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UPSC Recurrence

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

Test results: CA125 jumped from 63 to 91. PET/CT showed 2 supraclavicular nodes with high uptake of SUV (17- suggest malignant) with a small (about 1/4 inch) splenic node (3.3 uptake) likely false positive. My lymph system was highly lit up by PET on initial scan (In retrospect, I was probably stage 4 from beginning rather than 3a) and the neck area has been a constant in all subsequent scans. Doc says definitely resistant cells there.

The plan: radiation daily for 4 weeks along with mild carboplatin chemo weekly. Take 4-5 weeks off and then more chemo - combination of drugs.

Hopefully I will be in treatment last week of Sept or first of Oct. I'm curious about the logic of single chemo discussed re: Linda's treatment. I will inquire about this too.

Doc said this type of recurrence in not typical and that progression will be rapid without treatment (bummer). I don't recall any of us having recurrence in the vaginal cuff which is the typical site, right?

I'd appreciate any feedback regarding this treatment plan. Thanks ladies.

Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i was just going to post a thread re: you today; i was worried about you, and possible bad news. i'm so sorry that you have to go through more treatment, but clearly no alternative. i've heard conflicting information re: single agents vs those in combination, so don't have real information re: this or your treatment plan in general, but have been interested in the single agent theory. yes, i certainly have heard that the vaginal cuff is the most common site for recurrence, but, i, too, have not read of anyone having a recurrence there. any possibility of clinical trials in your area? or is that not a possibility? do you feel the need for a second opinion at this point?

mary ann, i hope you can gather some good information to help with treatment decisions soon. know that i, as all of us here, are thinking about you and hoping for the very best for you. hang in there, and keep us posted on what you're doing and how you are. i agree, it's all such a big bummer. i'm sure that women on here can tell you a lot about your proposed treatment plan, and what's worked for them. mostly, now, i just want to let you know you're on my mind, and that i'm hoping you're doing ok--or as ok as one could under the circumstances.

take care, mary ann,

sisterhood, as always,
maggie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Mary Ann, I am so sad to hear about your need to further treatment. You have been a true warrior and have done everything possible to keep this beast at bay! It truly is a crap shoot! I also have not heard of anyone with a recurrence in the vaginal cuff....although this is suppose to be the most site. ????? Doesn't seem "common" on this site!

I have always admired your calm, thoughtful approach in dealing with your diagnosis. And I hope you know that all of us want the very best outcome for you. Maggie's suggestion of maybe getting another opinion is a good one, but that may also delay your treatment.

There are no easy decisions when it comes to considering your options.....I know you will make the best choice for YOU and that is all that matter.

Please keep us posted as we are anxious to hear how you are doing.

BIG HUGS to you!!! Karen

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

I hope you'll call me back; I'd love to talk with you.

Regarding the supposedly common 'vaginal cuff' recurence site; that USED to be true before women started routinely getting the adjuvent bracytherapy. I think the brachy does a pretty good job of keeping vaginal cuff recurrences rare any more.

But my radiation oncologist also told me that UPSC is JUST as likely to travel distantly as it is locally, and that's why the adjuvent systemic chemo given as soon as you recover from surgery. That's what makes finding good information about metasticise (sp?) so hard to find online; you can get "mets" anywhere and it's hard to find anyone else with a similar case as yours once you have a recurrence. Treatment for each unique recurrence is VERY customized within the limited therapies they have to suggest. A lot seems to depend on how good your bone marrow is. I think a big part of the decision to use 'single agent chemos, sequentially' for me was because I needed 3 blood transfusions to get the last 3 of my carbo/taxol rounds into me (plus 3 delays waiting for my counts to get up to safe levels again before I could have another infusion). So even if I wanted them to take a more aggressive 2-chemo-cocktail approach, my bone marrow would probably not be able to handle it without a lot of Nuepogen, Procrit, & blood transfusions, & maybe not even with them. If your bone marrow bounces back better than mine, you may have more options than I do.

