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Has anybody heard this: Ovarian vs UPSC

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I belong to this group and two other Facebook groups for Uterine Cancer.  I think it was on one of the Facebook posts that someone said that "they" (not sure who 'they' are) are beginning to think that UPSC is really a form of Ovarian cancer.  Has anyone heard this?  I'm just curious to see if any of you have ever heard it.  If you have, is there any documentation or a link that I can read about it?

Thanks,

Jeanette

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

When I was diagnosed with UPSC in 2009 my gyn/ono told me UPSC was very much like ovarian in how it acts.  He said that some of the drugs used for Ovarian cancer are not approved for UPSC by insurance companies.  At that time Doxil was one of the drugs.   It has since been approved for UPSC.  PET scans are another thing that insurance companies do not always approve for UPSC.  I do not have any documentation for this, just what the do tor told me.   It will be interesting to hear what others know.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hi Jeannette:

I was diagnosed with Endometrial Adenocarcinoma.  But on my early charts it indicated Ovarian Cancer.   I still have a lot of the records that say that.  The cancer was found in my uterus, cervix and my left ovary and I believe they indicated Ovarian because the treatment was basically the same.   However, insurance companies are less apt to approve certain drugs, scans and tests for endometrial than if it indicates ovarian. In fact, my physican at that time said that even though I have endometrial adenocarcinoma, he was treating it as ovarian.  Although this may have been just my particular case since they had to rule out that it was not MMMT.

I don't know if this helps you or not.

Kathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

As always, Ro did such a beautiful job! 

I remember attending the Foundation for National Women's Cancers program last year, and we submitted questions for the gynecological oncologists, and the one I submitted, and was read, asked if women with UPSC should be looking at the treatments that are taking place with ovarian cancer since it mimics it so much?  

(THAT was an incredible day!  Those women in that room are well read, knowledgeable, and demand from their doctors, so I think the gyn/onc's were VERY impressed with us all.)

Now, I will say, we never really got a good answer on to my question, but you know we got them thinking. I think there were some mumblings about they look to the various treatments used for similar cancers, blah, blah, blah.  

We are a smart bunch of women! 

Alexandra's picture
Alexandra
Posts: 1309
Joined: Jul 2012

What does CSN need 4 separate discussion boards for? Lets eliminate Uterine, Ovarian, Peritoneal and Other Gyno cancer boards and all unite within a consolidated "Lady Parts" or "Below-the-Garter-Belt" board.   

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I think some of the first members could probably address that.  I'm glad they don't combine it.  I just want to see Uterine cancer stuff and if I'm interested in Ovarian, I would go to that discussion board.  I was in a facebook group for "below the belt" cancers and it got way too big and I was to overwhelmed to stay there.  I wouldn't want this discussion board to be combined.

I had just heard the original post of mine and was wondering if anyone else had heard it.

Jeanette

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

She was posting under the Gyn Cancer board.  She wanted information specifically for her type of cancer.  There were 4 total with UPSC.  She got CSN to open a uterine discussion board.  When I joined in 2009' I was the 10 th person to post with UPSC.   I found it very helpful to find out the treatment  those with my type of Cancer were receiving.  Kind of a reinforcement that I was getting the best treatment.

I know Linda posted on the ovarian board, too.  I read the ovarian board, but have rarely posted on it.  There are many types of gyn Cancer.  I hope people newly diagnosed can find our posts helpful as they start their journeys.  I too think that combining all the " below the garter belt" cancers would be very overwhelming.

It will be intering to see what others think. 

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Actually Ro I believe it was Linda who requested a sepate board for uterine.   I think I remember her saying in one of her posts that she requested csn start another board because the threads were getting way too long and at that time it took awhile for posts to load.  

ok. I just checked and Linda made a post on February 4 2009 (page 103) on the ovarian board about the starting of the uterine site and she also mentions about how UPSC and ovarian act the same

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

My doctor told me that clear cell endometrial cancer acts like ovarian cancer and I believe I have read that a couple of times online, too.

