Retroperitoneal Sarcoma options, sugery-radiation

I’m sure you’ll get good advice from the Mayo Clinic mentors here. But I wouldn’t hesitate to fill out the online request on Mayo Clinic’s website requesting a second opinion. You’re not committed to anything until you, and they, get more info. Most likely you could do a video visit, but they will tell you if that’s possible.

I dealt with MD Anderson because travel was in state. I’m almost positive Mayo Clinic handles it all the same, especially from reading posts on this site. The cancer center was able to get electronic copies of my scans and health records once I had given permission. It was the simplest procedure. They know all the right questions to ask, and will pursue records and make contacts to other facilities for you. I filled out a form online on a Wednesday, and they called me that Friday. My biopsy report had not been released to me yet, but she was able to get a copy of it from the electronic health sharing with my approval. The following Tuesday I was notified of my appointment date (this was for cancer care, not a second opinion). My original scan and biopsy was done at a local hospital, in a very well respected large hospital system. I knew friends of friends who had cancer surgery and care with them - and seemed to do fine. But with MDA only 3.5 hours away, it just seemed to be the best care. It has turned out to be the best decision.

MD Anderson told me that my insurance was not on their approved list. They recommended I call United Health Care and talk with them. It seemed like a futile task to me, but I was a bit desperate so I called. UHC said they would pay any bill from MDA at out of network fees. But it turns out everything was paid at in networks costs. They just automatically request prior authorization with UHC, I have not had to do any paperwork, and there did not appear to be any extensive delays waiting on approvals.

Mayo Clinic is probably very familiar with handling patients in your situation, and may be able to advise about your insurance company’s track record with them.

I will suggest that getting care at a comprehensive cancer center can make coordination of doctors, scans, determination of treatment and follow-up easier.

I wish you the best!

When I was diagnosed with sarcoma cancer I used 4 different hospitals and many specialists.
I have used
Sutter
UCSF
Stanford
UCD
and they took care of evwrythin all the referrals and getting all my scan pet, mri blood work and biopsys.
I didn't do anything they took care of everything.
I did all my appts for UCSF prior to my 2nd surgery thru Zoom
Met with surgeon, radiologist, oncologist and plastic surgeon all on Zoom never met them till surgery day. Stanford was a 3rd opinion after surgery had a radiologist and oncologist there and everything was done by Zoom.
Then got a 4th opinion at UCD were i was saw a radiologist and underwent radiation tratment and now have a oncologist at UCD who monitors all my scans every 6 months.
For 2 years had 2 radiologist and 2 oncologist from Stanford and UCD.
Now just using UCD.
Hoping you find the best possible care.
Mimi

Hi @chaser77, you're right. Mayo Clinic doctors are respected for their expertise in diagnosing and treating sarcoma. You can submit a request for a second opinion at Mayo Clinic or your physician can submit a referral. Click this link to get started http://mayocl.in/1mtmR63

Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance.

Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live. Video and phone visits also can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs.

I would call and inquire.

Have you received the pathology results in the meantime? How are you doing?

Thanks for the reply. I’m one month out from diagnosis and waiting on pathology results that were sent to Mayo about Feb 2nd. Was told by physician here that the pathologist reviewing the slides is one of a handful of sarcoma experts in the country, so that’s reassuring. Was also told it could take another 1-2 weeks to get results. Oncologist submitted request for second opinion to Mayo last week. Haven’t heard back yet. Physically, I’m feeling great. Continue with my daily exercise routine and have just minimal symptoms. I went in a month ago because of some minor intermittent but chronic pain in right lower quadrant that I thought was a muscle tear/strain of some sort. Was quite surprised when imaging results came back! After recent PET scan reviewed, now getting an MRI too because tumor may be more involved in vertebrae than original CT imaging showed. Met with radiation oncologist too as was told RT is likely prior to surgery pending on pathology report. So for now I’m just waiting to get more information. It’s no one’s fault, but certainly frustrating that there is this huge tumor that is continuing to grow inside me over the past month and I don’t really have any more information than I did a month ago.

@chaser77, oh I can imagine that feeling of just wanting things to get moving. Get this thing out of me! Right? I get it. To offer some assurance, I can tell you that the time invested in reviewing all testing (imaging and labs, etc) is crucial to studying your tumor to create a treatment plan that has the highest likelihood of being effective. That was a long sentence to say - the more they know, the better for you.

Along with the Mayo pathologist, your second opinion referral and records will be reviewed by the expert sarcoma team at Mayo Clinic. I hope you hear more soon.

But, darn it. Waiting is really hard. Let me know when you learn more.

I received my pathology results from Mayo clinic and received better news than I or any of my physicians here expected. Pathologist believes the tumor is a very large Schwannoma, not malignant. That was unexpected by myself and the surgeons, radiologists and oncologists I saw here. It is still a very large and destructive tumor in my case, and will require what will be a complex surgery due to the spinal cord involvement and other structures such as psoas muscle, Inferior Vena Cava, ureter, diaphragm, nerves etc. I'm grateful to hear the news "it's not cancer", but also realize many others unfortunately don't get to hear that good news.
I'm not sure what treatment plan will be proposed as I meet with a neurosurgeon and oncology surgeon here this week for more information. I'm also not sure I "need" the second opinion at Mayo or not? The referral has been made and all imaging and notes are being sent to Mayo. I was contacted by Mayo just a few days ago, before I knew these results and they had planned on gathering all the information and after their team reviewed it would be contacting me to schedule an appointment. They did say it would have to be an in person visit, I believe because I'm from out of state and it would be my first visit there. When they contact me, I may just follow up with the second opinion anyway.

Wonderful news. Very happy to hear that Mayo doctors were the ones consulted as they really know what they are doing. Good luck with your surgery. At least you can relax as it seems you won’t need anything after that.

@chaser77 This is indeed very good news. That second opinion on pathology from pathologists who are expert in sarcoma was an excellent recommendation from your local pathologist. I am not in Minnesota either but live within driving distance (about 7 hours by car). Mayo in Rochester is where we go for our speciality care and we’ve been pleased with the thorough care we receive. Going to Mayo Clinic for that in-person appointment especially since you mentioned that your surgery will be complicated might be a reassuring step for you.

Like @gisellef, I'm grateful that your tumor was non-malignant. Regardless, you have a journey ahead of you. Here is a related discussion that you might be interested in
- Schwannoma on sciatic nerve root in pelvis
https://connect.mayoclinic.org/discussion/schwannoma-on-sciatic-nerve-root-in-pelvis/
And maybe less relevancy:
- Malignant Peripheral Nerve Sheath Tumor
https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/