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How fast does serous carcinoma spread

Willow oaks
Posts: 12
Joined: Jan 2020

Waiting 3 weeks after biopsy to see oncologist After biopsy showed high grade serous carcinom And also atypical on pap. Is that typical? How fast does this spread? I first noticed very slight pinkish discharge in oct or nov 2019 ask doctor shortly after for GYN appointment to check it out... he didn’t get around to it till my next visit after the

 new year 2020 when I reminded him. The first discharges halted after I took yeast infection medication as I felt generally not well and itchy after several rounds of antibiotics over 6 months. The discharge and the itching has not returne,   but returned in January but have now mostly stop again. 

Also should you try to go somewhere here like MDAnderson right off at the start or stay local? I’m being sent to a small clinic near Memphis, called West Clinic & Research In SouthHaven Mississippi about hour and a half away To the closest specialis. 

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

Willow oaks, I was diagnosed in late April/early May and did not have my surgery until mid-July. I think a 3 week wait won't make a difference for you. Except the waiting is always so darn hard!

I did drive 1.5 hours to my GYN Oncologist for my surgery and for my radiation. It was well worth it! I used a small clinic locally for my chemo. So, you may want to consider the drive if you do not get the information you need locally.

I'm glad you found us and sorry that you had to. Please keep asking questions. The more you learn, the better you will feel going through this. My experience is that it wasn't easy, but it wasn't nearly as bad as I thought it would be.

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

It is so hard to wait.  I did wait a month between my diagnosis and first appointment with gynecologist oncologist, and then two weeks for my surgery.  You have a RARE cancer.  I do too.  I went to a University Hospital.  I think it's important to go to a bigger treatment center because the smaller ones only deal with very few cases.   I drove an hour and a half to my gynecological oncologist.   Whoever you see, they should use a cancer board to make decisions about your case.  Many opiinions are needed as there is no set treatment for the easlier stages.  I waited that long and was still an early stage.  HOpefully you will be too.

zsazsa1
Posts: 557
Joined: Oct 2018

I too would agree, drive to the major cancer center for consultation and planning, surgery, radiation.  You can have chemo done locally.

zsazsa1
Posts: 557
Joined: Oct 2018

Although I have NO idea how I could have driven an hour each way for radiation.  I was so sick with diarrhea for the last 3-4 weeks or so of it.

Molly110
Posts: 191
Joined: Oct 2019

Willow Oaks, I have/had papillary serous cancer, and the reason I had the D&C that resulted in the diagnosis is that my pap test showed atypical cells of unknown significance, which perhaps is what yours was also? My surgery and treatment all happened in short order, but I spottted for many months before going to the gyn. I know first hand how frightening this is, but it sounds like you are on top of making your care happen as soon as possible. I hope you are able to get most of your care from an academic medical center, because, as others have said, this kind of cancer is rare, and you need care from people who are highly expert with it when it comes to the surgery, staging, and treatment planning. It sounds like once that is done, your local providers can do the actual infusion.  If you are near Memphis, I wonder if Vanderbilt would be an easier choice for you than Houston (although maybe your referral was to one of MD Anderson's networked hospitals?). I think Vanderbilt is pretty highly regarded and I know they do brachytherapy there, if that ends up being part of your treatment plan. Whatever you choose, I think the main thing is to go somewhere where they treat a lot of women with your kind of cancer. 

Warm best wishes!

 

 

Willow oaks
Posts: 12
Joined: Jan 2020

Thank you to everyone who is giving me input. Looks like MDAnderson said they are in both my network Contracts. It’s 10 hours and I have to plan and stay 3 to 5 days with the first appointment. In Memphis I’m guessing the first visit would mean just talk. MDAnderson said some one would call my today within 24 hours and I should be scheduled in 10 more days or less. I’ve heard nothing from Memphis To prep me for the first visit the day after tomorrow. 

Both MDAnderson and the Cancer Clinic in SouthHaven, said I could get the main big things like labs and surgery addressed there and likely once a plan is in place get various treatments more Local or even in other states closer to family that can help because both my insurances are national, federal plans rather than State or private local network plans that would restrict me to this state mostly. I have Medicare and then Tri care Military East for life managed by Humana at present. They did say Tri care West does not have a contract with MD Anderson.

I‘m calling my insurance companies tomorrow to verify all this will work and ask if I can keep the appointment this Friday at the Memphis area clinic and have both conciliatory visits covered. If not I may just see how much it is out of pocket to hear what the clinic could inform me of from my biopsy. If it’s just to tell me they don’t know much till surgery it’s likely not worth the cost if I do surgery elsewheRe. 

I will check about Vanderbilt too as my sister may be helping me and she lives there. If I could get things that might give me the runs for weeks somewhere near her that would make it easier for her to assist me.... but it still take about an hour to get around to her house even though she lives there.

 I dont Know how rough a 10 hour ride might be a bit after the surgery though. I’m guessing I’d stay in Houston some where around week before trying the ride back with my sister or daughter driving and a cot made over a laid down area in case sitting is too hard & maybe a break or two in the drive. Does this sound doable to you folks. She has had this surgery before but obviously I have not. I might be able to work something out with my deceased (as a bit over a year ago) husband‘s extended Houston family I don’t see often if I need to stay longer After surgery. I’d prefer to get back here in Mississippi or to Nashville with sister though.

