How about a roll call? Haven't heard from many of you in a while.

Abbycat2

ellen5121 said:

Newly diagnosed with UPSC

Good Morning:

I am newly diagnosed with UPSC (July 2014) and will have surgery in mid-August. I have been reading many of your supportive and informative posts and am so glad to know how many of us are out there. While trying to stay focused, organized and positive, this has been very hard....feeling close to the brink of freaking out, but this is not my normal m/o. I've always been the strong, caretaker in my family, so this diagnosis and what is inevitably ahead has turned everything upside down for me. The waiting has been hard and since I feel fine now, it's hard to imagine the changes that are ahead and all of the unknowns. I stilll have one week left at work and so much to do. It's not really helping to be told .... just take care of yourself now...Nothing I can do but wait and try to stay off the internet cancer web-sites which are anxiety producing, but informative and, for me, a bit of an internet-junkie, addictive. In terms of basic info. about me: 61 y.o.; in NYC (Brooklyn); so far, friends and family (no children) have been a source of strength, comfort and diversion; will be interested in learning more about complementary medicine/healthy life style after surgery/staging info and course of traditional treatment is known.

So appreciative to be joining this knowledgeable and supportive group.

 

Good morning, Ellen and glad you found us here

When I read your first post, I was reminded of how completely terrified I was when I first learned that I had uterine cancer (October, 2013) and then after my hysterectomy, UPSC stage 3A.  That was last November, 2013.   There were times when I wondered if I was going to lose my mind due to the constant terror I felt. Yes, I felt close to the brink of freaking out, as you mentioned.  It seemed that there wasn't a moment in a day when I was not thinking about my cancer.  I felt obsessed with trying to find out as much as I could about UPSC and any other aggressive uterine cancer. Whew!  I am exhausted just reading what I just wrote!  As bad as a cancer diagnosis is, it does get somewhat easier to live with it as time goes by.  I can now "forget" my cancer and enjoy life like I did before cancer.  I don't think about it all day long and I am not as interested in reading about UPSC. I am becoming more positive each day!  Some of the women here, like Ro10, Kaleena, Jazzy, DoubleWhammy and Trish to name just a few who have been posting for a long while, have been inspirations to me.  Their encouragement, positive attitude and love of life is infectious.  I know you didn't choose this, Ellen, but I believe you will be able to handle it with time.  I wish you the very best with your upcoming surgery. Please keep us posted.

Wish you the very best!

Cathy   

DebiR

ellen5121 said:

So appreciative of this site

I had a biopsy following PAP smear and after lots of initially optimistic (99% sure it's just a fibroid....) speclations, was told in early July that it is UPSC. Then went to gyn/onc/surgeon who confirmed dx. She indicated that robotic surgery is likely, but won't know definitively until pre-testing is conculded this week and then indicated though  unlikely small chance that even if robotic is planned, sometimes switch to regular surgery is necessary. Surgeon seems to be very experienced in robotics so hoping this is route for me. Thanks for your response, Ro10. Really needing encouragement....dreading the weeks ahead.

Ellen - me too!

I haven't really had a chance to post my story yet (and I will get around to it soon) but mine is very similar to yours except it took me from September 2013 when I got the results of an abnormal PAP to my diagnosis in April 2014 of UPSC (more about that later).  My biopsy pre-surgery also revealed the type it was.  I consider myself very fortunate in this regards as it meant I was automatically referred to a GYN ONC.  And it also meant they took ALL the extra precautions and I had the pelvic wash, lymph node removal etc. etc.  You have that same good fortune!

My surgery was 5/19 and was robotic.  Like you I was told they keep the option to do a full abdominal if necessary.  My uterus was very small so no problem at all with the robotic (it was the first thing I asked about when I woke up).  It was a matter of whether or not they could safely remove it intact vaginally.  I am stage 3A with microscopic cells found in both ovaries and the pelvic wash.

I took two weeks off work and then was ready to go back.  I do work from home so that made it a lot easier as I really didn’t have to be up and dressed for work every day.  I might have taken more time otherwise.

I started chemo on 7/16.  My second one is tomorrow.  I’m doing the standard 6 rounds of carbo/taxol. 

I love positive affirmations so I will leave everyone with one of my favorites. 

Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain!

Debi

Ro10

DebiR said:

Ellen - me too!

