dpecky's Journey with Endometrial (Uterine) Cancer

Survivor: Endometrial (Uterine) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Stage III

  1. 1
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Diagnosed

    Oh No

    I had a d&c and a hysterscopy in Nov 2011. Initial biopsy was benign, but the surgery indicated that I needed to have a hysterectomy because the lining of the uterus was abnormally thick...the adventure begins

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  2. 2
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    Since the initial biopsies indicated that the abnormal lining was benign, I was schedule to have a lap hysterectomy. The surgeon explained that they would also do staging and removal of lymph nodes if they suspected there would be cancer. My surgery was scheduled for 12.22.11. It began as a lap procedure and evolved into a radical abdominal hysterectomy to remove a 10 pound tumor. Later that evening the assisting surgeon came to visit me and informed me that they suspected cancer; the next day my surgeon stated that preliminary pathology indicated low grade cancer. On 1.2.12, my post-op visit delivered the news that I had a stage 3b endometrial cancer. My oncologist told me it was completely treatable because my tumor had not affected my lymphatic system, and barely penetrated the uterine wall. It had, however, grown out through the cervix and into the vagina. He was very positive that he had removed all of the tumor. Next step, radiate the XXX out it...

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Clinical Trial

    The day of my 1st post op, my doctor hooked me up with a clinical trial - after reading the materials and considering my options, I decided to go for it. So, after all the pre-selection tests, I was randomized into the study's radiation arm. The protocol is cisplatin on day's 1 and 29, with external radiation beginning on day 1 and continuing for 5 weeks at 5x a week. then, 2 treatments of internal radiation, followed by carboplatin/Taxol once every 21 days for 4 treatments. Then, I am allowed to get back to normal life.

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  4. 4
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    External radiation

    Radiation

    Radiation. Well isn't this fun! I've made it through the first week. It is relatively painless except for the cost of gas. The therapists are great. Starting tomorrow I have treatments at 7 am, so I can get back to working normally, so I'll be leaving at 5:30 to get there. Yay!! At least I'll get to see the sunrise. No real side effects yet.

    Painless Experience: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Cisplatin - yuck! Day 1 and day 29 of treatment. Treatment itself was painless, the side effects when the steroids wore off were hellish.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Nausea/Vomiting

    Side Effects

    Chemo with Cisplatin on Day 1 (Monday) was fine, thankful I won't have to do it again until day 29.. Day 2, I noticed changes in smell that made me queasy but it was manageable, and some bloating. Day 3 (Wednesday) I started to get sicker than I have ever been in my life - vomiting, diarrhea, bloating, fatigue, sweats, chills. It finally eased up a little on day 5, able to eat on day 6, and today, day 7, feeling relatively normal - that is to say, I can eat somewhat normally, but thoughts of. or the sight of certain foods makes me want to be sick. I have to have whatever food doesn't turn my stomach immediately or I may not be able to stomach the thought of it if I have to wait. Yesterday, it was homefries. Today chai and an english muffin. I am just glad that I only have to have cisplatin one more time in this trial.

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  7. 7
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    40% done external radiation

    Celebration

    I am already done 40% of my radiation treatments...whoo hoo...three more weeks to go!!! So far no real side effects, except for being tired from getting up at 4:30 am to make the hour drive to treatment, and then the hour back to get to work. But it has been a good week!!!

    1 Comment
  8. 8
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 5 years ago
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    Other

    Side Effects

    Radiation burns...OUCH! I am 80% done my external radiation treatment, but the pain and itch of radiation burns just started this past week. It drives me crazy to walk...and while lotions like Aquaphor and Eucerin Calming Creme helped at first, now the only thing that can help temporarily is Cortisone 10. All I want to do is lie on my side all day to keep to minimize the friction. But I am am in a much better place than a lot of other people in my situation, so my discomfort is bearable.

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  9. 9
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Finished treatment

    Celebration

    Finished radiation, both external radiation, and brachytherapy. YAY!!! No treatments scheduled for 2 weeks...then my next round of chemo - carboplatin and taxol. Half way through my treatments ... last chemo is June 4!

