ROLL CALL - borrowing from our Ovarian sisters!

NoTimeForCancer said:

Boy - do we ALL understand!

Start with one step a time and remember to BREATHE.  If it is your style, I would recommend having someone with you when you go to your doctor appointments.  My BFF was with me and took lots of notes I couldn't so I could focus my attention on the doctor, you'd be surprised at what you don't remember when you get home.  Write down all your questions and don't be afraid to ask all of them.  Again, come here to ask us all any questions when you need to regarding your surgery, side effects, treatment, recovery, etc...

 

The best advice!!
I've done this with my appts... My brain leaves me and i'm all over the place. I can't remember what the Dr. has said to me. I took my bff once, and my boyfriend for the Cat scan. I'm thankful to have folks that want to go and support me. The diagnosis was hard... Don't really remember driving home.
I am ready to move forward, even though i don't know what that means.

Roll Call

Dx March 2012 at age 58

Location: Florida

No symptoms, At annual my Gyn recommended a sonogram to take a look at ovaries based on risk factors.  Sonogram revealed no issues with ovaries but found polyps and uterine thickening, resulting in a D&C.  The biopsy revealed Grade 3 adenocarcinoma with Clear Cell component.

April 2012 complete hysterectomy, cervix, ovaries, and tubes

Final pathology:  Stage 1 grade 3 with focal atypical complex hyperplasia but no evidence of residual adenocarcinoma.  Lymph nodes and pelvic washings were negative.

 No additional treatment was recommended.  I’m followed every 3 months at cancer center with pap and CA125.  So far so good and feeling blessed to get an early since I had no symptoms.

Trying to find my new normal

Stage IVb endometrial adenocarcinoma

48 years old

 

Hi all,

My story is a little complicated.

Back in mid 2011-early 2012 when I was 46-47, I started having VERY heavy periods.  Days when I couldn't leave the house.  Discussed problem with my Gyn, and he recommended uterine ablation.  I agreed.  As a pre-surgical test, he did a hysterosonogram with saline to inflate the uterine cavity so he could see my anatomy more clearly.  He saw a suspicious looking ribbon-like growth in the lower part of my uterus, took a biopsy, and two weeks later told me path report indicated I had hyperplasia with atypia.  Gyn referred me immediately to Onc/Gyn, who recommended complete hysterectomy with ovaries and tubes taken, as well.

Pre-surgical PET did show activity in my uterus and also three small hot spots in my lungs, less than 1 cm in size.  I wasn't told about the lungs -- only the pelvic activity -- and this was before I'd learn to get copies of everything.  

So, hyterectomy...frozen section during surgery confirmed at least stage I grade 1 endometrial adenocarcinoma, all lympth nodes negative.  Post-surgical pathology report indicated cancer had started to spread to upper part of cervix, so diagnosis of Stage II, grade 1 confirmed.  I had post-surgical radiation tx, 25 sessions of IMRT and 3 sessions of brachytherapy.  Was told I was "cured."  

Everyone seemed to forget about those hot spots in my lungs. Until...a 5-month post op PET scan...which showed the nodules had doubled in size and uptake.  One nodule was now large enough to biopsy.  My Onc/Gyn was apparently so sure of the metastasis before the biopsy, that he went ahead an ordered a port inserted on the same day as my needle biopsy...which confirmed metastasis and corrected my staging to IVb.  This was Oct 30, 2012.  I began carbo/taxol the next week.  Six sessions every three weeks.  Additionally, I started taking 200mg daily Megace.

I am lucky...I responded well to the chemo and/or Megace.  PET scan halfway through the process showed the nodules had stopped growing.  At the end of chemo, PET scan indicated the two smaller nodules had disappeared...the largest node had shrunk in size and had no uptake.  And, the rest of my body was clear.  

However, my Onc/Gyn wanted me to have a consult with a pulmonary oncologist/surgeon.  Even though there was no indication of cancer activity in my lungs, he recommended having a thorocotomy with wedge resection of the remaining nodule...and a look around the rest of the lung.  I had this surgery in April 2013. Post-op pathology report indicated there was some cancer activity in the nodule -- PET scans are only 80% accurate, I'm told -- but I had clean margins.  Pulmonologist recommends follow up chemo.  Gyn/Onc disagrees.  Advocates letting my body heal from surgery and chemo and watchful management.  Then, his practice goes out of business, and I change Gyn/Onc's.  

New Gyn/Onc recommends the same thing.  Let myself heal some, continue monitoring with PET, and reevaluate when necessary.  She also advocates doing a maintenance regimen of tamoxifen/Megace...on 20 mg tamoxifen twice daily for three weeks, then switching to 40 mg Megace twice daily for the next three weeks, then back to Tamoxifen, etc., etc.  I also take 1 mg coumadin to guard against blood clots common with use of these two drugs.  Apparently, this is a fairly new protocol that is showing good results for advanced stage estrogen-receptor-positive cancer like mine.  June 2013 PET was clear.  I'm given a cautious status of NED.  Onc/Gyn recommends waiting six months for the next scan.  I'll see her later this month and question her on waiting until December. I think I'd rather have one now.