It sounds like they have an aggressive schedule planned for you. You want to be as aggressive as your body can take, that much I believe, and yet still allow yourself a good quality of life. They'll tell you that you're no longer going for a cure, so you don't want the treatment to make your life miserable. Your goal now is to keep your cancer beaten back so that you remain SYMPTOM FREE. That's your goal. You want to feel like you don't have cancer as much as you can. I feel my oncologists have done a pretty good job with that and I am grateful to them for the skillful balance they've achieved. I am 10 months past my 1st recurrence (Nov. 2009) and I have remained symptom-free: no pain; no nausea; no neuropathy. Life can be good after recurrence; you sure as hell appreciate each new day!! ((((Maryann)))). Call me again.

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

Mary Ann, I'm sorry to hear of positive test results. Was any mention made to biopsy a node to confirm what is happening in nodes? I have been on single agent chemo this year, first Doxil (only 2 rounds) and then Gemzar. Although my gyn-onc prefers to start with single agent chemo, he also did not feel like my bone marrow would bounce back to maintain reasonable schedule of treatments. I have had good results with Gemzar alone.

What was reason for radiation? Were you having pain/other problems, or is it to kill off cancer cells? My nodes were para-aortic so probably more problematic for any radiation although Doc did not feel that was route to go, preferring systemic approach. But as we are all aware, with recurrence, treatment is highly individualized.

You're in my thoughts for success with this course of therapy.
--Annie

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

Thanks for your support and caring. Annie, I already had that area biopsied in May - positive for endometrial - so no need to redo it now. I'm not sure why no surgery - I didn't write his response down and am trying to clarify through my nurse - but I think it is because he does not believe the cancer is totally localized. Perhaps surgery will make it spread more.

I am nervous about radiation but I think is best thing to do. My husband did some research and found this is the best treatment. These nodes have consistently lit up on all my scans. The ******* will not leave. I will discuss this option with radiation onc and get his thoughts. I not inclined to go for 2nd opinion now. Hopefully this will do the trick!!!

I'm trying to stay calm but I feel my heart and neck throbbing constantly. I'm sure it's anxiety - sure hope it not the tumors.

I think we need to tell our docs for UPSC that we need longer chemo in beginning - beyond the traditional 6. My doc alluded to this actually. Maybe the thinking will be to stretch out the original protocol in order to get these resistant cells. Too bad the PET has reputation for false positives b/c this complicates things too. Medicine is not exact for sure. I guess we all do the best we can.

Linda, sorry I missed your call back. I will call you today. I asked my doc about your trial and he said that this is not the time for me to have this.

I'm planning to take leave from work and apply for disability as soon as I can figure out insurance coverage. Social Security said with disability, I can still earn up to (not a dollar more) $1000 per month for the first year. There's so many things to make decisions, isn't there!!!

Thanks again for all your thoughts and prayers. Sending back love and prayers to you all. Mary Ann

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

I am with you through this recurrance. Your oncologist sounds good. I can't figure this strange cancer out. Why some of us have it in the lymph; and then there's me with it in the peritoneum. It sounds like more is going on then we have research for.

I know you are scared of radiation. I find radiation a piece of cake. I tell my friends they can hang me upside down, chop me up and burn me, it's just the damn chemo I have a hard time with.

Love you every day. Love the person you are. Love what you have given me. What you have given us. And you are going to go on! Did you read the article in Newsweek? It really is hopeful.

