Got my results

MeMeJoy
MeMeJoy Member Posts: 70

Before Tuesday we called it my "oddly shaped tennis ball" Now we call it my "Cancer ball"...Tongue Out

I got my MRI results Tuesday - I have cancer. It was a roller coaster of Bad news/Good news...

Bad news: I have cancer.
Good News: They are pretty sure it is contained in my left kidney.

Bad news: Its in the collecting ducts of the kidney which means they have to do a radical nephrectomy.
Good news: You only need 1/3 of a kidney to live- so hey - Im up by 2/3 lol
Bad news (at least my 8 yr old thinks so lol he thought having a robot do the surgery would be "way cooler") - Its too large to have robotic surgery, >8cm.
Good news : They dont have to do an open surgery. It will be a hand assisted laproscopic surgery: 1 inscission in front, from my belly button up big enough for him to get his hands inside and 2 on my side for the "tools" - Im gonna be a backwards puppet - Jeff Dunham comes to mind lol

Anyone faimilar with the hand assisited lap.? Any tips for afterwards?

The surgery itsself should be about 2-4 hours and then 3-5 days in the hospital.

I dont know when the surgery will be yet - should know by the end of Friday. Though this isnt an emergency - like do it tomorrow kind of surgery - he wants to do it sooner rather than later and I agree!

So I guess on the totem pole of kidney cancer this is pretty low - not as low as it could be but not nearly as bad as it could be either.

Staying positive and logical...I have cancerous mass, we will remove it, then I wont have a cancerous mass...the end (kinda not the end b/c of the follow up scans for the rest of forever which is going to be long time since im only 32 Winkbut I digress...)

My only concern is that on the MRI  report it states that there are 'smaller subcentimeter T2 hypertense lesions in the right kidney...suggestive of cysts' and basically the same thing on my spleen. 3 years ago they told me the "cancer ball" in my left kidney was 'just a cyst'.....  At least we are aware of these issues involving the right kidney and spleen early and can monitor them. BUT...Could they be wrong about it being contained in the keft kidney? Or am I just a cysty person??? I plan to ask him about all of this at my pre op visit, but what do you think? Anyone had similar issues?

Any advice is always welcome! Thanks for listening!!

«13

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Way ahead

    and you're way ahead with that excellent attitude!  I think you should remain incystent! - keep asking those questions.  Many, if not even most of us, have lots of harmless cysts that we don't need to get worked up about.  If we didn't have the scans we'd never know about them and could reach a ripe old age and die without anyone ever knowing about them.

    With a bit of luck, your tumor will remain contained and once it's out you'll be fine. In any case, the need for future monitoring does guarantee that the cysts will also be watched so, as you've said, you've got an early warning system built in should it ever be needed. I hope all goes well.  Keep us posted.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Cysts

    Cysts ar common and normal. I have one or two on the Kidney I have left (the right Kidney) and it has been monitored the last 10 and 1/2 years by CTs initially and the last 5 years or so by an Ultrasound.

     

     

    Icemantoo

  • MeMeJoy
    MeMeJoy Member Posts: 70
    Guess I zoned out

    Thanks! After I posted that I talked to my husband about the cysts and said the doctor went over that when we were in there, I guess I kind of zoned out a bit when the dr was talking after I heard the part about cancer lol

  • Eims
    Eims Member Posts: 423
    hey memejoy,  a lady across

    hey memejoy,  a lady across from me in my ward had her kidney taken out by keyhole surgery and she was up an about within 24 hours and she smoked 30-40 ciggies a day!!!  its great that you are asking all the right questions and to be honest any question is justified.  everyone on this board is here for you.....stay in touch.

    eims x

  • MeMeJoy
    MeMeJoy Member Posts: 70
    Thanks! and HRLCC / CDC

    Thanks so much for all the encouraging words! Sorry I didn’t respond sooner !