 

Susan

Alexandra's picture
Alexandra
Posts: 1309
Joined: Jul 2012

Sorry guys, I joined CSN in 2012 and didn't know about the history of the boards separation. Peritoneal board is virtually deserted. There are only a few regulars on the Other Gyno board (cervical, vaginal, vulvar). And if god forbid someone walks in with fallopian tube cancer, MMMT or uterine leiomyosarcoma, how would they even choose? But whatever works for the majority is fine.

Jeanette, I quit 2 Facebook closed ovarian cancer groups for almost the same reason; hundreds of women were reporting every bowel movement, posting daily pictures of their hair growing and everyone else was hitting the "Like" button, so every 30 seconds I would get a notification. Life is too short.

Speaking of UPSC being treated as ovarian, there is an article in 2009 Medscape and an article in 2010 Compass explaining the similarities and differences of UPSC vs. Endometrial vs. Ovarian. Another, older link is here. There also were several discussions on Inspire and of course the giant CSN thread, started by Linda P.

It has been suggested that UPSC tumors more closel resemble ovarian cancers than endometrial cancers. UPSC spreads to peritoneal surfaces, much like ovarian cancer, and thus the depth of tumor invasion is not a reliable indicator of whether UPSC has metastasized. In fact, many UPSCs manifest as a polyp-like structure—a tumor on the end of a stalk—with no apparent invasion into endometrial tissue. The high rates of intra-abdominal disease spread and intra-abdominal failures reported support this concept and have led to the use of ovarian cancer-based chemotherapy regimens as treatment in women with advanced UPSC. As more effective chemotherapeutic agents have been identified in endometrial cancer, combination regimens have demonstrated improved responses, and, at least in populations with advanced disease, chemotherapy (e.g., doxorubicin, cisplatin and cyclophosphamide) has shown superiority to radiation alone in a randomized Phase III study (GOG report number 122). Chemotherapy, either alone or in combination with RT, has been evaluated in the management of advanced-staged endometrial cancer. As UPSC is a rare tumor subtype, it is often grouped with more common endometrial tumor subtypes (i.e., endometrioid adenocarcinoma) in prospective treatment studies. However, studies suggest that UPSC patients tend to fare worse and may exhibit more heterogeneity of response to chemotherapy than their counterparts with less-aggressive subtypes. Therefore, there is a need to study UPSC as its own clinical entity.

Translation: Basically, there are so few UPSC cases, that for research and development purposes they had to be lumped either with epithelian ovarian or with uterine cancer, when they are in fact neither.

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

I read an artical that said UPSC was not even classed as it's own cancer until 1986..  My doctor explanined it to me as UPSC being " missedplaced" ovarian cancer with a nasty, agressive, streak!  Now they are coming up with the talc, baby powder, and Shower To Shower powder directly causing ovarian cancer.  I defie anyone to show  me a baby girl here in the hot, humid, South that DIDN"T get her bottom powered many times a day.! Jeezus, do we blame out Mothers now?! LOL!  And the Shower to Shower was THE thing to use "down there" when I was a teen in the 60's!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

I agree that some of the other boards are practically deserted and those women are as desperate as I was and no one answers them.  Where do they go for answers?  We all know there is crazy stuff out there on the web and this has been the best source, at least for me, that I have found. 

By the numbers, I thought there were more uterine cancer cases than the others HOWEVER there are different grades, the "typical garden variety types" and the "aggressive" ones.  My heart goes out to the women with ovarian cancer as it is usually found late and always aggressive.  "Other" which includes cervical, is often talked about the FAULT of the woman because they say it is because we HAVE sex.  Well that is just ridiculous!  As if women are to BLAME!  It makes me mad!! 

Maybe we need to check in our sisters on the other boards.  We jump between the ovarian and uterine quite a bit, but maybe we can check in on the "other" board.  We may not be able to speak to their type of cancer but the sympathic ear is what we all need. 

Alexandra - THANK YOU for all the things you find and post!!!  You are always educating us with things I would never find!

