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Uterine Serous Papillary - Scared!

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Last year at this time, I was 61 and diagnoised wth Uterine Serous Papillary Carcinoma - Grade III which was found during a D&C. I had a CT scan (PET scan not approved by Aetna for Uterine Cancer) but nothing showed up except the tumor in the Uterus (Lymph nodes appeared clear). I had a hysterectomy & they took everything out. They also found USPC was in many if my of my lymph nodes, including the periaortic (again - Spelling?). It also showed cells in the pelvic wash. Now everything I've read says the life expectancy is only 15 months and that if it gets out of the pelvic area, there is no cure??? Is this true??? This is freaking me out! My doctor just tells me to stay off of the internet because all those studies are outdated! I really need some encouragement about this particular cancer and how paranoid I should be when new symptoms appear. Right now I have a slight lump in my throat and pressure in front of my breatbone and in my shoulder blades. It's been there about 3 weeks & my dr just says its the aftermath of bronchitis.
I know Serous Papillary does spread to many of the pelvic organs and thank God, mine were clear. But since it was found in the periaortic lymph node, doesn't it move upward towards the lungs, neck area. They did concentrated radiation on that lymph node. They never did any tests on lymph nodes outside my pelvic area. They say this cancer spreads fast - How fast is fast & is it always picked up in a PET scan? Please share your experiences if yours has moved upward in the body.

Since then I've had 6 rounds of taxol/carboplatin (spelling?) and 30 radiation treatments. Mid way through, I had another CT scan, which was a replica of the first, only without the uterus, so I demanded a PET scan. Why would I trust another CT scan. Well, my PET Scan was clear so in Nov, 2010, I was considered 'cancer' free & in remission. I am so grateful & happy about that, but now I am scared because I have these new symptoms, don't have a clue how this stuff spreads and know nothing will show up in a CT scan. I need a PET and I can't afford it every time I need to see what's going on!

My insurance is awesome, but it will not cover the PET because my doctor is not turning in the proper medical diagnosis code/procedure code. (I see where Aetna denied to pay the claim, so either the radiation place is out the money or I'm going to be called by a collection agency soon, since I haven't been billed yet! I'm not calling them to see what's going on). My doctor said the 'original' diagnosis is uterine so he must use that diagnosis code. He also says Aetna follows the Medicare Guidelines. I say there has to be another code available if cancer spreads to the lymph nodes and does not show up in a CT scan.

Does anyone out there know what code is used for getting medicare or insurance to pay for the PET scan if Uterine cancer is the original diagnosis?

To anyone who reads this, I apologize for being all over the place with my story, concerns & questions. But I really need to hear from those who have been there - done that! Thanks!

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I can understand you being scared. UPSC is a scary diagnosis. And your doctor is right that most of the studies on the internet are outdate. This discussion group is made up of ladies who have had the most current treatment. You will find many helpful ladies on this site.

I was diagnosed with Stage 3-C UPSC 1/09. I had a tumor in the uterus and 5 of my 21 lymph nodes were positive. My abdominal washings were also positive. At the time of diagnosis my doctor told me my cancer was not curable, but treatable like a chronic disease. So that has been my mind-set......no cure but treatable.

My doctor also told me that UPSC is very much like ovarian cancer, but insurance companies treat it as uterine cancer, so insurance companies do not approve PET scans and some drugs used for ovarian cancer. He says he finds this very frustrating. Some people have gotten PET scans approved, and others have not. I have always had CAT scans done. The people who have gotten PET scans may have some answers on how their PETS were approved.

I had the 6 treatments of Taxol/Carbo and had 28 external radiation treatments, and a 28 hour internal radiation. I completed treatments in 8/09. I had a recurrence and started chemo again 2/11. I am hoping to have one more chemo treatment and then have another 18 month period with no treatment. I know further treatment will be needed. I have a chronic disease.

UPSC is an agressive cancer. I think you will find it spreads differently for everyone. As you read more of the discussions on this board you will find how different we all are. One thing is common is that support each and care about each other. So feel free to come back with any questions or concerns you may have. In peace and caring.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Ro10, I never thought of it that way - I can handle chronic! Wow! Everything you described is like what I went through. Thanks for sharing your story. Where did your recurrence show up & how was it discovered?

As far as the CT verses the PET - My dr described the difference in the CT & the PET. Size is everything with the CT but he said in a PET Scan, Cancer cells light up like a Christmas tree once they are a little more than microscopic. My lymph nodes did not increase in size, but were 'filled' with cancer cells & hard as a rock (something he had never seen before???) Also, the CT scans I've had are only of the Pelvic area. The one PET scan was a full body scan from head to knees. With a CT scan, how would they detect anything above the pelvic area if they don't scan it? Do they just wait for symptoms to appear???

