy tissue. The only time you have a definitive answer is if it comes back positive. False negatives are more common and I would not want to take a chance on that. But of course you must follow your physician's advice. Only a few of us on this forum were biopsied to the best of my knowledge. I don't know how they're performed so hopefully someone who has gone through it could tell you.
As long as your urologist is experienced in kidney cancer surgery you should be ok. He may even be a urologic oncologist, who is someone who specializes in kidney cancer surgery. A plain old urologist may not handle many kidney cancer cases which is why we recommend one who does.
I agree; the waiting is the worst and you just want it over and done with.
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Update
Greetings - Just got back from urologist and you were all right: no biopsy! He can tell from the scans that the overwhelming likelihood is that the tumor is cancerous. Partial nephrectomy scheduled for June 6th. He seemed optimistic that he could cut it out and that would be that, but of course more detailed analysis will have to await the results of the lab work once it's removed. He'll use some kind of robotic thing that will require only 5 "holes" -- so I figure this should be easier than my c-sections!! (Two phrases I've been trying to remember this week: "Always look on the bright side of life" and "No one expects the Spanish Inquisition." Any Monty Python fans out there??) Anyway, I am feeling much less anxious after talking with the doctor, and now just have to figure out hoe to make it through the next three weeks!
-Robyn
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Love Monty Python
Glad you
Love Monty Python
Glad you're feeling less anxious and soon this will be all behind you. As I said, mine was an open partial and not nearly as bad as I feared. And my recovery was pretty easy and uneventful. So with the less invasive robotic surgry you'll most likely do even better. I was advised to walk 1 hour a day prior to my surgery and to practice with a breathing apparatus (spirometer, I think) to build up strength and lung capacity. I did that for the month before my surgery. Half hour in the morning and half in the afternoon should be fine. Even 40 minutes split up would be fine. I'm convinced it really made a difference in my ability to bounce back. If you already exercise that's great but if not try the walking.0 -
"CANCER!"
"CANCER!"
I swear that was the only word I heard on the day I was diagnosed. If the Dr. had entered the room with a skeletal visage, wearing a black cloak, wielding a scythe and intoning the word 'DEATH!', I couldnt have been more scared.
I had woken in the night and peed blood (dont worry about talking about such things here. Some societies have a secret handshake to recognise fellow members; we just talk about peeing blood). Naturally, I did the British thing (I'm from London, living in Frederick MD): Had a cup of tea and waited for the symptoms to go away. They didnt. That was 3 years and 13 days ago
I went to my Doctor, who diagnosed gallstones and sent me for a sonogram. My phone went off and it was my doctor saying they had found a shadow on my kidney and that I'd been booked in for a ct and MRI scans immediately and she had booked me in with a Urologist afterward.
When I went for my scans the radiologist greeted me with the words, "Is this your first time with Cancer?"
"What?"
"well maybe its something else" To be honest I'd guessed, but I was in denial.
The urologist in the afternoon confirmed that it was Cancer of the Kidney. He told me three things, 1. It was big, 2, It had also spread, growing up a vein and in my lung, So it was Stage 4 for size and spreading, and stage 4 for its agressive nature. 3. He said it was too complicated for him and would recommend me to a top Urolgist and Oncologist in Baltimore. No one ever said anything about a biopsy
In two weeks I was in hospital and only had one kidney. So that would be almost three years ago to the day. And, as far as I know, I aint dead yet. You are right fear is the worst thing and when your waiting for things to happen fear is at its worst.
If I read your name right and you live in DC you should be able to find excellent specialists even if you have to drive to Baltimore. I go to University of Maryland Medical Centre in Baltimore, and of course there is Johns Hopkins. Just north of DC you have NIH, although they are mainly research.
You will probably try a number of drugs, if you need them. But your tumour is pretty small so once its out they might just monitor you once they've taken your lump out.
Congratulations, you've got the cancerr at just the right time. It is still incurable (unless they get it all out) but lots of new drugs are coming on line that reduce the lumps and contain the Cancer. It is no longer a death sentence, it is fast becoming a treatable disease.
You'll be alright.
Oh dont search the internet, most of the information is massively out of date (the science, which my wife works in, is moving so fast), if its not out of date its usually looney tunes. Your safe with us or Smartpatients
Welcome. Sorry for the reason we've met but you're not about to shuffle off this mortal coil and jon the choir immortal. You will not be an ex-Robyn.
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Thank you all - again!
You guys (and gals) must be the kindest people on any forum, ever. Thank you. Focusing on the long three week wait until the partial nephrectomy (which my iphone was insistent was a "partial nephew tony" -- which I kind of like). Have told my parents and siblings and a small group of friends; found that it is actually easier now that at least some people know. I need to come up with a good answer for "how can we help?" I know it's sincere, and for most would actually make them feel better if I could channel their energies somewhere, but I haven't come up with any good answers yet. My sister in law will be coming in for the surgery to take care of the kids, so my husband can spend some time at the hospital. So we've at least got that part covered. If anyone has good ideas of things that might help after the surgery and during recovery -- or before the surgery to get my body, or mind, prepared -- please let me know!
And one last question (for today): I am currently firmly rooted in the "I'm so lucky and so very grateful that we accidentally found this *&#(* cancer" mindset, and I'm hoping that it stays that way over the course of the next few weeks and through recovery. I've also been told to expect that my emotions may be all over the place, from one day to the next, or even from one hour to the next. Other than fear, which has significantly subsided (for now), I am actually feeling pretty good! Am I just lulling myself into a false sense of . . . thankfulness and gratitude? I'm a generally positive person, but want to at least be ready (as ready as I can be) if I'm likely to hit some emotional wall.
Again, thank you all for your kindness and the gift of your time and experience. I appreciate you!
Robyn0 -
Post surgery
Robyn,
While everything looks good a neph or partial is still major abdominal surgery and it is going to talke a while to recover. The first week is really tough. As I have said before there is no way to sugar coat a neph. It took me almost 11 months to get on water ski's again. Roller coasters are out for this summer. I was 59 when I got nephed. Those younger should find their recovery easier.
Icemantoo
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You will need some help with the kids as you can’t do any lifting and bending is no fun either. It's great that your SIL is going to be around for them while you're in the hospital but a bit of help once you get home would probably be a good idea. A few prepared dinners that you could just heat up would be welcome as well, and someone pushing that vacuum cleaner around would be nice. Ditto for loading and unloading washing machines and dish washers. I couldn’t do much physically the first couple of weeks so was grateful for the help from husband and others. So I would probably thank them and say a little help around the house would be much appreciated.
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What to say to the "what can I do to help"..
I am considerably older than you (you can be my daughter), BUT I can tell you ... make a list and have anyone who asks, "what I do to help"...
1. a food train... you will need someone to deliver dinners for several weeks, as you will be recooperating... just walking, shopilping the grocery store, pushing the cart in the store... lifting the bags... you will not be able to do...
2. Clean your house.... you will find sweeping with a broom... or vacuum will put strain on your abdomen ... and it HURTS.. as will lifting the laundry baskets, folding clothes... and putting them away is to heavy, puts strain on your back... and will hurt
3. child sitting... someone to run the children around, you will have awhile before you can drive...
Those are things I think at your age, and stage of childrearing... you will really need. Do not wait to ask for help... ask now, and have your family and friends who truly want to help you out know what they can volunteer for.... It will be a new humble to accept the help... but so necessary.
You will take awhile to get back to normal. At least a coulpe of months.... or longer if a full neph is done.
Best to you on your journey...
Pam
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