CSN Login
Members Online: 2

You are here

Six Weeks Post-Op: My Questions

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I took the following questions to my gyn onc who did my DaVinci robotic-assisted laparoscopic TH BSO and partial vaginectomy. He did not want to address my questions, and instead sent his PA in to talk with me and we went through them. Because they had a particular "vibe" going on at the clinic, she was also a bit patronizing, but not nearly as bad as he was. I think that given I was six weeks post op, and pretty exhausted and in "whirl wind" mode from January panicked e mail from doctor; February hysteroscopy / biopsy / polypectomy, followed by Formal Diagnosis of Endometrioid Adenocarcinoma, followed by March 24th major surgery, these questions aren't too "dumb."

What do you think? Were these too much? 

1. Given that "lysing" procedure was done on extensive adhesions, is there concern of having spread the cancer around. In surgical notes, it mentions that uterus is in three pieces. Was it cut up inside of me? Given I had endometriosis, is there a possibility that the endometrial tissue outside the uterus was cancerous too?

2. Why didn't the CT scan show the greater myometrial invasion of 83%? Before my surgery, the CT scan was supposed to show how much cancer was in the uterus. Why were you "surprised" by my pathology report?

3. Given that my level of cancer "surprised" you, would you have done the surgery open laparotomy rather than robotic laparascopy?

4. In my research, it's noted that Stage 1 B with LVSI and myometrial invasion of more than 50% can be similar to stage 3. Given that, should I do EBR rather than brachytherapy?

Further to that, some information in NIH says that LVSI is a prognostic factor that should be addressed in treatment. Given I have LVSI and 83% myometrial invasion, why not EBRT?

5. How important is brachytherapy to my survivorship?

6. Isn't the greater fear metastases? please discuss recurrence vs survivorship, and specifically, vag cuff vs. mets in lungs, brain etc. 

7. Question about apparatus following brachytherapy.

8. Another question about molecular subclass testing of my tumor.

 

Okay. So, here's my reason for including these questions in this site: I think that these sorts of questions should absolutely be on the table if a patient asks them. My Gyn Onc was angry the entire time I was asking them. Basically, he came in to "wrap up" answering, and I gave him a copy of these, and he asked if his PA did an okay job of addressing them, and I said, "YES, but could we please revisit the LVSI, myometrial thickness, and also---can I get a prognosis?"

He was extremely frustrated with me, and at that point, said, "If I had my death date in an envelope, do you think I'd want to see it?"

I said, "Well, that's not exactly relevant, as this is MY cancer, not yours."

He then said, "I had someone offer me a pet scan and I refused it. Why? the results are 'unactionable,' and if anyone offers you one, you better say no too."

***that was the LAST TIME I ever saw that Gyn Onc ***

 

CancerFreeSunny
Posts: 35
Joined: Sep 2018

You have a right to ask a "bazillion questions" and it's too bad he thinks you are bothing him. There are amazing Docs out there and you have a right to go find one you like and who treats your questions with genuine respect.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Like others in here who have suffered with doctors unwilling to answer questions, I am still "getting over" it. I did completely change cancer teams, which is never easy. New Gyn Onc, New gyn radiologist, new everything, new place. 

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Agree! but initially, I thought I was "bad" for being so curious and concerned about my body. 

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

It sounds like your original onc was a defensive and arrogant guy who chose to view your questions as a challenge to his competence. Good riddance. This is too tough a challenge in our lives to have a doctor who can't handle our desire to be our own good advocates and adds to our burden.

Like you, I like to go into my oncology appointments with questions based on my research and desire to be prepared for tough decisions. I have been fortunate that all of my oncologists have patiently worked through each question with me, even ones that challenged their recommendations, and we have had excellent conversations as a result. Several of them have commented that they don't see many patients "who have done their homework" as well as I have. If that's true, then it's likely there are oncologists out there who are used to patients more from a prior era, who quietly do what the good doctor says and put all their trust in him/her. Those kinds of oncologists better wake up: There are a lot of us who will not blindly trust our future to a god-like onc.

When I decided my original gyn onc needed replacing, I met with my prospective new onc and said to her, "I am looking for a doctor who will not expect me just to go along. I am looking for a doctor who is among the best at what she does, but does not confuse being the best with always knowing best what works for the life of every single patient. I expect to be a full partner in my care and you can expect I will speak up if I disagree or have strong doubts. Are you the kind of doctor who can handle that or would we not be well suited for each other?" I know that's what I said because we recorded the conversation, with her permission. She smiled and said, "We will be very well suited for each other. I very much prefer active engaged patients to passive ones. It tells me that you're really engaged in wanting to live!" Hired her on the spot :)

Tamlen

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I think you're absolutely right. Yes, he wanted to be the doctor gyn onc god figure. The Ramtha of my Uturus.