Anyway, Ro10, I'm going to pray for 18 mos + many more months of Chemo Free/Cancer Free body for you. Thanks so much for your response!

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Bonnie,
Welcome to a supportive site that no one wants to need. But since you do, you will find many others who must deal with this disease and have much experience at different stages of disease progression as well as those who have been treated and have never recurred. With this range you should be reassured that what you have read is indeed outdated. Improved treatment - following ovarian ca protocols is relatively new so not much historical data for new statistical reference.
The worst issue is that although it is known to require this ov ca monitoring and care, bureaucratic systems that approve tests and treatments are very slow to change, if they ever will.
I have had PET scans covered thu a PET Registry but know it is difficult to get done and I do not have to deal with the process. I rely most heavily on the pet results more than ct as it is what show probable cancer activity.
I was diagtnosed in late '07 and treat in '08 initially and then for recurrence in '10 and will restart again in near future. My recurrences have all been in lymph nodes with latest under collar bone - getting scarier as it moves northward. If you are experiencing symptoms at this time, it is most likely that something will show on a CT scan. Also, does your dr monitor your ca125? it is a commnly checked cancer marker for ov ca and upsc. Are you being treated by a gynecologic oncologist as they are best for treating this disease?
Also, do remember not everything is cancer. Once we have this diagnosis it is always our first fear with new symptoms but they can be from something quite unrelated.
I was Stage 4 at diagnosis and I'm still kicking around here :-)
Annie

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Thanks Annie (upsofloating) for replying & I really mean it when I say I'm glad you are still kicking around here!!! Maybe our Cancer IS Not Curable - Just Chronic as stated above. I don't blame you for being more scared as the Cancer moves upward. That's exactly why I am paranoid right now. Why do I have that lump in my throat - Why do I have pressure/pain in my breast bone & shoulder blade area? My doctor says, in his experience, he has not seen our kind of cancer spread in the manner I described with the symptoms I described. He wants me to see my Primary Care doctor.

So when did you find out and how did you find out your cancer recurred under the collar bone. Is this the 2nd or 3rd recurrance with you? Did you have symptoms or did it show up in a PET scan or CA125. I just had that test on Friday & go to my oncologist for my first pelvic exam/Paps tests next Monday.

You mentioned you rely on a PET Registry - What is that? I know you said you don't have to deal with that and I am so happy for you. Do you happen to know what medical code is they use for your diagnosis? Do you get the mounds of paperwork I do for everything they do to you? I do & medical code 182.0 Uterine Cancer) is on practically every piece of paper I get and it just doesn't work for my insurance.

Hope to hear from you soon and have a Blessed Day!
Bonnie

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Just came across this mention of a new OB-GYN Journal article:

"PET/CT in Gynecologic Cancer: Present Applications and Future Prospects—A Clinician's Perspective
Obstet Gynecol Clin North Am. 2011 Mar;38(1):1-21, A Amit, J Schink, A Reiss, L Lowenstein

Abstract:

This article briefly reviews the epidemiology, diagnosis, and treatment of the common gynecologic malignancies, with an emphasis on the shortcomings of current clinical practice. The persistent need to achieve early diagnosis, adjust proper treatment, enhance surveillance, and improve the outcome of these patients has led to the development of new diagnostic modalities. Novel tools such as 18F-fluorodeoxyglucose PET/CT should aim at enhancing the clinician's ability to make critical decisions in treating difficult scenarios."

I don't have access to site, full article can also be purchased. Nevertheless, it does point toward perhaps improved access to scans for uterine cancers.

My lymph node made itself known when it became suddenly enlarged apparently due to inflammation from necrosis within the node - an indication of rapid growth with cancer quickly outgrowing its blood supply leading to cell death -- more info than I wanted to hear. It was only a few days before my already scheduled followup PET/CT and ca125 test. So symptoms and checkup all coincided. Hard to describe whether this a recurrence or just the nature of a chronic disease. This is a new location however, so could be considered 3rd.

I'm covered by Medicare which does limit PET scan coverage and am treated at a teaching center so they may be more familiar with possible coverage options. I think my prior gyn-onc coded me as ovarian since it was a differential diagnosis option at original debulking surgery, etc, and there was no primary cancer in the uterus. Current gyn-onc seems less flexible.

