I'm just curious if your gyn/oncologist was also your surgeon? I just assumed that was the way it is for everyone, but my friend just got diagnosed with breast cancer and she has an oncologist and a surgeon?
The gynecological oncologist did my surgery and does all the post-treatment exams. But I had a separate medical oncologist who prepared the chemo plan and managed the chemotherapy delivery process. Radiation was overseen by a radiation oncologist.
I have my gyn/onc who did my surgery and is my "primary" doc and I have a medical onc who does the chemo. I didn't do radiation, but did meet with a rad/onc "just in case" and is on stand by if I ever need radiation.
Gynecologic oncologists are trained to manage both the surgeries and the chemo. Mine did both. I suppose some prefer to pass the chemo off to a medical oncologist. On the other hand, breast surgeons are not trained to manage the chemo, so they don't.
Radiation, as far as I know, is always handled by radiation oncologists for all tumor types. Maybe there are some exceptions. But radiation is extremely complex.
My first GO that I saw does the surgery, and also was providing chemo and office visits. I did not like the idea of the surgeon also providing chemo, etc. and I just didn’t like the guy after seeing him. To me only having one person was not prudent, I was worried that he would miss something, dismiss something, or just get sick himself (he was in his late 60's). Plus the comparison of a single provider who may or may not be up on all the latest care, techniques or rapidly evolving therapies was a bit scary versus the team approach by people who were very specialized at a research and teaching hospital. My second opinion was at Mayo where they have a team approach. My GO surgeon did the surgery, which is what she specialized in. I then had a different GO take over my case who reviewed all of my test results, surgical results, confirmed my staging, created a treatment plan and recommended the chemo, radiation plan. I had another GO radiologist who advised me on the brachytherapy, and gave me the radiation. I have a CNP who I saw during treatment and after I was finished for scans and bloodwork. I am now seeing an oncologist as I am NED, but I also had sessions with nurses who did patient education, and survivorship education. So the advantage is that many GO eyes see your case, and a highly trained NP follows up. I am comfortable with that. The downside is that I don’t get to form a relationship with my doctors, but my case was extremely uncomplicated so I did not need any extra care. I shudder to think if I had stayed with the jack of all GO, who did everything, how much I would have disliked or distrusted his judgement. But there are many incredible doctors who are not affiliated with a large institution that are 1st rate. In my case I was looking more for a facility that handled lots of the rare USPC as I had no idea if I was going to be staged 1a or much worse.
Denise
Edit: My point is that I don’t think one way or the other affects the outcome based upon the anecdotal evidence here. The most important thing for ME was the confidence in my team having seen this cancer MANY times, in all stages and having seen the many reactions to the myriad side effects. I trust the team approach. Another may want and need the comfort of one person managing their care, and there is a lot of merit to that approach. I remember initially being so distraught, so fragile, so vulnerable that knowing I had the best team I could get helped me to cope. As long as you feel you are getting the best standard of care how many docs or where you get treatment should not matter. The psychological component of this disease is almost as important as the physical.
Yes, exactly to your edit. That's what I was looking for: breath and depth of experience, preferrably via more than one person. I have a rare and unpredictable cancer (Grade 3, undifferentiated, low hormone, high neuroendocrine content). A surgeon who'd been out of residency for 4 years, regardless of how (reputedly) great a surgeon she was, simply didn't have the experience to develop a comprehensive treatment plan. My radiation oncologist, however, was the stereotypical crusty older man who knows EVERYTHING in his field. Since radiaton is the only thing that has consistently worked on my cancer, I was thrilled to have him on board as I shopped around for another oncologist.
