CSN Login
Members Online: 18

Is it safe to wait

laurelee04
Posts: 1
Joined: Jan 2012

I am a 27 year survivor of Hodgkin's lymphoma. I have just been diagnosed with renal cell cancer, that they found by mistake on a cat scan. They told me the lesion is 2cm in size. I can not get in to see the urologist until March 8th. The nurse told me I was safe to wait that this cancer was slow growing. Has anyone on here had to wait that long before they could have the surgery. I was told it would not be able to be removed lapro that I would have to have the incision surgery to remove the kidney. It is driving me insane to have to wait this long. Thanks ahead for your responses.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

lauelee, that's a tough break to have another cancer at 27! But, as you say, you're a survivor. This should be much easier because it's been caught very early and is very small. The nurse is talking sense. We're not doctors here but we have been through it. I had to wait 5 weeks for surgery and my tumour was 8cm. I'm recovering well, so far at least, so you shouldn't have too much to worry about and you have the benefit (?!) of having been there before and come through it.

We'll all be wishing you well and you can come here whenever you want to to ask questions, rub shoulders and get moral support. Stay active until you go in and try not to worry - easier said than done but your outlook is really pretty good. This is not a major problem but an irritating inconvenience that will be behind you soon.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Laurelee,
Waiting is really tough, but many of us here have had to wait for their surgeries. I waited for 6 weeks. It was a loooong 6 weeks, the longest of my life. That's a lot of time to think, but you are very fortunate that they found it so early, as am I. Mine was slightly larger than yours and also found by a CAT scan done for something else. They'll get rid of it and you'll be fine. You're a Hodgkin's survivor. Now you'll be a kidney cancer survivor.
Best regards,
Mike

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

Like most others on here, my RCC was discovered by accident, and I had to wait six weeks for surgery. So I had the same feelings, but the nurse is right, as research will tell you. Take comfort in that, keep digging for information, and stay in touch on this site. There are a lot of great folks on here.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Laurelee,

My RCC was also caught while looking for something else. I had to wait 4 weeks to the day after mine was caught. The waiting is the worst, but just find things to keep busy if you can. My family was all asking me to rest, (they were just worried) but I just had this nesting thing going on and caught up on tons of things I knew I might not get to for awhile, after the surgery. It helped to keep my mind off of things. Before you know it, the time will be here anyway. Take care.

Blessings,
Lisa

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi laurelee,

My son received his first treatment for Hodgkin's lymphoma on his 27th birthday, he is almost 33 now and runs marathons, you are about to embark on a different kind of marathon. You are obviously a fighter and I'm sure you understand the importance of maintaining a positive attitude, both will serve you well here. The waiting game can be very hard emotionally, try to concentrate on all the positive things you have going for you like youth, already a survivor, very early detection, very high cure rate without chemo or radiation (which I know you've had), and RCC is very slow growing. I am a bit surprised that at 2cm laprascopic and partial nephrectomy have been ruled out, your urologist may have different thoughts, but in any case make sure you get a good explanation. You have time to do research and build a list of questions, take advantage of that, it will pay dividends in the long run. There is an experience base of knowledge here so keep us posted and we'll help any way we can.

Good luck and Godspeed,

Gary

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hi-
I know how frustrating waiting can be. You are a proven survivor which is just awesome. RCC is slow growing in general. Is the urologist you are waiting for someone you prefer to see or are you able to get in somewhere else more quickly? The reason I ask is that you may need to wait an additional few weeks for whatever procedure follows your consultation. It's normal to want to get moving. This is a great placevto talk with others in your same situation. I had a radical neph on 1/9, a week ago today.