Love always,
Diane

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

Any questions I can ask my radiation oncologist today for you, Diane? I was excited about targeted radiation after talking to the gyne-onc at Fox Chase and knowing that my own local gyne-onc had recommended it for me at this time. Apparently it shrinks tumor size down more reliably than trying 1 chemo after the next until you hit on one that works for you. I will be VERY happy to know that the radiation option is there for me if any of my malignant lymph nodes begin to press on nerves or arteries or my spine and start causing me problems. I have an appointment this afternoon with my radiation-onc to find out why he recommended against radiation for me 3 months ago and is only now bowing to pressure from the 2 gyne-oncs in considering it for me. I think he believes I need to get systemic treatment at this time, and that my involved nodes are in tricky locations (especially that para-aortic one located between my kidney and an aorta and near my spine.) At the time he voted against radiation for me, taxol was still working good for me. (Now, after 23 rounds of it, taxol no longer works for me). The Fox Chase gyne-onc mentioned IMRT, and perhaps even stereostatic radiation (that 'gammma knife' they use for eye, brain, and spine tumors). But a gyne-onc isn't a radiation-onc necessarily, so I want to hear his thinking. If I do this clinical trial, I have to put off the radiation until after I drop out of the Trial or I will be disqualified. If I start to feel any pain or numbness, I want to be all set up to jump into radiation. I think radiation on any given area is ALMOST a one-shot deal, but I remember when I talked with the team doing my pelvic radiation that they said they sometimes re-radiate the same area with different modulation on the IMRT. So I do have questions. & if you respond before I go, I'd be happy to take your questions along also!

On the extended carbo-taxol beyond the 6 typical rounds scheduled as initial protocol after surgery, I think if I would have had the bone marrow for it that my chemo-onc would have pushed for 2 more rounds. But I started having trouble with my blood counts after only 3 rounds and had to take extra time and blood transfusions to get the last 3 rounds of the schedule 6 rounds in me. So I think the 6 rounds is just a ballpark of what most people can tolerate before they jeopardize their bone marrow to a dangerous point. I had all 6 rounds BEFORE any radiation and was as aggressive as my body was able to endure. In fact my gyne-onc was unhappy that I had so much aggressive adjuvent radiation.

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

What about that new proton radiation? I believe you can use that even though you had full dose radiation. They just built a site here and I've read about it in our local newspaper. I do believe it is another option.

That's the only question I can think of. I pray for good timing.

You've done a good job researching this!

Love,
Diane

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

Sorry to hear about your reoccurance - the same thing happened to me. The cancer spread to my pelvis and lungs. That was 2 years after a complete hyster. Saw a few doctors - I actually decided not to have debulking surgery because I was afraid of having my colon removed. Then they decided that with surgery they would not be able to get it all anyway. I had carbo/taxol - and then radiation. Chemo was a breeze - radiation was difficult - HOWEVER - THEY ALL AGREE THAT IT WAS THE RADIATION THAT SLOWED THINGS SO MUCH - I had overall pelvic radiation - then 6 targeted to tumor. It was the targeted radiation that shrunk the tumor. The chemo reduced it - but did not have the success that radiation did.
However, on the down side - I'm still achy and stiff from the radiation. It's been over a year and although stiff - I still work full-time and do most of the activities I did pre-cancer.
It sounds like you have a solid medical team - I think you'll go through this mess again and come out smiling.
The best, Mia

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

my medical oncologist (who i think is probably biased in favor of chemo), as well as my gyn-onc, both want to "save" radiation for later, if i should need it. i think they're thinking ultimately about palliative treatment. medical oncologist said that by the time a tumor shows up, there are always microsopic cancer cells around it, and that radiation doesn't get to those, so a systemic approach (chemo) is preferred in general. i would want to learn, too, why your radiaton doctor specifically recommended against radiation for you 3 months ago.

it's all like a giant puzzle, that we all try to piece together with all the different information we get from each other's experience, research, etc. when some treatment works for one of us, we're all happy, even if that same treatment doesn't work for us--i'm choosing to believe something else will, and wei now have more known options because of each othere, probably more than most oncologists do......

good luck with your radiologist today, linda, i know we'll get back a full report.

sisterhood,
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sounds like your husband did the research and that it validates the radiation plan the doctors recommend; is that correct? is it targeted radiation? i can imagine you'd be nervous about radiation, but most women here have posted that it was not as difficult as chemo, tho' i know someone just posted the opposite. i guess it's what kind and how much you would be getting. so right about medicine not being exact, all the more reason for us to try to make the best possible decisions for ourselves given that, really, no body knows. which stupid nodes keep lighting up?? i'm glad, at least, you got those pet scans, even with the factor of false postives. at this point, my insurance is not willing to pay for pet scans, but i'm going to let my doctors fight for it before i join the fray.