I also have Grade 3, undifferentiated, low hormone cancer, which as you well know is scary due to its aggressive nature and rarity. I feel very glad that I am working with a Team (oncology gyn surgeon, gyn oncologist and gyn radiation oncologist) affiliated with a teaching/research hospital. I was also able to get a second opinion of the pathology from a cancer center. Still, because there is so little data and research, it's difficult to feel comletely confident that anyone knows from any substantial experience whether what they're recommending and I'm experiencing is that effective. Yet, it's all I can do so I've decided to get on board and follow instructions. My team has been good at listening to what I have to say and making adjustrments to reduce noxious side effects as much as possible. I am impressed with my Radiation Oncologist because of her thorough eplanations and warm, encouraging manner. I'm less enthusiastic about her recommendation for 6 brachytherapy treatments as it seems like many people get only three. I'll cross that bridge when I come to it! Mary Ann
Mary Ann, I got 5 brachy treatments. They were a lower dose than the standard 3 to reduce any damage to my vaginal tissue. You may want to ask them if that is the reason for the 6. I can tell you it has been 3.5 years since my treatment and I haven't had any issues. I stopped using the dialator about a year ago and so far, so good. I'm still sexually active but not nearly as often as we used to be... Hope this helps!
I will definitely ask and I thank you for your response. In my head, I was thinking she was recommending 6 treatments because my cancer type is more aggressive than those who get three treatments. I try not to get too far ahead of myself when I don't have the information to make a reasonable conclusion, but my anxiety gets the better of me unfortunately. I know a lot of us fill in the gaps of our knowledge with our fears!
My gynecologist did the biopsies and D&C. She performed a lot of hysterectomies, but not for cancer.
Then when it came positive for cancer, she said she couldn't treat me and sent me to their gynecologist oncologist who did the surgery. I got adenocarcinoma, stage 1A, type 3.
Gynecologist oncologist sent me to her radiologist oncologist for 3 brachitherapy treatments and to a geneticist to find out if I have Lynch Syndrome.
This is an interesting question, and one I had myself. I went from biopsy to hysterectomy to chemotherapy in VERY short order, so I took some time for the dust to settle and my lack of confidence in my oncology surgeon to set in. Upon quizzing the nurse navigator at my hospital - where, incidentally, Dr. Not-Wonderful has head of gynecological oncology - she explained that the model for gyne onc was different than other cancer specialties. In our corner of the world, the surgeon was also the treating oncologist, for no reason that she could articulate other than "that's how the doctors decided to do it". Made absolutely NO sense to me, and it was increasingly clear that my surgeon was way over her head once I was sewn up and healed. I left that practice and went to someone in a traditional oncology/hematology practice, and never looked back. If there's any legitimate medical reason for gynecological oncology to follow their own model, I'd love to know what it is as it made, and makes, no sense to me.
Like derMaus, I went from biopsy to surgery to chemo in no time flat, and I never thought to question that my gyne onc was in charge of all of it......even till just now when I read these comments! I suppose I just figured that every cancer surgeon handled the chemo too. I did get a second opinion with a gyne-onc at MD Anderson and she concurred with my treatment plan, but now that I look back at the nightmare I had with the first chemo and having to change it up, I wonder if I should have asked for a medical oncologist to consult for the chemo. Food for thought!
I was done with treatment before I started reading this board, but I was surprised to learn that most women's' gynecological oncologists handled both the surgery and chemotherapy since my hospital did this differently. I hadn't realized my experience wasn't the only approach that could be taken for treatment.
The medical oncologist did propose a different chemo strategy for my MMMT cancer than the usual 6 cycles of Paclitaxel/Carboplatin. His explanation of why he was recommending what he did made sense to me and that's the protocol that was used.
Of course I don't know if having chemo done by the medical oncologist will be any more successful in the long run than if the gynecological oncologist had handled that process. Only time will tell.
Very common to have gyn onc surgeon, plus a medical oncologist, who often specializes in breast and gyn malignancies. After med school, a GYN would do 4 years of GYN residency, then a GYN/ONC surgical fellowship. A medical oncologist would do three years of internal medicine, then an oncology fellowship. To me, it seems that it would be challenging to do the training for both - to say the least.
the different opinions are interesting. I had a biopsy done by a regular gyn, when it came back as clear cell cancer I was told to find a gyn/onc. I researched my area and found my highly trained and respected Dr. at a large cancer center near me. She did the surgery and the chemo plan, I like her a lot, she is one of several specialists at the cancer center, so I feel like the knowledge base is pretty broad. I did go to a radiation Dr. for brachytherapy. My gyn/onc Dr. even took my port out, she said she usually recommends leaving it in longer but if I wanted mine out she was ok with that.