I haven't really had a chance to post my story yet (and I will get around to it soon) but mine is very similar to yours except it took me from September 2013 when I got the results of an abnormal PAP to my diagnosis in April 2014 of UPSC (more about that later).  My biopsy pre-surgery also revealed the type it was.  I consider myself very fortunate in this regards as it meant I was automatically referred to a GYN ONC.  And it also meant they took ALL the extra precautions and I had the pelvic wash, lymph node removal etc. etc.  You have that same good fortune!

My surgery was 5/19 and was robotic.  Like you I was told they keep the option to do a full abdominal if necessary.  My uterus was very small so no problem at all with the robotic (it was the first thing I asked about when I woke up).  It was a matter of whether or not they could safely remove it intact vaginally.  I am stage 3A with microscopic cells found in both ovaries and the pelvic wash.

I took two weeks off work and then was ready to go back.  I do work from home so that made it a lot easier as I really didn’t have to be up and dressed for work every day.  I might have taken more time otherwise.

I started chemo on 7/16.  My second one is tomorrow.  I’m doing the standard 6 rounds of carbo/taxol. 

I love positive affirmations so I will leave everyone with one of my favorites. 

Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain!

Debi

Debi welcome to the site

I am sorry you have to join us.  It is a journey none of us would freely chose,but it is doable.  Glad you have your first chemo completed.  I know my first chemo was scary.  It was fear of the unknown.  Not knowing what the chemo would do, and what side effects I would have.  I have to say that  it was not as bad as I had anticipated.

As a nurse I had given chemo in the hospital and seen patients experience terrible side effects.  The pre meds they give you are wonderful.  They give you medicines to take after chemo too.  Just remember to drink lots of fluids, and keep ahead of the constipation.  Apple juice worked great for me.

i guess by now you have lost your hair.  Baby oil to the scalp helps the itching.  They recommended a silk pillow case to help the tenderness when sleeping.  I guess it helped some.  

I hope your second chemo goes well.  Keep up the positive thoughts.  Comeback with any questions you may have.  In peace and caring.

mobmob

Abbycat2 said:

Good morning, Ellen and glad you found us here

When I read your first post, I was reminded of how completely terrified I was when I first learned that I had uterine cancer (October, 2013) and then after my hysterectomy, UPSC stage 3A.  That was last November, 2013.   There were times when I wondered if I was going to lose my mind due to the constant terror I felt. Yes, I felt close to the brink of freaking out, as you mentioned.  It seemed that there wasn't a moment in a day when I was not thinking about my cancer.  I felt obsessed with trying to find out as much as I could about UPSC and any other aggressive uterine cancer. Whew!  I am exhausted just reading what I just wrote!  As bad as a cancer diagnosis is, it does get somewhat easier to live with it as time goes by.  I can now "forget" my cancer and enjoy life like I did before cancer.  I don't think about it all day long and I am not as interested in reading about UPSC. I am becoming more positive each day!  Some of the women here, like Ro10, Kaleena, Jazzy, DoubleWhammy and Trish to name just a few who have been posting for a long while, have been inspirations to me.  Their encouragement, positive attitude and love of life is infectious.  I know you didn't choose this, Ellen, but I believe you will be able to handle it with time.  I wish you the very best with your upcoming surgery. Please keep us posted.

Wish you the very best!

Cathy   

CSN Roll Call
Mary, Oakland, CA, age 57. Diagnosed in Oct. 2010. At diagnosis I had stage 4 endometrioid adenocarcinoma. I don't remember hearing my precise grade. I remember when I asked about that the doctor said, "It's high grade."
I was diagnosed because I had an earache that wouldn't go away! The doctor was just about to send me off with a prescription for a broad spectrum of antibiotics, when I said. "Just one more thing. I've been having balance issues." The doctor sent me that moment for a CT scan of the head. The technicians who did the CT scan balked at doing the scan at first. "This does not follow protocol." They called my doctor to tell her they couldn't do the scan. Then, afterwards,after they did do the scan, they were clearly aghast and said, "Why exactly did your doctor decide to order this test?" (high-pitched voice)
Two brain metastases were found.
--Long story after that. I ultimately had eight brain metastases, all of which were treated with Cyberknife.
Six of the eight tumors vanished after Cyberknife treatments.
It is exceedingly rare for endometrial cancer to move to the brain only, but that is what happened in my case.

