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UPSC Treatment

willjh
Posts: 10
Joined: May 2016

While I have been reading posts for several weeks, this is my first time on the dicussion board- I have so many questions!  I had Robotic Assisted Hysterectomy 4/15/2016 with complete staging revealing a diagnosis of 1a UPSC. I feel very fortunate to have been diagnosed at such an early stage and fully anticipated given what I had read that the stage would be much higher. It might be important to note that the pathology showed no involvement but minuscule residual cancer cells. At the first appointment to discuss the pathology report, I was given the options by the GYN Oncologist of observation or treatment with not much other information. As many of you have indicated, research is challenging, given the small numbers of UPSC patients, but I have spent hours researching. Initially, I was told if I chose treatment it would be chemo only, but now have been told that I should have Brachytherapy after chemo and that the radiologist would determine how many .  I am very confused.

PART I: Would those of you with 1a diagnosis please tell me about the sequence of your treatment? I have read that some have had radiation first, then chemo, then radiation and have read that some of you had chemo first and then radiation. How many radiation treaments, the order of radiation, what kind of radiation?   Would you please be very specific about the kind of radiation for each treatment, external or bracytherapy and why your oncology team chose that particular radiation?  There seems to be several different treatment protocols, depending on the Oncologist......I thought the protocol for different stages of UPSC were usually determined by the NCCN boards and don't understand  why there are so many different treatment options for the same cancer stage?

Did your Oncologist decide on the kind of radiation and how many radiation treatments or did the radiologist?

PART II:  I have decided to get a 2nd opinion at a nearby cancer center with another GYN Oncologist; unfortunately, the 1st available appointment is not until June 27,2016. Since surgery was 4/15 and treatment would probably not begin until sometime in July....almost 3 months...is that too long to wait for treatment?   I could go ahead and start treatment with the current oncologist, but then ....why get a 2nd opinion?  I really would like a 2nd opinion, but should I be concerned about treatment delay waiting for an appointment?

Any insight would be greatly appreciated.....thank you.

 

 

 

 

 

 

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I am UPSC 1a.  I am at M.D. Anderson in Houston.  They would not even intertain the idea of chemo alone, radiation alone, and almost keeled over at the idea of "watch and see"!  I started with Radiation(only becase I had to have open heart surgery first and they wanted the new aortic valve to "take hold")  I had  four internal radiation, then  the last radiation was scheduled on the same day as my first chemo, so I had the radiation early in the morning and an eight hour chemo of Taxol/Carbo later in the morning.  I had six chemo, five internal radiations.  UPSC as you know is a grade 3, very agessive.  It only makes up ten percent of all uterine cancers, BUT thirty percent of  all deaths by uterine.  I complained to M.D. anderson about the "overkill" of treatment, but was basicly told it was going to be the whole thing or I could "take my business elsewhere".  

 

Three months seems long, but I was diagnosed July of '09 and due to the heart and a blood infection. I did not get to have the hysterectomy til Dec. 3.  After you get a second opinion, and if you deside to go ahead, ask for a cancellation surgery date to get in earlier.  BTW, I am Debra(Jo) and I am only one of several with UPSC on this board.  Also, since I had "the full monty"  I have been NED ever since,Thank God!  Let us know if I can help.  I'm kind of an "old timer" so some of the other newer UPSC ladies can probably help more since treatments and other things have changed some since '09!  Best, DebraJo

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

willjh, after reading what you wrote I think we had the same type/stage.  UPSC, 1A.  

PART I:  I hope this will answer your question on the type of treatment received for this order: 3 chemo (taxol/carbo - 21 days apart), 25 IMRT external radiation treatments (Mon-Fri), 3 brachytherapy (1 a week), 3 chemo (taxol/carbo - 21 days apart).  I will say I was warned that getting the treatment done on this timeline was going to be tough as the radiation would affect the bone marrow in the hips, because there is a lot there, because you need the white blood count numbers up to complete the chemo)  My 6th and final chemo was delayed one week because my numbers weren't there.  

