Stage 4 Uterine cancer

Unknown

I knew I had stage 4 uterine cancer but did not know it was type B.  I looked up the stats and the 5 year survival rate is 15 percent.  That is really hard to accept.  I am looking for survivor stories.  I looked and found some but they go back to 2010 etc.  I feel very discouraged.  Also I am having a bit of trouble navigating this site.  Like how will I know there are replies to this, and I found something that said create forum topic.  I hope that is what I was supposed to do.  Is there a guide?  I am used to facebook, of course. LOL

 

TeddyandBears_Mom

gharlan66, First of all I

gharlan66, First of all I want to welcome you to our board. You will find loads of support, information and a willingness to share experiences. Second, I'm so sorry you had to find us! You will learn to navigate here pretty quickly.  There are many survivors of stage 4 uterine cancer and I'm sure some of our ladies will be along shortly to tell you about their journey.

The internet information is very outdated. It scares all of us and you will get much better information here. This board has a very calming effect on us. It is so much better to have someone to talk to that has been there, done that or is currently doing that!

Please come back and share where you are in the process. Ask any and all questions. Nothing is off limits. We will be here for you.

Love and Hugs,

Cindi

 

Nellasing

gharlan66 welcome

I also do not have the same cancer but did want to say hi and let you know you are not alone!  The one thing the ladies on this board taught me and remind everyone of is that you are a stastic of ONE- that old internet info just doesn't take into account your heart, your fight, your strength, your will and so much more!  You are stronger than you know and we are willing to link arms and walk along together.  I'm sure you'll hear from one of our amazing sisters soon. (((HUGS)))

derMaus

Let me add my voice to the

Let me add my voice to the others: Stage IV is pretty subjective, IMO, and there are people here who've been at that stage for a good long time, and people who were diagnosed at that stage but are NED now. I sometimes branch out to other ACS boards and can guarantee there are plenty of IV's with all kinds of cancer out there who are doing just fine. One example is ovarian cancer: I personally know two people who were stage IV *at diagnosis* more than 5 years ago. One of them was told by her oncologist that he views her as a long-term serious condition to be managed, rather than a 'stage' to be graphed. I like that perspective a lot. One other point: a good friend was diagnosed HIV positive in 1988, when it was essentially a death sentence. But he kept up his health, and was able to ride the successive waves of medical breakthroughs such that he's celebrating his 65th birthday this year. Please try to remember this when the dark times overtake you. You're in good company here, and will be for a long time. 

NoTimeForCancer

gharlan66, I couldn't agree

gharlan66, I couldn't agree more with what the ladies have already said.  I think we all understand how you feel discouraged, it is such a kick in the head to get this kind of news, but now you have to get ready to fight.  Learn everything you can, ask us anything you want - become your own advocate.  There are no instructions for this site but you figured it out.  Please come back and let us know what you need.

Kvdyson

gharlan66, as the other

gharlan66, as the other ladies have said, stay hopeful! You can end up with a stage 4 diagnosis even if they only find a few cells have spread. There are SO many new and wonderful treatments being discovered every day. Many of the ladies on this site are using cutting-edge treatments and having great success. Others (like me) are having success with the traditional (Western) treatments of surgery, chemo and radiation. Others have used more non-traditional treatments and have found them to work, too. There is no reason to think that your experience will be different.

Please try not to focus on the statistics you read online. Many of the people in those studies could have had other health issues that contributed to their deaths that are never reported. You are a statistic of one. Focus on you.

At this juncture, try to gather copies of all of your surgery and pathology reports. They may come in handy if you need to get a second or third opinion (like I did). Do some research and find out if there are cancer centers near you who specialize in your particular type of uterine cancer (there are many different types). Surround yourself with a medical team who has your best interest at heart and then trust them to do all they can to help ensure that you have a long and very happy life.

You can do this! And we'll be here to help in whatever way you need.

Wishing you peace and strength, Kim

 

SandyD

There is much hope!

Welcome to our board gharlan66! 