Originally I had surgery by a gyn oncologist, followed by radiation managed by a radiation oncologist. In the ensuing years my surgeon left and I was followed by another gyn/onc until being released. Subsequently I was diagnosed with a recurrence/metastasis, and my chemo was managed my a medical oncologist and radiation by the radiation oncologist again. I am also monitored by the gyn oncologist,, although no more surgery. Oh, and the interventional radiologist who did the biopsy for the recurrence. I really liked him.
You had adenocarcinoma stage 1, grade 1, had radiation and then seven years later you had a recurrence? I have a friend who had that and was not given any treatment. Do you mind telling me where was your recurrence?
Yes, unfortunately that's what happened. Well, it was discovered six years later. I had occasional pain in my hip, had a CT scan a couple of years after surgery - nothing showed up. Because it was intermittent, it was assumed to be due to aging. It continued and became more frequent and eventually I went to an ortho doctor who got an MRI, which showed a pelvic wall tumor that invaded the hip joint. When I had the PET scan it showed mets to both lungs.
May I ask where your friend's cancer recurred, and why they chose not to treat it?
My friend's cancer didn't recurred. She had adenocarcinoma stage 1a, grade 1. I usually don't see it treated by anything other than a hysterectomy, so that's all she got. I was surprised you had a recurrence with such a low stage and grade. Also surprised you got brachytherapy. I got 3 treatments of brachitherapy because mine was stage 1a, grade 3. I hope everything goes smoothly with your treatment. Hugs.
My apologies. I misunderstood what you said at first about your friend. Yes, many women do not have further treatment. The doctors at my cancer center all meet and discuss cases, and they recommended the brachytherapy. Even though mine was less than 50% through the myometrium, it was close, so I was almost 1b. In addition, my family history for cancer is bad, although I don't know if that influenced the recommendation.
But yes, my doctors were astonished at my recurrence, especially so late. Although who knows at what point it might have been visible on a scan. Two years out, nothing. They went back and looked at that scan again, knowing where it was, and still couldn't find it.
Just don't ever let anyone tell you that if the pain is intermittent, it's not cancer. Currently the company that approves or denies scans for my insurance company is refusing a PET scan because "if it comes and goes, it's not cancer," despite the documentation that I am living proof to the contrary.
Thanks, Primavera. Just to clarify, it was a year and a half ago that my recurrence was found. I had radiation and chemo and finished up last summer. Taking letrozole now. So far so good, as everything is shrinking, but I haven't yet been declared NED.
I'm glad your tests are coming back clear and hope you get good news from the genetic testing.
There are different levels of 1A. , no malignancy in the hysterectomy specimen, malignanncy confined to the endometrium, and myometrial invasion to 50%. They have different treatments but are all 1A.
Joined: Jan 2018
Doctors
The gynecological oncologist did my surgery and does all the post-treatment exams. But I had a separate medical oncologist who prepared the chemo plan and managed the chemotherapy delivery process. Radiation was overseen by a radiation oncologist.
Joined: Apr 2019
my team of professionals
I have my gyn/onc who did my surgery and is my "primary" doc and I have a medical onc who does the chemo. I didn't do radiation, but did meet with a rad/onc "just in case" and is on stand by if I ever need radiation.
Joined: Feb 2018
Gynecologic oncologists are
Gynecologic oncologists are trained to manage both the surgeries and the chemo. Mine did both. I suppose some prefer to pass the chemo off to a medical oncologist. On the other hand, breast surgeons are not trained to manage the chemo, so they don't.
Radiation, as far as I know, is always handled by radiation oncologists for all tumor types. Maybe there are some exceptions. But radiation is extremely complex.
