Thank you everyone

Whisperwill

Thank you everyone

I want to thank the person who--somewhere on the CSN forum--mentioned the value of the NCCN guidelines. My plan for today is to print out parts of the patient guideline for endometrial cancer and highlight the areas that I do not see my oncologist following, as a guide for discussion at my next appointment.

Yesterday I found the home page for the CSN home page with its list of discussion groups.  I have been intensively searching the internet for information about recurrent uterine cancer for a couple months and once in a while an old thread has shown up but I did not search further because so much of the information seems out-of-date.  A lot has happened for uterine cancers in the past five years! This is one of the things that gives me hope.

I was diagnosed with a recurrence of endometrioid cancer in August 2021 and began new rounds of chemo in September 2021.  Even my chemo experience is different than five years ago in terms of nursing support and the infusion clinic environment.

For sure, the emotional aspects of facing cancer never get old, do they.

Today I signed up as a member thinking that maybe I can be helpful to someone who is newly diagnosed, but at the same time I find myself struggling with my oncologist--trying to get answers to my questions --some of them basic to my current diagnosis and treatment--we are just not on the same page.  My gut feeling is that she may not have time for a patient like me.  I am highly analytical in my thinking and not uncomfortable reading highy technical information.  (I worked as engineering support for a regional control room.) We are definitely talking past each other.  Example:  Me--"Is there anything I can do to help the treatment be effective?" Oncologist: "There are no miracle diets." Although I am obese, it felt like something that was irrelevant to me and how I think and act. BTW, I have been running a tiny farm, with animals and a commercial kitchen for many of my years in retirement, but I don't think she knows that. Sadly, I did not have the presence of mind to ask her why she said that.

cmb

Welcome

Whisperwill,

I'm sorry to read that your cancer has recurred, but glad that you found the link to the NCCN guidelines. I hope some of the points in that document help when you meet with the doctor.

Although I was comfortable with my doctors, other members have changed doctors when they haven't found a good fit with their original doctor. So I hope your interactions with the doctor improve, or that you can find someone else better suited to you.

Whisperwill

Harmanygroves

Thank you for the suggestions.

I read your profile and definitely interesting and intriguing.  

My current gyn onc office is part of  a teaching hospital and the oncologist teaches there. Sadly, most of my more upsetting times of the past two months have been triggered by interactions with my oncologist and the staff. There are two other doctors on my team--as far as I know--and I have been their patient for the past five years.  Unfortuantely for me, one of them is retiring. I have so very much respect for them.  The oncologist is new for me. Up to now, I have not been afraid of cancer. And when I was first diagnosed with the recurrence, it was okay for me to take a wait-and-see  attitude.  And then.  Just before round 2 of chemo, when I was scheduled to have my first meeting with the oncologist, things started to become fraught with mistakes and contradictions in information and with unexplained delays. And, worst of all for me personally is the attitude.  I am not good at dealing with that part. Still time to learn!

So, along those lines, I am planning to chat with my two favorite therapists about how to present myself and how I might respond to some of the cues so that we can both get past whatever our disconnect is.

I am trying very har to get with the program and to be reallistic in my expectations.  If only there was a decent conversation to build upon!

I feel that the best way to describe who I am and what I am like is by describing one very long night during my working life and how a disaster and a huge success happened at the same time.  But then, I have doubts about whether such a description would carry much meaning. But what have I got to lose?  I may try your idea of writing to her about my work skills to give her a picture of what sort of creature I am.

Thank you for your thoughtful response,

Whisperwill

 

 

 

Whisperwill

cmb

CMB,

Thank you for that welcome.  I have appreciateed your posts of a couple of the different threads.

Whisperwill

Harmanygroves

The emotional aspects never get old...

And I am so sorry you are having to deal with a recurrence.

It does sound like you and your doctor are "talking past" each other. Interesting that she immediately sprang to the "diet" remark. As a side note, I have high BMI--and am technically obese stage 1--but also have a "tiny farm" and cook all meals. I am changing my diet pretty radically, but that's beside the point.

To the point: you may want to send her a letter, outlining your attributes/skills and also your concerns. She sounds like she's not a great listener. Perhaps you will continue being able to work with her, but don't be afraid to change teams. At the very least, how about getting a second opinion at a large teaching hospital? Make sure and preface your visit to the new gyn onc with specific details about yourself.

Some women don't mind being patronized and letting the doctor take the wheel. Sounds like you are NOT that women. Nor am I.

I changed teams entirely, after my robotic DaVinci surgery. Click on my name and read my story if you like--I'm one of those PORTEC women with high-intermediate risk of recurrence, LVSI, and deep myometrial invasion, along with lower uterus involvement. I've got all sorts of reasons to keep my eye on the ball, as you do.

Sending you huge support.

Deb 2

Forherself

Whisperwill

Sorry to hear about your recurrence.  I love your little doggie picture.  Anyway, as I read your post, I could feel my blood start to boil a little.  When I was referred to a teaching hospital, I had a run in with one of the fellows.  I did not hesitate to express my unhappiness with her behavior. I don't think your doctor sounds like she is listening to YOU.  I do not think it is rude to  repeat the comment and tell her how it made you feel.  That is exactly what I did to the Fellow that called me.  I do think it improves their care.  I don't think it is appropriate to express anger, but just tell her how it made you feel.  If she doesn't seem to care, then I would seek another physician.  My gyneoncologist and I were very much a team.  I can't imagine having that other Fellow as my physician, and your post reminded me of that.  It is important to trust your doctor.  

Fridays Child

Best wishes

Best wishes with your treatment.  Three years ago, (six years after my original diagnosis and surgery) I was diagnosed with a recurrence.  Before I was released from the first five years of follow up, my gyn oncologist left and so I had at least met the new one before my recurrence.   It is important to feel like you can communicate with your doctors, so I hope you're able to make that connection.  Some of us want to know everything, and some don't.  The doctors need to adapt to each patient's preferences.  The interventional radiologist who did my biopsy three years ago was one of the best at connecting, even though I saw him only that one time.

FourBee

Prepare a List of Questions

Often oncologists are annoyed by supportive measures (acupuncture, diet, etc.) so will be short. Depending on the type of chemo there are supportive measures that will make the chemo more or less effective. I found that having my research in front of me and sharing it during my appointments and/or emailing it in advance insured we discussed my questions. WIth my surgeon, I even faxed him a letter explaining why I was transferring to another gyn onc.

I was in a clinical trial (I encourage you to seek those out) and the side effects were unknown. I researched deeply every time something was going on with me. I provided a lot of data to the nation-wide trial.

Your analytical side will help you as you find the best options going forward. Be persistent. Inform the doctor when they make a comment that is dismissive they are denying you the opportunity to engage in your own care.

Getting advice from therapists on approaches is a wonderful idea but don't be afraid to be direct.

FourBee