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I just wondered if anyone else had heard of that.  Doesn't sound like it.   Thank you for your views.  I hadn't heard of that.  I'm thankful for you ladies and your posts.

For whatever reason, I'm not in a good place.  It's been 9 months post chemo. and I feel like I have the grumbles and I'm so much more sensitive and get my feeling hurt really easy.  It feels like no matter what I say, someone (the way I feel right now) basically says I'm wrong.  It's like I'm talking another language or not making myself clear anymore.  I already have trouble getting out what I want to say and words don't come to mind very quickly anyway.  I had a doctor's appointment on monday for my shoulder but ended up spilling on My doctor who is such a good listener.  He said that chemo. changes chemicals in the brain and situational depression can happen.  Am I going through a depression or am I not grieving over my cancer?  I never really had any problem through the whole process and have been very upbeat through surgery and chemo. and it just seems like I can't get back there.  I was beginning to have more good days and I was getting stronger and had 1 really good week about 4 or 5 or 6 weeks ago and WHAM I haven't had a really good day since.  I don't get it.  I don't know if I'm dwelling on this stupid cancer stuff too much or if I'm just thinking I should be further ahead with this whole thing of emotions, strength, endurance.   Right now, and I really hate to say this, but I'd almost be relieved if I did have a recurrence.  That's crazy.  I don't want it anymore, I want my life back, not my old life because I've learned so much through this experience but I want to go, do and be like I used to be.    It's like I want to growl at everyone.   

Help ladies, I feel like I'm going crazy.

Jeanette

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

Jeanette, there is no magic number of months or years to get over any event in our lives, so please try not to be too hard on yourself. 

I absolutely can see where chemo alters the brain chemicals, heck, I can remember chemo brain clearly and I still think there are days the connections are gone.Maybe you can think of something that really makes you happy and just do that for yourself.  Some fresh flowers?  A new CD of music?  A facial?  Just like treatment this is all a process, it is one day at a time. 

You are not going crazy.  It is ok. 

Alexandra's picture
Alexandra
Posts: 1309
Joined: Jul 2012

I very well undestand where you are now emotionally. You're experiencing a kind of PTSD. You're not going crazy, well no crazier than the rest of us. Sometimes time heals it, some people need psychotherapy, religious or spiritual guidance, writing a journal, anti-depressants, support groups, a distraction, whatever works. I doubt anyone gets their old life back. But there is definitely acceptance and life after cancer.

What you wrote about being almost relieved to have a recurrence struck a cord with me.

After I had finished first-line chemo, 9 months in remission were the hardest. Surgical menopause and chemo brain kicked in at the same time and almost overnight I became someone I didn't like: fat, unattractive, tired, forgetful and grumpy. I hated every minute of my job. I was ruining my family relationships, spending like a drunk sailor and engaging in stupid high-risk behavior just to make myself feel a little better. I was obsessed with inevitable cancer recurrence, death statistics and grim end-of-life stories, the darker the better. In the lowest point I spent countless nights sourcing illegal barbiturates off the internet to be ready when things get worse.

9 months later another shoe dropped and cancer recurred. Recurred ovarian cancer is terminal and possibility of "cure" was off the table. There was no more uncertainty and I could suddenly breathe a sigh of relief. I more or less gained back control of my life. I immediately quit my job, went on permanent disability, decided against any more chemo and channeled my energy into getting into a clinical trial. It's been a year since my first recurrence and I can proudly say: today mentally and emotionally I am a rock. Don't get me wrong, I am still fat and tired and I have cancer, but it does not bother me anymore and I no longer think about it every waking moment. I have no anxiety, no anger, no fear and no depression. I do things that make me happy and don't apologize for being lazy or selfish. Whatever crap life throws my way, I know I can take it. Life finally makes sense again. Cool

 