IMRT is really advanced radiation.  A plan is developed to adjust the amount of radiation given in different areas - less to the bladder or colon to minimize those near and long term side effects.  After the plan is given I received an x-ray before each radiation treatment to 'adjust' where the beam had to go based on where my organs had moved in between.  The radiology technician had told me it can get to within 1/1000th of the same place every time.  

My gyn onc said "this is what the treatment will be" but I met with a radiologist when that time came in the plan and he went in to greater detail and told me I could refuse if I wanted.  

To 'keep the numbers up' I was told to 'push the protien'.  Chemo kind of kills your appetite but I had to force myself to eat meat, nuts, cheese, yogurt...I also had already been taking probiotics prior to all this, which I believe, minimized diarhea during radiation.  If possible, you may want to see if you can meet with a dietician who specializes in helpiing cancer patients.  I really got a better insight in to what 'push the protein' meant.  

The dietician had shared a study with me where half the cervical cancer patients received probiotics and the other half did not.  It was shocking and seemed inhumane.  While graphic, I shared the study with coworkers who began taking probiotics as a result and told me how much better they felt - and they were completely healthy.  The dietician also explained to me that the body sees highly process soy - soy protien isolates - as a hormone, and hormones feed my type of cancer, so I read labels now to avoid this at all costs.

PART II:  I did not seek a second opinion because I was very comfortable with the treatment my gyn onc and his team set in place.  I am sure they would have supported me if I had wanted get one, but you may want to ask what they think about and if it the delay would affect the results.  Reading everything now, I know it is aggressive but I don't think that really means fast growing. 

For me, I wanted to everything I could to beat this and put it in my rear view mirror.  When I met my gyn onc to get a surgery date I asked him, "what are you doing tomorrow?" because I wanted it out that quickly.  I had a hard time wrapping my head around the radiation, and I was told I could always refuse it, but in the end I did it all.  I was diagnosed in April 2012 and just have the regular check ups with a blood draw and pelvic with no problems. 

Please feel free to ask any questions.  I hope I have explained my treatment clearly.  You are not alone.

willjh
Posts: 10
Joined: May 2016

Debra Jo and No Time for Cancer, thank you both so much for the information. Debrajo, your other health issues, I hope, have resolved?  No Time FC, I appreciate the detail you included.  External radiation has not been mentioned.....but I am learning that with cancer, "things change" often.

It has been 7 weeks since I received the diagnosis and 6 weeks since surgery- my how my life has changed!  Since I do research on what car or appliance or even what new restaurant to visit.... having little current information has been difficult for me to wrap my head around. The fact that so few recent studys have been done on UPSC and that since there are so few subjects in those studys that coming up with statistics to form a treatment protocol is challenging.  While, I get that money and research must go to the "big" cancers that will help the most people and that there are a lot of "little" cancers like ours; it doesn't make having our kind of rare cancer easier.

I am very grateful that this board exists - knowing that there are others that can share information is comforting.  Thank you. 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Willijh,

Glad you found us. It is very confusing when the medical community doesn't agree on the exact approach.

I went to Moffitt in Tampa, FL. I did not get a second opinion because I felt very comfortable with their recommendation. Especially after reading all of the posts from this board.  My gyn/onc worked with my radiologist. They are both at Moffitt.  My gyn/onc set the treatments in motion for both the chemo and radiation.

Here's my story: Diagnosed in May, 2015 at age 58. Hysterectomy July. Started Chemo in Aug. Completed chemo in Dec and had Brachytherapy in January, 2016.

Chemo was a bit different for me than most of the ladies that have posted. My surgeon suggested the standard 6 rounds of carbo/taxol three weeks apart. However, I went to a local oncologist for my chemo and he wanted me to do weekly lower doses instead of the higher every three week doses. So, I did that for the first 6 weeks. That equaled 2 full rounds. I then switched to the higher doses every 3 weeks so that I could have a break in between with more days of feeling better.

