Oncology?

twinthings · June 2013

MDCinSC said:
Hi TwinThings!
I'm a little late to this, but I got away for the Father's Day weekend! I took a much needed respite from things.

I understand your concerns. My own was T1b Fuhrman Grade 3. As a result, and because of other things too detailed to explain regarding my history with radiation, I am getting bloodwork and chest xrays every 90 days with CT scans every anniversary. Compared to others here, I am quite lucky; virtualy cured, if not literally by comparison.

According to my reading, the difference regarding followups between grade 2 and grade 3 is the incidence of recurrence. With Grade 2, my reading says you are four times less likely to have recurrence than I.

That said, that is no reason to sit back and wait til you are symptomatic. Stay active, stay aggressive, get the oncologist and hold on until you get straight answers.

If your Urologist or Family Physician is uncomfortable with you getting an oncologist's opinion, then there is something wrong with THEM. Do what is right for you. Enjoy that little one! I have more of those grandbabies than I can count, it seems, and I love every one of them! I'm astonished my self, but I even have a GREAT grand daughter. I'mnot sure how that happened! I am far too young for that!

PAX,

Michael

Indeed, you are too young for great grandkids

Michael, thanks for chiming in!

Tomorrow will be my second post-op follow up appointment with my nephrologist. He will be doing blood work and chest x-rays. I can't decide if I should ask him again whether or not I need an oncologist or TELL him I'd like a referral to an oncologist. He's already told me I don't need one but I think I WANT one. I appreciate the fact that my cancer was caught early and that as a result of my radical nephrectomy, I am likely disease free. Having said that, given my strong family history of cancer and the fact that odds are rarely in my favor, I can't help but think an oncologist who specializes in RCC will be more knowledgeable about the latest advances and may even follow a different path of follow up care. As ridiculous as this is going to sound, I don't want my neph to think I don't trust his care and opinion. He's arguably one of the best with patients traveling near and far to see him and I have every faith in him.

I don't know why I'm so nervous asking him again, but I am. Unlike you, he's old enough to have ten great grandkids so, maybe he won't remember our prior conversation .

I noticed you mentioned your history with radiation...cancer previous to RCC? I'm not trying to be nosey but I was under the impression RCC wasn't responsive to chemo and/or radiation.

And finally, what does PAX stand for?

Sindy

twinthings · June 2013

Djinnie said:
Hi twinthings, I know this
Hi twinthings,

I know this is a very frightening time for you, a cancer diagnosis is very difficult to deal with. The main thing is that they caught your tumour early, and your surgeon has arranged follow up tests so quickly. I had a partial at the end of March, mine was T1b Grade 3. In Europe if the tumour was removed with clear margins(no signs of spreading) the follow up is 6 months later.

It sounds as if you have a good doctor, maybe not blessed with the best of people skills though. He may be more forthcoming after your X-rays. Your doctor should be able to put your mind at rest after your tests. Make sure you have all your questions ready for your appointment, and ask that he clears up all your concerns. He should not take it personally if you request a referral letter for an Oncologist, I am sure if he was in your shoes he would do the same.

We can only ever consider ourselves to be cancer free, not cured. Doctors can't make that sort of prediction, so it is very important to keep up with your scans, even after five years. I had a recurrence my first op was 10 yrs ago, so I know first hand that we can't be complacent. Look at the scans as a form of preventative medicine.

All the best

Djinnie x

Thanks for your thoughts, Djinnie. I suppose if anyone could offer advice, it'd be you. Sounds like you've had a decade to learn about RCC, bless your heart!

I will absolutely pay close attention to follow-up care and make certain I get all the necessary scans and tests, even if I have to pay out of pocket, especially after reading your story. So, thank you for being such an inspiration!

Tomorrow, I will be 1 day shy of three weeks post-op and will be seeing my nephrologist for my 2nd follow-up. I will ask him again, about the possibility of me seeing an oncologist and hope he will give me a referral. Time will tell.

You're a couple months further along in the recovery process than am I...please tell me it gets better. I don't pretend to have had it as bad as you, for mine was radical vs partial (doc told me far bigger incision and harder/longer recovery with partial) but boy do I still have a fair amount of discomfort, especially when sitting straight up, leaning forward and bending over..OUCH!

Sindy

Djinnie · June 2013

twinthings said:
Thanks for your thoughts, Djinnie. I suppose if anyone could offer advice, it'd be you. Sounds like you've had a decade to learn about RCC, bless your heart!

I will absolutely pay close attention to follow-up care and make certain I get all the necessary scans and tests, even if I have to pay out of pocket, especially after reading your story. So, thank you for being such an inspiration!

