holding off a few weeks for surgery

dramamama
dramamama Member Posts: 5
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?
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Comments

  • MikeK703
    MikeK703 Member Posts: 235
    Waiting
    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
    dramamama Member Posts: 5
    MikeK703 said:

    Waiting
    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

    Waiting
    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
    Texas_wedge Member Posts: 2,798
    dramamama said:

    Waiting
    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

    Waiting
    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
    JackieP125 Member Posts: 56
    dramamama said:

    Waiting
    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

    Waiting
    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
    LISAinTN Member Posts: 143
    Hi
    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
    foxhd Member Posts: 3,181 Member
    LISAinTN said:

    Hi
    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

    waiting
    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
    Texas_wedge Member Posts: 2,798
    foxhd said:

    waiting
    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.

    waiting
    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
    icemantoo Member Posts: 3,361 Member

    waiting
    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.

    Drama,
    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
    garym Member Posts: 1,647
    icemantoo said:

    Drama,
    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

    Bottom line...
    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
    dramamama Member Posts: 5
    icemantoo said:

    Drama,
    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

    Actually I teach drama and
    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
    Texas_wedge Member Posts: 2,798
    dramamama said:

    Actually I teach drama and
    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.

    NYC trip
    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
    garym Member Posts: 1,647
    dramamama said:

    Actually I teach drama and
    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.

    NYC...
    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
    livealive Member Posts: 127
    garym said:

    NYC...
    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

    Personally speaking
    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
    j_rod Member Posts: 125
    livealive said:

    Personally speaking
    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.

    waiting
    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
    Texas_wedge Member Posts: 2,798
    j_rod said:

    waiting
    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.

    Waiting - surgery or surveillance
    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
    One Lucky Girl Member Posts: 68

    Waiting - surgery or surveillance
    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.)

    1.9 cm malignant
    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
    foxhd Member Posts: 3,181 Member

    1.9 cm malignant
    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.

    waiting
    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
    j_rod Member Posts: 125

    1.9 cm malignant
    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.

    Hi OLG
    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
    One Lucky Girl Member Posts: 68
    j_rod said:

    Hi OLG
    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!

    Fatigue
    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
    Texas_wedge Member Posts: 2,798

    Fatigue
    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.

    Anaemia and fatigue
    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.