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

Jeanette...what Alexandra said!!!  I haven't had a return of cancer, but the wait for the other shoe to drop was driving me crazy!  I actually found my self GROWLING like a mad dog, literaly like I was Demon possessed!  Scared the Hell out of me!  I finally had to stop what was normal for me to do , quit trying to make since   out of all the statistics, the "whys". friends dropping me, family, well just about all of them I have told them to go to hell.  So I live quitely , taking care of my mother, I have the dog and the cat, I go to bed when I want and get up when I want and dare anyone to tell me what I should do.  Feel soooo much better!  It's called "Living  YOUR Life...your way".  Might not be the "Golden Years" I'd planned, but right now, I am content.  You will be too.  I am over 5 YEARS out from DX...it's taken this long.  Give yourself a break...no one else will!  Best Debra

molimoli
Posts: 514
Joined: Aug 2014

Jeanette , Sorry you are feeling this way, KEEP GOD IN THE VESSEL  AND HE WILL SMILE AT THE STORM  AND PADDLE WHEN YOU ARE WORN.[ My late mothers advice to me]

 

Although I struggle with the reality of accepting that promise, the thought gives me temporary comfort when I need it.

AWK
Posts: 364
Joined: Mar 2013

My doctors are of the school that Ovarian PSC and UPSC are the same cancer just located in different parts of the body.  They have consulted with City of Hope, UCLA, Sloan Kettering and MD Anderson plus NCI and all agree - the treatment protocols being followed exactly mirrors that of Ovarian PSC.  It is interesting because all of the insurance forms are checked for Ovarian indicating Uterine PSC for the approvals for treatment.  I know this is unusual but found others on Inspire (Ovarian Cancer Support site) whose doctors did the exact same thing.  What my team is focused on is the type of cancer first, location of origin second.  The other thing they've done is a full family history that had them focus on my father's particular type of brain cancer as well as taking my mother's triple negative breast cancer into consideration.  It is really fascinating to me and certainly a new way of thinking. 

What you are describing emotionally is simliar to what I hear from my Chemosabes post treatment and NED.  I only had a three month window of that and am back in the fight again (whole other issue); between chemo brain, people telling them how lucky they are and trying to live in the new normal which isn't normal - that is a lot going on.  Everything has changed and everyone around you thinks it is the same as before.  There are groups out there for post treatment that might help or certainly talk to your doctors.  Even with mets and recurrence I feel I have to define this new phase since outwardly I look the same (except for my whacky chemo hair), work and am in the old routines.  inwardly I feel totally different.  So I decided to do something for me, outside of all of this and am taking up riding again.  i haven't really ridden a horse since I was a teenager - used to ride alot.  I am also getting up earlier and walking my dog to a place where I can see the whole San Fernando Valley as the sun comes up.  Very peaceful.  This stuff allows me to breathe.  And wierdly enough I felt like I couldn't ever just exhale for months.  Stay Strong.  You can do this.  And do it your way!  Hugs.

flyerette65
Posts: 65
Joined: Oct 2014

Hi all again!

Like Jeanette, I too have been in a bad place.  I went through surgery and chemo and my friends said I showed everyone how to deal with cancer with my upbeat mood.  Well my mood went from upbeat to being a witch.  I met someone right after I was finished with chemo and married him, now we have parted ways.  He claims most of it is my fault but it takes to to ruin a marriage.  Plus my 93 year old mother, who had a bowel blockage last year which was positive for lobular carcinoma from her left breast cancer of 11 years ago, lived with us, and we had no opportunity for any kind of spontenaiety.  She absolutely drives me crazy sometimes I cannot have any privacy unless I leave the house and I do, a lot!  I do Zumba 2 times a week, Pilates 1 x a week and I got out to lunch with lady friends at least 2 times a week. Anyway, like all the rest I'm 3 1/2 years out from my diagnosis and I'm waiting for the recurrence to hit.  Like some have said, it would almost be a relief because I know it's going to happen at some point.  Does this sound pessimistic? I like to say I'm being a realist. Oh well, go through cancer, chemo, loose your hair, feel sick all the time, have chemo brain and see how much fun it is.  I also had to take care of mom who had broken her hip 18 days after my hysterectomy.  I had to do chemo and take care of her.  After chemo it would have been nice to have someone fix me a bowl of soup.  I had to be the "soup fixer".  Don't get me wrong I had friends drive me to chemo, doc appointments, clean the house etc.  It was just that I couldn't take care of just me and just lay around. And I have a brother who lives 2 hours away who wouldn't help at all. Oh well.  I guess I'm having a pity party tonight!