Not so sure stage is as much of an indicator as most think. In my case I was diagnosed as stage 1A however I have had a recurrence. On the other hand I see people on this board and others with stage IV who have been treated, have not had a recurrence, and are long term survivors!

Also keep in mind that more and more, especially with all of the advancements in cancer treatment, cancer is being treated more like a chronic disease than a short-term death sentence. This means that we can have a high quality of life and keep living our lives while at the same time receiving treatment. It also means that when one treatment stops working for us there are others available. And definitely, as Kim said, find the best cancer treatment center available to you and a treatment team experienced in treating your type of cancer. And do seek out second and third opinions when necessary. 

bocabird

Diagnosed with High Grade 3 Endometrial Adenocarcinoma

I had slight bleeding and stringy material about April 24 and went to my gyno 2 days later.  He did vaginal ultrasound and found a thickened area of the endometrial tissue and thought it could be a polyp.  I had May 30 a D and C and hysteroscope done and samples taken.  No polyp was found which made me suspicious of my staining.  My gyno called 2 days later with shocking news- 3 areas have high grade 3 endometrial carcinoma with part 3 near the cervix with foci suspicious for serous carcinoma.  Not good news especially for me who is 68 and very physically fit and never have had any illness!  I have appointment with the Gyno oncologist this Monday and will see what the course of action is.  I think probably a PET scan first?  After reading so much on the internet and my gyno telling me this is very aggresive I am so scared.  I a bleeding now with some fragments coming out but not heavy bleeding and feel fine otherwise- no cramps- just a little bloatedness.  Has anybody had similar reports?  Total hysterectomy for sure and probably radiation and or chemo?  I want to get this over with fast since I feel everyday this could be getting worse.

NoTimeForCancer

bocabird, I remember the

bocabird, I remember the different kind of bleeding after my D&C - hopefully they told you that - and it would last for a few days.  It is good you are working with a gynecologic oncologists - they are specialists in these cancers but I would recommend you take some time to read some of the posts and start you list of questions.  I would also recommend if possible to have someone with you who can take notes while you focus on the discussion with the doctor.  They have to understand that they are there to takes notes and act as a second set of ears.  There will be a lot coming at you and wrapping your head around it can be overwhelming - as is hearing you have a cancer.  

Grade 3 is defined as an aggressive cancer, but you are doing ok.  (I did joke with my gyn onc 'what are you doing next week?' when I first met with him - but I was serious too)  The almost standard form of treatment for these grade 3 cancers is chemo and radiation.  Some here have had the "sandwich" - 3 chemo, radiation (which may include brachytherapy - internal), 3 chemo and others have just had chemo first - it does depend on who you are getting treatment with and what your gyn onc.  

After my D&C I was scheduled for complete hysterectomy surgery date and all the prep that went with it - which was a CT.  Surgery will determine what stage your cancer is at, but PLEASE, try to take a breath.  I'm sorry I probably didn't help with your brain swimming - but you are not alone!  

We are here for you and you can ask the wonderful women here ANYTHING.  Take a breath.  

Hma4

Gharlan66 and bocabird

Gharlan this is a scary road we are on, but a mammmogram is a great idea in my opinion, I would rather know early if anything is wrong, rather than find out late.  I know we scare ourselves looking things up and sometimes reading these posts, but the support and understanding here is great. Bocabird i am a 3C2 adenocarcinoma 2 month survivor i finished my treatments in Dec 2016, but did not consider myself cancer free until my follow-up ct scan and labs In March 2017. I had a radical hysterectomy, chemo, radiation and brachytherapy. When my daughter couldnt make my appointments i usually called her and would put her on speaker so she could listen to the gyno-oncologist and ask questions, she asked around and had a list of questions she wanted answeres to. I also felt the sooner I started, the sooner it would be behind me, well now I have to do the follow-up visits, but I am  in a much better state of mind than this time last year! I still get nervious and scared with every new ache or pain, but i guess thats part of this journey- keep the faith, hugs to you both.

pinky104

Stage IVb Still Alive & Fighting UPSC after 7 years

I was diagnosed with stage IVb UPSC in late March of 2010.  My cancer was in my uterus (a large polyp), both ovaries, the omentum, and  even a little in or on the small intestine.  I had surgery and chemo with Carboplatin and Taxol, no radiation.

