Newly diagnosed, how to find best help in North-West US?

Posted by jm @jodimj, Aug 13, 2023

Been recently diagnosed, and Dr. Tells me shortage of OR availability, and medical staff may put off surgery 3 to 5 weeks. How far and where to go for best treatment under Medicare? This is a lot to process and navigate through.
Im expecting a total hysterectomy at 65, do most have to travel very far for the best care? Where to go and is there a group or agency to help me. My primary offered to give me a referral or second opinion of my choosing, but that’s more on my plate.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Do you know what grade your cancer is? If it's grade 1 or 2, three to five weeks doesn't sound all that bad to me, especially if you don't want to travel. My impression is that doctors across the country (and the world) do lots of robotic-assisted hysterectomies and are quite good at it. Especially if you're at an NCI-desigated cancer center, they should do a good job.

When I was dissatisfied with how long it took for me, (11 weeks from "suspicious for endometrial carcinoma" on an ultrasound to the hysterectomy, where most of that was waiting to get a biopsy), I was trying to figure out how long was reasonable. The best I could find was a paper from the pre-Covid NHS in the UK saying that 8 weeks from the patient presenting with bleeding to the hysterectomy was a reasonable goal. Obviously that didn't happen for me, even though, or maybe because, I was treated at a top-ranked cancer center. Once they got around to it, the care I got was fine. But I was boiling mad when they finally diagnosed it as a grade 3 cancer (and then took 3 weeks to schedule surgery.)

But from reading this forum, it sounds like the Mayo clinic in Minnesota has lots of satisfied customers who were seen quickly. I'm sure people who were treated there will fill you in on the particulars. (I was tethered to local hospitals by Obamacare.)

REPLY
@val64

Do you know what grade your cancer is? If it's grade 1 or 2, three to five weeks doesn't sound all that bad to me, especially if you don't want to travel. My impression is that doctors across the country (and the world) do lots of robotic-assisted hysterectomies and are quite good at it. Especially if you're at an NCI-desigated cancer center, they should do a good job.

When I was dissatisfied with how long it took for me, (11 weeks from "suspicious for endometrial carcinoma" on an ultrasound to the hysterectomy, where most of that was waiting to get a biopsy), I was trying to figure out how long was reasonable. The best I could find was a paper from the pre-Covid NHS in the UK saying that 8 weeks from the patient presenting with bleeding to the hysterectomy was a reasonable goal. Obviously that didn't happen for me, even though, or maybe because, I was treated at a top-ranked cancer center. Once they got around to it, the care I got was fine. But I was boiling mad when they finally diagnosed it as a grade 3 cancer (and then took 3 weeks to schedule surgery.)

But from reading this forum, it sounds like the Mayo clinic in Minnesota has lots of satisfied customers who were seen quickly. I'm sure people who were treated there will fill you in on the particulars. (I was tethered to local hospitals by Obamacare.)

Jump to this post

Thank you for sharing, it’s Medicare with Providence, so they’re not accepted outside of most of the recognized cancer clinics outside of this area.
I’m going to call Medicare and aging and disabilities tomorrow and see if I have options.
I’m very great full for your direction and response. This is so overwhelming when you don’t feel well. Thanx again

REPLY

Hi @jodimj, your doctor may wish to consider referring you to Mayo Clinic. You can refer yourself here: http://mayocl.in/1mtmR63

Or you can give your doctor this link to Refer a Patient https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient

Is travelling to Mayo Clinic in Minnesota or Arizona an option for you? How are you doing?

REPLY
@colleenyoung

Hi @jodimj, your doctor may wish to consider referring you to Mayo Clinic. You can refer yourself here: http://mayocl.in/1mtmR63

Or you can give your doctor this link to Refer a Patient https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient

Is travelling to Mayo Clinic in Minnesota or Arizona an option for you? How are you doing?

Jump to this post

I’m in oregon, do you really think it can make that much of a difference?
Minnesota is so cold, and I’m not sure I’d know that many people there.
I’m great full for your suggestion, and will be looking into it more.
Have had family visiting lately, drs. Appointment this week to go over results and come up with a plan. Perhaps he can consult?
Feeling a bit overwhelmed by it all. Thanx for reaching out to me. And I shall look into Arizona as well. Many thanx!

REPLY
@val64

Do you know what grade your cancer is? If it's grade 1 or 2, three to five weeks doesn't sound all that bad to me, especially if you don't want to travel. My impression is that doctors across the country (and the world) do lots of robotic-assisted hysterectomies and are quite good at it. Especially if you're at an NCI-desigated cancer center, they should do a good job.

When I was dissatisfied with how long it took for me, (11 weeks from "suspicious for endometrial carcinoma" on an ultrasound to the hysterectomy, where most of that was waiting to get a biopsy), I was trying to figure out how long was reasonable. The best I could find was a paper from the pre-Covid NHS in the UK saying that 8 weeks from the patient presenting with bleeding to the hysterectomy was a reasonable goal. Obviously that didn't happen for me, even though, or maybe because, I was treated at a top-ranked cancer center. Once they got around to it, the care I got was fine. But I was boiling mad when they finally diagnosed it as a grade 3 cancer (and then took 3 weeks to schedule surgery.)

But from reading this forum, it sounds like the Mayo clinic in Minnesota has lots of satisfied customers who were seen quickly. I'm sure people who were treated there will fill you in on the particulars. (I was tethered to local hospitals by Obamacare.)