Tomorrow, I will be 1 day shy of three weeks post-op and will be seeing my nephrologist for my 2nd follow-up. I will ask him again, about the possibility of me seeing an oncologist and hope he will give me a referral. Time will tell.

You're a couple months further along in the recovery process than am I...please tell me it gets better. I don't pretend to have had it as bad as you, for mine was radical vs partial (doc told me far bigger incision and harder/longer recovery with partial) but boy do I still have a fair amount of discomfort, especially when sitting straight up, leaning forward and bending over..OUCH!

Sindy

I know what you mean about the discomfort, I felt as if someone had inflated an airbag under my ribcage. I found sitting very unomfortable, I used to have to lean back in a recliner. It will gradually ease up, you may have intermittent bouts of it as it tapers off. I don't have any real problems now, apart from constant digestive noise, my stomach sounds a bit like a drain from time to time. I am hoping that will settle down, it always sounds as if I am hungry.

All the best with your appointment tomorrow(:-)

Djinnie x

MDCinSC · June 2013

twinthings said:
Indeed, you are too young for great grandkids
Michael, thanks for chiming in!

Tomorrow will be my second post-op follow up appointment with my nephrologist. He will be doing blood work and chest x-rays. I can't decide if I should ask him again whether or not I need an oncologist or TELL him I'd like a referral to an oncologist. He's already told me I don't need one but I think I WANT one. I appreciate the fact that my cancer was caught early and that as a result of my radical nephrectomy, I am likely disease free. Having said that, given my strong family history of cancer and the fact that odds are rarely in my favor, I can't help but think an oncologist who specializes in RCC will be more knowledgeable about the latest advances and may even follow a different path of follow up care. As ridiculous as this is going to sound, I don't want my neph to think I don't trust his care and opinion. He's arguably one of the best with patients traveling near and far to see him and I have every faith in him.

I don't know why I'm so nervous asking him again, but I am. Unlike you, he's old enough to have ten great grandkids so, maybe he won't remember our prior conversation .

I noticed you mentioned your history with radiation...cancer previous to RCC? I'm not trying to be nosey but I was under the impression RCC wasn't responsive to chemo and/or radiation.

And finally, what does PAX stand for?

Sindy

Radiation and Pax

Pax, is a shortened form of Pax vobiscum, latin for "Peace be with you." It is often offered by priests in the Catholic Liturgy.

My radiation has nothing to do with RCC. When I was a child, I was treated with massive doses of radiation for, (are you ready for this?), ringworm on my scalp. Seriously! It was the hottest new medical treatment on the market. I have lots of scarring onmy scalp, made worse by 20+ years in the high desert of New Mexico.

Additionally, my generation played with the fluoroscope machines that were found in shoe stores back then! Seriously! You would put on new shoes then place your feet under the fluoroscope machine and then look in the window to see if the bones in your feet were being distorted by the shoes.

Radiation, back in the 50's, was considered a godsend for all kinds of things. It took all the mistakes they made to realize how dangerous it is.

LOL

May as well laugh. To quote Samuel Beckett, "Nothing's to be done!"

Michael

Darron · June 2013

MDCinSC said:
Radiation and Pax
Pax, is a shortened form of Pax vobiscum, latin for "Peace be with you." It is often offered by priests in the Catholic Liturgy.

My radiation has nothing to do with RCC. When I was a child, I was treated with massive doses of radiation for, (are you ready for this?), ringworm on my scalp. Seriously! It was the hottest new medical treatment on the market. I have lots of scarring onmy scalp, made worse by 20+ years in the high desert of New Mexico.

Additionally, my generation played with the fluoroscope machines that were found in shoe stores back then! Seriously! You would put on new shoes then place your feet under the fluoroscope machine and then look in the window to see if the bones in your feet were being distorted by the shoes.

Radiation, back in the 50's, was considered a godsend for all kinds of things. It took all the mistakes they made to realize how dangerous it is.

LOL

May as well laugh. To quote Samuel Beckett, "Nothing's to be done!"

Michael

PAX Michael

Not too many of us "good catholic boys" down here in the Bible Belt. Next you're going to tell me you are Italian too.

"...and with your spirit"

-Darron

MDCinSC · June 2013

Darron said:
PAX Michael
Not too many of us "good catholic boys" down here in the Bible Belt. Next you're going to tell me you are Italian too.

"...and with your spirit"

-Darron

Actually,

I'm Catholic "Light!" Episcopalian! LOL All of the ceremony, none of the guilt! Yeah, even to, sometimes, Latin in the liturgy!

We are also affectionately referred to as "Whiskey-palians," and the saying that where eer you find four Episcopalians gathered together, you are BOUND to find a fifth!