My radiation was vaginal brachytherapy only. I had 5 smaller doses instead of the normal 3 larger doses. My radiologist recommended this to minimize damage to the vaginal tissue. I don't know if it made a difference but I can say that I tolerate the dialator without any problems now.

Everyone has to decide their own path to fight this beast. For me, I would do everything exactly the same. I wanted to walk away from this knowing that I did what I could to live a long, healthy life. I am just over 5 months post chemo and 4 months post radiation. Life is slowly getting closer to normal. It does take time to build up our strength after all we put our bodies through.

I hope you find the answers to give you peace of mind for your path forward.

Love and Hugs,

Cindi

Terry123
Posts: 8
Joined: May 2016

I had a radical hysterectomy on May 18th after finding serous carcinoma in the polyp removed during my d&c. the findings in the pathology report after the hysterectomy showed only precancerous growth in the uterus.  I see from many of your posts, that most of you recieved chemo even if you were stage 1. My oncologist is recommending varginal radiation with no chemo. The reason she doesnt want to do chemo is because of a possible reaction to the chemo drugs due to a mast cell disease that I have. Have any of you only had radiation with a diagnosis of stage 1 serous carcinoma?  I'm concerned about the high recurrence rate with this type of cancer. Thanks for any feedback you can provide. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Terry, I had  both chemo and radiation but I wanted to tell you that my radiologist said that the first place that UPSC normally recurs is at the vaginal cuff. So, hopefully by getting the radiation you won't have a recurrence.  Also, I read several studies where they said it was "OK" to go into a watch mode with a phase 1A diagnosis. I can understand why you are concerned though. I would be too! However, it sounds like your tumor was contained in the polyp. That is very promising from what I understand.

Love and Hugs,

Cindi

 

Terry123
Posts: 8
Joined: May 2016

Hi. I just had a radical hysterectomy on May 18. i had upsc in the polyp but only precancerous cells in my uterus.My oncologist is recommending radiation and no chemo. Mostly everyone seems to be recommended for chemo so I am going to get a second opinion too. Very grey area with treatment for stage 1a. Anyone else only have radiation

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I posted some time ago about a research study on the treatment outcomes for UPSC. There aren't many research studies on UPSC as it is a rare form of uterine cancer. That's part of the reason this cancer is treated like aggressive ovarian cancer. Ovarian cancer is researched a lot.  The standard of care is based on research. If you type in the title of my post- Research study on UPSC- it will bring up my post. Keep in mind that overall survival is impacted by all causes of death and not just death caused by cancer. I was particularly interested in the stats for the 5 year disease free survival for stage 3A, which in this study is 56%. This is an old study, I realize, but the treatment for UPSC hasn't evolved much due to lack of research dollars directed toward finding better treatment. This is not breast cancer we are talking about! There's no "race for the cure."

If you are diagnosed with stage 1, this study suggests that the best outcomes are observed when the woman receives both platinum based chemo and brachytherapy.

Hope this helps,

Cathy

 

 

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

 

These are a good articles that may help you understand some studies that looked at treatment options/recommendations for patients with early stage UPSC. What I take from them, is that in general, fully surgically staged state 1a UPSC patients benefit from chemotherapy adjuvant treatments (no recurrences in patients with early Stage 1A UPSC that received chemotherapy) vs those who received radiation or were observed, both groups had similar rates of recurrence.  Hopefully you find this useful as you make these important decisions about your treatment.

Regards,

Lucy

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170905/

 

http://news.cancerconnect.com/adjuvant-chemotherapy-for-papillary-serous-carcinoma-may-improve-survival/

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Thank you, Lucy.  While a few years older the articles are very good.  You may have posted them previously but I missed them so I am glad I saw them now.

Terry123
Posts: 8
Joined: May 2016

Thank you for your response. I have another question. IF serous carcinoma was in the polyp and removed at d&C but pre cancer was found in the uterus from the hysterectomy is that considrerd 1a or 1b?  