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Welcome to the group.  After talking to my PCP and my reg. ob/gyn, I decided that I needed some help with meds.  My ob/gyn put me back on my effexor that I was on for hot flashes.  I went off of it after a year and even though I still got hot flashes, they weren't that bad.  However, the depression started to get pretty bad.  Being back on the effexor has been a great help.  I am pretty much back to my old self except with a different inside.

I'm so sorry that you didn't get the proper care after your hysterectomy and chemo..  I ended up living w/mom and dad and they took care of me.  I think we all go through bad times and sometimes we need meds just to get us through.  Other times, it's how we react to adversity.

I hope you don't get too down in the dumps.  This is a great group to provide encouragement and support and great suggestions.

Look for the good in things.  I always (even when I was in a bad way) looked for something to be thankful for.  That helps.

Take care Flyerette,  Write often and vent when you need to.

Jeanette

molimoli
Posts: 514
Joined: Aug 2014

Hello everyone,  I was told by my oncologist that UPSC  mimics ovarian cancer in 99 %of its characteristics, but they are not one and the same.[ if you know what I mean by that]

 

my best wishes to all for the return of good health.

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

Jeanette,

You are not going crazy!  I think what Alexandra said about a kind of Post-Traumatic Stress Disorder makes a lot of sense to me. I hadn't thought about it that way, but why not?  When Hurricanes Frances and then Jeanne damaged my Florida home in 2004, I think I later experienced PTSD. At the same time, I had to have all the plumbing in my home replaced as part of a nation-wide law suit. As horrible as that experience was, cancer has been much harder for me to cope with emotionally.  Be gentle with yourself, Jeanette.  Try not to let people bother you.  Feelings are neither right or wrong-they just are-and you have a right to your feelings.  I can remember as a kid my mother telling me that I shouldn't feel a certain way; I now know how wrong she was to discount my feelings.  I think waiting for the other shoe to drop-i.e., a cancer recurrence-is normal in our situations. It is a tough and terrible reality that we must face each and every day.  Every ache and pain I experience makes me wonder, is that cancer? I think you are a normal woman dealing with an abnormal situation.  You are not just trying to cope with your own health situation, but also with the loss of an aunt and friend, and now you have another aunt who is ill.  All these stressors take a toll on us.  Whatever nurtures you is what you really need right now.  For me, it is a walk on the beach and watching the ocean do its thing, reading with one of my cats on my lap, spending time with loved ones and friends, and swimming. 

A Warm Hug to You,

Cathy    

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Thanks for the encouragement.  I'm SO glad that I am on this board with you ladies.  So comforting to hear from women "who've been there".  It's also comforting to know that I am normal and not alone.   I had a physical therapy session set today because I needed to know if my shoulder problem is chemo. related or a rotator cuff tear.  Fortunately, the physical therapist thinks it's an impingment and definitely not torn.  If there is a tear, it's very small.  So, we are going to strengthen the rotator cuff muscles.  Anyway, my regular ob/gyn is in the same building, I decided to go see if she happened to be available.  Lo and behold, she was.  Not a coincedence.  Anyway, saw her, started to cry, she gave me a hug and we talked.  She also told me that it is like PTSD because of what I went through.  She also said that I was also going through menopause.  Went from having hormones to having NONE all in one day.  She said I was normal in the circumstances I am in.  So, after talking to her, she said that she could prescribe the effexor again and see what happens and we can up the dose if it doesn't work.  So, that's what I am doing.  Maybe one part of my emotional roller coaster will level out.  Thanks ladies.  I needed reassurance that I was normal.

Jeanette

 

pinky104
Posts: 574
Joined: Feb 2013

I can totally relate to how you've been feeling.  I just want to let you know that I had shoulder impingement surgery (after going through physical therapy that didn't work on that side) and that surgery was a piece of cake for me compared to my cancer surgery--almost no pain at all.  In fact, I felt so good that I was feeling guilty for taking 3 days off of work after the surgery.  Later, I had PT that did work on the other side when that got sore. 

