Big decision

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Location NY
    Another plus for you - you couldn't be in many better places than NY for access to expert advice and care (although one of the world's top laparoscopic surgeons, trained in Dundee, Scotland, now works in a specialist facility in India!).

    The domain of RCC, as I'm sure you've already researched, is very complex, analogue and multi-factorial but the fact that you were a programmer doesn't mean you're condemned to think in binary! What will you be working at in future? I'm sure you'll do well, whatever it is.

    Misleading information
    One Lucky Girl, thanks for the narrative. My first thought when I read your previous message was that it sounded like someone protecting their turf but I dismissed the idea, thinking that no-one could be so venal, irresponsible and, most of all, so stupid. I still think that being so mercenary and behaving so criminally in deceiving a patient whose best interests should have been their primary consideration is really shocking, but I've re-considered the stupidity aspect, for the reason I'm giving below.

    If English is not your first language, I must say I'm mightily impressed with your command of it. However, your mindset is a very familiar one to us in the UK - not wanting to complain, particularly with our prized NHS for which we have so much to be thankful. However, there are times when one ought to complain. The medics who so blatantly deceived you were amazingly complacent in not supposing that they would be found out but they don't seem to be so stupid if they can trade successfully on decent peoples' reluctance to complain. We can't know how many past patients' trust they have sold out and how many more they may get away with duping if they aren't stopped.

    I don't want to lay an undue moral burden on you but don't you think you owe it to others less intelligent than yourself, who aren't smart enough to handle it the way you have, to help to put an end to such gross professional misconduct?

    I'm delighted you're doing so well and probably cured once and for all. You're now in excellent hands (including your Husband in this) and not subject to any recriminations. The good guys would like you to register a formal complaint to help maintain the integrity of their profession and to protect future patients form the bad guys who will quite possibly keep getting away with it if someone well placed to do so doesn't blow the whistle.
  • newenglandguy
    newenglandguy Member Posts: 66

    Misleading information
    One Lucky Girl, thanks for the narrative. My first thought when I read your previous message was that it sounded like someone protecting their turf but I dismissed the idea, thinking that no-one could be so venal, irresponsible and, most of all, so stupid. I still think that being so mercenary and behaving so criminally in deceiving a patient whose best interests should have been their primary consideration is really shocking, but I've re-considered the stupidity aspect, for the reason I'm giving below.

    If English is not your first language, I must say I'm mightily impressed with your command of it. However, your mindset is a very familiar one to us in the UK - not wanting to complain, particularly with our prized NHS for which we have so much to be thankful. However, there are times when one ought to complain. The medics who so blatantly deceived you were amazingly complacent in not supposing that they would be found out but they don't seem to be so stupid if they can trade successfully on decent peoples' reluctance to complain. We can't know how many past patients' trust they have sold out and how many more they may get away with duping if they aren't stopped.

    I don't want to lay an undue moral burden on you but don't you think you owe it to others less intelligent than yourself, who aren't smart enough to handle it the way you have, to help to put an end to such gross professional misconduct?

    I'm delighted you're doing so well and probably cured once and for all. You're now in excellent hands (including your Husband in this) and not subject to any recriminations. The good guys would like you to register a formal complaint to help maintain the integrity of their profession and to protect future patients form the bad guys who will quite possibly keep getting away with it if someone well placed to do so doesn't blow the whistle.

    Sharman - growth rates very
    Sharman - growth rates very and so does the Furhman grade, assuming it's a malignant tumor. Did the Uro actually saw tumor or cyst. If a cyst (I'd myself ask for the Radiologist's write-up, ask the Uro for it's Bosniak scale. That is very important if thought to be a cyst. I would also get a second opinion, and by a Nephrologist and not another Urologist. Just my $0.02.
  • One Lucky Girl
    One Lucky Girl Member Posts: 68

    Misleading information
    One Lucky Girl, thanks for the narrative. My first thought when I read your previous message was that it sounded like someone protecting their turf but I dismissed the idea, thinking that no-one could be so venal, irresponsible and, most of all, so stupid. I still think that being so mercenary and behaving so criminally in deceiving a patient whose best interests should have been their primary consideration is really shocking, but I've re-considered the stupidity aspect, for the reason I'm giving below.

