New renal cell carcinoma dx

todd121

Srashedb said:

Questions

my husband had a urologist/surgeon and now sees a urologist/oncologist; the latter does not do surgeries, only deals with urologic cancers.

we were told that renal oncologists would be a very small medical practice. 

Am I missing something?

Sarah

RCC Oncologists

It's true that there aren't many. It is a small specialty, because it's a rarer cancer type. But there are medical oncologists who specialise in this. As I recall you live in the same area I do in Southern California? There's Dr. Pal at City of Hope, Dr. Figlin at Cedars Sinai, and Dr. Quinn at USC, just to name a few.

A regular medical oncologist will see at most a few cases of kidney cancer a year (some only see a handful in a career, depending on what types of cancers they specialize in). Dr. Figlin told me recently at one of his talks that he sees 20 patients a week with kidney cancer.

Urologists are not usually oncologists. Urologists are usually surgeons who have specialized in genitourinary surgery. When you see a specialty of "urologic oncologist", these are also usually surgeons. Once the cancer spreads outside of the kidney or genitourinary tract, they don't treat it. They refer you to a medical oncologist, who's primary specialty is usually someone that studied internal medicine, and then went on to study hematology and oncology (studying and treating cancer with chemotherapy). Urologic oncologists do surgery, not chemotherapy or even treat metastatic cancer.

The best choice for us following surgery is to be followed by a medical oncologist who is a specialist in RCC (there aren't a lot of them). They know where the cancer is likely to spread, what kinds of tests to order to look for it, and what it looks like when it spreads, and how to treat it when it does spread.

The next best choice for us following surgery is a medical oncologist with some experience in RCC, or willing to read up on it and study up on it (or call experts on it).

You can be followed by a urologic oncologist if you wish, but they will most likely just give you the minimum standard of care, which is a chest X-ray and a CT of the abdomen and pelvis every 6 months for 2 years, then annually to 5 years.

If I had a more rare type of RCC, or a more agressive grade like 3/4, or had a large tumor putting me in Stage 2 or 3, I'd want to be followed by someone who really knows RCC, if at all possible. For me,  I had Stage 3a and Grade 3. I decided to drive an extra hour to the cancer center where an RCC specialist practices. If I had been Stage 1 grade 1, I probably would have gone with a local medical oncologist and skipped the long drive as long as I was NED.

I hope I'm not confusing anyone. The names of these specialities is very confusing. I agree. I particularly despise the term "urologic oncologist". I think it's deceiving.

Todd

 

Srashedb

todd121 said:

RCC Oncologists

It's true that there aren't many. It is a small specialty, because it's a rarer cancer type. But there are medical oncologists who specialise in this. As I recall you live in the same area I do in Southern California? There's Dr. Pal at City of Hope, Dr. Figlin at Cedars Sinai, and Dr. Quinn at USC, just to name a few.

A regular medical oncologist will see at most a few cases of kidney cancer a year (some only see a handful in a career, depending on what types of cancers they specialize in). Dr. Figlin told me recently at one of his talks that he sees 20 patients a week with kidney cancer.

Urologists are not usually oncologists. Urologists are usually surgeons who have specialized in genitourinary surgery. When you see a specialty of "urologic oncologist", these are also usually surgeons. Once the cancer spreads outside of the kidney or genitourinary tract, they don't treat it. They refer you to a medical oncologist, who's primary specialty is usually someone that studied internal medicine, and then went on to study hematology and oncology (studying and treating cancer with chemotherapy). Urologic oncologists do surgery, not chemotherapy or even treat metastatic cancer.

The best choice for us following surgery is to be followed by a medical oncologist who is a specialist in RCC (there aren't a lot of them). They know where the cancer is likely to spread, what kinds of tests to order to look for it, and what it looks like when it spreads, and how to treat it when it does spread.

The next best choice for us following surgery is a medical oncologist with some experience in RCC, or willing to read up on it and study up on it (or call experts on it).

You can be followed by a urologic oncologist if you wish, but they will most likely just give you the minimum standard of care, which is a chest X-ray and a CT of the abdomen and pelvis every 6 months for 2 years, then annually to 5 years.