In 2012, I had incisional hernia surgery. In 2014, I felt abd. pain, like my hernia was back.  My GYN/onc ordered a CT scan, which showed a very small mass in my paracolic gutter.  He couldn't tell what it was and didn't think he could even find it to biopsy it, so he did repeat scans at 3 mos., 6 mos., and finally, at a year.  He decided at that point that it wasn't cancer, because cancer always grows and this hadn't grown.  If anything, it was slightly smaller.  He decided to stop doing scans.  Fast forward to this year.  I had a positive hemoccult test, which caused my PCP to order a colonoscopy.  There was nothing found by my gastroenterologist inside my colon, but he found something he'd never seen before (and he's close to my age, I'd guess).  A mass was on the outside of the ascending colon, pressing inwards, and the camera he had showed it.  It actually looked like a pair of testicles in the picture.  I had to have surgery within a week before I ended up with a bowel obstruction.  The cancer had wrapped itself right around the ascending colon, so I had to have a resection of that going up into my small intestine.  Then my small intestine was found to have grown into the mesh from my incisional hernia and gotten all tangled up in there, so I had to have another resection done taking out a chunk of small intestine.  Finally, my abdominal wall had to be replaced by a gastroenterologist who had been called in to assist.  Now I'm doing chemo with Carboplatin and Gemzar.  I've had most of the possible side effects of the Gemzar this week (I'm in my first round). I went on the Gemzar because it wasn't as likely to cause hair loss as the Taxol, but today, on day 17 of chemo, I found my brush full of hair.  I've had a lot of bad abdominal pain this week, weakness, fatigue, shaking, a day where I had about 20 BM's with about the last 5 ending in diarrhea, a little dizziness, insomnia, a stiff neck/headache, days where I can't think clearly, and I could go on and on.  It's been an awful week.  My hemoglobin went down to 8.7, hematocrit to 26.5, and platelets were down to 26,000 one day and up to 30,000 two days later (they're supposed to be at 142,000),  My renal function was fine and my white blood cells were at an acceptable level.  I go back for more testing and chemo on Wed.  I may end up with a transfusion very soon.  I was told that Gemzar causes blood abnormalities much sooner than other forms of chemo, often in the first round.  I did very well the first week, but just the opposite the second week.  It's going to be a very long 18 weeks of chemo. 

I had four ancestors that came over on the Mayflower, and I'm going to have to summon the old Pilgrim spirit deep within me to fight all these side effects!  But I'm still alive and kicking at 68 years old.  It's a much harder battle for me this time than last.  I don't know if it's because I'm 7 years older or if it's the difference between the Taxol and the Gemzar.  My GYN/onc had told me they're about equivalent.  I see that Gemzar is used for several other cancers, like pancreatic cancer and ovarian cancer, so I'm hoping it can kick butt so I don't have to go through this again.   

CheeseQueen57

Tough Cookies

There are some tough cookies on this board.  They are in inspiration to all of us. God bless you and keep you in the palm of his hand. 

pinky104

CheeseQueen57 said:

Tough Cookies

There are some tough cookies on this board.  They are in inspiration to all of us. God bless you and keep you in the palm of his hand. 

CheeseQueen57

Thanks, CheeseQueen57, for the comment.  My husband once called me stubborn, so I guess he'd agree with you.  When my mother went into a nursing home in her mid 80's, I was told that most people who live to ripe old ages are stubborn.  They have to be to get that far in life. 

Soup52

Welcome GHarlan! As many have

Welcome GHarlan! As many have said before you are a statistic of one. There are many new treatments that you will see on this board so many opportunities to kick this cancer. I am one year cancer free or NED as you will see many of us post. I was diagnosed 3 C with an agressive form and so far so good.i had hysterectom, internal and external radiation, and 6 rounds of carbo/taxol chemo. While the journey wasn't fun I had much support from family and friends. You can do this! We will all be here for you so keep us all posted.

