ROLL CALL - borrowing from our Ovarian sisters!

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member

    NoTimeForCancer... THANK
    NoTimeForCancer... THANK YOU!!
    Very glad for a place to share with others who understand.
    I'm only a bit over two weeks after my diagnosis...
    I'm mentally all over the place.

    Thank you again

    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...

     

  • tattooedtxgirl
    tattooedtxgirl Member Posts: 61

    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.
  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member

    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.

    My BFF started a note book

    It kept all of our notes in one place.  I would take it with me to work so when the doctors office called I would note what they said and then it would go with us to the dr appts and treatments.  When it came time for chemo we noted HOW I reacted and what we found worked (pushing drugs in the IV slowly was a HUGE discovery) and the wonderful chemo nurses were always willing to listen.  It made all the subsequent treatments better.  I wrote down all the names of the chemo nurses who helped me in my treatment and bought them all a nice bar of soap from Crabtree and Evelyn and tied a ribbon with their name on it.  (Wasn't cheap but they made my chemo tolerable and they are so wonderful!) 

    One step at a time, I know that is hard, but we are here.  I wish I had taken the RX for something to calm me down.  My friend from work who went through breast cancer surgery and treatment before me told me to take it if offered or to ask for it. 

    There are, what I called, "HURDLES".  Tough times I had to make it over, but I did.  You will too, you will have your doubts, but you are going to surprise yourself. 

  • cared1027
    cared1027 Member Posts: 8
    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.

  • akm52
    akm52 Member Posts: 4
    Hi People

    It's good to read all your brief health bios. Such variety in the details but it is really one story in a way.

    I was diagnosed stage 4B uterine cancer Feb. 2010.  Got a hysterectomy, radiation and chemo. Surgeon and his team told me it was very very likely it would come back, within 3 years.

    OK. Right? You learn to live with that. So, 3 1/2 years later, CA125 very low, no sign of cancer with checks every 3 months. I go in tomorrow for another exam and it has almost become routine (but not quite).

    Aside from the medical interventions, I really think my changed diet has something to do with my good fortune so far. Lots of cruciferous vegetables. No meat or dairy. Not much sugar. Trying to create a landscape inside that is not friendly to cancer cells. My energy is back. I feel really good. Today.

    Wishing you all wellness.

  • 20creekfarm
    20creekfarm Member Posts: 4
    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

     

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    Diagnosed in 2005 - from Pennsylvania

    Went for a hysterectomy due to severe endometriosis  - prior to hysterectomy I had a laparoscopy which showed severe scarring; also had a internal ultrasound - which just showed a deep ovary and a tilted uterus - also had a colonoscopy which only showed some diverticulitis.   Was put on Lupron for six (6) months prior to surgery.

    So at age 45 - get my hysterectomy in September 2005 - pathology comes back that they found cancer in my left ovary and uterus.   Therefore had to have a another "staging" surgery - so 4 weeks later in October of 2005 had staging (which at that time they found no more) - Staged - Grade 2, Stage iiia endometrial adenocarcinoma.  However, becasue they weren't sure if it was MMM (which they ruled out) but could not find the origin, I was treated as ovarian.

    Treatment:   was to be Taxol/Carboplatin - but had an allergic reaction to Taxol - changed to Gemzar - treated for six months Gemzar/Carboplatin -- treatment completed in May 2005

    Radiation:   Due to my severe scarring, ruled out pelvic radiation - only had 3 HDR bracytherapy radiation in August of 2006.

    RECURRENCE - After my original onc retired, new doctor indicated I had a recurrence and wanted to start chemo right away and said that I would end up with a permanent colostomy. - Not taking that as truth since this nbew doctor never really examined me, I sought out other physicians.  Went out of state and three hours away.   Confirmed biopsy result.   Had surgery February 2010 - took out mass (which ended up negative) and several lymph nodes - a lymph node had microscopic cells - However, did not do any type of treatment - just a wait and see approach.

    I go every six months for check-ups since then.   That doctor moved to Texas so I just go another new doctor.

    I am now 53 years old.

    SINCE DIAGNOSIS:   I have gone to California wine country, 4 cruises, celebrated all of my sons (3) graduations from high school; my oldest son just graduated from college; celebrated my 25 wedding anniversary, and am planning a trip to Italy. plus many many other fantastic events

  • artist49
    artist49 Member Posts: 87
    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
    NoTimeForCancer Member Posts: 2,999 Member
    artist49 said:

    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.

                    

    I have to say this

    You women really ROCK! 

  • tattooedtxgirl
    tattooedtxgirl Member Posts: 61

    I have to say this

    You women really ROCK! 

    I second
    I agree.. ALL YOU LADIES ROCK!!
  • frodolass
    frodolass Member Posts: 32
    sunflash said:

    Hello fellow warriors,I was

    Hello fellow warriors,

    I was diagnosed June 17 2011 stage 1a UPSC. Fortunately this was confined to a small polyp......less than 1/2 centimeter.

