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    Endometrial (Uterine) cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Endometrial (Uterine) cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    4 Answers from the Community

    4 answers
    • nancibee's Avatar

      I survive by taking an "it is what it is" attitude from the get go. Having said that, I still had a great deal of anxiety. Rather than talk about it with family, I chose to keep a journal.
      As far as care goes, I am fortunate to be in the Kaiser Permanente system. They have top notch doctors. My GYN/Oncologist is a graduate of Harvard and focuses on gynecological cancers. Not only was my team chosen for me, they also easily communicated with my primary care physician and my neurologist. I went in for vaginal bleeding, was given the choice of an endometrial biopsy or a transvaginal ultrasound. I chose the former and found out I had an aggressive form of endometrial cancer. I was immediately referred to the surgeon who scheduled me for surgery a week hence.

      I did not have an easy time with the DaVinci surgery. I passed out on the way to the bathroom in the recovery room setting off an emergency response team alert. I needed a blood transfusion. At home, I had a high fever and lots of bleeding, wound up in the ER where they found out I had a large blood clot near my bladder. I don't post this experience on the boards because so many women have had an incredibly easy DaVinci and I don't want to be negative.

      Chemo was easy. I scheduled it for Fridays and made it to the Bark and Whine at the dog park in the evening and then went hiking on Saturday. No nausea whatsoever. VB radiation was easy as well. The hardest part of treatment was losing my eyebrows and eyelashes. i almost dressed up as Uncle Fester for Halloween. I am in a job search and I felt very self-concious when going on interviews.

      I am through everything now, but with UPSC one never feels "cured" even though I am told that I am NED. It's like waiting for the other shoe to drop. I am not so much worried about a recurrence as much as I am worried that it will not be caught until it is too late.

      I don't like to talk about my cancer with family and friends. When I am discussing it, I am thinking about it rather than enjoying the moment. I also do not understand why people I barely know think they have the right to ask me detailed questions. I do not ask them about their hemorrhoids.It is rude and spoils my day. I hike with large groups and when I did not have hair, strangers would want to discuss my cancer on the hike. I have gotten to the point where if someone brings it up, I just tell them my personal health is none of their business.

      If someone going through this alone, I strongly suggest joining meetup.com and finding folks with similar interests. I would find cancer support groups depressing. I would rather get out of the house and hike, walk, discuss books or other activities that take my mind off of my cancer. My oncologist tells me that I have done all of the hard work with treatment and now it is time to live a normal life. I am trying to take his advice.

      over 4 years ago
    • BuckeyeShelby's Avatar

      I started my journey during a hernia repair. My general surgeon is also a surgical oncologist, and he found nodes in the hernial sac. I was supposed to be in the hospital just overnight, but ended up being sent for internal ultrasound, a couple CT scans & a mammogram. I ended up inheriting my oncology team from the hospital where I had surgery. My medical oncology visited me in the hospital to discuss who I would be sent to for further testing. As my hospital is not the big cancer treatment center in town, I strongly considered a 2nd opinion w/the big name. Until I met my gynecologic oncologist. The first thing he said to me was: It's nice to meet you; I'm sorry you are here. Who needs a 2nd opinion? Later found out he's the head of oncology at my hospital. I still consider that fate played a role in the discovery & treatment of my cancer.

      I was pretty much on my own through treatment. I live alone, have no family nearby and my best friend is dealing w/her own chronic illness (diabetes). I stayed w/my best friend & her family for a few days after my hysterectomy, otherwise, I was on my own. Luckily, I did not have major side effects.

      One of the best resources I have is actually because of my insurance. My plan has a vendor who handles all chemo/radiation claims. Because this vendor wants to make sure that billing is correct and that the treatment is according to protocol, blah, blah, blah, I got my very own nurse case manager. I was able to ask a whole bunch of stupid questions to her -- if she thought it was important, she'd tell me to call the medical oncologist or ask him about it at our next appt, depending on how imminently important it was. Jami was a life saver. I usually corresponded via email instead of calling her, and because I tend to be incredibly sarcastic, she always got a hoot out of my correspondence.

      I completed treatment 1/10/13. My surgeon, who is retiring from his practice to spend more time on hospital duties, is convinced he got everything out during the hysterectomy. My medical oncologist concurs. My first post chemo scan will be in July, 1 year after my cancer was first discovered. And ironically, I believe the zodiac sign for that time of year is Cancer... Until I get that scan back, I don't think I'm fully convinced that I'm done at least for now.

