Realize it is a good problem to have...

NoTimeForCancer

...but looking for feedback from everyone.

So I moved to Texas and was given the name of a gyn onc down here from one of the long-time ladies on this board. I just called and found out that the doc would not take someone not in active treatment and just following up.

I realize that this is a very fortunate problem to have, but has anyone else had this? I think I am going to start dialing for doctors and just starting out with "I am looking for continued follow up..."

Just throwing this out there for anyone else who may have moved and found this situation. As we know, "you have to love your doctor" and referrals are always helpful.

Forherself

Perhaps ask your previous Gyne Onc to send referral to the doctor you chose. Sometimes they will respond to a referral Or ask for another doctor or PA in the same clinic. You will see your chosen doctor if anything comes up.

BluebirdOne

I was wondering about that myself. In one year I will be at the 5 year mark, ostensibly cured. Who is qualified to continue my follow up? I was extremely un happy with the level of care my old gyne gave me trying to get dx initially. And anecdotally, as I see my various specialists for non-cancer related care; internist, cardiologist, urogynecologist, I find myself having to explain something as basic as the difference between endometrioid and serous, tell them about the chemo radiation after effects etc. I don't want a gyne whose practice is 90% obstetrics if they can't keep up with current cancer protocols. Would they recognize a vaginal recurrence or take seriously any pain I might be having because they are used to dismissing our concerns? I think this is a big issue for us longer term survivors.

NoTimeForCancer

Thanks, Sue. I know the onc I work with at the gyn onc said to let them know "who" and they will transfer all my records. I think I will call. I am also very fortunate to have good insurance so most drs want to see me - as said as that is to say.

I'll call the old office to see if they have thoughts on a local. I agree BluebirdOne, they usually like to cut you loose - but I don't want to let go on this lifeline.

I'll let you all know how it goes and report back in case anyone else wants to know. Hugs all you sweet warriors and families.

BluebirdOne

I am going to ask at my next 6 month checkup what they suggest.

EZLiving66

My original oncologist gynecologist "fired" me after a year and a half when I was NED for all that time. The letter I received told me to go to a gynecologist or even my GP if I trusted them. Fast forward over 5 years and I've found a GP I trust here in Florida. I've also signed paperwork that I no longer want any kind of testing done - no mammograms, no colonoscopy, no CA125. I will treat my diabetes and my hypothyroidism but that's it.

So far, so good! By the way, I'm have 2' of my hair cut off tomorrow. I haven't had it cut for almost seven years and I can sit on it! LOL

Love,

Eldri

cmb

BluebirdOne - I’m coming up to the 5-year post treatment mark next month when I see the gynecological oncologist. Based on what I’ve read here, I’m also wondering if he will continue to do my follow-up exams. I’ll find out then.

NoTime - I hope the suggestions from Forherself and any others here help you find a doctor that you are comfortable working with.

Eldri - it’s great to hear from you and I’m jealous about your hair!

Forherself

I see the PA in my Gyneoncologists office. The Gyneoncologists need to spend their time with the active cases. There is a shortage of them. The PA can do the Exam and interview. They will let the doctor know if they find anything out of the ordinary.

Sue

NoTimeForCancer

Sue - agree with you that I was not seeing the gyn onc after all these years - they had more important things to do - and was checking in with the oncologist associated with the office.

ELDRI!!! SO good to hear from you. WOW - 2' of your beautiful white hair! What did you do with that? Glad to hear you are doing well.

BluebirdOne

https://csn.cancer.org/discussion/comment/1699363#Comment_1699363

Eldri, so glad to see you and your little doll pop up! We have missed you.

I now see only the GO PA, not the oncologist, she is great and I have no worries about my care. I also have been traveling to Mayo so getting someone local would help, but I am also seeing a urogynecologist there for incontinence issues. I really hate changing doctors especially with my complicated history.

cmb, yes I will be very interested in what your doctor says and if anyone else wants to chime in with their experience.

Denise

MoeKay

First of all, it's so nice to hear from you, Eldri, and to hear that all is well!! You have been greatly missed!

My gyn-onc was a rare bird in that I saw him from the time of my surgery in 1999 until fifteen years later when he retired. He gave me the option after two years to see him once or twice a year, and I chose twice. He had no PAs, so I always saw him. Of course, back in 1999 when I was diagnosed there were 37,400 cases of uterine cancer diagnosed annually, and in 2022, the ACS estimates that there will be 65,950 cases of uterine cancer. I believe those figures include an estimated 10% uterine sarcomas and the rest are endometrial cancer. In any event, a lot more women to treat these days.