 

 

 

 

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

I am posting below a quote from an interesting editorial in Gynecologic Oncology which, while is also somewhat dated, (2005) I found useful because it summarizes what researchers have learned over 25 years (1980's to 2005) of treating UPSC. I have a copy of it, so feel free to email me if anyone is interested in its contents.

Uterine papillary serous carcinoma: What have we learned over the past quarter century?

"A challenge with UPSC, as with ovarian cancer, is the likelihood of false negatives from surgical and pathologic sampling during evaluation of the entire peritonealcavity and retroperitoneal nodes. In Stage IA, grade 3 ovarian cancers, chemotherapy has been shown to improve disease-free survival despite the fact that no metastaticdisease is known to be present. Because UPSC is another high-grade cancer that spreads intraabdominally, it may be best to take a similar approach and recommend adjuvant chemotherapy to all women with Stage I UPSC. Future studies, prospective and randomized it is hoped, will need to define the optimal chemotherapy regimen.The results of the Kelley et al. study suggest that the combination of platinum-based chemotherapy and vaginal brachytherapy is currently the most efficacious adjuvant treatment for Stage I UPSC"

 

Barbara A. Goff

 

Gynecologic Oncology 98 (2005) 341–343

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

I always wondered how they could REALLY be sure I was 1a at diagnosis, so the false negative remark makes a lot of sense.

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

The name on the bottom of the quote I show above is the oncologist that produced the editorial (I wanted to credit her with the comments) but I see it might be understood as if it is my name, :0) I am actually Lucy (go by LA123), sorry about the confusion!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Terry123, below comes from the American Cancer Society site.  Hope this helps:

  • Stage IA (T1a, N0, M0): In this earliest form of stage I, the cancer is in the endometrium (inner lining of the uterus) and may have grown from the endometrium less than halfway through the underlying muscle layer of the uterus (the myometrium). It has not spread to lymph nodes or distant sites.
  • Stage IB (T1b, N0, M0): The cancer has grown from the endometrium into the myometrium, growing more than halfway through the myometrium. The cancer has not spread beyond the body of the uterus.

If you want to see the entire list here is the link:

http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-staging

Red Corvette
Posts: 105
Joined: Jan 2016

My wife is also USPC Stage 1a with no other involvement so we feel very lucky to have caught this hopefully very early. My wife's gyneoncologist said 6 carbo/taxol treatments plus 3 brachytherapy radiation treatments is the current standard treatment for Stage 1a but we did get a second opinion from another respected gyneoncologist who said observation alone could be ok too. 

When we told our primary gyneonc about the second opinion that observation was an option, his comment was "not if she were my wife."  Supposidly if you're Stage 1a and after hysterectomy, there is an 85% to 90% chance if will not reoccur. If you do the chemo and radiation, it raises the odds to 95 to 99% that it won't reoccur.

So its a tough decision either way but we decided to do the standard treatment beause if we didn't and it came back, we would never know if the standard treatment would have stop a reoccurance. My wife's gyneonc was ultimately comfortable with doing 4 chemo treatments given my wife's situation. We just finished chemo and have 2 brachytherapy treatments left to go. 

Take care and hang in there!

Red Corvette

ghorselady
Posts: 2
Joined: Sep 2015

I had the full hysterectomy on March 3, 2015.  After discovering that I was 1A with no myometrial invasion, my doc (a gynocological oncologist), said that a recent study from Cleveland Clinic and Henry Ford Hospital showed that neither chemo or radiation made any difference if lymph nodes were tested and negative.  I got a second opinion from University of Michigan and They said that chemo would make no difference, but bracytherapy would.   Both said I had a 10 per cent chance of recurrence.    The finding of no invasion of the myometrium made the big difference, according to both.  After much soul searching and no pressure from my doc, I decided to go with just observation.  I am 72.  Dr. Google seems to say that brachytherapy helps with vaginal recurrence but not overall survival because this sucker comes back lots of other places.  I had a friend who had clear cell and received brachytherapy.  Hers came back at the site of the radiation and she died last week.  This is a tough decision.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

ghorselady, I am so sorry to hear about the loss of your friend and now you having to deal with a diagnosis yourself is the one-two punch.  We all are given a plan and have to make the choices for ourselves if we want chemo, radiation, observation, etc...whatever we feel is best for ourselves.  