    If English is not your first language, I must say I'm mightily impressed with your command of it. However, your mindset is a very familiar one to us in the UK - not wanting to complain, particularly with our prized NHS for which we have so much to be thankful. However, there are times when one ought to complain. The medics who so blatantly deceived you were amazingly complacent in not supposing that they would be found out but they don't seem to be so stupid if they can trade successfully on decent peoples' reluctance to complain. We can't know how many past patients' trust they have sold out and how many more they may get away with duping if they aren't stopped.

    I don't want to lay an undue moral burden on you but don't you think you owe it to others less intelligent than yourself, who aren't smart enough to handle it the way you have, to help to put an end to such gross professional misconduct?

    I'm delighted you're doing so well and probably cured once and for all. You're now in excellent hands (including your Husband in this) and not subject to any recriminations. The good guys would like you to register a formal complaint to help maintain the integrity of their profession and to protect future patients form the bad guys who will quite possibly keep getting away with it if someone well placed to do so doesn't blow the whistle.

    Small community
    Hi Texas_wedge,

    I grew up in the medical community (my father, uncles, brothers were/are all surgeons, mother, sister, aunts were/are health professionals). It's a very close-knit one and an influential one.

    Having to go literally knocking on doors (instead of being referred) with a possible cancer diagnosis was one of the most stressful experiences I have ever been through. I arrived at the final Urology centre in a flood of tears, pictures in hand and no appointment. The staff was wonderfully compassionate and looked right after me. When I told my doctor of my experiences, his expression was thunderous. Standards at this hospital are extremely high. You can rest assured that this will be dealt with in no uncertain terms.

    Having just had surgery and received a cancer diagnosis two weeks ago, I prefer that they proceed without me at the centre of it. I just need a hug :-).
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Small community
    Hi Texas_wedge,

    I grew up in the medical community (my father, uncles, brothers were/are all surgeons, mother, sister, aunts were/are health professionals). It's a very close-knit one and an influential one.

    Having to go literally knocking on doors (instead of being referred) with a possible cancer diagnosis was one of the most stressful experiences I have ever been through. I arrived at the final Urology centre in a flood of tears, pictures in hand and no appointment. The staff was wonderfully compassionate and looked right after me. When I told my doctor of my experiences, his expression was thunderous. Standards at this hospital are extremely high. You can rest assured that this will be dealt with in no uncertain terms.

    Having just had surgery and received a cancer diagnosis two weeks ago, I prefer that they proceed without me at the centre of it. I just need a hug :-).

    Thank you for taking the trouble to give that reply which is very cheering and reassuring. After what you've been through, you certainly deserve, and I'm sure need, some peace for recuperation. I wish I could be there to give another hug but please consider yourself hugged remotely!
  • garym
    garym Member Posts: 1,647

    Thank you for taking the trouble to give that reply which is very cheering and reassuring. After what you've been through, you certainly deserve, and I'm sure need, some peace for recuperation. I wish I could be there to give another hug but please consider yourself hugged remotely!

    Hug from afar...
    Please add another hug from across the pond. You may not think so, but in my book you are one strong lady!
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    garym said:

    Hug from afar...
    Please add another hug from across the pond. You may not think so, but in my book you are one strong lady!

    Hugs received -- thank you so much :-)
    My dog is doing her happy dance now because we're headed out for a nice long walk in the sunshine :-).
  • foxhd
    foxhd Member Posts: 3,181 Member

    Hugs received -- thank you so much :-)
    My dog is doing her happy dance now because we're headed out for a nice long walk in the sunshine :-).

    hug
    Here's my hug and a kiss on the forehead. xxx
    FLY..Fox loves you.
  • livealive
    livealive Member Posts: 127

    Location NY
    Another plus for you - you couldn't be in many better places than NY for access to expert advice and care (although one of the world's top laparoscopic surgeons, trained in Dundee, Scotland, now works in a specialist facility in India!).