    1 Comment
  10. 10
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Started the Taxol/Carboplatin round of chemoI and was aware of the side effects after chemo but didn't learn of the scary side effects that could happen during treatment until I had the iv started with the saline. Fortunately I didn't have any bad reactions to either drug. Felt pretty good the next two days and went to work, until I went back to get the neulasta shot. Taxol made me very achy. Zofran quieted the nausea very well but the tiredness, shakiness, and weakness kept my home Thursday and Friday, and in bed until Easter Sunday.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  11. 11
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    I had the first Neulasta shot on Wednesday after chemo. Felt pretty go afterward, until about 10pm, when the bone pain started. Got so bad I had to call for pain medication Thursday morning, and could only get Tylenol 3 since that's all the can be called in. Anything stronger needed to be a paper prescription. Didn't make it to work Thursday, and had Friday off. Stayed in bed until Sunday when I finally felt strong enough to go next door for a real meal. Pain stuck around, and I ended up back in bed 3 hours later. At least now I know what to expect next time and that I will need a prescription before I get the shot.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  12. 12
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Pain

    Side Effects

    Neulasta gave me ridiculous bone pain. It started in my calves, and forearms, and hips. I took tylenol first, then my last percocet, and it felt better. I called the next morning for pain meds, and got tylenol 3. It helped only slightly but at least it was better than nothing. I managed pretty well until 4 am, the Monday after Easter, when I had such brutal pulsing chest pain it woke me up and I had my son take me to the hospital. I was initially going to go the Cancer Institute when I get my treatment, but it is about an hour away, and after 5 minutes in the car, I made my son take me to the local er, because the pain was so intense and starting to scare me. They ended up finding nothing wrong with my heart after an EKG, cat scan, chest xray, blood work, and kept me overnight in the cardiac unit for observation. The pain subsided, and I was home the next day by noon, with only minimal pain, but complete exhaustion. I didn't make it back to work until thursday, and was really shaky.

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  13. 13
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Chemo brain

    Side Effects

    Since the only real thing I own in my life is my expensive college education that I will be paying for well in to my "golden years" this is probably the most terrifying side effect for me right now...feeling foggy, spelling and grammar errors, forgetting what I was about to say, and being unable to access words, thoughts and ideas. I find myself questioning myself all the time about what I was about to do, or where I was headed, or what I was in the middle of saying.

    1 Comment
  14. 14
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    Hair loss (alopecia)

    Side Effects

    Hair began to fall out on 4.16.12. Today, 4.23.12, it's virtually gone, and my shiny scalp is quite visible. Doesn't really bother me visually, but the feel of scalp is odd. I've shaved portions of my head in the past, but there was always a slight stubble. This time it is very smooth, and won't be back for at least 2 months. Skipping the wig, just going to rock the bald head, and wear a lot of hats. Animal hats. Because wearing animal hats is going to make the world a better place - who can be sad or angry when talking to a grown woman sporting a zebra hat?

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  15. 15
    • dpecky
    • Experience with Endometrial (Uterine) C...
    almost 5 years ago
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    News at Dr. Appointment

    Celebration

    There is no new tumor growth, no seriously debilitating consequences from radiation or chemo; don't have to have a return visit with the radiation oncologist for 6 months, and my gyno-oncologist said he is impressed with how well I am getting through treatment and expects to be able to say I've successfully completed treatment after the next two chemo appointments. YAY!!!

    1 Comment
  16. 16
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The Taxol and Carboplatin kick my behind. Every treatment makes me more tired and sick than the last. That said, this all could have been much much much more debilitating and I believe that a positive attitude has made a big difference. The treatment goes off seamlessly, the second day doesn't seem as bad as it could be, but after that neulasta shot on Wednesday, I'm in a percocet/zofran induced coma (NOT A REAL COMA - just what it feels like) for a few days. This results in constipation, which is probably the worst side effect for me...I hate feeling all bloated. It passes in a week, but it is a painful week. This treatment was the 3rd of 4...on May 14th, the day after Mother's Day. I was advised to start to taking a multivitamin because my red blood counts are low. I'm out of breath and exhausted a lot...I'm missing a lot more work...usually only getting into the office for about 7-10 between treatments...thank goodness there are only 2 more neulasta shots and one more chemo!