Navigating the bureaucracy of care and coverage sometimes seems as bad as the disease -- and just as 'chronic'.
Hope all goes well, and recurrence is not on your current agenda.
Annie

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Hi Bonnie,
I'm sorry to hear about your diagnosis. I had the same stage and grade UPSC stage 3c with mets to para-aortic lymph nodes and finished treatment in 2009. I'm afraid the code for uterine cancer 182.0 is the same whether it is upsc or regular endomtrial adenocarcinoma. Most insurances will only pay for a pet if abnormalities turn up on a regular ct scan, for example enlarged lymph nodes or an unexplained mass. I would think your doctor would have to write a letter with a specific request explaining your situation to see if the insurance company would okay a pet. Otherwise all we can do is wait for symptoms or a rise in CA125. Maybe other women on this board will have some other options or experiences they can relay. I know it's very scary!

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

How are you doing? You mentioned you finished treatment in 2009 - Any hint of recurrence for you? I pray you are doing fantastic!

Yes, the uterine cancer code my doctor uses on EVERY test/procedure is 182.0 & NO, my insurance won't cover it. My oncologist is working on this, but nothing yet! I've even gotten my Primary Care Doctor, who's totally uninvolved with my cancer stuff, except that I keep him informed of what's going on, trying to find the applicable code so I can get the PET Scans covered. He is in total disbelief that one of the main tests he calls 'most reliable' for cancer detection, is not covered. He's a Chief Resident at one of our local hospitals & president of some Houston Metropolitian Doctor Association - He said if he can't get an answer from at least one of the 200 doctors he's in contact with regularly, he'll be shocked.
I am just praying that someone, especially if they have Aetna, has broken through the 'secret' code system to find that magic medical code.

I'm glad I found this site and look forward to keeping in touch! Have a wonderful day!
Bonnie

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Thank you for your kind words. So far, so good. I go in next Tuesday for my 4 month follow-up. Aside from the usual fleeting pains and a little lymphedema in my pelvis and leg I am doing fine. I expect the exam to be uneventful. You mentioned a mass/swelling in your chest? That should be enough to warrant a lung ct. I would definitely push for that. Then if something is out of the ordinary on that, a pet should be covered. I hope everything turns out alright. Just try not to let your imagination run away with you!
Laura

sleem
Posts: 92
Joined: Feb 2010

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

I also have UPSC. Diagnosised 9-4-2008 (stage 1 grade 3)confined in 1 ployp, no spread, no lymphs. As of today, it has not come back. I have learned so much from our fellow sisters on this discussion board. My CA 125 has risen in last 8 months. Still in normal area, but concerned. Already discussed PET Scan. I didn't know those are so hard to get. I might just check with our insurance & see what the thoughts on this is as it seems we all have a possible come back sometime in this chronic disease. I'm 2 years out NED; but know it always lurks around. I am treated at MD Anderson. Yet, I found this article on this discussion board. Everyone here is so supportive. Sometimes I'm on the live chat just for us on Wed.
Hang tight, you have a place to come here.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I always got CT-scans only until I had a sharp spike in my CA-125, followed by a CT-scan that showed enlargement in a couple lymph nodes. That combination of symptoms was enough for my insurance company to approve a PET scan. And after that, to measure disease progression, I have always gotten CT/PET-fusion scans and my insurance has always paid. So I guess I'm saying that PET scans are a part of monitoring AFTER a RECURRENCE. I think the insurance criteria is that a CT-scan needs to first show something suspicious, and then a PET scan can be justified and approved.

There is really no advantage to getting a PET scan before something is large enough to be spotted on a CT scan, as there can be false positives/negatives on PET scans for tumors smaller than 1 cm. (Once a tumor is 1 cm or larger, PET scans are something like 97% accurate at identifying them a s cancerous.) So until something shows up on a CT scan, rest easy, and don't bother fighting for a PET. Data shows that cancer that is 1 cm or slightly larger is JUST as easy/hard to beat back as micoscopic or very tiny tiny tumors. So there is no advantage in overall life expectancy to intervene with chemo before things are visible on a CT-scan.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Linca (lindaprocopio) I see you joined this website in October, 2008, so is that when you were diagnosed? I would love to hear your story. Have you had a recurrance? You mentioned the combination of symptoms was enough to cause your insurance co to approve the PET scan. Do you know what medical code your doctor used???

I guess I only 'trust' the PET because of what my doctor said - How it lights up like a Christmas tree if Cancer Cells are larger than micoscopic. My lymph nodes did not enlarge, but got hard as a rock - something my doctor had never seen???