     

    I found out that my surgery will be on May 9th. My doc will not be doing the surgery, it will be performed by the the chief urologist at the hospital, so that works! They are in the same practice as well.

     

    Since he (surgeon) and I have never met, I have a meet-and-greet appointment with him next week to ask questions about the surgery and what not. I don’t have another appt. with MY doc before the surgery.

     

    Which brings me to this:

     

    Last year I went to my GP about some “bumps” on my left shin. After doing skin scrapes he said he had no idea what it was and that it was probably an allergic reaction to something. Well those bumps are still there, the EXACT same bumps. I looked online to try and see if I could figure out what they were to no avail. However now that I know I have kidney cancer I decided to do another search and see if the 2 could be related. This led me to HLRCC.  Both of my parents were adopted (mom fully – dad by his dad – paternal grandmother was also adopted by her father) so not much is known about my family history. However, my paternal grandmother is the one who passed away at 50 from RCC. (my user name has nothing to do with my name, it is a nod to her)

     

    Question(s)1: I want to ask my dr. about the possibility of HLRCC, or at least let someone know that I feel this warrants some attention, should I bring that up with the dr. who is doing my surgery or wait and tell my urologist when I see him next?  Does anyone have any experience with HLRCC? Should I start a new thread about it?

     

    Question(s)2: My doc said the cancer was in the collecting duct…does this imply Collecting Duct Carcinoma? Or can that only be confirmed after it has been removed?  I’ve seen some things regarding that particular cancer type and they aren’t exactly …….reassuring….. Again, is this a question that I should bring up with the surgeon or with my doc.?

     

    I feel like there should be a 24 hr hotline for cancer related questions once you are diagnosed because the questions just keep coming lol

     

    Thanks again for everything!

     

  • AprilandChuck
    AprilandChuck Member Posts: 110
    MeMeJoy said:

    Thanks! and HRLCC / CDC

    Thanks so much for all the encouraging words! Sorry I didn’t respond sooner !

     

    I found out that my surgery will be on May 9th. My doc will not be doing the surgery, it will be performed by the the chief urologist at the hospital, so that works! They are in the same practice as well.

     

    Since he (surgeon) and I have never met, I have a meet-and-greet appointment with him next week to ask questions about the surgery and what not. I don’t have another appt. with MY doc before the surgery.

     

    Which brings me to this:

     

    Last year I went to my GP about some “bumps” on my left shin. After doing skin scrapes he said he had no idea what it was and that it was probably an allergic reaction to something. Well those bumps are still there, the EXACT same bumps. I looked online to try and see if I could figure out what they were to no avail. However now that I know I have kidney cancer I decided to do another search and see if the 2 could be related. This led me to HLRCC.  Both of my parents were adopted (mom fully – dad by his dad – paternal grandmother was also adopted by her father) so not much is known about my family history. However, my paternal grandmother is the one who passed away at 50 from RCC. (my user name has nothing to do with my name, it is a nod to her)

     

    Question(s)1: I want to ask my dr. about the possibility of HLRCC, or at least let someone know that I feel this warrants some attention, should I bring that up with the dr. who is doing my surgery or wait and tell my urologist when I see him next?  Does anyone have any experience with HLRCC? Should I start a new thread about it?

     

    Question(s)2: My doc said the cancer was in the collecting duct…does this imply Collecting Duct Carcinoma? Or can that only be confirmed after it has been removed?  I’ve seen some things regarding that particular cancer type and they aren’t exactly …….reassuring….. Again, is this a question that I should bring up with the surgeon or with my doc.?

     

    I feel like there should be a 24 hr hotline for cancer related questions once you are diagnosed because the questions just keep coming lol

     

    Thanks again for everything!