If I had a more rare type of RCC, or a more agressive grade like 3/4, or had a large tumor putting me in Stage 2 or 3, I'd want to be followed by someone who really knows RCC, if at all possible. For me,  I had Stage 3a and Grade 3. I decided to drive an extra hour to the cancer center where an RCC specialist practices. If I had been Stage 1 grade 1, I probably would have gone with a local medical oncologist and skipped the long drive as long as I was NED.

I hope I'm not confusing anyone. The names of these specialities is very confusing. I agree. I particularly despise the term "urologic oncologist". I think it's deceiving.

Todd

 

Northern CA

Todd:

we actually live in Northern California although we have a son in Southern CA so travel there is not a problem.

i planned on attending the conference with Dr. Figlin in February but the docs here changed my husband's scan schedules to the 21st and his appointment to the 24th. As it turned out, our second grandchild was born that day so good scans and new baby on the same day was great!

at UCSF, we had a urologist surgeon do the nephrectomy and now a urologist/oncologist. They work together so the communication was great. The surgeon read the path report and had a different take than the oncologist.

i contacted Dr. Figlin's office about the vaccine trial he is doing with stage 4 renal cancer but unfortunately, he is only working with patients before the nephrectomy.

If, at some point, his scans show growth, we would definitely get consultations in southern ca. We met with a Ucla oncologist last summre.

Sarah

todd121

Srashedb said:

Northern CA

Todd:

we actually live in Northern California although we have a son in Southern CA so travel there is not a problem.

i planned on attending the conference with Dr. Figlin in February but the docs here changed my husband's scan schedules to the 21st and his appointment to the 24th. As it turned out, our second grandchild was born that day so good scans and new baby on the same day was great!

at UCSF, we had a urologist surgeon do the nephrectomy and now a urologist/oncologist. They work together so the communication was great. The surgeon read the path report and had a different take than the oncologist.

i contacted Dr. Figlin's office about the vaccine trial he is doing with stage 4 renal cancer but unfortunately, he is only working with patients before the nephrectomy.

If, at some point, his scans show growth, we would definitely get consultations in southern ca. We met with a Ucla oncologist last summre.

Sarah

Urologist/Oncologist

Hi Sarah,

You had mentioned before that you're in SF. I think I got confused somehow.

I don't know what a urologist/oncologist that doesn't do surgery is. I've never heard of that. My urologist oncologist was a surgeon. Is your husband's urologist/oncologist a "medical" oncologist? These guys normally are MD's who studied internal medicine, followed by hematology, followed by oncology. They are not normally "urologists". Urology is a surgical specialty.

Perhaps your husband's urologist/oncologist is a medical oncologist specializing in cancers of the genitouinary tract? I've never heard of that. Or perhaps he/she went a different route altogether and was a urologist first, and then did an oncology fellowship? You might ask if he/she treats metastatic cancer using chemo/radiation and other treatments and manages the care of patients with metastatic disease. I'd be curious to know what's going on. Because so far in our discussions here on the board this past 18 months, I've never heard of a medical oncologist that called themselves a urologist/oncologist.

That's interesting about Dr. Figlin's trial. I didn't know they had many Stage 4 patients that had never had a nephrectomy. How does that happen? Are they only looking at patients that were caught late after it had spread? Or only those that couldn't have the nephrectomy for some reason? It seems like they almost always do a nephrectomy.

I don't know the names of specialists at UCLA. Dr. Figlin came from there as did Dr. Pal. I know there are still some good specialists there that know RCC.

At that last patient conference, I heard Dr. Quinn from USC speak. I really liked him. If I ever needed another opinion, that's where I would go. Dr. Figlin was Dr. Pal's mentor. I've always kept in the back of my mind the idea that another opinion outside of those two might be a good idea, since they studied together.

Best wishes to you and your husband. And congrats on the grandbaby!