I am not into that doctor-god stuff, not at all.

This morning while attending to morning duties, it occurred to me that his expertise in doing robotic laparascopies and etc. might not extend to his general knowledge with biochem and all that. He spoke intelligently enough, but perhaps I did threaten him in some way. I'm pretty sure that he doesn't encounter many patients like me, to be honest. It must have scared the bejeezubs out of him?

 

MoeKay
Posts: 350
Joined: Feb 2004

I'm glad you've moved on to a new gyn-onc after the way you were treated.  I hope your new gyn-onc was or will be able to thoroughly answer all of your above questions, as well as those that you will have in the coming months and years.  I used to go into my gyn-onc's office with pages of questions at every visit.  He never once made me feel as though I was wasting his time and I never left the office without answers to all my questions.  He had no PA, so the buck always stopped with him.  I remained his patient for 15 years until his retirement, and I continued to have questions throughout the years, although after the first few years, the number of my questions became fewer.  At my gyn-onc's retirement party, he thanked me for all of my good questions over the years.  He said that my questions always kept him on his toes and made him think. 

Not all patients want to know all the specifics of their cancer diagnosis and treatment.  But for those who do, I believe an important part of the doctor's responsibility is to meet the patient where she/he is. 

Because my diagnosis was similar in several respects to yours (approximately 80% myometrial invasion and extensive LVSI), I had some of the same questions about your treatment that you listed in your post.  As a result, I would love to hear the responses you got/get to your questions, should you choose to post them, of course.  The internal and/or external radiation issue has always been an interesting debate, going back years before my treatment in 1999 and continuing to this day.  Also, because I had similar concerns about metastatic spread given my risk factors for recurrence, I would be very interested to hear what you gyn-onc had/has to say about the chemotherapy decision-making process.  At the time I was treated, chemo was not standard of care for early stage disease, but that stance appears to have changed to some extent over the ensuing years. 

Happy questioning!!

 

 

 

 

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I recorded, with permission, the entire conversation. I am including parts you asked about, MoeKay.

ME--Ok. So does that include the issue with the LVSI invasion? I feel like my risk is going to be with metastases rather than vaginal cuff recurrence. I’m less worried about vaginal cuff recurrence than metastases

 

DOC-- To a point, but think about it: We’ve already assessed your metastases risk by assessing the first lymph node in the chain. If your cancer is successful at overtaking a lymph node with cancer in it, now LVSI says it’s reached your nodes, but it hasn’t overtaken them. The fact that it was removed and shows no evidence of cancer means this: it means, ok, it got there, and the nodes did their jobs. They digested the cancer. That’s what they’re supposed to do. If it gets deep enough, it gets into those lymphatics. Lymphatics are your back up system to digest and kill the cancer. It’s like a vacuum system in your organs. If the system is functional, it kills your cancer….. Could there still be something we DIDN’T see? Well, Yes, there could.

 

ME --Yes, and I’ve always been that person we lands in the 2 to 3 % of people who’s going to get “the bad thing.” Whatever the thing is. My genetics are kinda bad. Physically strong, mentally strong, smart enough, but….

 

DOC--Well, you’re also reducing the risk of lymphatic reoccurrence by doing the vaginal brachytherapy. They show that doing the entire pelvic region radiation doesn’t decrease the risk any more. Just doing the radiation to the top of the vagina…..

 

ME--I’ve had my head in the phys PDQ, I’ve enjoyed talking with Carolyn about the molecular subclass of my cancer.

 

DOC--For this, It’s unimportant.  you don’t need any specific chemo or immunotherapy for this cancer. Just local control, period. Those therapies are for SYSTEMIC risks, which you don’t have. It’s not systemic enough…

 

ME--But could I know? Could we have that done, please?

 

DOC--I think it was requested, because you talked to Robert. He said it was pending. You could know, but I would warn you, for instance….this is tangential, but it’s not. Someone offered me a PET scan. They said it was free! Thousand dollar test. We need to calibrate our machine.

 

ME--So you did it?

 

DOC--No way in hell. I’m not crazy! Why would I want a test….

 

ME--I’m not crazy! (laughing). I want to know….

 

DOC--What I’m saying….it’s tangential….I don’t have a diagnosis,  you do….but what I’m saying is if someone offers YOU a pet scan, you should say no! Because you don’t have a risk, that Pet scan is not going to serve you an interest, but it’s going to find an abnormality. Your molecular analysis is going to find mutations….but they’re going to say NOT ACTIONABLE, so you’re going to know that your tumor has a lot of mutations, such as a negative prognostic variable, and there’s not a damn thing you can do about it. I would caution you to STOP READING.  BC if you start reading about things that you have zero control over, guess what. Just think about it.

 

ME--Well.