My Gyn here that did my biopsy is sweet and honestly told me when I asked that she had only seen 4 cases of this. She talkEd with me a long while in a return call on 2 occasions when I was feeling fear and panic. She said 2 wered older than me on into there 70’s and didn’t did make it & the other was younger and still doing fine. I’m 67 And 68 in June. She is hopeful mine is early but I read even if you come with Just early light spotting or no symptoms it can still be more advanced. While I’ve enjoyed have a bit of time before surgery to Pretend normal on days I’m too busy to feel scared I’m ready to find out where I stand soon as possible now and get on with this. 

 

My my sister had friends in Memphis that reportEd they were impress with the Clinic I was assigned to an some ended up at MD Anderson... they had different cancers though.

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

It will be harder to drive 10 hours.  Make sure. your pain pills are purchaed for the trip.  One big problem is sitting so long inactive you increase your chance of a blood clot.   Make sure you move while in the car and get out frequently to walk.  It isn't too difficult when you are on the pain meds.   There are long discussions about how to prepare for the surgery but I don't know how to find them.  I suspect someone will answer soon with the link.  I had a very easy time after surgery, and I had both robotic and regular lower abdominal incision to deal with.  I'm glad you are being proactive.  Only 4 cases.  Sometimes when you go to a referral center too, they find things the community labs don't.  Even looking at the slides pathologists don't always agree on what they are looking at.  You will get the most up to date care at MD Anderson.  They have dealt with this cancer a lot.  AND each case is different.  It is a very scary time for you.  Try and keep busy, and live each day, one day at a time.  Hugs to you.   We are here for you.

BluebirdOne's picture
BluebirdOne
Posts: 454
Joined: Jul 2018

I chose to have my surgery and treatment at Mayo Clinic which is 6 hours away from my home. I had robotic surgery, not full open abdominal surgery. The trip takes 7 hours due to stopping and letting the dog out. I stayed a week after surgery to ensure I was ready to go home. I had blood thinners and compression leggings for 12 hours after surgery to ensure no blood clots. I told them I was driving home so they gave me specific instructions about what to look for in case a clot developed. We were instructed to stop every two hours to get out of the car and walk around for 5 minutes. I would consider going to MDA for treatment as they are tops, despite the drive. I am so happy that I chose a major institution for the initial surgery, and treatment as it gave me and my family peace of mind that I was seeing the most experienced doctors and specialists because Serous carcinoma can be aggressive, and we did not know what stage I was yet.  The other huge reason to go to a major institution is that they are used to having people come from all over the world, they do all of the scheduling once you have been accepted as a patient. So no phone tag, scheduling delays, etc, they do all of that for you and tell you where to go. This was a MAJOR stress reliever for me because I had so much trouble getting scheduled for simple appointments in my local area with both my gyne and the first gynecologic oncologist I saw, whose office I had to call repeatedly to try and get my surgery scheduled. On top of finding out I have a terrible cancer, I had to endure the stress of trying to get surgery scheduled, much less all of the other treatments I would need. They never did give me a date for surgery, and then called me a month later asking why I had not called them back! Like I would just sit there for a month with cancer. Out of frustration trying to get scheduled I called Mayo and within one week I was at Mayo having presurgical consultations, tests and surgery. The relief of finally getting treatment was enormous. Once you know your staging and have a treatment plan they can consult coordinate with local doctors. I decided to continue to use Mayo for chemo and radiation for continuity of care, but would have been ok with local docs, too. Also, the ride home was just fine. Not at all uncomfortable, I was only on Aleve for pain by then. So good luck to you and let us know your thoughts.

 

Denise

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

Willow is going for surgery soon.  Does anyone know the link for all the information here about what to do after surgery, or plan for driving home?  I can't find it.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

See Tips for surgery and after at https://csn.cancer.org/node/320841

And just a reminder to check the FAQ topic where this and other links are available without searching. Although I update the FAQ periodically, editing a post doesn't always change the original date. So while it may look like nothing has been changed for a while, new content links/content may be available.

I am planning to add some new information about site searching to the FAQ, just as soon as CSN is done testing the new function. I'll make a separate post pointing back to the FAQ when that content is added since it's something that I know I've asked CSN about in the past and I'm sure others have too.

Forherself's picture
Forherself
Posts: 565
Joined: Jan 2019

Thanks so much for all you do here.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2911
Joined: Mar 2013

You are the BOMB, girl!

dgrdalton's picture
dgrdalton
Posts: 160
Joined: Jun 2017

Going to MDA sounds like a good plan! I had surgery done by a GYN/oncologist at a hospital 90 miles away in a town of almost 35k population. But uterine serous cancer is rare. My GYN/oncologist kept changing his mind about treatment and finally decided on observation because I was stage 1A. I ended up getting a 2nd opinion 200 miles away at Barnes in St. Louis. That was the best thing for me. They see more of the rare cancers. I'm very happy with my oncologist!

Don't be afraid to get a 2nd opinion if you don't feel confidence in your oncologist. This is a great group of ladies that are very helpful!

Quilter_1's picture
Quilter_1
Posts: 118
Joined: Mar 2019

I had all of my treatment from surgery, chemo and radiation at Siteman/Barnes in St.Louis. I feel incrediably lucky to have them so close.  Everything fell into place in a very timely manner.  I was diagnosed with UPSC 1a, and treated in a very aggressive plan.  This disease is not something to be taken lightly.  I'm glad that you eventually went there.  We definitely need to speak out about this disease and more public awareness needs to be made.

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