i was lucky enough to be able to wait for social security to pay the full amount without deducting anything from my allotment; it sure does comlicate things to figure out how you can earn $1000 monthly for first year, and not more. geeze, these rules; still, glad you can collect the disability. (does that mean that after the first year you can earn more?)

in any case, mary ann, i, too, have confidence you are going to get through this phase, troublesome as it might be, and be back on your feet for a good, long time.

keep us posted, and don't lose heart--we're keeping the faith! i think once you know what's happening and when, and have a plan you feel is a good one, i think you'll feel a lot less anxious. it's the beforehand, the anticipation, that makes us most anxious i think.

sending the best to you, as always,
sisterhood,
maggie

howdybooth
Posts: 44
Joined: Aug 2009

Mary Ann - I'm sorry to hear your news. My sister does not have UPSC and since her cancer was Stage 2b, the doctors decided not to do chemo or radiation. But without the radiation/chemo, she had a recurrence on the vaginal cuff 4 months after surgery. She had 5 day treatments for 5 weeks, followed by brachy and the turmor went away. The doctors left her alone for about 6 weeks and performed another pet and she had a spot on her liver. After that was removed they started chemo. Right now she is 5 months NED - but the prognosis is that more then likely she will have other recurrences!

Hang in there........

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

Got an expedited appointment with rad-onc. He must be the best in my doc's eyes since I asked for a 2nd because I was not able to get into this one till the 22nd. But lo and behold I will see him on the 17th.

Thanks for all the info on radiation - I have a list of questions.

Diane, thanks for all the kudos. We will continue to march (kayak!!) through this together!!

Mia, you are giving me hope because I remember your post over a year ago. It's wonderful that you are working and enjoying life despite your side effects. You are an inspiration to me and very brave.

Maggie, fight for the PET - my insurance denied me too but I finally got it after appeals. If you are on medicare, there is a program that will approve PET scans. And I will check with SSA about earning more than $1000 after one year.

You guys are great. I'll keep you posted. Love, Mary Ann

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Mary Ann,

So sorry to hear of your recurrence.....I know you were and still are a trooper with the diet and walking. Only so much we can do, but know you'll get thru this as you always have done in the past.

I had chemo 6 round and 33 rounds of pelvic radiation....is this what you're having? I will say it was a bit rough, especially on my bowels and just had to eat very bland food and couldn't eat all the fruits and vegies I love!!!

Today being 1 year away from the treatments, the issues are almost over. Do have to watch some of the roughage, but not as bad as during treatments. Yes the radiation zooms in on the cancer area, which I had tumors in the uterus and one in pelvic node...that was it!

Hope you have much success with your oncologist appt and bring your list of questions....know you'll have quite a few.

Best to you and I'm throwing you lots and lots of POSITIVE VIBES.......

jan
xoxoxox

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

It made me so sad to read your post. You have worked so hard to be "healthy". It just does not make sense does it. Hope you get some of your questions answered about the treatment plan. You are a strong person. You will get through this, too. We are all here to help you through it. You remain in my prayers. In peace and caring.

I am going to a 3 day Master Gardener Conference. Then I am leaving for a cruise from New York to Canada, then going to Niagara Falls. So I will be gone for several weeks, but you will remain in my thoughts and prayers.

Hang in there and I hope you can do some of that meditation that calms you so well.

nempark
Posts: 683
Joined: Apr 2010

Because you are a fighter you will beat this one also. Big Hugs. June

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Mary Ann,

I hope you had some positive results from your radiologist today. I was sadden to hear about your recurrence, but I know you are a fighter. Please stay positive. I know everyone here feels the same.

Please know that I wish you the best. There are so many things I would like to say but I can never get the words out!

Sending ((((Hugs)))) your way.