For the endometrial cancer, I had a hysterectomy and had taxol and carboplatin in three week intervals, six sessions, which seems like a common treatment. 
I'm currently having CT scans of the abdomen every six months and MRI of the head every three months.
My endometrial cancer screenings have come up with the occasional cloudy area on a scan which have been determined to not be a concern. I have two remaining brain mets which are not a problem as long as they don't start to cause seizures, severe dizziness, or confusion. The brain specialist says they might go away or they might never go away. (Cyberknife is a one time treatment usually. I have one tumor that was treated twice.)
So far so good.
My most difficult remaining symptom is leg pain, deemed neuropathy-related pain. I am one of those people with an invisible disability and people think I look fine and therefore must BE fine.
I walk every day and that is what confuses people. Walking is possible despite the leg pain. It is what my physical therapist prescribes and it just so happens walking is my favorite exercise. 
I believe people's source of strength is primarily within them. All the people who make up your circle of family and friends are great, but it's what's inside of you that brings you through. I don't know if it's possible to alter that. It's either there or it isn't. People kept telling me I was handling my situation "well" and I just would think I handled it based on who I am. There's no handling it "well" or "not well" (I believe if you meet someone not handling things well, maybe that's what they need to do. Who are we to judge?)
 --Everybody has to find their own way and meaning and whatever they do is never wrong.
Anyway, I'm glad to still be on the planet. All my doctors clearly thought I was not going to be around for very long. It really is true that you never know, you might be the person who beats the odds.

Bongo2

High Grade Stage IV Large Cell Neuroendocrine Carcinoma....

of the Uterus!

Extremely rare, aggressive, only a few cases in medical reports

Had hx of fibroids & then hemorrhaged post-menopausally age 64

Hysterectomy 6/1/14

Mets to soft tissues only (5 lumps in breast, 3 on torso) & abdomenal cavity 

3 cycles (9 treatments) of cisplatin/etoposide 

Mets started shrinking before starting chemo after 1 month on Rick Simpson cannabis oil protocol only (on medical cannabis card)

After 2 cycles of chemo all mets gone only spot at mother tumor in uterus which decreased 70%

Taking a break from chemo due to adverse side effects: vision problems, vertigo, vomiting,etc

Doing veggie & wheat grass drinks, lots of supplements, curcumin, chlorella, etc.

Baylor is now reviewing my case for recommendations.

 

I'm new here.  Anyone else with this one??!  What a great support forum.  Thanks for being here.

Cat

 

 

 

It happened to Me

Bongo2 said:

High Grade Stage IV Large Cell Neuroendocrine Carcinoma....

of the Uterus!

Extremely rare, aggressive, only a few cases in medical reports

Had hx of fibroids & then hemorrhaged post-menopausally age 64

Hysterectomy 6/1/14

Mets to soft tissues only (5 lumps in breast, 3 on torso) & abdomenal cavity 

3 cycles (9 treatments) of cisplatin/etoposide 

Mets started shrinking before starting chemo after 1 month on Rick Simpson cannabis oil protocol only (on medical cannabis card)

After 2 cycles of chemo all mets gone only spot at mother tumor in uterus which decreased 70%

Taking a break from chemo due to adverse side effects: vision problems, vertigo, vomiting,etc

Doing veggie & wheat grass drinks, lots of supplements, curcumin, chlorella, etc.

Baylor is now reviewing my case for recommendations.

 

I'm new here.  Anyone else with this one??!  What a great support forum.  Thanks for being here.

Cat

 

 

 

Welcome Cat

Sorry for meeting you under the cancer circumstances but glad you found us.  This is a great group to belong to and it's full of information.  I had never heard of the type of cancer that you have been diagnosed with.  I have a rare type called UPSC (Uterine papillary serous carcinoma) stage IIIA    It's also aggressive.  I do believe, however, UPSC is a little more common than when I first received the dx in June, 2013.    Hopefully, someone else will know about the type of cancer you have.   I wish you well.  Keep us posted and post anytime.  We are here for you. 

