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holding off a few weeks for surgery

dramamama
Posts: 5
Joined: Mar 2012

I have just been diagnosed with stage I (3cm tumor) found accidently while looking for kidney stones, as I have a history with them and yes they found one in each kidney but also found the"shadow" which the MRI showed was a solid tumor. I am a teacher and have several major commitments to my students in the next few weeks so I am putting off the surgery for 7 weeks. Everyone I work with, my family and neighbors are all giving me a hard time about this decision. I felt very comfortable with my decision when I was speaking to the doctor about what needed to happen but now am having doubts because everyone acts like I am putting myself at risk. Anyone had experience with this issue?

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

Hi Dramamama,
Many of us had to wait for surgery (usually because of the doctor's schedule). I had to wait 6 weeks. I was told waiting that long was not a problem because kidney cancer grows so slowly. However, I would have preferred that they did surgery the next day. That's how badly I wanted it out of me. Seven weeks should not be the end of the world but if it were me, I would have it done sooner. But it's your choice after all.
Best of luck
Mike

dramamama
Posts: 5
Joined: Mar 2012

Thanks I guess it is everyone harassing me that has started me worrying. Yes the stress of waiting is a problem, but I have a lot of kids counting on me and they help keep my mind off the whole thing. Thanks for responding.
Virginia

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

Virginia, your life and your health are more important than your commitments to your pupils but, that said, you'd be very unlucky, with a comparatively small mass, if a few extra weeks made any difference. What are you reckoning to do about the kidney stones?

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

Sorry to hear you are now a member of our RCC family, but glad your tumor was found early. I originally planned to have my surgery in November of last year but ended up having it in January of this year instead. My tumor was the same size as yours. I wanted it out as soon as I was diagnosed, but My doctor said there was no urgency because it was such a slow grower. Hope this helps.

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

Hi Virginia,

I'm with Mike. I wanted that thing out of me asap and I too would have had surgery the next day if I could have. That being said, I did have to wait 4 weeks for my surgery appointment, so 7 weeks probably isn't that bad, but I still like to go with the old adage, "better safe then sorry". Given a vote/choice, I'll bet your students would rather you go in asap, rather then wait for their sake.

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Wait if you want to. In ten years, your kids will have just moved on. But any way....I love your name of Dramamama. Shows me you have a good sense of humor. It will go a long way!
Fox.

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

Yes, striking. My first thought was that GP had changed her name and then I wondered whether we'd gained a consultant from the sub-continent - Dr Amamama.

icemantoo's picture
icemantoo
Posts: 1512
Joined: Jan 2010

Dramamama,

Do you teach drama or do you want to be part of the drama? Mine was 2.6cm on the CT and 4.2 cm when they took it out 8 weeks later. Did it grow? Who knows. The MRI and CT are 4 dimensional and not always accurate. In order to avoid any drama in your life get it out ASAP. The students will do fine in any event. Your surgery and prognosis is the most important thing. Thats my 2 cents worth.

Best wishes no matter what you choose,

Icemantoo

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

Dramamama,

Great moniker by the way. You have to do what makes you the most comfortable, RCC is slow growing and 7 weeks is not a terribly long time. That said, you need to realize that you are rolling the dice and IF it spreads you will always wonder if. This is much more manageable when caught and dealt with early.

Good luck and Godspeed,

Gary

dramamama
Posts: 5
Joined: Mar 2012

Actually I teach drama and music and the commitment that I feel I must fulfill is a trip to NYC with the Jazz choir that over $30,000.00 has been spent on and it is too late to cancel and get a refund. I am the only staff member going (Lots of parents) and I am the only chorus teacher and the group is performing while on the trip. So I guess I can only hope that slow growing is slow growing. Thanks for all your replies.

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

My bet is that you'll be fine and that your students will never forget what you're doing for them.

Break a leg! Then have the op and get well soon with brilliant memories of an unforgettable trip.

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

dramamama,

Have a great trip and don't forget to enjoy yourself. In your shoes I'd probably make the same choice, at 3.0cm you are catching it very early.