I've been waiting for (and expecting) a recurrence of my cancer for several years, and a tiny mass was found after I was four years out from surgery for UPSC.  I had pain on the left side, and I worried that I might have cancer there.  I had a CT scan and the mass was found on the opposite side.  I was stage IVb originally, so I guess I've been lucky to be NED for so long.  I'm waiting for the thing to grow big enough for the surgeon to be able to find it when he goes in there (at his suggestion).

Just keep paying attention to your body and check things out when you have repetitive symptoms.  That's all you can do.  You'll always be wondering what's going on inside of you.  That's normal, especially after cancer.  I was lucky enough to be 10 years out from menopause when I was diagnosed, so I didn't have the double whammy you had.  I got the brain drain from menopause and maybe it got a little worse from chemo.  I still have it bad some days.  The more tired I am, the worse it gets.  One day last week, I was on the phone with someone and when I went to give them my phone number, I couldn't remember it.  I'm 66 now, so I guess I'm allowed to have my senior moments!

Keep hanging in there and feel free to vent on this site whenever it gets to bad.  Somebody else will always have been in the same boat with you at one time or another.

 

 

Maggie_mac
Posts: 32
Joined: Mar 2012

My post surgical pathology report states, "The carcinoma in this case involves multiple organs and sites and associated with lower grade tumor compoments in both the endometrium and bilateral fallopian tubes.  It's academic debatable whether this case is arising from the endometrium, fallopian tube or ovary or from two separate synchronized tumors.  For current clinical management, we consider the tumor as an endometrial primary."  This statement was taken directly from my surgical pathology report at the Hospital of the University of Pennsylvania [HUP].  They couldn't tell for sure so they just had to decide what to call it.  Sometimes my oncologist calls it UPSC and sometimes ovarian cancer.  What they do know is that with this cancer there is a serous component, a papillary component, and it was all retrieved from all the organs harvested.

I guess the point I want to make is that medicine is still almost as much art as it is science.  Sometimes even under a microscope the most knowledgable scientists can't give us a definitive answer.  I'm just thankful they've figured out that UPSC responds better to the treatment used to fight ovarian cancer than it has to the type I uterine cancer.  Let's just hope and pray they find someting to kill the little bas***** before they kill us! 

I hope I didn't offend anyone.  Bless you all.

p.s. has anyone found the "Spell check" on this site?

Maggie

AWK
Posts: 364
Joined: Mar 2013

Always good to hear from others what their docs are saying and doing!  Stay strong!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

No worries, I don't think you have offended anyone on the board.  I posed the question to gyn onc who are the leaders in the industry if women with UPSC should be looking at the treatments for ovarian cancer for guidance?  They kind of thought they are different, and while they are, I suspect it gave them a second to think about that. 

 

pinky104
Posts: 574
Joined: Feb 2013

My cancer was first thought to be ovarian cancer, but my gyn/onc met with a tumor board and they decided it originated in the uterus and spread to both ovaries, the omentum, and the small intestine.  I was surprised they didn't find anything in the tubes between the ovaries and the uterus. I'm not quite sure how they made their decision.  Perhaps there was a difference in appearance between the cancer sites where one looked more fully developed than the other.  It certainly isn't an exact science.

  

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

When I was diagnosed with UPSC, my gyno/oncologist, who specializes in ovarian cancer, told me that UPSC is the same CELL type as ovarian cancer and it should be treated as such. 

She's very well known here in Houston, and used to work at MDAnderson.....she has her own private practice in the med center. My second opinion was at MDA and the doctors there told me they agreed with her treatment plan, which was 6 cycles of carbo/taxol spaced 3 weeks apart. That seems to be standard treatment for this cancer. She told me that she would NEVER recommend watchful waiting only for UPSC. 