If possible can you request a copy of that recent study and share it with us?  I would be very interested in what gyn onc compiled the study and when it was done.  I am so sorry that you have joined this group, but you are welcomed with open arms.

willjh
Posts: 10
Joined: May 2016

Thanks for all the information that so many of you more experienced "sisters" have shared with those of us who are new.  In another post on the discussion board I read the suggestion to not get on the internet.  While, I know there is a lot of out dated information and at first, much of the research made me so frightened that I could only read small amounts at a time, .... I think we all are better equipped with knowledge. 

Isn't it interesting and very confusing that with 1a UPSC- treatment options can be "all" or "nothing"?  GHorse Lady and Terry123, you might want to check out the National Comprehesive Cancer Network for the protocol treatment for UPSC- Since it can be difficult to navigate- I just Google- NCCN Guidlines for Uterine Cancer. With some searching you should be able to go to the national standard of care for UPSC.  Also, MD Anderson has on their web site an algorithm for UPSC treatment by stage.  

One of the reasons that there is such a difference of opinion in treatment is that the criteria for 1a can be anything from totally contained within the polyp to some myometrium invasion- that is a huge difference.  When studies for recurrance and survival rates are determined for stage 1a there just aren't enough patients to seperate the subgroups to get definite treatment guidelines. 

Thanks to all you experienced ladies for taking the time to inform those of us who are new.  I am very grateful that I have found you.

ghorselady
Posts: 2
Joined: Sep 2015

http://www.ncbi.nlm.nih.gov/pubmed/25575483 This is the study I mentioned.  I had to read it several times to understand what my doc was talking about.  Bottom line for me is that with no myometrial invasion and if lymphedectomy was done, radiation and chemo make no difference.  This is really hard because the title makes you think that radiation does make a difference.  As I understand it, 1A includes instances of myometrial invasion.  Therefore,  there are different classes of 1A.  My second opinion doc made a big deal about the noninvasion, and even redid my labs to make sure there was no invasion.  He said if there was invasion, I would need the full treatment. 

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

Based on FIGO 1988 staging criteria, there used to be stages 1A (no myometrial invasion), stage 1B (up to 50% myometrial invasion) and stage 1C (more than 50% myometrial invasion), but that was changed in 2009, with the old 1A and 1B grouped together to become the new (FIGO 2009 revised) stage 1A.  That means if the study is pre 2009, stage 1 refers to supeficial only (no invasion of myometrium) patients.  Something to keep in mind is that one really can't go by studies that go back a quite a few years to****** risk of recurrences for early stage uterine cancer, because not all studies have been carried out on fully surgically staged stage 1 patients, this cancer is tricky, and has been known to be found in lymph nodes/omentum even if in patients with only superficial endometrial involvement. That means, if you have been fully surgically staged, as seems to be the standard now, and determined to be stage 1A/B, your prognosis would be better than results from similar stage (but not fully surgically staged) patients. When I was staged last year, my oncologyst did the full monty, took out even my appendix, 39 lymph nodes (para-arotic and pelvic), the omentum, as well as all the obligatory uterus/fallopian tubes/ovaries combo. I have seen studies where patients would have no lymphadenectomy, or no omentectomy, but still classified as stage 1A because of no myometrial invasion was found, that is misleading because this cancer is known to spread even in the presence of only a tiny polyp, or superficial micro zones. That is good news to most on this board with stage 1 since the standard for diagnosing moved to full surgical from clinical/partial surgical. Do not despair when you see recurrence rates as high as 25% (I have seen) in early studies, later studies are more comparable, better prognostic use.    