 

DOC--So I can reassure you and say there’s nothing we need to do about it.  But what does it mean? This article says this carries a worse prognosis…..do you really want to know that?? Do you really want to know that you might have a marker that you carry a greater risk of occurrence, and there’s not a damn thing you can do about it….

 

ME (getting incredibly angry) YES I DO, AND YOU WANNA KNOW WHY? Bc I have a master’s degree, and I’m a smart girl, and I want to freakin know!  I want to know so that I can change my diet, exercise more…have the carrot on the stick.

 

DOC--You can do those things…

 

ME--I’m doing THOSE THINGS NOW!

 

DOC--If it incites you to do those things…

 

ME --EXACTLY!

 

At this point, the Gyn Onc and I had pretty much realized that we were not a much made in heaven. He had ruffled my feathers. I had ruffled his. The discussion continued, but between his swearing and my exclamation about my advanced university education, it was pretty clear that it just wasn't going to work out...

MoeKay
Posts: 350
Joined: Feb 2004

Many thanks!  Perhaps he may have addressed hematogenous spread to sites such as the lungs and brain on another part of the tape.  While his above answers to your questions on metastasis appear to focus on lymphatic spread, it's my understanding that metastases to distant sites can also take place via the bloodstream.  https://pubmed.ncbi.nlm.nih.gov/27757531/ 

 

 

 

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

It was all new learning on my part, and I wasn't entirely comfortable with some of my questions, but considering I went from zero to sixty as we all have done, I feel like I learned quite a lot very quickly.

I'm not much of a biologist or scientist, but I know enough to work with specific topics and drill down. The night before my first post op appointment, I sat with the pathology report and kept coming back to two details:

a. myometrial invasion greater than 50%. Mine was 83%, with a 12-mm myometrium and a depth of 10 mm.

b. LVSI present. 

As we sat here in our easy chairs and husband watched something on Netflix, I just researched and read. Before we went to bed, I had figured out that I would be getting brachytherapy, and probably not EBRT. I had also figured out that my endometrioid adenocarcinoma was NOT quite the "easy peasy" issue that everyone had been chatting so casually about. 

I warned my husband before we went in to the gyn onc's that I would be doing radiation therapy, and tried to prepare him so he wouldn't get upset. He is very afraid I'm going to leave him alone, and we're very close. I have no plan to, but no one does. We can only control so much (sadly).

My gyn onc confirmed my research, but I was not satisfied--as two weeks post op, we are still exhausted and not that well-equipped. After another four weeks had gone by, I'd researched a lot more and I had questions. 

I'm just now, especially since I'm mentally and emotionally quieter, addressing my own concerns a bit more lucidly. 

els19
Posts: 105
Joined: Jun 2014

You did a wonderful job with your questions. And you definitely did the right thing changing doctors. I'm so happy to know I'm not the only one that goes in with a list of questions, and I do question everything. I make a point of getting all test results before my appointments so I can think about everything and have my questions ready. Fortunately I was lucky and have a doctor that is patiently willing to answer all my questions. I told him in the beginning that he may be the expert but it's my body and my life. Everyone handles things differently but the better I am informed and the more I understand what I'm facing, the better I am able to handle what I'm dealing with and what I'm going through. Thanks for posting your questions and answers!

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6296248/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6669195/

https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Also, I pushed to have my tumor studied, and got a big report entitled "ProvSeq 523 Solid Tumor Panel" 

The Prov part of it may refer to the name of the lab at Providence St. Joseph Hospital. Anyway, in the report summary, it says there are 4 "potentially clinically-Relevant findings," including the following biomarkers:

 

Pd L1 IHC

PIK3CA

PTEN

ARID 1 A

It also says the following:

The tumor mutational burden is Low (6.26 mutations/megabase). The tumor is microsatellite Stable.

Negative for clinically significant mutations in AKT1, NTRK. See the report's appendix for the full list of genes without clinically significant alterations. 

 

I think the additional interpretation sounds positive. I don't know much about the clinically-relevant findings. 

 

Spydergal's picture
Spydergal
Posts: 52
Joined: Jul 2021

Your uterus was in three pieces? What the hell? Did he ever explain why he did that? It's sounds like he's a butcher not a surgeon. Did you ever go to another oncologist to ask them if its normal to have your uterus cut like that? Please, forgive me for asking a stupid question but here I go: did you ever consider getting a free consult with a malpractice attorney? I sure as hell wouldn't let all that slide. I'm sure as hell not going to get a robotic anything after what you were put through. I'm going to have to have a hysterectomy without a doubt no matter how my biopsy turns out. The hospital they would do the surgery in is The Villages Hospital. I did a search of the local hospitals near me and found that they all had high numbers for MRSA, CDIF, blood infection and one had a device left in during surgery. This is why I've decided to make an appointment at MOFFITT which is a two hour drive but my friend who had lung cancer said they were the best. I made an appointment already with a highly rated oncologist after searching online. I'm so sorry you went through all that, it's proof how bad our medical system is.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I asked him if he cut it up while he was inside, or if he waited until after. He said he cut on it afterward, because he wanted to see what it looked like. Honestly, who knows?