     

    hand assist

    Chuck had hand assisted surgery I think the biggest difference is a slightly longer recovery time and just a bit more pain...he did well with it and recovery is faster than open...which is a good thing...as to the collecting duct I did not see if you said you had a biopsy I would think they would wait to state type till after you pathology report comes back..just my opinion..some of the ones wyo have been here longer may know more than me lol lots of people do about this because I am still learning...don't borrow trouble would be my advice..worry about doing what you can now..and healing from the surgery after you have it..and see whats goinng on with it..sometimes I think it was a blessing that everything happened so quick with us ...we did not have time to worry..praying that everything goes wonderful for you...huggss p.s. I would bring it to both doctors attention..about your grandmother...

  • AprilandChuck
    AprilandChuck Member Posts: 110
    MeMeJoy said:

    Thanks! and HRLCC / CDC

    Thanks so much for all the encouraging words! Sorry I didn’t respond sooner !

     

    I found out that my surgery will be on May 9th. My doc will not be doing the surgery, it will be performed by the the chief urologist at the hospital, so that works! They are in the same practice as well.

     

    Since he (surgeon) and I have never met, I have a meet-and-greet appointment with him next week to ask questions about the surgery and what not. I don’t have another appt. with MY doc before the surgery.

     

    Which brings me to this:

     

    Last year I went to my GP about some “bumps” on my left shin. After doing skin scrapes he said he had no idea what it was and that it was probably an allergic reaction to something. Well those bumps are still there, the EXACT same bumps. I looked online to try and see if I could figure out what they were to no avail. However now that I know I have kidney cancer I decided to do another search and see if the 2 could be related. This led me to HLRCC.  Both of my parents were adopted (mom fully – dad by his dad – paternal grandmother was also adopted by her father) so not much is known about my family history. However, my paternal grandmother is the one who passed away at 50 from RCC. (my user name has nothing to do with my name, it is a nod to her)

     

    Question(s)1: I want to ask my dr. about the possibility of HLRCC, or at least let someone know that I feel this warrants some attention, should I bring that up with the dr. who is doing my surgery or wait and tell my urologist when I see him next?  Does anyone have any experience with HLRCC? Should I start a new thread about it?

     

    Question(s)2: My doc said the cancer was in the collecting duct…does this imply Collecting Duct Carcinoma? Or can that only be confirmed after it has been removed?  I’ve seen some things regarding that particular cancer type and they aren’t exactly …….reassuring….. Again, is this a question that I should bring up with the surgeon or with my doc.?

     

    I feel like there should be a 24 hr hotline for cancer related questions once you are diagnosed because the questions just keep coming lol

     

    Thanks again for everything!

     

    One more question is your

    One more question is your doctor or the chief of the department a urological oncologist...and have the suggested bringing an oncologist onto your case..in our experience the sooner you meet an oncologist and they review your stuff the better..

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    One more question is your

    One more question is your doctor or the chief of the department a urological oncologist...and have the suggested bringing an oncologist onto your case..in our experience the sooner you meet an oncologist and they review your stuff the better..

    Another question

    I can't speak for the UK position as a whole but questions like April's can't arise where I am being treated.  We have the MDT model, where each case is constantly reviewed in weekly meetings involving a team of urologists, oncologists, radiologists, cancer nurses, with nephrologists pulled in if necessary.  There's no question of a hole in expertise (even though it's RCC) so no need to go looking for it.

    It seems to me that that is relatively rare Statesside - is my set-up the exception rather than the rule over there?  Of course, the UK is tiny compared with the US so we're much more likely to be close to specialist facilities when we need them.  I guess that when it comes to a tricky rare cancer like RCC, where there is a paucity of real experts, many of you folks must need to look a lot further afield, sift through much larger numbers of possible experts and then, quite often, travel considerable distances to get the expert treatment that you need.  If that's right, then a major virtue of forums like this is in enabling seasoned patients to advise newbies accordingly and to give help in pointing to the best places to go to.  That must be a valuable function in countries as large as yours.