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  17. 17
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    I hate the neulasta shot. I have to take percocet round the clock for the pain for the first 5 days after the shot, then I wean myself off to tylenol. It starts in my shins, then my thighs, then my upper arms, and finally, the worst is in my chest, like some one hammering a thick spike in from front to back. I do a lot of sleeping until the pain eases up.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  18. 18
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Pain

    Side Effects

    neulasta gives me the worst pain ever. In my shins, thighs, upper arms and solar plexus. I take percocet around the clock for 5-6 days after the shot. Taking it in advance of the pain seems to help the most, so I keep on a strict time table to keep it from getting the upper hand.

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  19. 19
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    My blood counts were low. The Neulasta is working for the white cell counts. I am instructed to take a multi vitamin for my low red counts (although I personally would like a blood transfusion, because the last one made me feel awesome.) I am taking a whole food vitamin, rather than a chemically engineered one. It also has a lot of b vitamins, which is helping with energy slightly and mood. I just want to start feeling normal again!

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  20. 20
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Taxol and Carboplatin - June 4, 2012. Last recommended treatment. It seemed to last forever. I forgot to take my Decadron before treatment so I was a little more queasy than usual, but still no vomiting. Close though, since someone made a bit of a mess in the restroom and failed to throughly clean it up and I walked into it. Many more trips to the restroom this visit, and much more thirsty. Magnesium added to IV this time. No Dr. during this treatment. I see the Dr. on 6.25.12, and have CAT scans and chest xrays to check for any new tumor growth. The Dr. is expecting no evidence of disease!

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  21. 21
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 4 years ago
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    Finished treatment

    Celebration

    LAST CHEMO INFUSION!!! Got to ring the end of treatment bell at Penn State Hershey Medical Center with my son, his friends, and an old childhood friend, Joanne who also works as a Nurse Practitioner in the Oncology Department. I WAS ALMOST IN TEARS, but so excited to ring that bell! Now just one more neulasta shot, another couple weeks of feeling like XXX, and some scans to make sure nothing is left behind, and I'm DONE WITH THIS NONSENSE!

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  22. 22
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 3 years ago
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    One year cancer free!

    Milestones

    I just had my one year post-treatment oncology visit. As of today, I am one year cancer free! Next month, I get my scans.but I am celebrating one full year without a recurrence!

    1 Comment
  23. 23
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 3 years ago
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    Two years post surgery

    Milestones

    It's two years since my complete hysterectomy. Treatment ended in June 2012, so as of today, I'm 17 months disease free. And it's going to stay that way as far as I'm concerned.

    1 Comment
  24. 24
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 2 years ago
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    Cancer is back/Recurred

    Oh No

    Had a 4th procedure to drain the cyst in my "pouch of Douglas" on Dec 10 2014. This time it was a surgical laparoscopy and an overnight procedure. The surgical intern was not very good at avoiding my questions about if they found a malignancy or not.

    1 Comment
  25. 25
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 2 years ago
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    Recurrence!

    Decision Point

    December 22nd, 2014 following a procedure to drain an ever growing and extremely painful cyst in my "pouch of Douglas", pathology shows that there are two tumors now growing on the cyst, and I need to decide, with the help of my oncologist, which course of treatment to follow. Even my oncologist is baffled with why the cancer came back and how it emerged so suddenly (within two months).

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  26. 26
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 2 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Jan 6, 2015. Chemo starts - 6 cycles of Taxol and Cisplatin. Hurray!

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  27. 27
    • dpecky
    • Experience with Endometrial (Uterine) C...
    about 2 years ago
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    Hair loss (alopecia)

    Side Effects

    wow, one cycle of chemo and my hair fell out this time - all except my eyebrows and underarms.

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  28. 28
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 1 year ago
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    Hospitalization

    Other Care

    Recurrent malignant cystic mass is crushing my right ureter and stopping urination. Trip to the ER ended with a nephrostemy in my right kidney, and sent home with a foley catheter.

    2 Comments
  29. 29
    • dpecky
    • Experience with Endometrial (Uterine) C...
    over 1 year ago
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    Second opinion at John Hopkins Medical Center

    Decision Point

    cancer returned, with new lesions on lungs

    1 Comment