Joined: May 2017
Mine did both
My Gyn/On c was also my surgeon. A Radiation Oncologist handled radiation. My surveillance is with a P.A.
Joined: Jul 2018
Depends on where you go for treatment
My first GO that I saw does the surgery, and also was providing chemo and office visits. I did not like the idea of the surgeon also providing chemo, etc. and I just didn’t like the guy after seeing him. To me only having one person was not prudent, I was worried that he would miss something, dismiss something, or just get sick himself (he was in his late 60's). Plus the comparison of a single provider who may or may not be up on all the latest care, techniques or rapidly evolving therapies was a bit scary versus the team approach by people who were very specialized at a research and teaching hospital. My second opinion was at Mayo where they have a team approach. My GO surgeon did the surgery, which is what she specialized in. I then had a different GO take over my case who reviewed all of my test results, surgical results, confirmed my staging, created a treatment plan and recommended the chemo, radiation plan. I had another GO radiologist who advised me on the brachytherapy, and gave me the radiation. I have a CNP who I saw during treatment and after I was finished for scans and bloodwork. I am now seeing an oncologist as I am NED, but I also had sessions with nurses who did patient education, and survivorship education. So the advantage is that many GO eyes see your case, and a highly trained NP follows up. I am comfortable with that. The downside is that I don’t get to form a relationship with my doctors, but my case was extremely uncomplicated so I did not need any extra care. I shudder to think if I had stayed with the jack of all GO, who did everything, how much I would have disliked or distrusted his judgement. But there are many incredible doctors who are not affiliated with a large institution that are 1st rate. In my case I was looking more for a facility that handled lots of the rare USPC as I had no idea if I was going to be staged 1a or much worse.
Denise
Edit: My point is that I don’t think one way or the other affects the outcome based upon the anecdotal evidence here. The most important thing for ME was the confidence in my team having seen this cancer MANY times, in all stages and having seen the many reactions to the myriad side effects. I trust the team approach. Another may want and need the comfort of one person managing their care, and there is a lot of merit to that approach. I remember initially being so distraught, so fragile, so vulnerable that knowing I had the best team I could get helped me to cope. As long as you feel you are getting the best standard of care how many docs or where you get treatment should not matter. The psychological component of this disease is almost as important as the physical.
Joined: Nov 2016
Yes, exactly!
Yes, exactly to your edit. That's what I was looking for: breath and depth of experience, preferrably via more than one person. I have a rare and unpredictable cancer (Grade 3, undifferentiated, low hormone, high neuroendocrine content). A surgeon who'd been out of residency for 4 years, regardless of how (reputedly) great a surgeon she was, simply didn't have the experience to develop a comprehensive treatment plan. My radiation oncologist, however, was the stereotypical crusty older man who knows EVERYTHING in his field. Since radiaton is the only thing that has consistently worked on my cancer, I was thrilled to have him on board as I shopped around for another oncologist.
Joined: May 2019
Feeling relatively confident in my Team.
I also have Grade 3, undifferentiated, low hormone cancer, which as you well know is scary due to its aggressive nature and rarity. I feel very glad that I am working with a Team (oncology gyn surgeon, gyn oncologist and gyn radiation oncologist) affiliated with a teaching/research hospital. I was also able to get a second opinion of the pathology from a cancer center. Still, because there is so little data and research, it's difficult to feel comletely confident that anyone knows from any substantial experience whether what they're recommending and I'm experiencing is that effective. Yet, it's all I can do so I've decided to get on board and follow instructions. My team has been good at listening to what I have to say and making adjustrments to reduce noxious side effects as much as possible. I am impressed with my Radiation Oncologist because of her thorough eplanations and warm, encouraging manner. I'm less enthusiastic about her recommendation for 6 brachytherapy treatments as it seems like many people get only three. I'll cross that bridge when I come to it! Mary Ann
Joined: Jun 2015
Mary Ann, I got 5 brachy
Mary Ann, I got 5 brachy treatments. They were a lower dose than the standard 3 to reduce any damage to my vaginal tissue. You may want to ask them if that is the reason for the 6. I can tell you it has been 3.5 years since my treatment and I haven't had any issues. I stopped using the dialator about a year ago and so far, so good. I'm still sexually active but not nearly as often as we used to be... Hope this helps!
