RCC Chromophobe

245

Comments

  • todd121
    todd121 Member Posts: 1,448 Member

    Side effects

    Tex is right. We're members of the rare chromophobe club here - there are so few of us that we cling when we find each other. But I'm happy to tell you about my side effects. Pretty darn minimal day to day. For me, most have come in waves and then disappeared. Early on I had a few mouth sores, which cleared up with medication.. I learned it was not a good idea to eat big chunky pretzels loaded with salt - seemed to encourage the sores. They haven't reappeared.Then I had a moderate itchy rash that disappeared within days of using the topical cream I was prescribed. Got that metal taste for a while. It went away on its own. I don't think my taste buds are as right-on as they used to be, but it is certainly not a problem.  Over the course of the last nine months I've gotten headaches - in clusters sometimes. Annoyingly often for a week or two, then scattered or gone for weeks or even a month at a time. Early on I developed some ground glass opacities in my lungs which we are watching. They diminished a bit and then some new ones appeared. But they are only symptomatic when I walk up a hill or hustle to catch a bus or a cab. My triglycerides and cholesterol (both of which were quite low before starting the trial) began to rise and in February I was put on Lovazza to control the triglycerides. Numbers for both have returned to normal. My BP has also been heading north. Just today I started taking Norvasc (also known as Amlodipine) to lower it. Fatigue sometimes. Couldn't figure out how much was due to winter doldrums, but at any rate it hasnt been debilitating. Liver function and creatinine/kidney function are fine. And so there you have it. But that's only my story. Everyone's different. 

    Thanks

    I understood you had chRCC and not ccRCC. I was just interested in what side effects would look like with combined VEGF drug and mTOR inhibitor drug. This is the first I've heard of anyone being given them at the same time and I was curious if the side effects would be additive, or even worse. It sounds manageable, and that's good.

    Hope this works for you and wish you the best.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member

    Side effects

    Tex is right. We're members of the rare chromophobe club here - there are so few of us that we cling when we find each other. But I'm happy to tell you about my side effects. Pretty darn minimal day to day. For me, most have come in waves and then disappeared. Early on I had a few mouth sores, which cleared up with medication.. I learned it was not a good idea to eat big chunky pretzels loaded with salt - seemed to encourage the sores. They haven't reappeared.Then I had a moderate itchy rash that disappeared within days of using the topical cream I was prescribed. Got that metal taste for a while. It went away on its own. I don't think my taste buds are as right-on as they used to be, but it is certainly not a problem.  Over the course of the last nine months I've gotten headaches - in clusters sometimes. Annoyingly often for a week or two, then scattered or gone for weeks or even a month at a time. Early on I developed some ground glass opacities in my lungs which we are watching. They diminished a bit and then some new ones appeared. But they are only symptomatic when I walk up a hill or hustle to catch a bus or a cab. My triglycerides and cholesterol (both of which were quite low before starting the trial) began to rise and in February I was put on Lovazza to control the triglycerides. Numbers for both have returned to normal. My BP has also been heading north. Just today I started taking Norvasc (also known as Amlodipine) to lower it. Fatigue sometimes. Couldn't figure out how much was due to winter doldrums, but at any rate it hasnt been debilitating. Liver function and creatinine/kidney function are fine. And so there you have it. But that's only my story. Everyone's different. 

    Thanks

    I understood you had chRCC and not ccRCC. I was just interested in what side effects would look like with combined VEGF drug and mTOR inhibitor drug. This is the first I've heard of anyone being given them at the same time and I was curious if the side effects would be additive, or even worse. It sounds manageable, and that's good.

    Hope this works for you and wish you the best.

    Todd

  • PK_Chicago
    PK_Chicago Member Posts: 58

    Database

    To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

    Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

    I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

    Database

    I am a male, 48 years old, my diagnosis was in January 2012, stage 4, my tumor was encapsulated in my left kidney 14cm, USA, white (Austrian), AB positive.

    Surgeries - Radical nephrectomy (1/17/2012), Colon Resection (1/17/2012), Thyroid removed (9/18/2012).

     

    My first set of post kidney removal (6 months) CT scans  showed thyroid nodules that were thyroid cancer - thyroid and surrounding nodules removed, second set of post kidney removal scans showed lesions in my pubic bone and shoulder blade - biopsy determined they are RCC cells.

     

    Looking at options for treatment - they are suggesting Torisel...