Keep us posted,

Gary

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

DM - you determine your priorities. I am told of a renal vein invasion from a 2.5 cm tumor, so although I think Gary/Tex are right, there are always exceptions. I waited from 11/28 to 1/19 - considering holidays, finding the right doctor...but who knows ? They put me at stage 3.

I am not saying you change your decision, but while you are breaking a leg, at the bottom of your mind, will remain the truth of this situation, if you can handle it, fine. You need to see the pathology report to know what's in there, than can only happen once you remove the tumor.

My vote - get it out, the world can wait.

R.

j_rod
Posts: 125
Joined: Mar 2012

IN September of 2011 I had pain in my abdomen. The doctor did a ct scan. It picked up a 'worrisome' mass at the lower pole on my right kidney and a possible spot on my lung. A second ct scan of the lung and an ultrasound of the kidney showed the same result.He told me to get a pulmonary doctor first. Which i did. He did a pet scan and nothing lit up. He then did a broncoscopy - the results were negative for cancer. He referred me to a urologist. By now, it was November. The urologist referred me to the radiology interventionist. He and I decided to do a biopsy. This was on Dec. 30. It was positive for papillary cancer. He referred me to a specialist in Chicago. That appointment was on Feb. 1, 2012. He set my surgery for March 27. He called me two weeks ago after I had my pre-op blood tests and xrays and resceduled for April 3. My tumor is 3.0 cm. I was already on the 'count down' til my surgery and like the others, I just wanted it out of me and to have this done and over with. Then I freaked out a little when it was rescheduled. But as others pointed out to me, it may be a good sign that they pushed it back - meaning it isn't urgent. I probably would have freaked out more if they would have called and said 'get in here tomorrow'. I have a well-reknowned Dr.and have been told I am in good hands. He is tops in his field. You should be ok if your doctor says so. I have been waiting since Sept. to find out what is going on and now to get rid of it. I, too, am a teacher and I am putting on a play today. I do the costumes, so if I had had the surgery right away, I wouldn't have fulfilled my obligation. Good luck.

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

My discussion earlier today with a highly expert consultant, following a board discussion of my case yesterday among a substantial team including a renal oncologist, radiologist and others, may be of interest to some here.

The Consultant (the associated medical school was recently rated number one in the UK) commented that these days the policy is not to routinely operate on tumours smaller than 3cm. It is well known that the human body constantly generates tumours which are effectively coped with and eliminated by the immune system {strangely, I recall writing something to a similar effect on a thread here only the other day}. The intelligent approach is therefore, in most cases, to watch an identified tumour for a period without engaging in probably gratuitous invasive procedures. Some tumours will disappear completely, some will shrink, some will remain the same size for years with no indication of malignancy. Should there be signs of adverse developments, and certainly if the tumour changes, e.g. by becoming larger, then surgical intervention is called for.

That highly informed commentary may make the decision more comfortable for the likes of dramamama and offer some solace to Raj about the "pseudotumour" that was not reported to him for a couple of years, although it was plainly wrong that he was not informed and given the opportunity to make the decision himself as to how to react to the discovery. (Since in Raj's case the path report showed grade 3 it seems to me unpardonable that he was not informed earlier.)

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

Hi Tex,

While I agree that dramamama is making the right decision to hold off on surgery for a couple of months, I'm not certain it is wise to leave these masses unattended until they reach 3cm (assuming they are discovered earlier). Having had a partial nephrectomy for a 1.9 cm malignant tumour, I'm very relieved to have had it taken out at Stage 1 (Grade 2).

My urologists said it would be perfectly safe for me to wait and check the complex cyst in my upper left kidney in 6 months. Based on my MRI and CT scan, my differential diagnosis was oncocytoma with no indication of malignancy (it didn't turn out to be as innocent as it looked). While it is possible that I could have lived much longer with the tumour without risk of spread, I was already experiencing extreme fatigue -- a symptom that has disappeared since my surgery. That tells me there was something systemic going on. Do these tumours really just disappear spontaneously?

In terms of dealing with the stress and uncertainty of learning that I had cancer, it really helps me to know that they got it early and that it was fully encapsulated. And of course what happened to Raj was unconscionable.

