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Newbie awaiting operation...

j_rod
Posts: 125
Joined: Mar 2012

Hi! I had my cancer diagnosed incidentally. I had severe abdominal pain. Went to my doctor. He ordered a CT scan on9/23/11. Said I had diverticulitis so severe and he said it was infected. Gave me some antibiotics to clear it up. Told me to come back in a few days for a couple of 'things' on the CT scan - nothing to worry about. Of course, this all happened on a Friday - so I worried all weekend until I saw him on Tuesday. He told me the CT scan picked up a mass on my kidney and one in my lung. He recommended a second Ct scan of the lung and an ultrasound of the kidney. The results were the same. There was a (relatively) small (2.5 cm) 'worrisome' mass in the right lower pole of the kidney. There was a 3.0 mass in the lung - 'possible lymph node'. He told me to find a pulmonary doctor. I did. He ordered a PET scan. It came back all organs normal and no reactive uptake. Whew! I dodged a bullet. Then he did a bronchoscopy with a lavage. Again, normal with no cancer cells present. Whew! Dodged another bullet. Then on to the urologist. Who sent me to a radiology interventionist. He did a biopsy on 12/30/11. It was positive for papillary cancer - low grade and low stage - about 1 inch. The urologist gave me options. He suggested a 'buddy' of his at a university hospital who could do a laproscopic partial nephrectomy. I went to this doctor two weeks later (2/1/12)from getting the results of the biopsy (it was his first available opening- he is in high demand) and set up an appointment for the operation on 3/27/12, pre-op tests, and post-op follow up. So, I had to wait almost two months. I was counting down the days. Then, his office called and cancelled the operation and rescheduled for a week later on 4/3/12. I am concerned because I am afraid the cancer will grow or mestastisize (sp). Should I be worried with low grade low stage Type I papillary cancer? Should I find another place to take care of this?

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

A week is not a big deal for that size, 0% risk is not possible even in a nano second, and the risk cannot be quantified beyond words - i.e. low.

How do they know grade for certain ? Biopsies are known to be wrong for RCC.

Just IMHO.

R

icemantoo's picture
icemantoo
Posts: 1878
Joined: Jan 2010

j_rod,

Not fun that wait from diagnosis to surgery. I waited 2 months. The good news is that if they were worried about it speading they would have had you in on an emergency basis ASAP.

Best wishes,

Icemantoo

j_rod
Posts: 125
Joined: Mar 2012

Thanks for the encouragement - I needed it.

j_rod
Posts: 125
Joined: Mar 2012

The grade is its size (less than 4.0 cm) and the stage is I (no other lymph nodes or tissues involved, no metastisizes (sp). That is how it was explained to me. Thanks for the reply.

j_rod
Posts: 125
Joined: Mar 2012

i

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Stage is different from grade, and both can only be determined accurately only after surgery and pathology report. Don't freak out, mostly they are right, in my case they proved to be wrong, went from stage 1 before surgery to stage 3 after, they saw a renal vein invasion, which is hard to see in CT etc. But, MOSTLY, they are right.

j_rod
Posts: 125
Joined: Mar 2012

I get scared when i read your posts. I guess in the back of my mind I think about the possibility that it might be worse than what they see. I try to stay positive and whenever someone ask me how it is going, I tell them it is the best of the best scenarios and that I will be just fine. I have kept a positive front, but at home I worry. I just buried my mother about a year ago who had cancer discovered in May of '10 and died in Dec of '10. I took care of her and watched her suffer. Just 5 years before that, my dad died of cancer. He survived for 5 years. Every time they found a spot, the operated. First his bladder, kidney - next, 2/3 of his lung - next, part of his liver. Then it went to his brain and after radiation,which was unsuccessful, he died. My mother was stage 4 when it was discovered - it was everywhere. She went through radiation for the brain tumors and then began chemo before a doctor said that to have quality of life, she should discontinue chemo and have palitive care. I am too close to just burying her. And I am too young to think the worst, I guess, for myself. I hope the doctors are right in my case.

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi j_rod,

It's perfectly normal and okay to be scared -- I was (& am still a rather shaken to be honest). Two weeks ago I had a Stage 1 Grade 2 1.9 cm papillary RCC removed from my upper left kidney. My doctors told me I could wait another 6 months and check it again if I wanted to. They said these are very slow growing masses and removal wasn't urgent at all. It could have been there for years already. 2.5 cm is still very small -- it shouldn't be dangerous for you to wait another week. It's just hard emotionally once you just want to get it over with.

I tried to do some really fun activities before my surgery to keep my mind off things and because I knew I would have some down time afterwards while recovering. Maybe that would help you too. Am in my "down time" now but sure wish I were skiing! :-) Just a few more weeks...

j_rod
Posts: 125
Joined: Mar 2012

... and suggestion to have fun before the surgery. I keep thinking I'll have it done and over with and go right back to work. The doctor's office told me I need 4 weeks to recuperate. I am the type that thinks I can 'overacheive' and recuperate in less time than they say. But from the posts i've been reading, I think I better ask for one more week off. The operation is now set for April 3. I planned on being back to work on April 17. I am a junior high teacher. The doctor's office recommended another week off. They said they had an accountant who had a desk job go back after two weeks. They asked if I sat at my desk. The answer is "No". I am on my feet all day. For anyone who reads this, what do you think? I am 53 - and I am already tired after a day with these emotionally high and low adolescents. Thanks to everyone who replys.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

JR - Forgive me if you can, if I scare you, but I would rather be a medium that scares you, v/s expose you to unknown risks. I am very scared myself, but there is NOTHING I can do, except try and live a healthy life.

You cannot make any assumptions, people believe, but they don't know based on evidence, and you cannot overestimate the power of your mind over matter.

I am myself struggling with a difficult diagnosis, and a difficult prognosis, so maybe that fear spilled over to you, I am sorry for that.

But, please do not take this lying down. We are all scared, it is a scary thing, very scary, but, now it's the known devil. There are many out there with unknown devils.

So, be as aggressive as you can. Do all you can.

R

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

Hi J_rod,

I had RCC and it was about the same size as yours. Mine was also found because I had a diverticulitis attack. I had the attack on June 22, 2011 and surgery for a partial left nephrectomy on July 22. Everyone is different, but I was amazed at how fast I recovered. I was outside scrubbing off the porch and preparing (by myself) for a couples wedding shower for my son and DIL. I'm not going to lie, the surgery and the first couple days after were not pleasant, but I can think of a lot worse things to go through.

The waiting for the surgery date was just about the worst thing for me and like other's said, I too kept myself really busy to pass the time. Before you know it, it will be in the past. Take care.

Blessings,
Lisa

icemantoo's picture
icemantoo
Posts: 1878
Joined: Jan 2010

j_rod,

If you have the option to take another week off, do it. While you no doubt should be able to handle your job as a teacher 4 or 5 weeks after surgery, the question is can you handle it 8 hours a day and 40 hours a week.

Best wishes,

Icemantoo

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

Oops, I meant to say I was scrubbing the porch 3 weeks after surgery. Just thought I'd better clarify that in case someone thought I just jumped out of bed after surgery and was scrubbing a porch at the hospital that same day. LOL

foxhd's picture
foxhd
Posts: 2258
Joined: Oct 2011

I vote for time off. You may not be a laborer by definition but you will tire. If you do feel good and recover quickly, consider it "me time". Do anything you like. Or nothing. You deserve it. You'll be back to work soon enough.

j_rod
Posts: 125
Joined: Mar 2012

Thanks everybody for the support and the information. I would be at a loss without it. Thanks again.

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