Scott

icemantoo's picture
icemantoo
Posts: 1595
Joined: Jan 2010

While many of us have had to wait a month or two for the surgery, this was after we met with the doctor doing the surgery.I waited some 9 weeks after diagnosis, 9 and 1/2 years ago. It sounds like you are in some sort of managed care which is still no excuse. Do your best to make yourself heard as you want to get this behind you,

Best wishes,

Icemantoo

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Lauralee
I didn't have to wait long to see my Urologist. But, i waited about a month to have surgery. Drove me
crazy! It's hard because you just want it out. Try and keep ourself xtra busy.
Take care
Valerie

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

Seems most people here have had to wait awhile from time of dx. To me, I'd use that time to do your research and to learn your options. I'd also use that time to be sure your doctor is the one you want. In my case my cancer was discovered as a result of severe pain and hematuria. Removal was just a couple days later. No time to freak out.

tom_in_VT
Posts: 25
Joined: Jan 2012

Laurelee
From what I am gathering, this type of cancer is something usually found incidentally. My experience was with sciatic nerve pain and the MRI revealed a ~4.5 cm tumor in my right kidney. I saw my urologist relatively quick, 1 week later(?) - he referred me to an orthopod for my sciatic pain. The urologist wanted me to get my the sciatic business in order b/4 cutting me so my wait was ~6 weeks, finding to surgery. I totally lost focus at work but confided in my manager very early, he has been very supportive. I believe that was the hardest part of the waiting, be able to focus on what had to get done. day to day stuff was completed by muscle memory, long term stuff was too fuzzy.
I have also taken solace in the thought that medicine has progressed so much in the past few decades and felt confident I was being directed appropriately.
Be strong Laurelee, everyone on this board knows your angst. Lean on your friends here and at home, we will standby with any help we can give.

Tom

antjeanne's picture
antjeanne
Posts: 13
Joined: Aug 2010

i waited 8 months since mine was discovered. i had 18 kidney stones in my other kidney(Which is how they found my RCC). and they had to wait for all them to come out before they could do all the testing to see if the mass was a cyst or cancer.

donna_lee's picture
donna_lee
Posts: 415
Joined: Feb 2009

What they found on the CT was Grrrrreat. Especially since most kidney cancers have such nebulous symptoms, that most of us found out we had kidney cancer when we saw a doctor or presented with some other problem.
Once mine was Dx'd at Stage IV, already spead to the liver and nodes, my surgery date was out 6 weeks, as it was a matter of coordinating 2 surgical specialists, a teaching hospital team, etc. The full surgery went well, I was home in 5 days, and recovered Ok.
Being vigilant about your tests and check-ups, as you well know, is important.

I had two recurrences of the kidney cancer, each time in a lymph node, each time in successive years following the first surgery, and each time found with a CT. It's not like the cancer came back-it just wasn't big enough to show at the first diagnoses.

So keep on having confidence in yourself that you can beat this one, too. Good luck. And yes, the waiting is hard.
This past fall, I went thru the Hurry Up and Wait when my regular CT found an enlarged thyroid and nodes in it. Next an ultrasound. Then wait 2 months for a nuclear thyroid scan, then wait for a biopsy, and the pathology. It wasn't cancer-benign nodes (that have been known to turn into cancer). And the likelyhood of it being Kidney mets was extremely rare...but it could have been thyroid cancer. Now I have thyroid tests on a regular basis.

Aren't we lucky that we live in an era that can test for some of these problems.
Hang in there.
Donna

keephopealive11's picture
keephopealive11
Posts: 21
Joined: Dec 2011

laurelee, I had the same question when I learned that I have a 6 cm kidney mass on Dec. 14. I am going have the laparoscopic on Jan 24 so it's about 6 weeks. Giving the size you have, I am wondering who made the recommendation for incision since you said that you haven't seen a urologist yet. Waiting is hard, but it also give you the time to seek different opinions. I have seen 4 different urologists, and finally found one that I feel really comfortable with. Don't just think about the convenience. You need to find the best, and make sure the urologist has lots of experience with kidney surgery. Good luck!

SushiSharon's picture
SushiSharon
Posts: 10
Joined: Jan 2012

Hi Lauralee. I am supporting your fight! I was admitted from the ER just yesterday with a pancreatitis/gastritis, and they found my kidney mass on CT incidentally. What a trend (!?) My mass is rather large at 8.4 cm and touching my spleen. They immediately cleared my chest x-ray to rule out metasasis. I was told I am a candidate for laparoscopic nephrectomy, unless the tumor involves my spleen. I'll bet you are as well. Waiting is hard, as I understand as well, but I am learning that this is a slow growing cancer. I still worry, mine being as large as it is, if it might just get to that breaking point in the mean time where it spreads....God bless all of you.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network