  • Galrim
    Galrim Member Posts: 307

    Another question

    I can't speak for the UK position as a whole but questions like April's can't arise where I am being treated.  We have the MDT model, where each case is constantly reviewed in weekly meetings involving a team of urologists, oncologists, radiologists, cancer nurses, with nephrologists pulled in if necessary.  There's no question of a hole in expertise (even though it's RCC) so no need to go looking for it.

    It seems to me that that is relatively rare Statesside - is my set-up the exception rather than the rule over there?  Of course, the UK is tiny compared with the US so we're much more likely to be close to specialist facilities when we need them.  I guess that when it comes to a tricky rare cancer like RCC, where there is a paucity of real experts, many of you folks must need to look a lot further afield, sift through much larger numbers of possible experts and then, quite often, travel considerable distances to get the expert treatment that you need.  If that's right, then a major virtue of forums like this is in enabling seasoned patients to advise newbies accordingly and to give help in pointing to the best places to go to.  That must be a valuable function in countries as large as yours.

    I can just add...

    Regarding the setup for UK you describe, thats the same here in Denmark where I live. All evaluations, including even regular control scans, goes to what they here name as a "Kidney Conference" (direct translation). Minimum staff attending the conference is always 1 x oncologist, 1 x urologist, 1 x radiologist.

    But in general I guess there will always be differences to the rules and applied practises. And as you mention, geography and availability probably plays a part.

    Regarding the latter, I can share a story from my own family which is food for thought (though with a happy ending):

    I have a large family in Canada, my great grandfathers sisters descendants which we still keep contact with. Three years ago my uncle once removed discovered he had a lot of enlarged lymph glands in the scrotum area.

    He lives in New brunswick, small rural town, not many specialists around. Went to see his GP who sent him to get examined in a small provincial hospital (think it was in Frederickton). Verdict: Lymphatic cancer (lymphoma). Prognosis from the MD´s there? Nothing we can do about it, too progressed. It evolves slowly so you have some years to go, but no treatment except for palliative once you get to that stage.

    Hell no my uncle said. He didnt want to accept it just like that. Normally the next step would probably be to go to Toronto, Ottawa or similar and see a specialist. However, my uncle had been stationed in Germany when he was a soldier (hes 55) and still have a lot of friends there. Knowing Germanys reputation in cancer treatment they helped him find a specialist, think it was in Hannover, and he went over there in 2011. Saw the oncologist there, had a lot of tests and checks. Comes in for the consultation to get the conclusion from the German oncologist: "You will die of old age before this thing gets you if you get the right treatment".

    The German oncologist then wrote a letter with instructions and his diagnosis as well as treatment plans. Gave them to my uncle who went home, went to a specialist in Ottawa who concurred with the German oncologist and started chemo for three months. Today he is 18 months NED...

    /G 

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

    I can just add...

    Regarding the setup for UK you describe, thats the same here in Denmark where I live. All evaluations, including even regular control scans, goes to what they here name as a "Kidney Conference" (direct translation). Minimum staff attending the conference is always 1 x oncologist, 1 x urologist, 1 x radiologist.

    But in general I guess there will always be differences to the rules and applied practises. And as you mention, geography and availability probably plays a part.

    Regarding the latter, I can share a story from my own family which is food for thought (though with a happy ending):

    I have a large family in Canada, my great grandfathers sisters descendants which we still keep contact with. Three years ago my uncle once removed discovered he had a lot of enlarged lymph glands in the scrotum area.

    He lives in New brunswick, small rural town, not many specialists around. Went to see his GP who sent him to get examined in a small provincial hospital (think it was in Frederickton). Verdict: Lymphatic cancer (lymphoma). Prognosis from the MD´s there? Nothing we can do about it, too progressed. It evolves slowly so you have some years to go, but no treatment except for palliative once you get to that stage.