Todd

texMD

icemantoo said:

Oncologist follow uo

Randa,

 

The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

 

Icemantoo

My wife too was 31 when she

My wife too was 31 when she was diagnosed; but unfortunately the tumor had extended into the lymph nodes by that point.  Since that time, I have come to find a few others diagnosed at such a young age.  It truly is baffling.  As a physician, it bothers me that there's confusion on the board about the difference between urologists and oncologists -- physicians as a group need to do a better job of educating our patients and referring them appropriately when needed.  My personal opinion is that any unusual presentation/unusual cancer/unusual pathology should best be handled by a large academic cancer hospital with physicians who regularly interact, particpate in tumor boards, run clinical trials, etc.  However, this is not to discount the excellent care that can be had with private practice groups treating cancer in the community. Ultimately, the best thing is to have an educated patient who isn't afraid to ask questions of the physician, ie, "Would a CT scan be better than a Chest x ray?", "I'm really concerned about the cancer spreading, should I see an oncologist to make sure we order the right blood work and scans?"  In our experience, we waited until the scans showed progression until we met with the oncologist even though there was lymph node involvement at the time of the nephrectomy/lymphadenectomy.  But we knew the literature, and we knew the oncologist and urologist were communicating and knew exactly what tests were to be ordered and what would prompt a referral.

Srashedb

todd121 said:

Urologist/Oncologist

Hi Sarah,

You had mentioned before that you're in SF. I think I got confused somehow.

I don't know what a urologist/oncologist that doesn't do surgery is. I've never heard of that. My urologist oncologist was a surgeon. Is your husband's urologist/oncologist a "medical" oncologist? These guys normally are MD's who studied internal medicine, followed by hematology, followed by oncology. They are not normally "urologists". Urology is a surgical specialty.

Perhaps your husband's urologist/oncologist is a medical oncologist specializing in cancers of the genitouinary tract? I've never heard of that. Or perhaps he/she went a different route altogether and was a urologist first, and then did an oncology fellowship? You might ask if he/she treats metastatic cancer using chemo/radiation and other treatments and manages the care of patients with metastatic disease. I'd be curious to know what's going on. Because so far in our discussions here on the board this past 18 months, I've never heard of a medical oncologist that called themselves a urologist/oncologist.

That's interesting about Dr. Figlin's trial. I didn't know they had many Stage 4 patients that had never had a nephrectomy. How does that happen? Are they only looking at patients that were caught late after it had spread? Or only those that couldn't have the nephrectomy for some reason? It seems like they almost always do a nephrectomy.

I don't know the names of specialists at UCLA. Dr. Figlin came from there as did Dr. Pal. I know there are still some good specialists there that know RCC.

At that last patient conference, I heard Dr. Quinn from USC speak. I really liked him. If I ever needed another opinion, that's where I would go. Dr. Figlin was Dr. Pal's mentor. I've always kept in the back of my mind the idea that another opinion outside of those two might be a good idea, since they studied together.

Best wishes to you and your husband. And congrats on the grandbaby!

Todd

Todd:
my husband's doctor is

Todd:

my husband's doctor is an oncologist with genounitary specialty; I was using terminology incorrectly. The surgeon/urology is in the same office.

The trial with the vaccine that Dr. Figlin is currently involved with seeks newly-diagnosed stage 4 kidney cancer before their nephrectomy. The reason is he wants the kidney freshly removed so the vaccine can be made.

Where does or did your cousin practice? the oncologist is at UCSF and his name is Chuck Ryan.

we went to UCLA last summer to get a consultation and he was a urologist but my husband wanted the spinal surgery done first because he was terrified of a fracture. Most of the opinions we got concurred with that except, interestingly, the surgeon who did the spinal.

he is on the 3-month plan until September (a year post nephrectomy) and, IF, the scans are good, it will be every 4 months.

thanks for the congrats on the new granddaughter; we're having a grandson this summer at City of Hope. My son feels great about the place for his wife who might have delivery issues from a botched spinal surgery when she was 12.

it is great that you are letting people know how important it is to have experienced oncologists. The first, head of oncology department where we live had NO experience with kidney cancer but it didn't stop him from giving an opinion based on one MRI that it would be unusual to make it a year and to just hope for Christmas. I sent the MRI to Mayo for setting up consultation and they called back asking where the rest of the tests were because it was impossible to say much with just that one MRI.

Ok, then, we're out of the first oncologists' office; I didn't like him since he pressured me to get a particular treatment for breast cancer (22 years ago) and instead of wishing me well when I wanted to get a second opinion, he actually said "hope you don't regret it; you don't have enough time for another opinion"

Sarah