I really hope your board discussion went well and that you have found a good strategy for managing your own care as well. It sounds like you have the best of the best on your side.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Just to be the devils advocate here. I was diagnosed and had nephrectomy last March. Clear scans in May. By October mets were in lungs and liver. 15 or so. By December, mets in pelvis and spine. So ,I say get things taken care of pronto. Glad I qualified for the MDX and began treatment in December, but what if I could have started last march?

j_rod
Posts: 125
Joined: Mar 2012

I was interested in your comment about extreme fatigue. I have been sooooooo tired. Since I get up at 5 am, I have had a policy of going to bed at 9 to get my 8 hours. I was finding my bed time inched up to 8 o'clock, then 7 o'clock. Then I found that when I got home from work, I just wanted to skip supper and go to bed. I had a feeling that this small tumor might have something to do with it. Also, I am just lethargic, when I am awake I have no get up and go. Can't seem to get anything done. I teach junior high students, but I have done for 15 years. I used to go in on the weekend to organize for the week, but can't seem to get motivated anymore. On the weekends, I sometimes sleep 10 to 12 hours on Friday night. Often a nap on Sat. or Sun. Bottom line, I am tired of being tired. Just a year ago I taught school during the day and had a part time job at night and on weekends and still kept it all together. I am hopeful with your post that I will get my energy back!

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

Hi j-rod,

Yes, the fatigue was highly unusual for me too and is what ultimately sent me to the doctor. I walked in and told her I was embarrassed to be taking up her time because I wasn't sick, just way too tired. She was wonderful and told me I was absolutely right to have come. I had blood work done and requested an abdominal CT scan at the same time (I just had this idea I couldn't shake that there was a tumour somewhere). I did in fact have low iron, but that is normal for me. I received a total dose iron infusion, which helped a little, but didn't take away the fog from my brain.

I am four weeks post-surgery now, and although still recovering, feel as bright as a button. I hope (and believe) you will have the same positive outcome.

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

These are both things most of us have to contend with after what we've been through (though I must admit I've never had either, for which I'm very thankful) but, j_rod, I'd have thought what you're suffering is serious enough to call for serious professional help.

Sleep is an intriguing and important topic. My Daughter recently drew my attention to a fascinating item on the BBC World Service which I reckon might interest most of us here:-

http://www.bbc.co.uk/news/magazine-16964783

It's entitled "The Myth of the eight-hour sleep" and I think the message in it could save a lot of people a lot of time, a lot of anxiety and a lot of unnecessary ill-health.

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

"Billy" girl, I guess I ought to clarify a couple of points in what I said above. It's not suggested that anyone should wait for a small tumour to reach 3cm. On the contrary, if a tumour is seen to be growing or showing other signs of change, that indicates that it's time for intervention. Your extreme fatigue was another such sign meriting investigation.

The argument is that if a small mass is observed (by chance, say) when asymptomatic and displaying no signs of malignancy, it should simply be watched, rather than precipitate surgical intervention being undertaken. If it then disappears or shrinks, great. If it remains unchanged in size then continued observation is indicated.

It's also not suggested that all small tumours will simply vanish spontaneously, just that it is observed that a certain number of them actually do just that.

It seems unnecessary to say that proceeding as advocated saves a lot of unnecessary suffering, anxiety and grief for patients, family and friends alike, saves a huge amount of expensive medical time, work and use of expensive technical resources, and also lost work time (and possibly even their jobs) for patients. Instead of wasting scarce resources and causing gratuitous suffering, those resources can be deployed where they are genuinely needed and, ironically, the waiting times for those who have a real need of surgery will be reduced.

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

Tex you always make me laugh!

I have to tell you that I have incredible respect for the time and energy you devote to providing excellent factual information to the cancer survivors on this board, both in areas related to your own case and in areas of concern to others, not to mention your inimitable sense of humour). How do you manage it around your golf schedule? I have learned a tremendous amount about a subject that, a few short weeks ago, I happily knew absolutely nothing about. I completely understand the rationale of watching and waiting now (& sure wish my tumour could have vanished spontaneously!). I feel humbled in the presence of the members on this board who share truly inspirational stories and facts in comparison to my own extremely limited experience as a four-week Stage 1 survivor.

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