    Hell no my uncle said. He didnt want to accept it just like that. Normally the next step would probably be to go to Toronto, Ottawa or similar and see a specialist. However, my uncle had been stationed in Germany when he was a soldier (hes 55) and still have a lot of friends there. Knowing Germanys reputation in cancer treatment they helped him find a specialist, think it was in Hannover, and he went over there in 2011. Saw the oncologist there, had a lot of tests and checks. Comes in for the consultation to get the conclusion from the German oncologist: "You will die of old age before this thing gets you if you get the right treatment".

    The German oncologist then wrote a letter with instructions and his diagnosis as well as treatment plans. Gave them to my uncle who went home, went to a specialist in Ottawa who concurred with the German oncologist and started chemo for three months. Today he is 18 months NED...

    /G 

    Being one's own advocate

    Gee, thanks for that interesting and illuminating post! 

    It demonstrates the value of not taking 'no' for an answer - just like Fox's history.

    It  shows the value of the team approach, in Denmark too, and it confirms how far ahead Germany is in some important areas of cancer treatment.

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

    Thanks! and HRLCC / CDC

    Thanks so much for all the encouraging words! Sorry I didn’t respond sooner !

     

    I found out that my surgery will be on May 9th. My doc will not be doing the surgery, it will be performed by the the chief urologist at the hospital, so that works! They are in the same practice as well.

     

    Since he (surgeon) and I have never met, I have a meet-and-greet appointment with him next week to ask questions about the surgery and what not. I don’t have another appt. with MY doc before the surgery.

     

    Which brings me to this:

     

    Last year I went to my GP about some “bumps” on my left shin. After doing skin scrapes he said he had no idea what it was and that it was probably an allergic reaction to something. Well those bumps are still there, the EXACT same bumps. I looked online to try and see if I could figure out what they were to no avail. However now that I know I have kidney cancer I decided to do another search and see if the 2 could be related. This led me to HLRCC.  Both of my parents were adopted (mom fully – dad by his dad – paternal grandmother was also adopted by her father) so not much is known about my family history. However, my paternal grandmother is the one who passed away at 50 from RCC. (my user name has nothing to do with my name, it is a nod to her)

     

    Question(s)1: I want to ask my dr. about the possibility of HLRCC, or at least let someone know that I feel this warrants some attention, should I bring that up with the dr. who is doing my surgery or wait and tell my urologist when I see him next?  Does anyone have any experience with HLRCC? Should I start a new thread about it?

     

    Question(s)2: My doc said the cancer was in the collecting duct…does this imply Collecting Duct Carcinoma? Or can that only be confirmed after it has been removed?  I’ve seen some things regarding that particular cancer type and they aren’t exactly …….reassuring….. Again, is this a question that I should bring up with the surgeon or with my doc.?

     

    I feel like there should be a 24 hr hotline for cancer related questions once you are diagnosed because the questions just keep coming lol

     

    Thanks again for everything!

     

    Pathology

    They really won't know what it is until they get it out and put it under a miscroscope. Unfortunately, that's pretty much the case.

    A week or so after the surgery you'll get a detailed pathology report that will tell you exactly what it is (was).

    Make sure you take at least 1 person with you into the appointment. Write your questions down between now and then so you get them all answered. It's hard to reach these doctors at other times. I took 3 people in with me, and I was glad I did. They had to put us in a larger room. I felt the doctor went slower, and explained more thoroughly when he had a larger audience. By the way, each time I saw my doctor he was accompanied by 2-3 people as well (interns, research coordinators, etc). Having my son and 2 of my best friends with me, really helped me to feel like my side was well represented. :)

    Funny story. One of my good friends is Vietnamese. I thought he was going to wait in the waiting room during the appointment. However, when they called us he just started in with us. I started to tell him to wait, but the nurse said it was no problem he could come. I had thought he wouldn't be of much use in the meeting because his English is quite poor. We had the meeting with the doctor which lasted about 20 minutes and then he left. Then later we were discussing the questions and answers and one of the questions we couldn't remember exactly what he said. Then my Vietnamese friend pulls his phone out of his pocket and says "Well, let's just listen to it again..."! Turns out he was the most useful person in the room with me. He'd thought to turn his phone on record and he'd recorded the entire conversation! It was very helpful. Lol.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member

    One more question is your

    One more question is your doctor or the chief of the department a urological oncologist...and have the suggested bringing an oncologist onto your case..in our experience the sooner you meet an oncologist and they review your stuff the better..