      I hope this information is helpful.

      over 4 years ago
    • silvern8v's Avatar

      I found out I had cancer thanks to my brother and his girlfriend. My brother came up here from Arkansas because he wasn't getting the treatment he needed there fast enough. They did a C/T scan for a hernia and found a mass on one of his kidneys. Which scared me into going to the ER and getting myself checked because I hadn't been feeling well either and they found a large mass on my ovary. That was Oct. 31, had a second appointment on Nov. 3rd, and a full hysterectomy on Nov.11th. Two weeks later I had a post op meeting to get my staples removed from my incision and my oncologist told me that they found metastasis in one of my pelvic lymph nodes. Yes, cancer, a very aggressive one, in my uterus which has been removed. So, the only thing making the cancer Stage IIIC1 was the fact that it had metastasized in 1/15 pelvic lymph nodes that were removed during the hysterectomy. I was and still am hoping that the one lymph node was the ONLY one and it was removed, there are 6-700 in your body so there is no way to know for sure, I am still hoping we caught it early enough. Oncologist said he removed all the "visible" signs of cancer, but that if I don't do chemo it would very likely come back, the type of cancer I had was rare and aggressive, carcinosarcoma, but that my chances of beating it were good. I had a port insertion on Dec. 12th and started chemo on Dec. 15th. I would have to do 6 treatments of Carboplatin/Paclitaxol every 21 days, so that's 18 weeks, 4 and a half months. I was going to lose my hair, which was long, fell just above the lumbar region of my spine, but like one of my friends told me...life trumps hair every time. All I could do was hope for the best. I won't deny that I was and still am so scared, but not as scared as I am of not doing everything in my power to stay healthy. I should add that my brother had his left kidney and part of his bladder removed, no cancer outside of the removed tissue. So, his hernia saved us both.
      They told me 6-8 weeks recovery, but I have just started to feel really good in the last week or so, more like 90 days post hysterectomy. I felt like a gutted animal after the surgery, but got off the narcotic pain relievers as soon as I could. I then started to research to learn all that I could. The internet is an awful way to do that...negative, gloom and doom, especially for anyone with my diagnosis. Lots of statistics about how many die, but not much on survival. I did find some useful information, but stay away from the "statistics". Most helpful for me was that radiation did not improve the prognosis enough to warrant me taking such an aggressive approach. My oncologist said that ifosfomide was historically the "standard of care", but that the carbo/taxol was easier on the body and was becoming first line treatment. I decided on my own that I was only going to do chemotherapy only as my initial approach, my reasoning was that there was no way to radiate my circulating lymph fluid and I was not going to let them radiate my whole pelvis for one lymph node. The whole experience has restored my faith in humanity...I already had a great family, my Mom has been by my side through the whole process, but found that I also have a great group of friends, working for a great organization, and that there are so many resources for help if you seek them out.
      I got free wigs from the American Cancer Society, food assistance through the Dept. of Human Services, and a charity foundation I discovered through my social worker at the treatment center that paid three months of my rent. I signed up for a "Look good, feel better" make-up session activity through the ACS held at my treatment center.
      I have monitored my CA 125, a cancer antigen test, as I read that it is a measure of therapeutic response and can be an indicator of the return of the cancer for some. I was at a 110.4 before surgery, dropped to a 23 after my hysterectomy, and is currently at 16 after just two rounds of chemo. My cancer is likely to recur within a year...prognosis according to what I have seen is not good. I am trying to stay proactive (quit smoking cold turkey the day of my hysterectomy), stay positive, and stay hopeful. If you are a survivor...please continue to be a support to the newly diagnosed, pay it forward...there is never going to be enough "positive" out there for them if you don't. I will be staying here to do that myself...remission or not.

      over 2 years ago
    • BoiseB's Avatar

      My Dr. credits my survival as a miracle Uterine cancer was my second cancer. My first cancer was esophageal cancer stage IV. I was not supposed to survive that cancer but I did Uterine cancer was my second cancer with esophageal tumors present. Because two different cancers were present follow-up Chemo was not an option. In all likelihood one or the other cancer would be back within 18 months. It has been two years this next week since my hysterectomy. I am cancer free. I have tried to live as healthy as I know how. However I believe that I am a survivor because of the prayers of my faith community. Miracles do happen. But we must be proactive and we must have faith.

      over 2 years ago

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