But in recent years, it seems that physicians rely much more on PAs for first-line patient contacts. Years ago, when I called the dermatologist's office for an appointment, I saw the dermatologist. When I called the orthopedist for an appointment, I saw the orthopedist. Earlier this year, when I called to schedule with the orthopedist, I was informed I needed to go through the PA first. When I called the dermatologist about a lesion that turned out to be skin cancer, I was told I could schedule an appointment with the PA in a few days, but if I wanted an appointment with the dermatologist, it would be a wait of several months. So I scheduled with the PA. (However, I actually ended up being able to spend time with the dermatologist at that first appointment anyway).

Good luck with finding a competent, caring practitioner who knows his or her limitations and knows when to call in the big guns!!

BluebirdOne

https://csn.cancer.org/discussion/comment/1699380#Comment_1699380

https://csn.cancer.org/discussion/comment/1699376#Comment_1699376

I don't mind at all seeing a PA, what I don't want is a gatekeeper, but I have only had really good experiences so with with three that I see. First of all, the PA's I see have been all women, whom I prefer, they really know their stuff and seem to be a bit more personable than some of the docs. Second, four years since dx, I am educated about my disease, treatments, side effects, will not accept the absolutely incompetent and indifferent treatment I received trying to get dx the first time, so I am so much more proactive about standing up for myself. That said, I am totally spoiled by the standard of care I get at Mayo compared to my other providers, so if they would agree to continue to see me I would still travel. I had to play the "Mayo card" more than once to get them to look at my history.

BluebirdOne

thatblondegirl

Welcome to Texas, NoTime! I know you know I’m from Houston metro, so I’m guessing you’re in another city! Best wishes with your dilemma. Like the others, I usually just see NPC, but last time my ONC. I kinda feel like….once a cancer patient, always a cancer patient….unless you’re at least past that all important 5-year mark. It’s not about being paranoid….I just think it’s smart! 😎

Hi, Eldri! Yes, we’ve missed you! Congrats on the haircut!

❤️, A

ConnieSW

https://csn.cancer.org/discussion/comment/1699363#Comment_1699363

I’ve been thinking about you and wondering how you are doing

woodstock99

Where in TX did you move to?

I live in Dallas and can message you some names. I also had a 2nd opinion at MDA in Houston.

I had stage 1 breast cancer diagnosed in 11/15 and surgery in 1/16 and am 6 & 1/2 years NED. I had 2x a year checkups years 1-5 and now annually but am still seen by the cancer center where I had my surgery. Perhaps because I told my doctor about my uterine cancer 1+ years ago. Not sure but so far was not told she would no longer see me.

Let me know if I can help.

jan9wils

Hi No Time,

I'm glad this is a good problem for you but I have to say I would want a gynonc following my care. I don't know if my dr would kick me to the curb if I didn't keep recurring but I would hope not. I, like Woodstock, am in the Dallas area. My gyn-onc only sees patients who have been referred so I think the idea of having your current dr calling and referring you is a good one. Congratulations on your haircut Eldri!

Jan

NoTimeForCancer

Hey ya'll! (Now that I am in Texas - Dallas @ Woostock - and it is an education of record heat, insane rain, I won't want a house with a basement and you have to water your foundation. I can't wait to see what is next - wait - I CAN! Holy smokes.

So I called the office back of the gyn onc that Trish used and explained (hard to get people to listen sometimes) I was just looking for someone to continue my check in with at the gyn onc's office. That got me along, but the link to sign in to this hospital records hit a wall when they send you the link and it tells you to enter the code you got IN THE LETTER. (no code on the email)

Strangely, especially since I know my old dr office WILL send the records, the woman said "I don't see your records" HEL-LO! The IN hospital system is St Vincent and she asked me, "St Vincent de Paul?" Uh...no.

I think once I can log in I can see who the dr is and cyber stalk them to see who they are.

Thank you ladies! I can't tell you how great it is to hear from you all. There are a few out there I am hoping are ok.

woodstock99

https://csn.cancer.org/discussion/comment/1699545#Comment_1699545

We moved here 30 years from NYC so it was a big adjustment. You picked a crazy time to move here this summer. Is the facility you are trying to get into a part of MyChart? I know when I had my 2nd opinion with MDA they were able to get all my records via MyChart. My doctor is at UTSW. Feel free to message me if I can help with anything Dallas-related. Take care.

Frances081920

https://csn.cancer.org/discussion/comment/1699488#Comment_1699488

Hi thatblondegirl, I am also from the Houston metro area. I am in the Methodist system and I will be 2 years out in February. I too have been wondering what will happen after the 5 year mark. I guess I'll wait and see. I too feel once a cancer patient, always a cancer patient.

cmb

https://csn.cancer.org/discussion/comment/1699366#Comment_1699366

Follow up on my earlier comment: I just had my checkup with the gynecological oncologist. I'm now on an annual exam schedule, but I'll still see the same doctor.