    Very good advice

    "...the sooner you meet an oncologist.. the better". True.

    My urologic oncologist was very slow to recommend me seeing a medical oncologist. This seems to be the norm. I highly recommend seeing a medical oncologist with experience in RCC as soon as you can. It's not a higher priority than the urologic oncologist, but it should be done soon. They can tell you about the risks of metastatic disease, and they can look into studies and drug trials you might be eligible for. They are the ones that will be treating the disease if it does spread, not the urologic oncologist, so they have better information about the disease from a systemic point of view.

    Todd

  • MeMeJoy
    MeMeJoy Member Posts: 70
    Galrim said:

    I can just add...

    Regarding the setup for UK you describe, thats the same here in Denmark where I live. All evaluations, including even regular control scans, goes to what they here name as a "Kidney Conference" (direct translation). Minimum staff attending the conference is always 1 x oncologist, 1 x urologist, 1 x radiologist.

    But in general I guess there will always be differences to the rules and applied practises. And as you mention, geography and availability probably plays a part.

    Regarding the latter, I can share a story from my own family which is food for thought (though with a happy ending):

    I have a large family in Canada, my great grandfathers sisters descendants which we still keep contact with. Three years ago my uncle once removed discovered he had a lot of enlarged lymph glands in the scrotum area.

    He lives in New brunswick, small rural town, not many specialists around. Went to see his GP who sent him to get examined in a small provincial hospital (think it was in Frederickton). Verdict: Lymphatic cancer (lymphoma). Prognosis from the MD´s there? Nothing we can do about it, too progressed. It evolves slowly so you have some years to go, but no treatment except for palliative once you get to that stage.

    Hell no my uncle said. He didnt want to accept it just like that. Normally the next step would probably be to go to Toronto, Ottawa or similar and see a specialist. However, my uncle had been stationed in Germany when he was a soldier (hes 55) and still have a lot of friends there. Knowing Germanys reputation in cancer treatment they helped him find a specialist, think it was in Hannover, and he went over there in 2011. Saw the oncologist there, had a lot of tests and checks. Comes in for the consultation to get the conclusion from the German oncologist: "You will die of old age before this thing gets you if you get the right treatment".

    The German oncologist then wrote a letter with instructions and his diagnosis as well as treatment plans. Gave them to my uncle who went home, went to a specialist in Ottawa who concurred with the German oncologist and started chemo for three months. Today he is 18 months NED...

    /G 

    Thats Awesome!

    Thats awesome that your uncle had the means and determination to fly all the way to Germany!

  • MeMeJoy
    MeMeJoy Member Posts: 70

    One more question is your

    One more question is your doctor or the chief of the department a urological oncologist...and have the suggested bringing an oncologist onto your case..in our experience the sooner you meet an oncologist and they review your stuff the better..

    April - We asked that too

    When my doc told me the news one of the first questions we asked was if I needed to go to an oncologist and his response was that, for this, he is my oncologist. I know that he, the surgeon, and many of the other doctors in the practice specialize in kidney, and other urological, cancers but honestly I dont know if that makes them "urological oncologists". The only place I have even see that specific title listed is at Emory (I'm outside of Atlanta and I've been looking around).

    I imagine that if it ever decides to spread then I may need to see someone else. I will add that to my ever growing list of FAQ I plan to take with me next week.

     

  • MeMeJoy
    MeMeJoy Member Posts: 70
    todd121 said:

    Pathology

    They really won't know what it is until they get it out and put it under a miscroscope. Unfortunately, that's pretty much the case.

    A week or so after the surgery you'll get a detailed pathology report that will tell you exactly what it is (was).