Love and Hugs,
Cindi
Joined: May 2019
Thanks Cindi
I will definitely ask and I thank you for your response. In my head, I was thinking she was recommending 6 treatments because my cancer type is more aggressive than those who get three treatments. I try not to get too far ahead of myself when I don't have the information to make a reasonable conclusion, but my anxiety gets the better of me unfortunately. I know a lot of us fill in the gaps of our knowledge with our fears!
Love and Hugs to you as well,
Mary Ann
Joined: Mar 2019
Doctors
My gynecologist did the biopsies and D&C. She performed a lot of hysterectomies, but not for cancer.
Then when it came positive for cancer, she said she couldn't treat me and sent me to their gynecologist oncologist who did the surgery. I got adenocarcinoma, stage 1A, type 3.
Gynecologist oncologist sent me to her radiologist oncologist for 3 brachitherapy treatments and to a geneticist to find out if I have Lynch Syndrome.
Joined: Nov 2016
Interesting Question
This is an interesting question, and one I had myself. I went from biopsy to hysterectomy to chemotherapy in VERY short order, so I took some time for the dust to settle and my lack of confidence in my oncology surgeon to set in. Upon quizzing the nurse navigator at my hospital - where, incidentally, Dr. Not-Wonderful has head of gynecological oncology - she explained that the model for gyne onc was different than other cancer specialties. In our corner of the world, the surgeon was also the treating oncologist, for no reason that she could articulate other than "that's how the doctors decided to do it". Made absolutely NO sense to me, and it was increasingly clear that my surgeon was way over her head once I was sewn up and healed. I left that practice and went to someone in a traditional oncology/hematology practice, and never looked back. If there's any legitimate medical reason for gynecological oncology to follow their own model, I'd love to know what it is as it made, and makes, no sense to me.
Joined: Jan 2018
Two doctors
My gyno did the biopsy and D&C with hystscopy. Once cancer was confirmed I was turned over to a gyn/oncologist.
Joined: Feb 2018
Wow!
Like derMaus, I went from biopsy to surgery to chemo in no time flat, and I never thought to question that my gyne onc was in charge of all of it......even till just now when I read these comments! I suppose I just figured that every cancer surgeon handled the chemo too. I did get a second opinion with a gyne-onc at MD Anderson and she concurred with my treatment plan, but now that I look back at the nightmare I had with the first chemo and having to change it up, I wonder if I should have asked for a medical oncologist to consult for the chemo. Food for thought!
Joined: Jan 2018
Surprise to me too
I was done with treatment before I started reading this board, but I was surprised to learn that most women's' gynecological oncologists handled both the surgery and chemotherapy since my hospital did this differently. I hadn't realized my experience wasn't the only approach that could be taken for treatment.
The medical oncologist did propose a different chemo strategy for my MMMT cancer than the usual 6 cycles of Paclitaxel/Carboplatin. His explanation of why he was recommending what he did made sense to me and that's the protocol that was used.
Of course I don't know if having chemo done by the medical oncologist will be any more successful in the long run than if the gynecological oncologist had handled that process. Only time will tell.
Joined: Jun 2012
My gyn/ oncologist
did surgery and chemo. My next followup isn't till October or i would question my doc about the rationales behind the 2 options
Joined: Oct 2018
Very common to have gyn onc
Very common to have gyn onc surgeon, plus a medical oncologist, who often specializes in breast and gyn malignancies. After med school, a GYN would do 4 years of GYN residency, then a GYN/ONC surgical fellowship. A medical oncologist would do three years of internal medicine, then an oncology fellowship. To me, it seems that it would be challenging to do the training for both - to say the least.