Abbycat2

Gharlan66 and bocabird, you are not alone!

I was diagnosed with stage 3a Uterine Papilliary Serous Carcinoma- UPSC- which is always an aggressive, grade 3 cancer. I remember reading everything I could about it including research papers. Reading that I had only a 20% chance of survival after 5 years just about freaked me out of my skin! However, this statistic is misleading because the 80% who died died of ALL causes: old age, car accidents, heart disease, etc, including cancer. If you search here for an article I posted titled Research study on UPSC, I think you will feel encouraged.

bocabird, UPSC is more common among women who are within normal weight. I, too, have kept myself physically fit for 64 years, but I got cancer anyway. Keep yourself as fit as possible because good health and physical fitness has an impact on cancer recurrence and survival. I have remained cancer free now for 3.75 years. My gyn onc told me that he doesn't think my cancer will return. I hope he's right.

I suggest that you write all your questions on paper and bring that to your doctor's appointments. Bring someone with you. Get ALL reports for your records. Seek second or third opinions when needed. Remember all diseases have an acceptable standard of care. With uterine adenocarcinoma, this usually means a hysterectomy, chemo and maybe radiation treatment. Have a ca125 assay blood test now.  If you have surgery, I recommend that you get the operative report and more importantly, the pathology report.   It's the results of the path report that directs treatment.

Warm Wishes,

Cathy

 

txtrisha55

Welcome! Sorry you had to find us!

But glad you did. 

As some of the wonderful ladies on this site have said.  Slow down, take a breath.  Do not read so much of the stuff on the Internet.  It is old and misleading and terrifying.  Much information cannot be determined until after surgery is done and the pathologist can do testing on all the tissue.  Once they can do that a full pathology report will be done.  Make sure you ask for a copy of it.  

Make sue that you get a good oncologist gynecolgist Dr.  Some gyn drs would suggest they can do the original surgery but it is better to have the gyn onc dr do the surgery as they know what they are looking for and at and they can remove tissue that may look funny to them for testing.  Make sure to ask if they will remove some lymph nodes for testing.

The reason I say it is doable.  I was diagnosed in April 2011, with high grade uterine cancer that was determined to be stage 3C1 Carcinoma Sarcoma (aka MMMT).  The tumor was in my uterus and a coupld of microsopic cells in 1 lymph node.  I had a full abdonminal hystercectomy with everyting female removed along with the omentum (layer of fat tissue protecting your organs on your stomach)  and a dozen lymph nodes.  Nothing but the tumor and 1 node had cancer.  I had six rounds of carbo / Taxol chemo treatments and no radiation.  I am still here.  Will hit the six year mark in August this year.

The ladies on this site are wonderful.  They can support, answer questions, listen to rants and venting, offer guidance and give praryers.

My sister and my daughter supported me when I went through my journey.  It is helpful to have someone with you at all drs appointments they can write down what is said becuase you are not really focusing on what is being said sometimes after you hear the word cancer.   Praying for you to get through this one day at a time.  No one has an expiration date on them.  Be an advocate for your self.  Make a list of questions, keep asking those questions until the dr answers them.  If you do not like the answers, get a second opinon or even a third or fourth.  Do your own research.  Get copies of everything, ask what it means.

Good luck. trish

Feedthekitty

From symptoms to surgery

I'm stage 3c2 grade 3. It's been an active process sorting it out. End of Nov 2016 noted distinct symptoms. It was a weekend so I went to the ER. transvaginal ultrasound showed thickenew endometrium. End of Dec had an endometrial biopsy that pointed likely cancer. Due to insurance delays I didn't get a D&C until mid Feb 2017. Confirmed can er. That was followed by an MRI the end of Feb. That showed it was only in the pelvic area. Radical hysterectomy Mar 9th. Then 2 weeks after that the final pathology report. 4 weeks after that a PETscan. I just finished 3rd round of chemo so am only part way through treatment. Followup PETSCAN next week. Hoping treatment is working.