    The domain of RCC, as I'm sure you've already researched, is very complex, analogue and multi-factorial but the fact that you were a programmer doesn't mean you're condemned to think in binary! What will you be working at in future? I'm sure you'll do well, whatever it is.

    laparoscopic surgeons, trained in Dundee, works in India ?
    TW - can you give out his name ?
    Also, is there a way to communicate only with certain members v/s posting as an open blog ?
    Thx.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    livealive said:

    laparoscopic surgeons, trained in Dundee, works in India ?
    TW - can you give out his name ?
    Also, is there a way to communicate only with certain members v/s posting as an open blog ?
    Thx.

    Private messages
    rhjaisingh,

    Any member may send a private message to another member using CSN email on the upper left.

    Icemantoo
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    livealive said:

    laparoscopic surgeons, trained in Dundee, works in India ?
    TW - can you give out his name ?
    Also, is there a way to communicate only with certain members v/s posting as an open blog ?
    Thx.

    Lap surgeons Dundee -> India
    Mr. Jai, I have endeavoured to send you information by private email message using the CSN Email but I got the message:

    rhjaisingh does not accept private messages.

    I guess you will need to set up the access to enable me to do so. Go to http://csn.cancer.org/help#email for details.

    If you're keen to get the info asap I can post it here - there's nothing sensitive and other members here will have no objection if I do so - readers can ignore anything of no interest to them. Please confirm if you would like me to do so and you can then set up private email at your leisure.
  • sharnan
    sharnan Member Posts: 10

    Just fatigue
    Hi Sharnan,

    So glad you are getting another opinion. If possible, try to get a referral to a urologist who does laparoscopic procedures for an evaluation (maybe you can research who does that in your region). With such a small mass, it's entirely possible he/she could remove the cyst with a margin and save your kidney (of course, that can also be done with open surgery but it's a much bigger surgery). My only symptom was fatigue and a strange idea in my head that I needed a CT scan. Never would have thought in a million years that something was wrong with my kidney.

    I wish you all the best with your consultations. Please keep us posted.

    2nd opinion
    Hi One Lucky Girl and everyone
    Well, I have made an appointment for a second opinion for the 16th April. I know deep down that it is something that I had to do to satisfy myself. So have been madly making copies of all my reports to take.
    One Lucky Girl, it is a solid mass I have not a cyst,and that is what scares me the most.
    I will let you know how I go in a few weeks. So nice to say a few weeks instead of waiting for my next scan in August from my other Dr.
    Take care .....
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    sharnan said:

    2nd opinion
    Hi One Lucky Girl and everyone
    Well, I have made an appointment for a second opinion for the 16th April. I know deep down that it is something that I had to do to satisfy myself. So have been madly making copies of all my reports to take.
    One Lucky Girl, it is a solid mass I have not a cyst,and that is what scares me the most.
    I will let you know how I go in a few weeks. So nice to say a few weeks instead of waiting for my next scan in August from my other Dr.
    Take care .....

    Great news
    Hi Sharnan,

    I think it's great that you are getting a second opinion in a few weeks. You may want to ask if you are a candidate for a partial instead of a full nephrectomy (that way you get rid of the tumour but keep your kidney) and whether a laparoscopic procedure would be suitable (much less invasive and shorter recovery period). I hope this consultation goes really well for you but do make sure you are comfortable with the urologist and trust his/her advice. Please let us know how it goes.
  • kkayball
    kkayball Member Posts: 3
    kidney tumor info
    Hello,,,easiest way to say this is its your decision,,,I just had my kidney removed last week on march 28th,,,,I so felt the same way you do now,,,never looked on here because ddi not know it was cancer till removed,,,Mine was found incidenetly on an MRi scan,,,at the time was 1.9cm that was last august 2011,,,they also said the same we will just watch it,,,I also did not want the tumor inside me made more worry than not,,,,however follow up cat scan in november showed stable,,,so I thought great,,,specialist said lets wait til June and see how it is doing,,,,In Febuary however kept telling primary doc...I don't feel well...only symptem I really ever had was being tired and I dont' kn ow if from all the worry that is ws there or the tumo, i felt even more tired....so my local doc ordered another cat scan...it had grown to 4cm....my doc didi not hesitate at that time....we removed the kidney....mine was deep inthe renal cortex so was the only option...there are to many complications to just remove the tumor,,,,Once removed its no different thatn a kidney doar giving one up for a transplant....Thye doen mine laproscopically in Indinapolis at IU Med cENTER...dR, SUMADRU was awesome....mine turned out to be clear cell carcinoma....so I was grateful we removed it...Thye typically wont remove kidney until its over 3cm....keeping watchful eye is very important ...every 3 months cat scan is safer thatn every 6 months for sure...the only way to know what it is growing in there is to have it removed unfortunately....good luck and if you have any questions feel free to ask......your welcome to anytime,,,tracey ball
  • sharnan
    sharnan Member Posts: 10
    kkayball said:

    kidney tumor info
    Hello,,,easiest way to say this is its your decision,,,I just had my kidney removed last week on march 28th,,,,I so felt the same way you do now,,,never looked on here because ddi not know it was cancer till removed,,,Mine was found incidenetly on an MRi scan,,,at the time was 1.9cm that was last august 2011,,,they also said the same we will just watch it,,,I also did not want the tumor inside me made more worry than not,,,,however follow up cat scan in november showed stable,,,so I thought great,,,specialist said lets wait til June and see how it is doing,,,,In Febuary however kept telling primary doc...I don't feel well...only symptem I really ever had was being tired and I dont' kn ow if from all the worry that is ws there or the tumo, i felt even more tired....so my local doc ordered another cat scan...it had grown to 4cm....my doc didi not hesitate at that time....we removed the kidney....mine was deep inthe renal cortex so was the only option...there are to many complications to just remove the tumor,,,,Once removed its no different thatn a kidney doar giving one up for a transplant....Thye doen mine laproscopically in Indinapolis at IU Med cENTER...dR, SUMADRU was awesome....mine turned out to be clear cell carcinoma....so I was grateful we removed it...Thye typically wont remove kidney until its over 3cm....keeping watchful eye is very important ...every 3 months cat scan is safer thatn every 6 months for sure...the only way to know what it is growing in there is to have it removed unfortunately....good luck and if you have any questions feel free to ask......your welcome to anytime,,,tracey ball

    Thank you Tracey
    Hi Tracey,
    I was going to put all my faith in the specialist I had and just do what he said "watch and wait" but last time I was there I asked him what happens if it hasn't grown at the August scan. He said he would start spacing the visits out more, meaning they would not be done at 6 months but with longer times in between.
    As I know this is a solid lesion I was not happy with that answer, hence my going for a 2nd opinion on the 18th April (not 16th as I previously wrote) so just 2 weeks to wait instead of waiting until August for another US.
    It certainly is not a nice feeling knowing something is inside you that should not be there.
    Thank you for telling me your story and I will certainly let you know how I get on with the 2nd opinion.
    Talk soon and thank you again,
    Rose
  • sharnan
    sharnan Member Posts: 10
    kkayball said:

    kidney tumor info
    Hello,,,easiest way to say this is its your decision,,,I just had my kidney removed last week on march 28th,,,,I so felt the same way you do now,,,never looked on here because ddi not know it was cancer till removed,,,Mine was found incidenetly on an MRi scan,,,at the time was 1.9cm that was last august 2011,,,they also said the same we will just watch it,,,I also did not want the tumor inside me made more worry than not,,,,however follow up cat scan in november showed stable,,,so I thought great,,,specialist said lets wait til June and see how it is doing,,,,In Febuary however kept telling primary doc...I don't feel well...only symptem I really ever had was being tired and I dont' kn ow if from all the worry that is ws there or the tumo, i felt even more tired....so my local doc ordered another cat scan...it had grown to 4cm....my doc didi not hesitate at that time....we removed the kidney....mine was deep inthe renal cortex so was the only option...there are to many complications to just remove the tumor,,,,Once removed its no different thatn a kidney doar giving one up for a transplant....Thye doen mine laproscopically in Indinapolis at IU Med cENTER...dR, SUMADRU was awesome....mine turned out to be clear cell carcinoma....so I was grateful we removed it...Thye typically wont remove kidney until its over 3cm....keeping watchful eye is very important ...every 3 months cat scan is safer thatn every 6 months for sure...the only way to know what it is growing in there is to have it removed unfortunately....good luck and if you have any questions feel free to ask......your welcome to anytime,,,tracey ball

