Stage 4 Uterine cancer

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)))

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.

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, 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.  

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 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. 

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. 

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

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!

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!

 

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.