     

    PK 

  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    todd121 said:

    Thanks

    I understood you had chRCC and not ccRCC. I was just interested in what side effects would look like with combined VEGF drug and mTOR inhibitor drug. This is the first I've heard of anyone being given them at the same time and I was curious if the side effects would be additive, or even worse. It sounds manageable, and that's good.

    Hope this works for you and wish you the best.

    Todd

    Slight Revision

    Thanks for the kind words TW.  I realized when I was glancing past my earlier post that the date was wrong.  I was diagnosed in June of 2011 and had the nephrectomy in September 2011.  I will have my 18 month scans in June.  I am more anxious about these since I understand metastisis of chRCC is more common in the 18 to 36 month period.  For what its worth, my pathology report describes the sarcomatoid component as having the appearance of "andiosarcoma". 

  • jnizzi
    jnizzi Member Posts: 18
    Database

    Female, 38, June of 2010, Stage 2, Grade 3, 7.1 cm, right kidney, United States, white, blood group unknown (I will find out and let you know)

    Surgeries...

    April 2010 apendectomy (discovered kidney tumor)

    June 2010 radical right nephrectomy

    Februaray 2012 Hysterectomy (uterus only)

    August 2012 oomprectomy (both ovaries)

    No drugs related to the chRCC

  • jnizzi
    jnizzi Member Posts: 18
    a few more questions...

    nano-how were the mets discovered?  did you have any symptoms?

    I am alive-how were your mets discovered and did you have any symptoms?

    ourfriendjohn-i am curious about your comment that states mets of chRCC are more common 18-36 months out.  I have not read that anywhere.  Is that the case with everyone here?  Mets are more likely to be discovered that far out? 

    Just wondering about anyone that has had mets if they had any symptoms and how the mets were discovered  I also wonder if you all see an oncologist or a urologist.  My doctor is a ulologist.  In the begining he told me that surgery is basically a "cure" and it is very unlikely that this would reoccur and I dont need an oncologist.  What do you all think?

  • NanoSecond
    NanoSecond Member Posts: 653
    jnizzi said:

    a few more questions...

    nano-how were the mets discovered?  did you have any symptoms?

    I am alive-how were your mets discovered and did you have any symptoms?

    ourfriendjohn-i am curious about your comment that states mets of chRCC are more common 18-36 months out.  I have not read that anywhere.  Is that the case with everyone here?  Mets are more likely to be discovered that far out? 

    Just wondering about anyone that has had mets if they had any symptoms and how the mets were discovered  I also wonder if you all see an oncologist or a urologist.  My doctor is a ulologist.  In the begining he told me that surgery is basically a "cure" and it is very unlikely that this would reoccur and I dont need an oncologist.  What do you all think?

    My mets

    Jnizzi.  There is a long and short answer to your question of how my mets were discovered.  Short answer: "suspicious" lesions on my sacrum were seen on my routine (every 3 month) CT-Scan.  Based on that a follow up biopsy and full-body nuclear bone scan were ordered by my onc.  The biopsy then confirmed the lesion observed was mRCC and the full-body scan revealed additional lesions on my left femur.

    Long answer:  In hindsight there were several missed clues during the previous 12 months.  One day, about a year before the discovery, I started experiencing an intense diffuse pain in my left thigh/leg. But I attributed that to severe turbulance that I had experienced the previous day (while flying in a small plane).  The pain took about 10 days to slowly subside.  About 4 months later I experienced the same pain in the same area.  This time I attributed it to my climbing up a steep mountain trail the day before.  Again it took about 10 days to fully subside.  About 4 months after that I had a repeat of the pain - but this time I could not attribute it to anything.  So I scheduled a meeting with a rheumatologist. She diagnosed it as "acute bursitis".  At no time did I suspect that these episodes might have been related to my RCC (that's how ignorant I was about this disease back then).  Nor did any of my routine CT-scans show any problem during this period - likely because they were not imaging outside of my abdomen/pelvis and whatever was going on was in my thigh.  Incidentally, that rheumatologist ordered a test of my C-Reactive Protein level (a measure of internal inflammation).  The first test came back so high (89 mg/L) that she just tossed those results out as faulty and ordered another test.  (Normal is considered anywhere between 1.0-4.0 mg/L; optimal is below 1.0 mg/L).  That C-R P retest (done one week later) was lower - "only" 9.0 mg/L - but by then I was no longer in any pain.  Those tests were done in April/May 2012.  It was two months later (July) when the mystery behind the repeating "bursitis" in my left femur was finally solved.

     

  • todd121
    todd121 Member Posts: 1,448 Member
    jnizzi said:

    a few more questions...

    nano-how were the mets discovered?  did you have any symptoms?