    Thank you Tracey
    Hi Tracey,
    I was going to put all my faith in the specialist I had and just do what he said "watch and wait" but last time I was there I asked him what happens if it hasn't grown at the August scan. He said he would start spacing the visits out more, meaning they would not be done at 6 months but with longer times in between.
    As I know this is a solid lesion I was not happy with that answer, hence my going for a 2nd opinion on the 18th April (not 16th as I previously wrote) so just 2 weeks to wait instead of waiting until August for another US.
    It certainly is not a nice feeling knowing something is inside you that should not be there.
    Thank you for telling me your story and I will certainly let you know how I get on with the 2nd opinion.
    Talk soon and thank you again,
    Rose
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    sharnan said:

    Thank you Tracey
    Hi Tracey,
    I was going to put all my faith in the specialist I had and just do what he said "watch and wait" but last time I was there I asked him what happens if it hasn't grown at the August scan. He said he would start spacing the visits out more, meaning they would not be done at 6 months but with longer times in between.
    As I know this is a solid lesion I was not happy with that answer, hence my going for a 2nd opinion on the 18th April (not 16th as I previously wrote) so just 2 weeks to wait instead of waiting until August for another US.
    It certainly is not a nice feeling knowing something is inside you that should not be there.
    Thank you for telling me your story and I will certainly let you know how I get on with the 2nd opinion.
    Talk soon and thank you again,
    Rose

    Second opinion
    Rose, the second opinion will be very interesting to hear about.
    Presumably the radiologist has advised your urologist that the lesion is a solid one, which is why you are concerned. If it weren't solid then continuing surveillance would doubtless be the best course. However, if it is solid then the following remarks from the abstract of a recent study support your thoughts on the subject:

    PURPOSE: We characterized the clinicopathological features and the prognosis of small solid renal tumors defined as tumors 4 cm or smaller.
    MATERIALS AND METHODS: We identified 1,208 patients who were treated with nephrectomy at 5 international academic centers for small solid renal tumors. Clinicopathological parameters and outcome data were collected for each patient and analyzed.

    The informative conclusion from this study is given in these terms:

    CONCLUSIONS: More than 85% of small solid renal tumors are renal cell carcinoma. The majority of localized small renal tumors can be cured with existing surgical approaches. However, there is a small but not insignificant risk of synchronous and metachronous metastatic disease and cancer associated death. Patients considering experimental therapies such as ablation and surveillance should be aware of this.

    This is from a study published in the Journal of Urology in 2008 entitled "Tumor size does not predict risk of metastatic disease or prognosis of small renal cell carcinomas."

    Please be sure to go along armed with all the reports on your case and all the information you can muster and ask all the questions you need to, to get a full understanding of what you are advised to do and why.
  • nyc_girl
    nyc_girl Member Posts: 27
    2 opinions
    I discovered (by luck) in late November that I had a 2.2cm kidney tumor. I had no symptoms. I am in my early 40s. I got 2 medical opinions in NY from doctors specializing in kidney tumors. Both doctors recommended partial nephrectomy based on the MRI results. One doctor recommended robotic surgery, the other recommended open surgery. I decided to have the tumor removed in January by open surgery. The surgeon I chose has many many years of experience operating on kidney tumors. He was able to remove the tumor and save most of my kidney. The tumor turned out to be clear cell RCC, fuhrman grade 3. I recovered from the surgery and no further treatment is being recommended, but I will need to have regular post-op imaging to make sure there is no recurrence.

    Good luck with your decision. Wishing you well.
  • foxhd
    foxhd Member Posts: 3,181 Member
    nyc_girl said:

    2 opinions
    I discovered (by luck) in late November that I had a 2.2cm kidney tumor. I had no symptoms. I am in my early 40s. I got 2 medical opinions in NY from doctors specializing in kidney tumors. Both doctors recommended partial nephrectomy based on the MRI results. One doctor recommended robotic surgery, the other recommended open surgery. I decided to have the tumor removed in January by open surgery. The surgeon I chose has many many years of experience operating on kidney tumors. He was able to remove the tumor and save most of my kidney. The tumor turned out to be clear cell RCC, fuhrman grade 3. I recovered from the surgery and no further treatment is being recommended, but I will need to have regular post-op imaging to make sure there is no recurrence.

    Good luck with your decision. Wishing you well.

    Way to go NYC-girl!
    More great results. Love it!