Michael

Darron · June 2013

MDCinSC said:
Actually,
I'm Catholic "Light!" Episcopalian! LOL All of the ceremony, none of the guilt! Yeah, even to, sometimes, Latin in the liturgy!

We are also affectionately referred to as "Whiskey-palians," and the saying that where eer you find four Episcopalians gathered together, you are BOUND to find a fifth!

Michael

Priest vs. Minister

You do know the difference between a catholic priest and a baptist minister?

The priest will say hi to you in the liquor store on Saturday.

should have posted that on on the funny bonz IV post.

MDCinSC · June 2013

Darron said:
Priest vs. Minister
You do know the difference between a catholic priest and a baptist minister?

The priest will say hi to you in the liquor store on Saturday.

should have posted that on on the funny bonz IV post.

More that shopuld have been on Funny Bonz IV

Two elderly ladies were talking.

“At our age, I don’t know what would be worse;
Parkinson”s or Alzheimer”s?" one said.

Her wise friend answered, “Oh I’d rather have
Parkinson’s, definitely Parkinson’s. Better to
spill half my wine than to forget where I keep
the bottle."

Texas_wedge · June 2013

MDCinSC said:
More that shopuld have been on Funny Bonz IV
Two elderly ladies were talking.

“At our age, I don’t know what would be worse;
Parkinson”s or Alzheimer”s?" one said.

Her wise friend answered, “Oh I’d rather have
Parkinson’s, definitely Parkinson’s. Better to
spill half my wine than to forget where I keep
the bottle."

Off topic

Yes, guys, better on the funnies thread.

However, at the risk of appearing obtuse, I have to ask Michael to explain the 'pisky' joke - 'BOUND to find a fifth'.

My only guess so far can't be right. I live in Scotland, but even where whiskey is drunk, as Eims can confirm, we're talking fourths not fifths in any respectable establishment! (Actually metrication has really screwed it up - let's have a dram!).

twinthings · June 2013

Djinnie said:
I know what you mean about the discomfort, I felt as if someone had inflated an airbag under my ribcage. I found sitting very unomfortable, I used to have to lean back in a recliner. It will gradually ease up, you may have intermittent bouts of it as it tapers off. I don't have any real problems now, apart from constant digestive noise, my stomach sounds a bit like a drain from time to time. I am hoping that will settle down, it always sounds as if I am hungry.

All the best with your appointment tomorrow(:-)

Djinnie x

Airbag under rib cage is a perfect description! Which is why I feel so much better in a reclined position. Also, for some reason I have an insatiable hunger for sweets! It's the strangest thing. Before my surgery, I certainly enjoyed the occasional sweet but for some reason, since my surgery, I can not get enough. My doctor told me today that he has had other patients say the same thing. He explained it by saying the human body functioning on one kidney can't process sugar as well as it does with two kidneys and it's natural to crave what your body can't toerate. Really?! That's just weird!!

Anyway, had tests done today. Still have blood in my urine but he wasn't concerned with it, so I guess I won't worry till he does. Will be anxioulsy awaiting other results. As for seeing an oncologist, he told me I will continue my care with him for 1 year, at which time, he will turn me over to an oncologist. He said an oncologist wouldn't do anything that isn't already being done. So, I guess I'll wait.

Sindy

twinthings · June 2013

MDCinSC said:
Actually,
I'm Catholic "Light!" Episcopalian! LOL All of the ceremony, none of the guilt! Yeah, even to, sometimes, Latin in the liturgy!

We are also affectionately referred to as "Whiskey-palians," and the saying that where eer you find four Episcopalians gathered together, you are BOUND to find a fifth!

Michael

Not better on the funnies thread

Oh Michael, after the day I had, I needed a good laugh and, between you and Darron, I certainly enjoyed one!

Thanks to the both of you!!

Sindy

MDCinSC · June 2013

Texas_wedge said:
Off topic
Yes, guys, better on the funnies thread.

However, at the risk of appearing obtuse, I have to ask Michael to explain the 'pisky' joke - 'BOUND to find a fifth'.

My only guess so far can't be right. I live in Scotland, but even where whiskey is drunk, as Eims can confirm, we're talking fourths not fifths in any respectable establishment! (Actually metrication has really screwed it up - let's have a dram!).

LOL

I'll take it in any form and quantity!

A fifth, at least in old (emphasiszing OLD) Yank parlance, was one fifth of a gallon!

Among our more conservative brethren, us Episcopalians are considered a bit over the top. Real wine, alcohol at church functions? Shocking!

When are you pouring? I'll work on updating my passport!

Michael

Oncology?

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