I no longer had any faith in him after our very unpleasant dialogue, and I was already mad about his ungloved announcement that he was going to "open the curtains." Excuse me, those aren't curtains, sir. 

Anyway, I left a review for him on Yelp that I would love you to read. I am wondering if I should point anyone toward it, but not sure if it can "come back" on me in any way. 

Spydergal's picture
Spydergal
Posts: 52
Joined: Jul 2021

WOW! Seriously? I bet you wanted to crack him upside his thick skull. that showed total disrespect and disregard for his patient. Why on earth would any surgeon treat you like a lab rat? I'm mad for you. I'm glad you found a new Dr and care team, you deserved way better.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Seriously, he acted so guilty when I asked him if he removed my "parts" in one piece, as I am already concerned about that one cancer cell that's going to end up in my lung, brain, or bones. He just didn't like being questioned. I feel like he was a misogynist. I don't have any surgical experience, knowledge, or expertise, however. I just can't speak to his technique, and our conversation became so awkward that I felt unable to continue asking questions. I felt like I was taking up his time, and needed to move on.

All of this is new to me. My brachytherapy radiation treatments ended on July 1st. I'm currently trying to figure out stuff that's really outside of my understanding at this point, such as "Is my cancer driven by hormones, or what"? and why in the hell is my weight up? and why are my feet numb? I'm not having a great day. I expect that tomorrow will be better, as my moods tend to be like the tides of the ocean. 

Glad you're getting yourself taken care of, Spydergal!

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

a uterus with a robotic surgery.  You seem to know.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

is that they removed it via the vaginal canal, neatly, in one piece. There are youtube videos of the surgery, but I don't have the nerve to watch, to be honest. 

MoeKay
Posts: 350
Joined: Feb 2004

My Operative Report states, "the uterus was opened on the table, and did demonstrate a corpus tumor which did not extend to the cervical os, but clearly involved the majority of the upper endocervix."  My Operative Report was extremely detailed (2 1/2 single-spaced pages), so if yours is too, if you haven't already reviewed it, you might find additional details about your surgery there.  I know you mentiond elsewhere that you reviewed your gyn-onc's notes, but I wasn't sure if you were referring to the Operative Report.

Also, I know on other posts you said that your tumor invaded 83% of your myometrium.  However, your MySpace Page reports that the tumor invasion was "9/13 mm."  Nine-thirteenths is only 69.2308%, not 83%.  Was that 9/13 a typo, or did you have your pathology reviewed by another pathologist who came up with the 83%?  Just wondering.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I will review my apparent typo, but 83% of the myometrium. I realize that over 50% of the myometrium "invaded" by tumor / cancer is Stage 1 B, so it may be a moot point, but my percentage is 83%.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Collected 3/24/21

Synopsis

Myometrial Invasion: Present

Depth of myometrial invasion (millimeters): 10 mm

Myometrial thickness: 12 mm

Uterine serosa involvement: not identified

Cervical stromal involvement: not identified

Other tissue / Organ Involvement: not identified

Lymphovascular Invasion: Present

Lymph Nodes

Lymph Node Status: All lymph nodes neg for tumor cells

Total Number of pelvic nodes examined: 3

Number of Pelvic Sentinel Nodes Examined: 3

Total Number of Para aortic nodes examined: 0

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I just reviewed some reports and numbers, and I think my "new" clinic at OHSU did a "copy and paste" onto another report that had someone's numbers on it, and something got missed I will contact them immediately! You are a star. (and unfortunately, I am still 83%, lol)

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/robotic-hysterectomy

Here's the best I can find right now, and I think it's pretty good. 

 

Ribbons's picture
Ribbons
Posts: 79
Joined: Jan 2019

I wondered this too, and how did they contain it so no cells escaped. My surgeon said it is put into a bag, internally before extraction.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

The hard thing is that bc my gyn onc was so angry about my many questions that now I feel like I will never really know. Also, I have decided that his surgical notes were pretty vague. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Spydergal,

I used to live in Inverness, FL. I drove to Moffitt for my surgery and radiation.  I opted to get my chemo locally and if I had it to do over again, I would have driven to Moffitt for it as well.

You will get excellent care there.  They are very caring and they have extensive knowledge with our cancers. I had the DaVinci surgery and I reccommend you consider it, if it is offered. 

Good luck with your next steps in this process.

Love and Hugs,

Cindi

Subscribe to Comments for "Six Weeks Post-Op: My Questions"