I was diagnosed in 2011 and so far so good.  I think the bottom line is that this is a very sneaky and aggressive cancer, and must be treated aggressively, no matter what the stage. There's still a lot to learn about it, but unfortunately, because of it's relative rareness, more studies are conducted on ovarian cancer than on UPSC. Hopefully those studies will help those of us with this type of cancer. 

artist49
Posts: 87
Joined: Oct 2011

 over time I have made many comments about ovarian cancer treatment and

outcomes to my oncologist  at sloan kettering. he always responds the same

way - "but that"s not what you have." he very clearly does not consider it the

same disease.

flyerette65
Posts: 65
Joined: Oct 2014

Hello all!

When I was first diagnosed my doctor told me that UPSC acts a lot like ovarian cancer in that it is extremely aggressive and metastisizes early.  He told me that he thought we had caught mine "early enough" but what scares me is that the abdominal wash was positive for "free floating" cancer cells that had all ready broken off from the primary tumor.  I am almost 3 1/2 years from my diagnosis and I still get concerned when it's time for those 6 month check-ups.  Plus, I have been having some new symptoms.  I feel bloated and nauseous a lot.  Sometimes so much that I have to take Zofran.  Does anyone else have these issues?

 

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

Hi, flyerette65,

What stage UPSC did you have?  I was diagnosed with stage IIIA UPSC a year ago and when I had my hysterectomy the doctor found that I had a positive pelvic wash.  I think a woman can have stage 1 or 2 UPSC and still have a positive pelvic wash, but I am not certain of this.  Perhaps other women here can address that.  Have you talked to your doctor about your nausea and bloating?  My doctor told me that any unusual symptoms that last for two weeks or longer should be evaluated.  Hopefully your symptoms have nothing to do with cancer.  From what I have read,  the chance of a recurrence really starts to drop after two years and it continues to drop as time goes on.

I wish you continued NED,

Cathy

 

pinky104
Posts: 574
Joined: Feb 2013

When I was getting my results a week or so after my surgery four years and almost 7 months ago, my gyn/onc told me he had originally thought my cancer was ovarian cancer.  However, he ran my case by a tumor board at the hospital, and the consensus came back that it had started in my uterus. 

A few days ago, my sister went to see a different oncologist at the recommendation of her family doctor.  The family doctor had seen in my sister's records that my mother had breast cancer twice (two different spots in the same breast), and my mother's mother had breast cancer that was bilateral.  The family physician rcommended that my sister see an oncologist to test for the breast cancer gene and see if she should have her breasts removed as a preventative measure. When she went, she told this person that I'd had UPSC which had mets to both ovaries, the omentum, and the small intestine.  The nurse practitioner said my cancer threw a monkey wrench into the whole story. She thought my cancer had probably been misdiagnosed.  Apparently, ovarian cancer goes hand in hand with breast cancer caused by the breast cancer gene defect, but UPSC does not share this pattern.  When I go back for a recheck of my latest mass, I think I'll ask my gyn/onc how the tumor board decides where the  cancer starts.  I wonder if there's a difference in the size or quantity of cancer cells, or if they can tell which ones are more mature somehow. It'll be interesting to find out.     

AWK
Posts: 364
Joined: Mar 2013

While I am not intimately familiar with the details the common things I have read on it include history of uterine, colon, breast cancers.  And it crosses male and female on the colon.  Worth checking out.  I have been tested for it and a variety of other things lately via genome testing.  I was told I "hit" on 20 possible defects out of thirty.  Awaiting a meeting with a genetic counselor at UCLA.

AWK
Posts: 364
Joined: Mar 2013

If you can check out the segment online it is about genomic testing and this particular physician's view that type of cancer is the driver and not necessarily the location of the cancer.  My team follows that school of thought.  The common denominator is that my doctors here, along with the physician profiled - are all from UCLA.  although my broader team includes doctors from MDAnderson, NIH/NCI, Sloan Kettering and now Dana Farber has been added to the list of consultanting physicians.  Super interesting!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

I saw the clip at the beginning of the show and there was nothing that was going to keep me from seeing that piece!  Please GOD, let him be on the right path!!!

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