Anyway, I hope you are doing well & would love to hear from you. By the way, what a beautiful background in your picture - Where was that taken?
Thanks again,
Bonnie

mackfoxy
Posts: 1
Joined: May 2011

I jsut found out I have UPSC. I am going to see the oncologist Wednesday. What were your symptoms? You have been lucky so far. Did you have surgery? I hope I am as lucky.
Randy

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Daisy, Mary Ann, had trouble getting an okay for payment from, I think it was also Aetna. Because it's pap serous, they now have to pay. I think you need to appeal. I would suggest you start a thread asking for help as the title on this discussion board.

Ah? okay, so I responded before I read the rest of this thread. dah!

It is more likely to be covered if, rather than arguing with some paper filer, you file an appeal. Might work. Some insurance companies just routinely deny things.

Best of luck,

claudia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

that we should live each day fully with joy - and not with fear of recurrence. That kind of stress will not help our health. It can be challenging (I know - I am a "work in progress" on that sometimes) but please work on putting the fear and anxiety aside and think and BE healthy.

Love all you ladies. Mary Ann

sleem
Posts: 92
Joined: Feb 2010

Perhaps it is all something that we go through...thought of relapse...knowing the suggested outcomes of stats...but knowing hope is always there...I've had to work my way around stats...Linda...you are speaking to us & into our hearts & minds...I am so glad to be able to read other women's messages here....sometimes it feels as if a jury has provided a sentence without help of a lawyer...public support...and decision made for just how long & when...then... hope shines through to live better each day...wiser...and to the fullest ...which I should have been doing all along...fear sneaks in when I least experience it...& then..with another momment...a cloud leaves and a sunshine beam comes in...I am living fast & catching up to smelling the roses with our grand kids, our children...friends...doing things that I put off for years..travel, family history... being kinder...getting what I wanted to say to people said....love you...thank you...volunteering, studying the Bible...etc...while I am making what I would like known for future generations left in various means... those stories only I know.... as yest, I'm the eldest grand daughter on both sides...

I think what Linda said, live the life you wish...do the things you want to do...and when those fears start sneaking in...come here...or go do what you need to to shove those thoughts away...I have a circle of friends that I can be me when I need to have a cry party...and then quickly move on...my husband & kids can not bear to discuss this with me...so this place is great...

Thank you all again, best to you, your time to write & comment helps greatly...I'm not on here often...so please know that I might not response quickly...but it doesn't mean I will not show up sooner or later...as I'm trying to catch a star everyday even if it is 3 seconds of pure fun.

minniejan
Posts: 88
Joined: Dec 2010

Thanks to all,

I finished treatment 6 weeks ago, then had a blood transfusion (low red blood counts) and with my medical team's approval, left for a trip across country to visit my son in sunny Arizona. I have been here two weeks, relaxing, taking short trips in the morning, resting in the afternoon, then back out for dinner every night. My husband was able to come with me, but he just flew back home, as work beckons. I am here a week longer, just basking in the wonderful warm and dry weather. My biggest accomplishment has been a hike up part of Camelback Mountain, I didn't make it to the top, but what I did hike gave me so much pleasure. I did get many odd stares from young men and women who were running up the mountain for exercise, and kept wondering if they could hike 6 weeks after chemo and brachytherapy! I loved mountain hiking prior to diagnosis, and my soul sang when I reached the saddle and saw the valley below.

I finally decided to read through the posts today, after a self imposed break, and would like to just add a couple of thoughts. My prayers are with those new here who are undergoing initial treatments, and to the "sisters" who are facing new obstacles. And to thank everyone for the amazing, amazing information I have gleaned from the posts in just the last two weeks. I am taking notes about nutrition, etc. for when I return home. For now, I am just enjoying myself and trying to banish the fears I have daily. The bright sunshine certainly helps. I wish I could bottle it.

MinnieJan

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

How wonderful that you are able to get a change of scene after your treatment. Sunshine and beautiful views always seem to help one's mood, and I think it is a real achievement that you could hike up part of Camelback Mountain. You are returning to your life. Congratulations.

The daily fears will slowly fade, and you should find yourself thinking about the Big C less and less. Taking control of your nutrition should help immensely, both in terms of your overall health and psychologically.

I, too, wish you could bottle the great warm and dry weather and send it to those of us who are presently having a chilly and rainy day.

I wish you continued NED and peaceful thoughts.

Jill

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I have had times in my life the last two years in which I had to take a break from the posts. Sometimes you need to take a break from cancer and that is OK. It is not denial; but a needed break not to think about cancer for a while.

The desire to share comes back and of course we learn more here often than from our own Doctors! Sharing your treatment helps others to see if they are on tract. And it is always great to hear about clinical trials and what produced a great long remission.