    Chemo was the standard Taxol/Carboplatin, 6 treatments delivered 3 weeks apart.

    I'm a teacher and worked through treatment, but took  5 days off for first 3 treatments and a full week for the rest. My sister was my sub!

    Feeling very well. My next checkup will be early November which will mark my 2 years post treatment. Still going for checkups every 3 months.No side effects at all from treatment. I exercise and eat healthy, which was the case before cancer.

    I had a prior cancer diagnosis in 2007 unrelated to this cancer. My wonderful doctor caught this early as I was still being seen by her every 4 months.

    Blessings to all of you here!!

     

    Working through treatment

    I'm a teacher too and am worried about getting back to work. I haven't yet been cleared to go back to work, it's only 4 weeks since my hysterectomy, but I'm hoping I'll be able to work during chemo. I never considered taking 5 days off. That may actually work for me. I've got a lot of donated sick leave, so it shouldn't be a problem in that department. Thanks for your post!

  • Rosestar570
    Rosestar570 Member Posts: 10

    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
    NoTimeForCancer Member Posts: 2,999 Member

    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 :(

    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.  

  • Rosestar570
    Rosestar570 Member Posts: 10

    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
    20creekfarm Member Posts: 4

    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 :(

    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!

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member

    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.

  • txtrisha55
    txtrisha55 Member Posts: 693

    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 :(

    Welcome Marie, Glad you found us.

    It is tough but it is doable.  I was stage 3C1 with carcinoma sarcoma back in April 2011.  I am two years out and still clear of cancer.  Just had another 3 month checkup yesterday. For me personally I cut my hair short before chemo and when it started fall out, about 15 days after the first chemo, I got an electric razor and shaved my head.  Boy, was my scalp white, I looked like I had bleached my hair like the Suzanne Powers did on her exercise tapes.  It looked really funny.  I then shaved the stumble off and tried wearing hats and scarves.  I never tried a wig.  I am in Texas and that summer almost every day was over 100 degrees.  I ended up ditching everything and just went bald.  For me it was easier and I discovered it was very freeing.  No more worried about hats, wigs, or scarves or hair falling out.  Yes I was like Mr. Clean.  The biggest thing going out in public was I got a lot of children looking at me but adults not so much.  I did go out and buy lots of jewelry and wore it and still do.  I worked throughout receiving my chemo except for those days that I was just too tired or hurt too much.  It usually was days 3-5 that I took off but the rest of the time I worked.  It is doable.  My biggest plus was a finding something positive about it and keeping a positive attitude.  I am more of a half full glass than a half empty one anyway so it was easy to do.  I did have some bad days but I usually jumped out of them really quickly.  Keep positive and know that all the ladies on this site are with you and I am praying for a good outcome for you. trish

  • SUNGRANNY
    SUNGRANNY Member Posts: 81
    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

  • I am a new survivor

    My name is Krissy

    I was diagnosed July 11th, 2013 after a follow up biopsy for hyperplagia

    On July 18th I had a open stomach complete hysterectomy due to my enlarged uterus. the pathology report came back that it was only stage 1a. It didnt spread at all.

    I guess I am pretty lucky cause I didnt need chemo or radiation. I have less then 5% chance of reaccurance. I know I am only a couple months into this but I feel so lucky and blessed that it was found early. In some ways I am sad that I will never be able to be pregnant again. I did loose a child 19 years ago due to heart problems and him being premie. I know I will get through this it will take time. I have a wonderful family that is supporting me and very understanding. I also have friends that are there for me also. Some days its very hard and some days I am doing really good.

    I healed very quickly. Now I just have a scar that goes down my belly. I am now without pain and tenderness in my stomach. My furbabies are able to be on my belly without me shoving them off because it hurts. BTW I have 4 furbabies. 1 dog and 3 cats. my smallest cat cleopatra has been the best treatment since i got home. Every night she lays on my belly as i sleep. when i got home from the hospital she would not leave me for nothing no matter how many times i pushed her off she would come right back and try and make it better. after about a week i gave up and let her do what she wanted. for a 4.6 pound cat she is very strong willed. she knows when i am sad and hurting. she just curls up on me and gives me that unconditional love that they tend to do. My dog also has been a big help. when i take my walkds he walks with me. He lays by me all the time no matter what. sometimes he steals my pillow and sometimes he just curls up next to my side. but i am greatful every day for them being around me. Sometimes my oldest and biggest cat will lay one me if he knows I am feeling really down. He thinks he is a heating pad and lays on where i hurt to make me feel better. gotta love them.

    I spent my first birthday cancer free last month. Now i am looking forward to my first holidays cancer free as well. 

  • survivingsu
    survivingsu Member Posts: 134
    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.