Kathy

llight
Posts: 99
Joined: Feb 2010

Mary Ann,

I'm so sorry to read about your recurrence. You are an incredible fighter and I know will continue to fight hard. My thoughts and prayers are with you.

Best,
ll

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california_artist
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daisy366's picture
daisy366
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Joined: Mar 2009

I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

Anyway, Starting Sept 28 the plan is:
1) low dose Carboplatin weekly
2) 7 weeks (35 sessions) of IMRT

Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

So, I shall carry on - Love to all, Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it brought tears to my eyes. how great to have such a good doctor team now, who forecast success for you. sounds like a fairly rigorous, but eminently doable regimen; and maybe you can sing as well through this. count on it, we will all be singing on this end! i'm so happy for you, mary ann; well be thinking of you especially from the 28th, right around the corner.

don't forget to keep us posted.

hugs and sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

Sounds like you have a wonderful team, and I like that you mention that they are very accessible by phone and email.

It all sounds very encouraging.

Strength, healing and peace to you!

Hugs!

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Hi Mary Ann, Am glad you posted your plan. It sounds like it will be challenging but "do-able". Interesting how that word "do-able" takes on new meaning isn't it? However, for the Sister Warriors here, everything can be done, just some things are more taxing than other things!

I am SOOOO happy that you have found a radiation onc that you like, is personable and very qualified... That is a great find! I am impressed how accessible he is. I don't think many Drs. make themselves readily available via email.

Your Darth Vader mask sounds a bit confining? Hmmm...with Halloween coming up there may be a use for that after you complete your treatment!

I pray that you will not have to deal with a sore throat or other side effects.....Know that we are all there with you "virtually" on the 28th and through each of the following treatments.

VERY BIG HUGS, MARY ANN!!!

Keep us posted! Karen

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norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Just want you to know you are in my prayers. You are an inspiration.

Demodiva2's picture
Demodiva2
Posts: 1
Joined: Jun 2016

Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Oops I meant Kaleena

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

hey soup. I went to post a 'winky' eyed guy and I think it is waiting to be posted.  I posted now - so you are good. ;)

pinky104
Posts: 574
Joined: Feb 2013

The reason you don't recognize most of the others is because at least four, possibly five or more, have passed away.  Daisy366, lindaprocopio, jazzy1, and Ro10 are all gone.  I'm not sure about one other, but I think she's passed, too, as I remember the first name as one that someone else on here mentioned to me.  Lindaprocopio was, I believe, the first member of the uterine board.  It's sad that some of those who gave the most advice are no longer with us.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

pinky, sadly you are correct on us losing all of those ladies.  Someone sent me a PM berating me once for saying "they are no longer with us", when in fact, it was/is true.  I deleted that person's PM without replying.  When you are fortunate to be around for years, we mourn the ones we love, and certainly, these women were all part of our family.   

ConnieSW
Posts: 1553
Joined: Jun 2012

i definitely agree. I grieve for Helen and Debra Jo but I would hate not knowing. Three ladies on this thread other than the ones mentioned have also died. I remember them fondly and appreciate seeing their faces again when an old thread pops up. 

Soup52's picture
Soup52
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Joined: Jan 2016

That’s what I figured that the others have passed away, but I was hesitant to say it.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Demodiva2,

As Soup suggested, you might want to start a new thread.  This one is rather old and I am sure the ladies will respond.  

I know there are a few women who have also asked about getting/not getting the adjunct therapy, and I think the majority ended up getting it.  One particular women who chose not to get it has not posted in years.  I was diagnosed with UPSC, Stage 1A Grade 3 at 49.  I had both chemo and radiation and worked through it all.  Everyone has to make the decision for themselves and everyone responds differently to the therapy.   Unfortunately I cannot give you any insight in to natural therapy.  

As I belive Lou Ann says, "welcome to the club no one wants to be a member of".  It is a good group of women here and I am sure they will welcome you with open arms.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

This is the unfortunate reality of our disease. No way to sugar coat it nor should we. 

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