Joined: Jan 2019
Interesting
the different opinions are interesting. I had a biopsy done by a regular gyn, when it came back as clear cell cancer I was told to find a gyn/onc. I researched my area and found my highly trained and respected Dr. at a large cancer center near me. She did the surgery and the chemo plan, I like her a lot, she is one of several specialists at the cancer center, so I feel like the knowledge base is pretty broad. I did go to a radiation Dr. for brachytherapy. My gyn/onc Dr. even took my port out, she said she usually recommends leaving it in longer but if I wanted mine out she was ok with that.
Joined: Feb 2016
Docs
I was treated at Fox Chase and have a gyn/onc and medical oncologist.
Joined: Jul 2019
Lots of Doctors!
Originally I had surgery by a gyn oncologist, followed by radiation managed by a radiation oncologist. In the ensuing years my surgeon left and I was followed by another gyn/onc until being released. Subsequently I was diagnosed with a recurrence/metastasis, and my chemo was managed my a medical oncologist and radiation by the radiation oncologist again. I am also monitored by the gyn oncologist,, although no more surgery. Oh, and the interventional radiologist who did the biopsy for the recurrence. I really liked him.
Joined: Mar 2019
Fridays Child
You had adenocarcinoma stage 1, grade 1, had radiation and then seven years later you had a recurrence? I have a friend who had that and was not given any treatment. Do you mind telling me where was your recurrence?
Joined: Jul 2019
Primavera
Yes, unfortunately that's what happened. Well, it was discovered six years later. I had occasional pain in my hip, had a CT scan a couple of years after surgery - nothing showed up. Because it was intermittent, it was assumed to be due to aging. It continued and became more frequent and eventually I went to an ortho doctor who got an MRI, which showed a pelvic wall tumor that invaded the hip joint. When I had the PET scan it showed mets to both lungs.
May I ask where your friend's cancer recurred, and why they chose not to treat it?
Joined: Mar 2019
Fridays Child
My friend's cancer didn't recurred. She had adenocarcinoma stage 1a, grade 1. I usually don't see it treated by anything other than a hysterectomy, so that's all she got. I was surprised you had a recurrence with such a low stage and grade. Also surprised you got brachytherapy. I got 3 treatments of brachitherapy because mine was stage 1a, grade 3. I hope everything goes smoothly with your treatment. Hugs.
Joined: Jul 2019
Primavera
My apologies. I misunderstood what you said at first about your friend. Yes, many women do not have further treatment. The doctors at my cancer center all meet and discuss cases, and they recommended the brachytherapy. Even though mine was less than 50% through the myometrium, it was close, so I was almost 1b. In addition, my family history for cancer is bad, although I don't know if that influenced the recommendation.
But yes, my doctors were astonished at my recurrence, especially so late. Although who knows at what point it might have been visible on a scan. Two years out, nothing. They went back and looked at that scan again, knowing where it was, and still couldn't find it.
Just don't ever let anyone tell you that if the pain is intermittent, it's not cancer. Currently the company that approves or denies scans for my insurance company is refusing a PET scan because "if it comes and goes, it's not cancer," despite the documentation that I am living proof to the contrary.
Joined: Mar 2019
I've learned a lot here
...about being proactive and vigilant, and about all the insurance companies denials. Hope it all goes smoothly for you.
Joined: Jul 2019
Thank you
Thanks, Primavera. Just to clarify, it was a year and a half ago that my recurrence was found. I had radiation and chemo and finished up last summer. Taking letrozole now. So far so good, as everything is shrinking, but I haven't yet been declared NED.
I'm glad your tests are coming back clear and hope you get good news from the genetic testing.
Joined: Jan 2019
Pain is subjective, in other words
Practitioners have to take your word for it. If you are worried about it, the pain is constant if you know what I mean.
Joined: Jul 2019
Thank you
Yes, I'm learning that. We'll see what happens with the next order.
Joined: Jan 2019
As far as 1A
There are different levels of 1A. , no malignancy in the hysterectomy specimen, malignanncy confined to the endometrium, and myometrial invasion to 50%. They have different treatments but are all 1A.