So...everyone's journey is different.  But I wasn't prepared for the number of tests and waiting needed before tge surgery. I'm learning patience. Lol

Fyi...having paclitaxel and carboplatin. With the prescribed anti nausea, anti anxiety, glutamine supplement and claritin, I have done quite well without any scary side effects. I also get accupuncture during my infusions to minimize neuropathy. My onc surgeon is big on integrative approach.  Wish I could have eliminate my fear of chemo before my first infusion. It was the unknown. 2nd and 3rd times were easier. Having friends and family to interact with during the process can really help for those days you are depressed or anxious. 

My best to you...and all of you brave ladies!

 

CheeseQueen57

Feedthekitty said:

From symptoms to surgery

I'm stage 3c2 grade 3. It's been an active process sorting it out. End of Nov 2016 noted distinct symptoms. It was a weekend so I went to the ER. transvaginal ultrasound showed thickenew endometrium. End of Dec had an endometrial biopsy that pointed likely cancer. Due to insurance delays I didn't get a D&C until mid Feb 2017. Confirmed can er. That was followed by an MRI the end of Feb. That showed it was only in the pelvic area. Radical hysterectomy Mar 9th. Then 2 weeks after that the final pathology report. 4 weeks after that a PETscan. I just finished 3rd round of chemo so am only part way through treatment. Followup PETSCAN next week. Hoping treatment is working.

So...everyone's journey is different.  But I wasn't prepared for the number of tests and waiting needed before tge surgery. I'm learning patience. Lol

Fyi...having paclitaxel and carboplatin. With the prescribed anti nausea, anti anxiety, glutamine supplement and claritin, I have done quite well without any scary side effects. I also get accupuncture during my infusions to minimize neuropathy. My onc surgeon is big on integrative approach.  Wish I could have eliminate my fear of chemo before my first infusion. It was the unknown. 2nd and 3rd times were easier. Having friends and family to interact with during the process can really help for those days you are depressed or anxious. 

My best to you...and all of you brave ladies!

 

Hi Kitty!

I'm the same stage as you. Completed chemo in August 2016, radiation in October 2016. Awaiting results of my lasted CT scan which was done this past Wednesday. Sounds like you're tolerating chemo well. Continued good luck to you. 

CheeseQueen57

Feedthekitty said:

From symptoms to surgery

I'm stage 3c2 grade 3. It's been an active process sorting it out. End of Nov 2016 noted distinct symptoms. It was a weekend so I went to the ER. transvaginal ultrasound showed thickenew endometrium. End of Dec had an endometrial biopsy that pointed likely cancer. Due to insurance delays I didn't get a D&C until mid Feb 2017. Confirmed can er. That was followed by an MRI the end of Feb. That showed it was only in the pelvic area. Radical hysterectomy Mar 9th. Then 2 weeks after that the final pathology report. 4 weeks after that a PETscan. I just finished 3rd round of chemo so am only part way through treatment. Followup PETSCAN next week. Hoping treatment is working.

So...everyone's journey is different.  But I wasn't prepared for the number of tests and waiting needed before tge surgery. I'm learning patience. Lol

Fyi...having paclitaxel and carboplatin. With the prescribed anti nausea, anti anxiety, glutamine supplement and claritin, I have done quite well without any scary side effects. I also get accupuncture during my infusions to minimize neuropathy. My onc surgeon is big on integrative approach.  Wish I could have eliminate my fear of chemo before my first infusion. It was the unknown. 2nd and 3rd times were easier. Having friends and family to interact with during the process can really help for those days you are depressed or anxious. 

My best to you...and all of you brave ladies!

 

Hi Kitty!

I'm the same stage as you. Completed chemo in August 2016, radiation in October 2016. Awaiting results of my lasted CT scan which was done this past Wednesday. Sounds like you're tolerating chemo well. Continued good luck to you. 

Soup52

Welcome Kitty:) I also had

Welcome Kitty:) I also had some time in between symptom, various tests, and surgery. While we have a good cancer center here, I do not live in a large city. It's pretty much how it goes here. I'm glad you are doing well with the chemo. I also had the hardest time with the first one. Family and friends are the best!