    I am alive-how were your mets discovered and did you have any symptoms?

    ourfriendjohn-i am curious about your comment that states mets of chRCC are more common 18-36 months out.  I have not read that anywhere.  Is that the case with everyone here?  Mets are more likely to be discovered that far out? 

    Just wondering about anyone that has had mets if they had any symptoms and how the mets were discovered  I also wonder if you all see an oncologist or a urologist.  My doctor is a ulologist.  In the begining he told me that surgery is basically a "cure" and it is very unlikely that this would reoccur and I dont need an oncologist.  What do you all think?

    a few more questions...

    (Not chromophobe specific comment...) I've been told that the highest risk time is in the first 2 years. That's why the standard of care is scans every 4-6 months for the first 2 years, then yearly to 5 years, then optional after that. But even after 5 years the probability does not go to 0 or even close to 0. This cancer seems to be odd that way compared to others for some reason, so I would keep getting scans after 5 years. The study I am in will follow us for 10 years.

    Since it's been 3 years since your surgery (is that correct?), I don't think you need to rush to see a medical oncologist, but I would see one at some point. I think it would be good to have one review your case and get an opinion. However, you need one very familar with RCC. In my opinion it would be a waste of time to see a medical oncologist who is not an RCC specialist unless they are willing to do special research and go out of their way for you. This disease is a moving target, and a medical oncologist who is not up on the latest research won't be of much help unless they have some motivation to study about it.

    Todd

  • jnizzi
    jnizzi Member Posts: 18

    My mets

    Jnizzi.  There is a long and short answer to your question of how my mets were discovered.  Short answer: "suspicious" lesions on my sacrum were seen on my routine (every 3 month) CT-Scan.  Based on that a follow up biopsy and full-body nuclear bone scan were ordered by my onc.  The biopsy then confirmed the lesion observed was mRCC and the full-body scan revealed additional lesions on my left femur.

    Long answer:  In hindsight there were several missed clues during the previous 12 months.  One day, about a year before the discovery, I started experiencing an intense diffuse pain in my left thigh/leg. But I attributed that to severe turbulance that I had experienced the previous day (while flying in a small plane).  The pain took about 10 days to slowly subside.  About 4 months later I experienced the same pain in the same area.  This time I attributed it to my climbing up a steep mountain trail the day before.  Again it took about 10 days to fully subside.  About 4 months after that I had a repeat of the pain - but this time I could not attribute it to anything.  So I scheduled a meeting with a rheumatologist. She diagnosed it as "acute bursitis".  At no time did I suspect that these episodes might have been related to my RCC (that's how ignorant I was about this disease back then).  Nor did any of my routine CT-scans show any problem during this period - likely because they were not imaging outside of my abdomen/pelvis and whatever was going on was in my thigh.  Incidentally, that rheumatologist ordered a test of my C-Reactive Protein level (a measure of internal inflammation).  The first test came back so high (89 mg/L) that she just tossed those results out as faulty and ordered another test.  (Normal is considered anywhere between 1.0-4.0 mg/L; optimal is below 1.0 mg/L).  That C-R P retest (done one week later) was lower - "only" 9.0 mg/L - but by then I was no longer in any pain.  Those tests were done in April/May 2012.  It was two months later (July) when the mystery behind the repeating "bursitis" in my left femur was finally solved.

     

    thank you

    thank you for your response.  Part of me agrees with my doctor and thinks I am cured and I should not worry about anything...the other part of me knows this really was cancer and I have to be an advocate for myself and ask the right questions and research because it seems so little is known about this specific type of cancer.  I do worry that a weird pain i have in my hip is a bone met but i am sure the doc will think i am crazy if i bring it up to him.  But i also dont want to be the one who ignored something and later find out that it was something and if only i pushed and demanded more test from my doctor it could have saved my life.  I worry that i am getting an xray and a ct scan and they say looks good see you next year...a year is a long time for this crap to be growing all over inside of me...uggg. 

    anyway...positive thoughts.... :)  I am usually not this crazy...i just start thinking about it when i have to go back in for my scans.

    Thanks to everyone for the replys...it is good to know i am not alone in this

  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    todd121 said:

    a few more questions...

    (Not chromophobe specific comment...) I've been told that the highest risk time is in the first 2 years. That's why the standard of care is scans every 4-6 months for the first 2 years, then yearly to 5 years, then optional after that. But even after 5 years the probability does not go to 0 or even close to 0. This cancer seems to be odd that way compared to others for some reason, so I would keep getting scans after 5 years. The study I am in will follow us for 10 years.