I feel worn out and wary but glad to be here.  Other than fatigue, I'm in pretty good physical condition, aside from carrying around too much extra weight...I'm working on that...life long challenge.

Beth

 

roll call: September 2013

Age : 64

Location: New Jersey, Florida in winter

Diagnosed: September, 2010    UPSC stage 4B grade three - cancer in whole pelvic area including omentum ,

                wrapped around colon, and found in 39 lymph nodes. Optimal debulking at Sloan Kettering.

Treatment: Clinical trial at Sloan - Carboplatin, Ixabepilone and Avastin for 6 treatments ending February, 2011.

                 Continued  with avastin as maintenance every three weeks  till the present 

Status: still NED as of last week's catscan. CA125 is three (was only 53 at diagnosis)

Diet: now on paleo/ketogenic type of diet. Lost 40 lbs since diagnosis, feel great but avastin is now

        causing blood pressure issues.

         I was in disbelief when onc told me results of catscan last week. I was totally expecting a recurrance -after all,

         how long can I possibly expect NED to hang around with a diagnosis like mine? Following the events on this

         forum makes it difficult to be too optimistic . My doctor says - "Turn off the internet!"

         Good luck and good health to everyone.

                

NoTimeForCancer said:

I have to say this

You women really ROCK! 

I second
I agree.. ALL YOU LADIES ROCK!!

Hi, my name is Marie.

July 2013: Biopsy and D& C

August 27, 2013: DaVinci hysterectomy

Stage IIIc1 Endometrial Carcinoma

10/3/2013: first chemo

Blog: http://rebelcupcake.wordpress.com

I have been feeling okay so far. I was so nervous before the first infusion. I was so concerned that I would be barfing my brains out. My biggest problem has been achy bones. I am not used to it and it can be quite annoying. Not looking forward to my hair falling out soon

NoTimeForCancer said:

Welcome

Marie, I know we are all sorry you have had to find us, but know that you can ask anything here.  The first chemo is the worst and I remember those aches.  I promise you, it gets better.  I remember hating the thought of losing my hair, it was a definite "hurdle", and so I know a lot of us understand.  You are going to amaze yourself to find out the kind of inner strength you have.  

Wow!

I really needed to hear those words today! Thank you!

20creekfarm said:

Hi Marie

I had long, pretty dark hair like you before I was diagnosed.  I decided to get it cut fairly short before starting chemo, and then when it started coming out, I had it buzzed down to about a 1/2 inch.  Doing so was just easier on my scalp and my shower drain.  

When I lost my hair, I told myself it was a good sign that the chemo was doing what it was supposed to do.  

Let yourself experiment with wigs and hats and scarves.  You might also enjoy finding some new inexpensive costume jewelry, like big dangly earrings you might never have worn before.

Also, my hands ached horribly for a few days after my first chemo session.  But after spending a little time loosening them up by squeezing tennis balls, the pain went away and never came back.  I thought that was weird...but there are many shades of weird with this disease.  ;-)

Best of luck to you!

Wierd

You got that part right.  I am nearly 14 months post chemo and my left eyebrow has repeatedly thinned out and grown back.  What's that all about?  Anyway I am  NED after standard treatment (surgery, chemo, brachytherapy) for 1A UPSC.  At 67,  I feel good, maybe even better than before since I am making eating well (with occ lapses.  Sigh...), exercising, trying new interests a priority.  No matter what the future holds, I cherish this past year I've been given since my wake up call.  I take nothing for granted.  I always was pretty mellow but am now even more so.  Never sweat the small stuff.

Stage IV UPSC im 2012, NED in 2013

Hello,

Diagnosed Oct. 2012 with Serous Endometerial Adenocarcinoma (UPSC)

Surgery Nov 2012. Cancer - uterine tumor, tubes, ovaries, cervix, tumor on the bladder, some lymph nodes positive, including para aortic nodes that couldn't be removed.

Carbo/taxol chemo followed by external IMRT radiation in -2013.

CT Scan in April, 2013 - NED!!!

I am grateful for this discussion board

cheerful said:

Hello to everyone:

 

  I have been a member on this Board since April of 2011. I was diagnosed with UPSC Stage 1 (large polyp 5 centimenters) on February 23, 2011. Had hysterectomy on February 1, 2011.

 

  Started chemo in mid April of 2011 - and finished August 31, 2011 - so it was just 2 years as of today!  Started radiation had 3 rounds on Sept. 29, 2011 and finished radiation - October 14, 2011.

 

  Was very tired from chemo for a long time and took awhile to get my strength back. 

 

  Now doing much, much better - so far with NO evidence of disease as of June 26, 2013 from my latest Cat Scan so it is over 2 years from diagnosis.  I go back and see my oncologist in early October for a 6 month check-up.

 

 

 

roll call

Hi everyone,

I'm 54.  I had undifferentiated small cell uterine carcinoma 4 years and 4 months ago.  Completed chemo & radiation (external & internal), and surgery.  Had multpile transfusions because the treatment knocked out my blood counts.  My thyroid was also knocked out.  It all seems so long ago now!  I am doing fine (although I still need to lose weight).  My last C-125 was 7...I'm due for another C-125 in December.