    Make sure you take at least 1 person with you into the appointment. Write your questions down between now and then so you get them all answered. It's hard to reach these doctors at other times. I took 3 people in with me, and I was glad I did. They had to put us in a larger room. I felt the doctor went slower, and explained more thoroughly when he had a larger audience. By the way, each time I saw my doctor he was accompanied by 2-3 people as well (interns, research coordinators, etc). Having my son and 2 of my best friends with me, really helped me to feel like my side was well represented. :)

    Funny story. One of my good friends is Vietnamese. I thought he was going to wait in the waiting room during the appointment. However, when they called us he just started in with us. I started to tell him to wait, but the nurse said it was no problem he could come. I had thought he wouldn't be of much use in the meeting because his English is quite poor. We had the meeting with the doctor which lasted about 20 minutes and then he left. Then later we were discussing the questions and answers and one of the questions we couldn't remember exactly what he said. Then my Vietnamese friend pulls his phone out of his pocket and says "Well, let's just listen to it again..."! Turns out he was the most useful person in the room with me. He'd thought to turn his phone on record and he'd recorded the entire conversation! It was very helpful. Lol.

    Todd

    From here on out

    From here on out my husband will be going to all of my appointments with me.

    Thats a really good idea about the phone! I just may do that!!

    I figured there was no way for them to tell for sure what kind it is until they did the whole pathology thing.

    Thanks to everyone for all the info!!!

  • AprilandChuck
    AprilandChuck Member Posts: 110
    MeMeJoy said:

    From here on out

    From here on out my husband will be going to all of my appointments with me.

    Thats a really good idea about the phone! I just may do that!!

    I figured there was no way for them to tell for sure what kind it is until they did the whole pathology thing.

    Thanks to everyone for all the info!!!

    Urological Oncologist. ? I

    Urological Oncologist. ? I did not know there was such a thing till the hospital explained my husbands urologist special training in his field..however thatdid not stop him from asking for our permission to bring  in a medical oncologist/with immunotherapy background to look everything over and meet with us too..which ended up being what we needed realitivly quickly..the more eyes on the problem the better. Huggs 

  • MeMeJoy
    MeMeJoy Member Posts: 70

    Urological Oncologist. ? I

    Urological Oncologist. ? I did not know there was such a thing till the hospital explained my husbands urologist special training in his field..however thatdid not stop him from asking for our permission to bring  in a medical oncologist/with immunotherapy background to look everything over and meet with us too..which ended up being what we needed realitivly quickly..the more eyes on the problem the better. Huggs 

     I was mistaken ...Emory has

     I was mistaken ...Emory has a Uro-Oncology Center but, looking again, it doesn't look as though anyone is actually designated as a Urological oncologist - I just made that leap I suppose. No one has mentioned bringing anyone else on board, however I haven't seen anyone since I had "the" appointment.

    I will say this, at first I didn't think 3 weeks was that long of time to wait between "You have cancer" and surgery but it seems aas though it is taking forever!!! I am trying to stay all happy happy like its no big deal but with each day its getting harder and harder to do. I know I should 'not worry' and 'focus on other things' but I'm finding that that's easier said than done at times. Somedays I feel like a 4 year old with ADD lol

    Thanks for the insight!

  • todd121
    todd121 Member Posts: 1,448 Member

    Urological Oncologist. ? I

    Urological Oncologist. ? I did not know there was such a thing till the hospital explained my husbands urologist special training in his field..however thatdid not stop him from asking for our permission to bring  in a medical oncologist/with immunotherapy background to look everything over and meet with us too..which ended up being what we needed realitivly quickly..the more eyes on the problem the better. Huggs 

    Urological Oncologist vs Medical Oncologist

    Then there is the plain old "urologist". It took me a few weeks to sort this naming of specialists out. I think the naming is confusing and misleading. So if you want something cut out, see a urologist or a urologic oncologist (better with regards to tumors and laprascopic surgery and partial nephrectomies), but if you want a sort of "systems specialist" with regards to cancer and someone that treats systemic/metastatic disease with chemo, radiation (and might recommend surgery but not likely to do it), then see a medical oncologist.