    Since it's been 3 years since your surgery (is that correct?), I don't think you need to rush to see a medical oncologist, but I would see one at some point. I think it would be good to have one review your case and get an opinion. However, you need one very familar with RCC. In my opinion it would be a waste of time to see a medical oncologist who is not an RCC specialist unless they are willing to do special research and go out of their way for you. This disease is a moving target, and a medical oncologist who is not up on the latest research won't be of much help unless they have some motivation to study about it.

    Todd

    Jnizzi,
    The information I

    Jnizzi,

    The information I mentioned is from a National Institutes of Health paper: "Surveillance Strategies for Renal Cell Carcinoma Patients Following Nephrectomy"

    It says:

    The greatest risk of recurrence for RCC occurs within the first 5 years after nephrectomy, with the majority of recurrences occurring within 3 years. Although recurrences have been reported as late as 30 years following nephrectomy, rates of 43% in the first year, 70% within the second year, 80% within 3 years, and 93% within 5 years have been reported.  Tumor stage plays an important role in timing of recurrence, with T1 tumors generally recurring between 38 and 45 months, whereas T3 tumors generally recur between 17 and 28 months following initial nephrectomy.  After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors.

    What I was remembering was the comment on T3 tumors that was more applicable to me.  Sorry if I caused you any concern.  Sometimes there is just too much information to understand, let alone retain.

    Best wishes for many healthy years!

    John

  • angec
    angec Member Posts: 924 Member

    Now number 20

    Good to see you back John and thanks for the info. 

    As a matter of fact, it's of particular interest to me because I think I'm the only person still living with metastatic, sarcomatoid chromophobe RCC.  I realise now that I should have had an extra column for sarcomatoid elements.  You and I are the only ones I'm aware of with schRCC but I hope anyone reading this who is in our boat will let me know.

    Yours is by far the largest tumor in the database so far (even though chRCC tumors tend to be the biggest) and that, combined with the small sarcomatoid element, make it remarkable that you have no mets - long may that continue and I shall pray that it stays that way.  Without wanting to be alarmist though, I'm a little surprised that you aren't being followed up more frequently.  I've been getting CT scans with contrast (and one important hybrid PET/CT scan) every 12 weeks or so, but then my pathology is mostly sarcomatoid and with extensive sporadic necrosis.  Stay well.

    TW I am curious....isn't Neil

    TW I am curious....isn't Neil the same as you?  Ch with sacromatoid?  I am getting confused....lol  any updates?

     

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    TW I am curious....isn't Neil

    TW I am curious....isn't Neil the same as you?  Ch with sacromatoid?  I am getting confused....lol  any updates?

     

    Trevor is unique

    Hi Angec,

    No, I only have chromophobe - no sarcomatoid cells.  Not yet anyway.  As Tex will tell you, any tumor - clear cell, chromophobe, papillary, etc. histology - can evolve into possessing a more aggressive sarcomatoid percentage of cells. 

    But Tex is quite unique in having both - and in responding so well while on Votrient.

    He also plays a fine game of golf.  I, however, do not.  :)

  • NanoSecond
    NanoSecond Member Posts: 653
    jnizzi said:

    thank you

    thank you for your response.  Part of me agrees with my doctor and thinks I am cured and I should not worry about anything...the other part of me knows this really was cancer and I have to be an advocate for myself and ask the right questions and research because it seems so little is known about this specific type of cancer.  I do worry that a weird pain i have in my hip is a bone met but i am sure the doc will think i am crazy if i bring it up to him.  But i also dont want to be the one who ignored something and later find out that it was something and if only i pushed and demanded more test from my doctor it could have saved my life.  I worry that i am getting an xray and a ct scan and they say looks good see you next year...a year is a long time for this crap to be growing all over inside of me...uggg. 

    anyway...positive thoughts.... :)  I am usually not this crazy...i just start thinking about it when i have to go back in for my scans.

    Thanks to everyone for the replys...it is good to know i am not alone in this

    Pain in thigh

    Sometimes - and I think this is one of those times - you just have to stand firm and not take no for an answer.  I did not realize you were experiencing any pain in your thigh.  Yes, it may be turn out to be nothing serious.  But the only way to know for sure if it is due to bone mets is to insist on doing a full-body nuclear bone scan (a CT-Scan will not be not sufficient for this). 