Jeanette

Abbycat2

mobmob said:

CSN Roll Call
Mary, Oakland, CA, age 57. Diagnosed in Oct. 2010. At diagnosis I had stage 4 endometrioid adenocarcinoma. I don't remember hearing my precise grade. I remember when I asked about that the doctor said, "It's high grade."
I was diagnosed because I had an earache that wouldn't go away! The doctor was just about to send me off with a prescription for a broad spectrum of antibiotics, when I said. "Just one more thing. I've been having balance issues." The doctor sent me that moment for a CT scan of the head. The technicians who did the CT scan balked at doing the scan at first. "This does not follow protocol." They called my doctor to tell her they couldn't do the scan. Then, afterwards,after they did do the scan, they were clearly aghast and said, "Why exactly did your doctor decide to order this test?" (high-pitched voice)
Two brain metastases were found.
--Long story after that. I ultimately had eight brain metastases, all of which were treated with Cyberknife.
Six of the eight tumors vanished after Cyberknife treatments.
It is exceedingly rare for endometrial cancer to move to the brain only, but that is what happened in my case.

For the endometrial cancer, I had a hysterectomy and had taxol and carboplatin in three week intervals, six sessions, which seems like a common treatment. 
I'm currently having CT scans of the abdomen every six months and MRI of the head every three months.
My endometrial cancer screenings have come up with the occasional cloudy area on a scan which have been determined to not be a concern. I have two remaining brain mets which are not a problem as long as they don't start to cause seizures, severe dizziness, or confusion. The brain specialist says they might go away or they might never go away. (Cyberknife is a one time treatment usually. I have one tumor that was treated twice.)
So far so good.
My most difficult remaining symptom is leg pain, deemed neuropathy-related pain. I am one of those people with an invisible disability and people think I look fine and therefore must BE fine.
I walk every day and that is what confuses people. Walking is possible despite the leg pain. It is what my physical therapist prescribes and it just so happens walking is my favorite exercise. 
I believe people's source of strength is primarily within them. All the people who make up your circle of family and friends are great, but it's what's inside of you that brings you through. I don't know if it's possible to alter that. It's either there or it isn't. People kept telling me I was handling my situation "well" and I just would think I handled it based on who I am. There's no handling it "well" or "not well" (I believe if you meet someone not handling things well, maybe that's what they need to do. Who are we to judge?)
 --Everybody has to find their own way and meaning and whatever they do is never wrong.
Anyway, I'm glad to still be on the planet. All my doctors clearly thought I was not going to be around for very long. It really is true that you never know, you might be the person who beats the odds.

Mobmob, your story is amazing!

Mary, thank you for sharing your story, as it is truly incredible.  I agree that our source of strength is primarily within us. I once worked on a rehab unit in a general hospital.  This was a rehab unit that treated patients with a multi-discipline team including docs, RNs, physical, occupational and speech therapists, social workers and psychologists. These patients had fractured hips, strokes, COPD, traumatic brain injuries , cancer, etc..  What continually amazed me was the remarkable progress some of the most disabled and sick patients made. They had some things in common: A clear sense of purpose, an inner strength and a strong desire to recover.  Many patients with far less serious conditions did not do so well. Perhaps here's a lesson for all of us fighters here.

Warm Wishes,

Cathy

Abbycat2

Bongo2 said:

High Grade Stage IV Large Cell Neuroendocrine Carcinoma....

of the Uterus!

Extremely rare, aggressive, only a few cases in medical reports

Had hx of fibroids & then hemorrhaged post-menopausally age 64

Hysterectomy 6/1/14

Mets to soft tissues only (5 lumps in breast, 3 on torso) & abdomenal cavity 

3 cycles (9 treatments) of cisplatin/etoposide 

Mets started shrinking before starting chemo after 1 month on Rick Simpson cannabis oil protocol only (on medical cannabis card)

After 2 cycles of chemo all mets gone only spot at mother tumor in uterus which decreased 70%

Taking a break from chemo due to adverse side effects: vision problems, vertigo, vomiting,etc

Doing veggie & wheat grass drinks, lots of supplements, curcumin, chlorella, etc.

Baylor is now reviewing my case for recommendations.

 

I'm new here.  Anyone else with this one??!  What a great support forum.  Thanks for being here.

Cat

 

 

 

Hi, Cat

Hi, Cat, and welcome to our forum . Like Jeanette, I have never heard of the type of uterine cancer you were diagnosed with. It sounds like it is very rare.  I also have UPSC stage IIIA and completed treatment last March.  I think you will find that the csn members of this uterine board as well as those members of the ovarian board and the all other gynecological cancer board are an awesome, positive and inspiring group of wonderful ladies. Please keep in touch and let us know how you are doing.

Kind Wishes,

Cathy

P.S : I love your name. My mother use to call me Cats.