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Thank you for providing the link. It was copyrighted in 2014 and looks like it was published March 2015.  It does take several times to disect (ha-ha - get it) what medical speak is saying sometimes.  

I will say I did question the need for radiation myself (1A) for this reason, the radiologist even told me "it is up to you", but ended up going for the full monty.  The chemo was welcomed to kill off any little crazy cell that escaped the uterus.  

Again, thank you for sharing the link.  For me, I like to read all the information I can and need to read this a little more. Is this what I am reading?

103 patients included in the study.

Of this, 29 developed a recurrence.  (8 vaginal, 4 pelvic, 17 extra-pelvic) – 28.2%

It did go on to say:  The majority of recurrences were extra-pelvic. Vaginal brachytherapy has a significant role in reducing the risk of vaginal recurrence and surgical staging was the only predictor of outcome. Therefore, both (brachy and surgical staging - the parenthesis is my notes) should be considered in these patients.

Terry123
Posts: 8
Joined: May 2016

If you only had radiation, how soon after the hysterectomy did you begin treatment?

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

My first surgery the hysterectomy I only had vag radiation. I had surgery in Dec and started radiation the end of March. I wanted to be sure everything was healed first.

Terry123
Posts: 8
Joined: May 2016

was your cancer confined to a polyp?  did your oncologist only recommend radiation without chemo?  that is what my dr recommended Because mine was confined to polyp with only pre cancer cells in uterus. I hope you are doing well.  thanks for your input.

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

I had uterine cancer it was grade 1 stage 1a. The recommendation was brachytherapy I had 4 treatments which started in March and ended in April. Then almost 2 years later I coughed up some blood it was a meatasis to my rt lung 31/2 c. They removed the tumor and the middle lobe of my lung. that was a year and half ago. I finished chemo may 4th 2015. I go for a scan this FRiday. I am afraid because I don't feel good. no energy. I still don't understand how a cancer cell got to my lung when it was not in my nodes.  Sending you hugs and prayers Terry.

 

Cindy

ksdehn30
Posts: 33
Joined: Oct 2008

hi Cindy. Were you staged at original diagnosis?  Was it uspc cancer?  My mom was staged 1a serous confined to polyp. No chemo needed. Here's the kicker: 5 small lung nodules that they are having trouble biopsying. Ugh!!!  he is also a 20 year breast cancer survivor so if these are metastases in lung they need to find out if breast or uterine?  Her gyn onc said he has never seen this stage in the lungs. All lymph nose negative. Everything else negative except the polyp. We sent her slides to mayo too for 2nd opinion. Thx for your help

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

yes I was grade 1 stage 1a at original diag.Now I am stage 4 because of the lung metastis. No it was reg uterine cancer not uspc. Hope this helps. Are the nodules all in the same lobe?

ksdehn30
Posts: 33
Joined: Oct 2008

No, the nodules are not in the same lobe.  Her gyn onc thinks this is potentially breast cancer recurrence from 20 years ago because he said it would be so rare to be contained to the polyp and jump to the lungs....The good news is she feels really good.  Had a abd hyst with complete staging April 18th...She is 70.  So hopefully if this is cancer, she is in good health now which will help with the fight!  So your lung metastases were removed because it was in one lobe and contained to one tumor?  Her largest tumor is 1.5cm with 4 other smaller ones....so they are not overly large.  Thanks for your help!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

with grade 1, stage 1a to have a distant metastasis. If there is one thing I've learned from my cancer journey, it is that how cancer spreads is not well understood and that each of us have cancer that is specific and unique to us. When cancer progresses, it doesn't change your stage. I was diagnosed with grade 3, stage 3a cancer. If I have a recurrence, my doctor would tell me that I have stage 3a cancer with metastasis.

Wishing you the best,

Cathy

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

My onco says when it has spread to a distant location it automatically becomes an advanced cancer and he says I am stage 4. I like your doc's way of thinking better.

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