     

  • I am alive
    I am alive Member Posts: 315
    Signs of metastases

    JNizzi,

      I'm trying to remember if there were signs or hints of metastasis. The first met backin'08? I felt a little uncomfortable in the mid chest area, enough to notice, but it never crossed my mind that it might be cancer. Small things, like my bra felt tighter than usual, made me wonder what if anything was going on .Was it related to the mets? I stopped feeling the discomfort after the RPLND surgery. Second time around I was getting CT with contrast every 3-4 months and we "watched" tiny anomolies for several months before they were declared mets.  I did feel a liTtle something awry with two of the four - just that consciousness, that vague "what's going on there?" thought that  ticker tapes across the brain. Bottom line, we can't be timid about pointing out our concerns. You don't want to make yourself crazy but you do have to pay close attention to what's going on with your body, and then act on it. (inexplicably, that's the really hard part.) You have every right to request a scan to check out your concerns. You've had cancer once - that's your gold card for followup care. I'm wondering if the urologist who told you you were "cured" specializes in RCC. One of my regrets, as stated above, is that I didn't gp to an oncologist who specializes in RCC right after my nephrectomy. I just think they are more attuned to the fickle nature of this cancer, and are more apt to encourage close monitoring. P.s. My urologist told me post nephrectomy that Ihad a 68 percent chance of being cancer free for five years. I didn't make it.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Signs of metastases

    JNizzi,

      I'm trying to remember if there were signs or hints of metastasis. The first met backin'08? I felt a little uncomfortable in the mid chest area, enough to notice, but it never crossed my mind that it might be cancer. Small things, like my bra felt tighter than usual, made me wonder what if anything was going on .Was it related to the mets? I stopped feeling the discomfort after the RPLND surgery. Second time around I was getting CT with contrast every 3-4 months and we "watched" tiny anomolies for several months before they were declared mets.  I did feel a liTtle something awry with two of the four - just that consciousness, that vague "what's going on there?" thought that  ticker tapes across the brain. Bottom line, we can't be timid about pointing out our concerns. You don't want to make yourself crazy but you do have to pay close attention to what's going on with your body, and then act on it. (inexplicably, that's the really hard part.) You have every right to request a scan to check out your concerns. You've had cancer once - that's your gold card for followup care. I'm wondering if the urologist who told you you were "cured" specializes in RCC. One of my regrets, as stated above, is that I didn't gp to an oncologist who specializes in RCC right after my nephrectomy. I just think they are more attuned to the fickle nature of this cancer, and are more apt to encourage close monitoring. P.s. My urologist told me post nephrectomy that Ihad a 68 percent chance of being cancer free for five years. I didn't make it.

    a few more questions

    Jenn and Todd - a little knowledge is a dangerous thing.  So much about kidney cancer is speculation - we've only just started to scratch the surface in our understanding of it.  The "statistics"  are of no practical use to any individual patient.  Doctors aren't statisticians and most doctors don't have the slightest clue how to interpret stats.  

    The received wisdom is that chRCC hardly ever metastasises but here we are with quite a few of us with mets.  We do seem to be the crew who are changing the numbers in quite a few ways - not entirely in good ways, maybe!  However, it's an open question what constitutes a 'metastasis'.  Some factor(s) predisposed us to get kc in the first place and if we get 'mets' twenty years on, after having been NvED in the interim, who's to say whether this is a 'recurrence' or just a new instance with strikingly similar cancer cell morphology. (There is the phenomenon of secondaries with occult primaries yet to be explained.)

    Then again, there is a lot of difference between local and remote 'recurrences'.  Having only been dxed in Oct 2011, I may be in for unpleasant surprises down the line but so far no 'distant' mets have shown themselves.  I have a couple of compromised lymph nodes but these are very close to the original tumor site.  What I have had is 'recurrences' in several locations within just a few months of my nephrectomy.  However, these have all been very close in time and also close physically to the primary (a tumor close to my spine, removed with a second op, and one on my abdominal wall which is inoperable, plus the lymph nodes).  It's believed that the secondary tumors are not so much 'mets' as 'satellites' - leftovers from not being able to achieve clear margins in my nephrectomy.

    All of these factors and many others go towards explaining why I'm still around and functional a year and a half on.  A few days ago someone on Smart Patients posted links to papers on sRCC which repeated the 'stats' which showed that with my histology (necrotic, sarcomatoid chRCC) the median survival time was around 4 months from dx - or 2 or 3 months from my nephrectomy.

    Neil, I'm still alone in full detail of pathology but John (ourfriend), I hadn't realised, also has schRCC, though, thankfully with a small sarcomatoid component. 

