Has anybody heard this: Ovarian vs UPSC

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

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 said:

I do believe they kinda did.

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

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. 

It happened to Me said:

I do believe they kinda did.

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

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.

Kaleena said:

Actually Ro I believe it was

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

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

It happened to Me said:

Thanks

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

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.

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.

molimoli said:

I have heard a comparison

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.

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 said:

Thank You ALL

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

 

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.