    The urologic oncologist is a urologist/surgeon first and then specialized in removing tumors by surgical means, where the medical oncologist often is an internal medicine doctor first (often with a specialty in either hematology or immunology) who then specialized in treating cancer mostly with chemotherapy.

    It sounds like you have a good doc if he brought a medical oncologist on board quickly. Mine did not. In fact, I had to go and do it myself. Now, my doc did consult other specialists when trying to decide if he could do a partial or it had to be a radical. He mentioned that. I was glad for it.

    I agree. The more eyes on it, the better.

    Todd

  • AprilandChuck
    AprilandChuck Member Posts: 110
    MeMeJoy said:

     I was mistaken ...Emory has

     I was mistaken ...Emory has a Uro-Oncology Center but, looking again, it doesn't look as though anyone is actually designated as a Urological oncologist - I just made that leap I suppose. No one has mentioned bringing anyone else on board, however I haven't seen anyone since I had "the" appointment.

    I will say this, at first I didn't think 3 weeks was that long of time to wait between "You have cancer" and surgery but it seems aas though it is taking forever!!! I am trying to stay all happy happy like its no big deal but with each day its getting harder and harder to do. I know I should 'not worry' and 'focus on other things' but I'm finding that that's easier said than done at times. Somedays I feel like a 4 year old with ADD lol

    Thanks for the insight!

    Scared is normal whether its

    Scared is normal whether its 3 days or 3 weeks give yourself a break...this kind of news will rattle the calmist of people..praying for you to have a good surgery and recovery..and for you to get good news after..hugggss

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    todd121 said:

    Urological Oncologist vs Medical Oncologist

    Then there is the plain old "urologist". It took me a few weeks to sort this naming of specialists out. I think the naming is confusing and misleading. So if you want something cut out, see a urologist or a urologic oncologist (better with regards to tumors and laprascopic surgery and partial nephrectomies), but if you want a sort of "systems specialist" with regards to cancer and someone that treats systemic/metastatic disease with chemo, radiation (and might recommend surgery but not likely to do it), then see a medical oncologist.

    The urologic oncologist is a urologist/surgeon first and then specialized in removing tumors by surgical means, where the medical oncologist often is an internal medicine doctor first (often with a specialty in either hematology or immunology) who then specialized in treating cancer mostly with chemotherapy.

    It sounds like you have a good doc if he brought a medical oncologist on board quickly. Mine did not. In fact, I had to go and do it myself. Now, my doc did consult other specialists when trying to decide if he could do a partial or it had to be a radical. He mentioned that. I was glad for it.

    I agree. The more eyes on it, the better.

    Todd

    A note of good cheer

    It appears others have sent many positive notes to sustain you.  And I wish you well as you begin the surgery and recovery phase.  Then you will be able to get on with your life and enjoy the 8 year old.

    For those of us who've been on the testing merry-go-round, we have found that we have lots of cysts in various organs-pancreas, what's left of the liver, the other kidney, etc.  Had we not had cancer and gone through a myriad of ultrasounds, bone scan, CT'sssssssssss,etc., and PET scan, & blood tests, we would have lived our entire life not knowing about the cysts.

    But, they caught yours, and you're having that sucker taken out.  Hope you're up and back on your feet rapidly.  On this side of the pond, there are many tough nurses who say, "Let's go for a walk."  And you look at her/him and say, "You've got to be kidding."  Baby steps, first.

    I had my first surgery in 2006, diagnosed by untrasound for what might have been gallstones on 4/29 that year.  It's 7 years, and 4 years cancer free, but who's counting?   ME and my family and friends.

    Sounds like you have your ducks in a row and a great attitude.  Keep it up.

    Donna