Love you all.....Diane

jtburg
Posts: 1
Joined: Jul 2017

I woke up this morning, still shocked from the news I received yesterday that my mom has USPC. All I'm reading online has me heartbroken and scared. We wait to see when she'll be scheduled for surgery and will know then what stage she's in. Reading through this thread has provided a glimmer of encouragement, but still...such a devastating reality to process right now. I see the last post on here was from 2011. Are any of you still checking this thread and able to provide any hopeful words?

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

This is an old thread and the only one still posting is California Artist. Do read her bio-she's very much a success story and inspiration. Just click on her name.

I'm over 5 years out since my surgery for USPC and, knock on wood, doing fine. You and your mom are currently in the most difficult phase. You are in shock over the diagnosis and have no place for the adrenaline to go while you wait for treatment to begin. At this  point it's a stressful waiting game. Fortunately for your mom you have found us and we can help. Keep coming, reading and asking questions. 

BarbershopBari
Posts: 2
Joined: Aug 2017

My wife's diagnosis followed her total hysterectomy and was stage 4 as per metastisis to her omentum, much of which was surgically removed at Riverside in Cols.  No lymph node involvement, and cancer cells still in microscopic form.  First round of treatment in Mansfield at Clev. Clinic branch consisted of 6 carboplastin/taxol, once every 3 weeks, starting in July 2016.  Scans in Dec. 2016 and March 2017 were "clear", but in mid April, her lower abdomen was found to be full of ascities, a liquid the body produces to combat the cancer cells.  Via an abdominal catheter, large amounts of the fluid were removed every other day at home, under RN supervision.  In early going, we were removing an avg. of 1 litre per day.  Finally after 6 weeks, it stopped.

 

 Her second round of local treatment consisted of Doxil and Avastin, which began in early May ending in late July, 4 treatments.  Scan on 8-2-17, showed that the canceer had advanced to the upper regions of her abdomen, with further ascities in these areas but not drainable.  Doxil discontinued immediately.  Visited main campus at Clev. Clinic and Stephanie Spielman Clinic in Cols. last week looking for clinical trials.  None found that would appear to be advantageous over her current 3rd round of treatment, locally, Taxol WEEKLY, 3 on and 1 off; Avastin every 3 weeks.  Scans to follow around mid Nov.  Estimate of standard chemo regimens working.................only 10-30%.

 

My wife will be 70 in December and is in otherwise good health.  Two frighened people here!  Now looking into vitamin and any other kind of alternate treatments we can evaluate.  Any ideas for us?

Maxx7007
Posts: 1
Joined: Aug 2017

My doctor called me today. She just gave the diagnois- Aggressive Papillary Uterine Cancer.  Now I am researching and calling my insurance companies.  Wow, this is a surprise.

Sounds, like surgery, chemo, radiation at least.  Do I need to look for a specialist or a university hospital specializing in this type of cancer?

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

My opinion, find the best gyn/oncologist you can at the best cancer center you can go to.  It matters where you get your first treatments because that's your best chance of beating this monster. 

CKing78142
Posts: 2
Joined: Dec 2017

My biopsy came back yesterday positive for Endrometrial serous adenocarcimona......I went to ER on October 18 with vaginal bleeding.  They did two scans which showed blood pooling in bottom of the uterus but showed no spread.  It took almost two momths for me to get into the specialist I was referred to......now she wants two more scans of the chest and abdomen.....and I am working on an appointment with a gyn/oncologist.  Can this cancer spread that fast?  I am scared to death.....I had breast cancer in 2008 and had sone well since......my bloodwork in August was good........

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

as this is an old thread you might get better responses if you start a new thread...

and yes it can spread fast...mine did...I have Stage 4 UPSC and had my hysterectomy in Nov 2016 then 6 rounds Taxol/Carboplatin and 25 rounds of external beam radiation to pelvis/abdomen and 3 rounds brachy. It spread to lymph nodes in my neck so I had 30 rounds of radiaiton there and 4 cisplatin infusions.

My prognosis looks good but won't know for sure until January...

Start a new thread---you will get lots of ladies to respond and help...

 

CKing78142
Posts: 2
Joined: Dec 2017

I have a consultation tomorrow afternoon after pushing for an appointment.  On one hand I am happy about it on the other I am afraid of what she will say......

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I'm glad you got the appointment...hopefully she can give you some answers...

Joannaray
Posts: 4
Joined: Mar 2018

Hi, I am new to this chat room, my mother in law just diagnosed with serous uterine cancer.

she is with medical problems  she is 77 frail elderly. I am reading that this type of cancer is the aggressive type.what treatment option

is best for her? Right now she is high functional. I’m not sure if she can recover if she will opt for surgery radiation and chemo

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