    I must also correct the false impression I seem to have given about my abilities as a golfer - I'm avid and used to play 5-10 rounds a week but without the payoff that should bring in skill, alas :(  [but then I was nearly 50 when I took the game up].  I played in a Carnoustie Club comp yesterday on the Championship Course and recorded a dreadful score, which I ascribed in part to having rowed 18,000m (11 1/4 miles) on Sunday.  Fortunately there's another excuse available - it was so windy that when we clocked our scores into the computer, of the 17 scores in, only one player had managed to break 90 (and he shot 88!) - I'm hoping it's confirmed as a 'reduction only' comp and won't contribute to the ineluctable upward drift of the old handicap.  (At least I can fall back on the excuse of having a new 'handicap'!)

  • Djinnie
    Djinnie Member Posts: 945 Member

    Jnizzi,
    The information I

    Jnizzi,

    The information I mentioned is from a National Institutes of Health paper: "Surveillance Strategies for Renal Cell Carcinoma Patients Following Nephrectomy"

    It says:

    The greatest risk of recurrence for RCC occurs within the first 5 years after nephrectomy, with the majority of recurrences occurring within 3 years. Although recurrences have been reported as late as 30 years following nephrectomy, rates of 43% in the first year, 70% within the second year, 80% within 3 years, and 93% within 5 years have been reported.  Tumor stage plays an important role in timing of recurrence, with T1 tumors generally recurring between 38 and 45 months, whereas T3 tumors generally recur between 17 and 28 months following initial nephrectomy.  After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors.

    What I was remembering was the comment on T3 tumors that was more applicable to me.  Sorry if I caused you any concern.  Sometimes there is just too much information to understand, let alone retain.

    Best wishes for many healthy years!

    John

    Risks of recurrence

    I have learnt that we have to make sure we don't drop the ball. I discovered back in 2003 that I had a cancerous tumour on my right kidney,it was 3.5 cm. I had Radiofrequency ablation treatment. I had follow up CT scans and X-rays until 2008. I then moved from the States to France where I was monitored by means of echographies. I had to have a CT scan recently for another problem, the scan was queried because of a scar on my kidney. I was sent for an IRM which determined that the scar was in fact a 4.3 cm tumour on the previous site.

    One thing I have learnt from this experience is not to trust echographies, in future it will be CT scans or IRM. I am hoping that this is it's last visit.

     

    Djinnie

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Djinnie said:

    Risks of recurrence

    I have learnt that we have to make sure we don't drop the ball. I discovered back in 2003 that I had a cancerous tumour on my right kidney,it was 3.5 cm. I had Radiofrequency ablation treatment. I had follow up CT scans and X-rays until 2008. I then moved from the States to France where I was monitored by means of echographies. I had to have a CT scan recently for another problem, the scan was queried because of a scar on my kidney. I was sent for an IRM which determined that the scar was in fact a 4.3 cm tumour on the previous site.

    One thing I have learnt from this experience is not to trust echographies, in future it will be CT scans or IRM. I am hoping that this is it's last visit.

     

    Djinnie

     

    Risks

    Just in case anyone doesn't guess, echography is what we know better as US -  ultrasound scanning.

  • Djinnie
    Djinnie Member Posts: 945 Member

    Risks

    Just in case anyone doesn't guess, echography is what we know better as US -  ultrasound scanning.

    Thanks

    Thank you Texas, I have obviously been here longer than I thought. I had completely forgotten the US term....lol

    Djinnie

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Djinnie said:

    Thanks

    Thank you Texas, I have obviously been here longer than I thought. I had completely forgotten the US term....lol

    Djinnie

    La Belle France

    I forebore making that observation the other day when I saw that you'd forgotten how to spell 'yacht'  (when you referred to your yaught!) - I thought Djinnie's been in France too long! Still, given The Auld Alliance maybe I can bum a ride in your yaught sometime Smile

  • Djinnie
    Djinnie Member Posts: 945 Member

    La Belle France

    I forebore making that observation the other day when I saw that you'd forgotten how to spell 'yacht'  (when you referred to your yaught!) - I thought Djinnie's been in France too long! Still, given The Auld Alliance maybe I can bum a ride in your yaught sometime Smile

    Oh my word!

    That is funny, my spelling is all over the place. I get confused with US spelling, UK spelling and some French. However, there was no excuse for that one, I can't even blame it on the meds as I finished with those two weeks back. My husband is shocked, he is thinking I had more removed than the tumour.

    Djinnie x