Jump to this post

Recently found to be stage 2 , hysterectomy has happened. None on lymph glands, which is good.
I don’t think my insurance will cover Mayo Clinic or Minisota, have to look more into it.
My niece is a big fan of Anderson in Texas , I don’t think they score as high on ovarian cancer though.
Thanx for reaching out, and I hope you’re doing well through the care that you did get! Hugs

REPLY
@jodimj

I’m in oregon, do you really think it can make that much of a difference?
Minnesota is so cold, and I’m not sure I’d know that many people there.
I’m great full for your suggestion, and will be looking into it more.
Have had family visiting lately, drs. Appointment this week to go over results and come up with a plan. Perhaps he can consult?
Feeling a bit overwhelmed by it all. Thanx for reaching out to me. And I shall look into Arizona as well. Many thanx!

Jump to this post

@jodimj, did you review everything with your doctor? Do you have a treatment plan? How are you feeling?

REPLY

No we met, updated diagnosis to 3b ,he had a plan of treatment, however he had forgotten about a serious health issue. Said he was going to present my case to the local board of ovarian cancer specialists in the state. He wouldn’t consult MD Anderson or Dana Fabre.
Not sure what the plan is, start early this week coming, 6 hrs of chemo minus the avastin. I seldom take Ibeprofin without side affects. I don’t know what to do.
Thanx for asking

REPLY
@val64

Do you know what grade your cancer is? If it's grade 1 or 2, three to five weeks doesn't sound all that bad to me, especially if you don't want to travel. My impression is that doctors across the country (and the world) do lots of robotic-assisted hysterectomies and are quite good at it. Especially if you're at an NCI-desigated cancer center, they should do a good job.

When I was dissatisfied with how long it took for me, (11 weeks from "suspicious for endometrial carcinoma" on an ultrasound to the hysterectomy, where most of that was waiting to get a biopsy), I was trying to figure out how long was reasonable. The best I could find was a paper from the pre-Covid NHS in the UK saying that 8 weeks from the patient presenting with bleeding to the hysterectomy was a reasonable goal. Obviously that didn't happen for me, even though, or maybe because, I was treated at a top-ranked cancer center. Once they got around to it, the care I got was fine. But I was boiling mad when they finally diagnosed it as a grade 3 cancer (and then took 3 weeks to schedule surgery.)

But from reading this forum, it sounds like the Mayo clinic in Minnesota has lots of satisfied customers who were seen quickly. I'm sure people who were treated there will fill you in on the particulars. (I was tethered to local hospitals by Obamacare.)

Jump to this post

Got upgraded to 3b ovarian, original plan with Avastin might be scratched do to injury caused mesenteric ischemia. Pretty sure my days are numbered.
Where did you go? In oregon thinking I might be better off doing what it takes to get in with MD Anderson, Dana Fabre , or Mayo. Really not sure if I’m in a good place here for numerous reasons.
Thanx for sharing, prayers your way

REPLY
@val64

Do you know what grade your cancer is? If it's grade 1 or 2, three to five weeks doesn't sound all that bad to me, especially if you don't want to travel. My impression is that doctors across the country (and the world) do lots of robotic-assisted hysterectomies and are quite good at it. Especially if you're at an NCI-desigated cancer center, they should do a good job.

When I was dissatisfied with how long it took for me, (11 weeks from "suspicious for endometrial carcinoma" on an ultrasound to the hysterectomy, where most of that was waiting to get a biopsy), I was trying to figure out how long was reasonable. The best I could find was a paper from the pre-Covid NHS in the UK saying that 8 weeks from the patient presenting with bleeding to the hysterectomy was a reasonable goal. Obviously that didn't happen for me, even though, or maybe because, I was treated at a top-ranked cancer center. Once they got around to it, the care I got was fine. But I was boiling mad when they finally diagnosed it as a grade 3 cancer (and then took 3 weeks to schedule surgery.)

But from reading this forum, it sounds like the Mayo clinic in Minnesota has lots of satisfied customers who were seen quickly. I'm sure people who were treated there will fill you in on the particulars. (I was tethered to local hospitals by Obamacare.)

Jump to this post

I was told 2 and have since been upgraded to 3b, with no lymph gland affected, also injury caused mesenteric aschimia.
Feeling pretty challenged on this one, in my mid 60s. Staying positive, and realistic at the same time. Open to any direction and groups available. Can’t find a therapist with cancer background.
Thanx again, hugs of healing

REPLY

@jodimj There are stages of cancer such as you are referring to and then there are FIGO Grades which is a system for characterizing how closely the appearance and organization of the cancer cell structure looks like normal tissue. FIGO Grade 1 is the lowest grade and refers to cells that are most like normal cells. FIGO Grade 3 means that the cells do not look like normal cells. Here is a good description (scroll to the bottom of the page for Grade).

Ovarian, and Fallopian Tube Stages and Grades:

https://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

MD Anderson (in Texas), Dana Farber Cancer Institute (Massachusetts) and Mayo Clinic (Minnesota, Florida, and Arizona) are all NCI-Designated Comprehensive Cancer Centers and can provide you with comprehensive care. If you are leaning toward MD Anderson then that’s a good choice for you.

Whether or not you can go outside your network is dependent on your insurance. If you doctor puts in a request with your insurance company they may very well authorize a visit in-network. I’ve heard these from many people who did this and advocated to do just this.

I’m at Mayo Clinic in Rochester, MN as I wrote this. It’s been very hot until today when the temperatures are now more moderate (mid-60’s). It doesn’t get very cold in Minnesota until well into winter - January and February are the coldest months.

Have you looked into talking with a therapist virtually (on the computer( within Oregon? That might be an option.

REPLY
Please sign in or register to post a reply.